Aa
AM cortisol 0.5? You're fine!
Hi. I'm confused and lightheaded and will try to make this concise, thank you!
On 5/14 my A.M. and P.M. serum cortisol both came up at 0.5mcg/dl. My GP started me on hydrocortisone while I waited to see an endocrinologist. GP said straight up that he has no idea how to treat adrenal stuff or dose hydrocortisone.
mid March: unusually thirsty and lightheaded
3/18: shortness of breath getting bad
4/1: headaches, trouble concentrating, forming proper sentences, feels like exercise every time I move
4/19: bad abdominal pain, upper left
4/26: lost about 10lbs by now (from 112lbs to 102)
5/2: gastric emptying study done, is fine
5/7: put on Megace for having lost 20lbs when I'd prefer to gain
5/13: urgent care for abdominal pain and fever
5/14: cortisol bloodwork done (0.5 at 8am and 4pm)
5/16: abdominal ultrasound done, comes back fine
5/17: start hydrocortisone, work up to 10mg BID
5/29: first endocrinologist appointment, no med changes or advice, orders tests
5/31: endo takes me off of hydrocortisone for labs, after 5 hours I'm in urgent care with BP in the 80s
6/1: AM cortisol and ACTH done, waited for letter
6/3: I call endo to see what I can do, because I've been in bed for weeks, and halfway there for months
6/4: get letter from endo saying:
"Your recent test results have abnormalities I expected. No action is needed. Please schedule regular appointments so I can monitor your medical conditions. Please continue with your same medication and dosage.
Cortisol, A.M. 2.7 mcg/dl, ACTH, Plasma, 11pg/ml."
I called and made an appointment a few weeks out, because I still don't have a diagnosis or know what to do with hydrocortisone, and am still feeling confusion, dizziness, weakness, panic, headaches, and abdominal pain about 2 hours after every dose of hydrocortisone. It helps a TON for about two hours.
I got a call back from the endocrinologist himself, telling me he doesn't know why I want an appointment so bad and saying not to bother coming back in at all. My GP had said the ACTH stim test was the big one we were waiting for. I asked endo if we'd done it, he said it's not necessary, and I'd need to come off hydrocortisone for at least a month to do it anyway.
Can somebody at least give me advice on being less dizzy, confused, and cranky in between doses? I know nothing about what is wrong with me or what this medication does, and reading is getting really hard.
Thanks very much!
On 5/14 my A.M. and P.M. serum cortisol both came up at 0.5mcg/dl. My GP started me on hydrocortisone while I waited to see an endocrinologist. GP said straight up that he has no idea how to treat adrenal stuff or dose hydrocortisone.
mid March: unusually thirsty and lightheaded
3/18: shortness of breath getting bad
4/1: headaches, trouble concentrating, forming proper sentences, feels like exercise every time I move
4/19: bad abdominal pain, upper left
4/26: lost about 10lbs by now (from 112lbs to 102)
5/2: gastric emptying study done, is fine
5/7: put on Megace for having lost 20lbs when I'd prefer to gain
5/13: urgent care for abdominal pain and fever
5/14: cortisol bloodwork done (0.5 at 8am and 4pm)
5/16: abdominal ultrasound done, comes back fine
5/17: start hydrocortisone, work up to 10mg BID
5/29: first endocrinologist appointment, no med changes or advice, orders tests
5/31: endo takes me off of hydrocortisone for labs, after 5 hours I'm in urgent care with BP in the 80s
6/1: AM cortisol and ACTH done, waited for letter
6/3: I call endo to see what I can do, because I've been in bed for weeks, and halfway there for months
6/4: get letter from endo saying:
"Your recent test results have abnormalities I expected. No action is needed. Please schedule regular appointments so I can monitor your medical conditions. Please continue with your same medication and dosage.
Cortisol, A.M. 2.7 mcg/dl, ACTH, Plasma, 11pg/ml."
I called and made an appointment a few weeks out, because I still don't have a diagnosis or know what to do with hydrocortisone, and am still feeling confusion, dizziness, weakness, panic, headaches, and abdominal pain about 2 hours after every dose of hydrocortisone. It helps a TON for about two hours.
I got a call back from the endocrinologist himself, telling me he doesn't know why I want an appointment so bad and saying not to bother coming back in at all. My GP had said the ACTH stim test was the big one we were waiting for. I asked endo if we'd done it, he said it's not necessary, and I'd need to come off hydrocortisone for at least a month to do it anyway.
Can somebody at least give me advice on being less dizzy, confused, and cranky in between doses? I know nothing about what is wrong with me or what this medication does, and reading is getting really hard.
Thanks very much!
Unbekannt & rumpled
I agree 100% that this thread is now confusing and that new threads be started.
May I also suggest the least everyone does is begin their sentences with the names of who they are addressing.
I agree 100% that this thread is now confusing and that new threads be started.
May I also suggest the least everyone does is begin their sentences with the names of who they are addressing.
Alas, yes, this has become a mixed bed of threads... it is so confusing...
Choogie girl- can you start a new thread?
Choogie girl- can you start a new thread?
I'm totally confused about who's replying to what now. Did this become three threads in one, somehow? I need to make a new one sometime. I've made very little progress, actually gotten worse over the last year, but I can't seem to get my stuff together enough to even ask the right questions.
Ah, yes, that part was me, not Rumpled. My cortisol was zero point five and I was started on HC by my primary, around a year ago now. I'll go start a new thread when I have the energy.
Ah, yes, that part was me, not Rumpled. My cortisol was zero point five and I was started on HC by my primary, around a year ago now. I'll go start a new thread when I have the energy.
Hi Rumpled,
You mentioned that you traveled to California to find a good doctor. May I ask who it is? I'm ready to go anywhere for help (and I have relatives in Cali).
Michele in Pittsburgh :)
You mentioned that you traveled to California to find a good doctor. May I ask who it is? I'm ready to go anywhere for help (and I have relatives in Cali).
Michele in Pittsburgh :)
First, you should not base anything, IMHO layman opinion on single afternoon test - it should be several tests and at times considered diagnostic (which, sadly, are not afternoon). 8am fasting for bloods, 24 hour urine tests, ACTH stim test (the gold standard) plus antibody testing and other testing like sodium, potassium, renin aldosterone, and other hormones - to rule out other diseases and as well find source.
And the dependent comment is rather... silly? If you need it for life, you need it! I am on it for life (my situation is rather different since mine were surgically removed) but anyone with Addison's or AI would of course take the replacement dose for life - otherwise you are just not safe and don't have a quality of life?! I would find a doctor that knows a bit more than the current one - and knows when and how to test.
And the dependent comment is rather... silly? If you need it for life, you need it! I am on it for life (my situation is rather different since mine were surgically removed) but anyone with Addison's or AI would of course take the replacement dose for life - otherwise you are just not safe and don't have a quality of life?! I would find a doctor that knows a bit more than the current one - and knows when and how to test.
my university center endo was against putting me on hc for low cortisol 2.4 afternoon test because he said you become dependent on it for life?
am I already be dependent on it and have adrenal damage from all the prednisone I took for asthma and daily inhalers? I feel so tired and think it might be more than just sleep apnea?
am I already be dependent on it and have adrenal damage from all the prednisone I took for asthma and daily inhalers? I feel so tired and think it might be more than just sleep apnea?
I am not a doc or lawyer either - and I don't profess to be perfect (as I am a patient too, and I don't feel well every day).
My doc is fine - those levels did not relate to me? And I know people can pass a stim test and still be borderline.
My doc is fine - those levels did not relate to me? And I know people can pass a stim test and still be borderline.
Low cortisol certainly can contribute to anxiety. The HPA axis senses that there is not enough free cortisol and, in response, begins releasing noradrenaline and other "speedy" hormones to compensate. Also, your endo is bordering on malpractice (not sure where you live, and I am not an attorney nor am I a doctor), but whether your cortisol was 5 or .5 that is TOO low. Also, to get an accurate stim test without the worries of going without the steroids that it sounds like you need, a well-informed endo would put you on dexamethasone (another steroid) for a couple of weeks. It does not work as quickly as hydrocortisone, but it stays in your system longer. Plus, it does not interfere with the lab assays--meaning that you can get an accurate pic of what your actual cortisol is. Good luck--and do NOT let the endo push you around. I'm convinced that most endocrinologists hit themselves in the head with a brick as soon as they finish med school, thereby forgetting anything they've learned. Also have hi or her check renin and aldosterone. If you "pass" the stim test but still have low ACTH and AI-type symptoms, you very well could have secondary adrenal insufficiency...
You mention:
" Right now I am trying the thyroid low cortisol route to see if things improve. So far, I am up to 210 mgs of NP thyroid--it is similar to armour--just not as nasty tasting--and I have no sighns of having too much thyroid.
I have seen psychiatrists, psychologist, counselors, you name it---i even resorted to ECT once. Since antidepressants do not help, I am beginning to think it may be partly to having had an undertreated thyroid for so many yyears of my life".
It seems like you could have one of many conditions. If that was the feeling I received from visiting so many physicians then I would ask myslef ONE question above ALL else
AM I HAPPY WITH MY CURRENT ENDOCRINOLOGIST
If he/she is great then you would have certainty in what condition you have.
You say"
"I did ask the psychiatrist about dysthemia, but he didn't think that was my problem---he really seemed to want to diagnose me with bipolar NOS-----but I have discovered I don't fit the symptoms---they tried to diagnose my son withit---but he doesn't fit the symptoms, either---but they REALLY tried to push it with him."
It seems to me that the shrink is lousy. Move on to someone else. No shame in dumping an uniformed or incompetent so called 'professional'.
You say
"I think I have too many underlying issues---besides the health issues---to ever be able to resolve them all!!! My hubby used to say he thought that things would get better when I got better. When I pointed out that physically I may never get better, he said that he woulod learn to deal with it----I figure he better learn to deal with it NOW".
Before we explore those I feel that as stated earlier, getting a great endo and now a great shrink will be the surest and quickest route to good health
" Right now I am trying the thyroid low cortisol route to see if things improve. So far, I am up to 210 mgs of NP thyroid--it is similar to armour--just not as nasty tasting--and I have no sighns of having too much thyroid.
I have seen psychiatrists, psychologist, counselors, you name it---i even resorted to ECT once. Since antidepressants do not help, I am beginning to think it may be partly to having had an undertreated thyroid for so many yyears of my life".
It seems like you could have one of many conditions. If that was the feeling I received from visiting so many physicians then I would ask myslef ONE question above ALL else
AM I HAPPY WITH MY CURRENT ENDOCRINOLOGIST
If he/she is great then you would have certainty in what condition you have.
You say"
"I did ask the psychiatrist about dysthemia, but he didn't think that was my problem---he really seemed to want to diagnose me with bipolar NOS-----but I have discovered I don't fit the symptoms---they tried to diagnose my son withit---but he doesn't fit the symptoms, either---but they REALLY tried to push it with him."
It seems to me that the shrink is lousy. Move on to someone else. No shame in dumping an uniformed or incompetent so called 'professional'.
You say
"I think I have too many underlying issues---besides the health issues---to ever be able to resolve them all!!! My hubby used to say he thought that things would get better when I got better. When I pointed out that physically I may never get better, he said that he woulod learn to deal with it----I figure he better learn to deal with it NOW".
Before we explore those I feel that as stated earlier, getting a great endo and now a great shrink will be the surest and quickest route to good health
I son't think I have fibromyalgia--I think it is a symptom of something else. I spent 4 days in the ER getting treated for staph infection this summer---and that is exactly what one of the nurses told me he thought about it, also.
Right now I am trying the thyroid low cortisol route to see if things improve. So far, I am up to 210 mgs of NP thyroid--it is similar to armour--just not as nasty tasting--and I have no sighns of having too much thyroid.
I have seen psychiatrists, psychologist, counselors, you name it---i even resorted to ECT once. Since antidepressants do not help, I am beginning to think it may be partly to having had an undertreated thyroid for so many yyears of my life.
I did ask the psychiatrist about dysthemia, but he didn't think that was my problem---he really seemed to want to diagnose me with bipolar NOS-----but I have discovered I don't fit the symptoms---they tried to diagnose my son withit---but he doesn't fit the symptoms, either---but they REALLY tried to push it with him.
I think I have too many underlying issues---besides the health issues---to ever be able to resolve them all!!! My hubby used to say he thought that things would get better when I got better. When I pointed out that physically I may never get better, he said that he woulod learn to deal with it----I figure he better learn to deal with it NOW.
Also, when I learned how much stress can affect you mentally and physically, I told him that if we did not change the way things were in our relationship that I was NEVER going to get better--I think he realized I was right. He seems to be making more efforts recently to work with me--and when I chewed him out the other day about something he did that I felt was innappropriate----at least in the time and place I talked to him about it---he said it was fine and that he probably deserved it. (he did)
Right now I am trying the thyroid low cortisol route to see if things improve. So far, I am up to 210 mgs of NP thyroid--it is similar to armour--just not as nasty tasting--and I have no sighns of having too much thyroid.
I have seen psychiatrists, psychologist, counselors, you name it---i even resorted to ECT once. Since antidepressants do not help, I am beginning to think it may be partly to having had an undertreated thyroid for so many yyears of my life.
I did ask the psychiatrist about dysthemia, but he didn't think that was my problem---he really seemed to want to diagnose me with bipolar NOS-----but I have discovered I don't fit the symptoms---they tried to diagnose my son withit---but he doesn't fit the symptoms, either---but they REALLY tried to push it with him.
I think I have too many underlying issues---besides the health issues---to ever be able to resolve them all!!! My hubby used to say he thought that things would get better when I got better. When I pointed out that physically I may never get better, he said that he woulod learn to deal with it----I figure he better learn to deal with it NOW.
Also, when I learned how much stress can affect you mentally and physically, I told him that if we did not change the way things were in our relationship that I was NEVER going to get better--I think he realized I was right. He seems to be making more efforts recently to work with me--and when I chewed him out the other day about something he did that I felt was innappropriate----at least in the time and place I talked to him about it---he said it was fine and that he probably deserved it. (he did)
You mention FIBROMYALGIA.
For what it's worth, the nurses I respect the most consider such a diagnosis as BS. They claim that physicians will lable something as FIBROMYALGIA when they dont known what a patient has and every illness or symptom should be treated after its cause is properly identified.
You mention that your husband came out of a crappymarriage--where he and his ex were both self-centered. WOW. What a combination! Two self centered people in the one marriage. No wonder THAT didnt last :-)
You mention the medications you took for anxiety and depression. Did you see a psychologist or psychiatrist? Did you resolve the underlying isues?
You say you "just never felt like I was following through with things i would start--I'd just lose interest or energy". Did you consider you may have DYSTHEMIA? Which is very common and is a low level form of depression (which many folk exhibit for decades) and for which there is no medication.
It self corrects very often.
You say "I have been thinking that I need to learn to talk much less--but this would involve almost a major personality change for me---i have always been a talker" . Me too. Forget that ppl say they love a big talker. Most ppl love a great listener and being a great listener is a great asset to have in ALL fields of endevour.
You indicate that your husband has some depression issues going on. He must get help from someone like a psychologist or he will not improve. I know ppl who refuse help and they become delusional andvery introverted as a result.
Interesting what you say on neuropathy. Mine too has no explanation. Looks liek I will have to investigate the matter more and more. You mention arthritis and I was checked for that, but that doesnt explain it.
Thanks :-)
I think any problems ihave nwo with wrist pain and cramping are most likely related to the generalized pain issue i have---we've been calling it fibromyalgia for years--but i don't have an official diagnosis--only chronic pain. I think my wrists tend to flare up with weather changes just like arthritis does or old wounds such as a broken bone from your childhood starts to ache when you're 50. i broke my tailbone having one of my kids and it used to ache in the winter sometimes for several years after i had her (rarely hurts me now) but, I always thought it was funny when it hurt---the idea of having arthritis in your bum iwas just funny to me---I know, i have a weird sence of humor.
My husband came out of a crappymarriage--where he and his ex were both self-centered---he was well aware of the mistakes he made---he told me about the mistakes he made and what he thought it took to make a good marriage. AND, in the early part of our marriage he actually did them--he wasn't perfect of course, but he put in the effort---so i know he knows what it takes to make a good marriage--just like you have seen dysfunctional marriages, he knew he had screwed his marriage up and didn't want to do it again.
I don't think my weakness is excessive in my hands--and there is none in my feet. I probably had stronger hands than most before the carpal tunnel---i could open almost any jar when other people couldn't---but i played the piano alot----i think it gave me stronger fingers and hands.
I have taken more medications for anxiety and depression than i could even count---I even resorted to ECT at one time in desperation---but only had 3 treatments. I do not tolerate antidepresssants for some reason. The side effects are more than i can deal with. They used to have to start me on lower than normal starting doses and titrate them up over a longer period of time--and if i was lucky enough to find one that worked---it was usually at a lower than normal dosage---and then it would usually quit working within a few months.
They tried to label me bipolar NOS----but i have never been manic in my life, and the medications that treat bipolar depression didn't work on me---i think they called that one wrong. Once every blue moom I would have a really good day and accomplish alot of things. i think they interpreted that to be a "manic " episode. i actually feel like I was functioning more like a normal, undepressed and organized mother on those days. i remember that i used to thing that if I could feel like that most of the time i could get so much done.
Don't get me wrong, I did manage to get things done--i did alot of canning and sewing and gardening when i had a houseful of little twins---at one point I had 3 children 2yrs old and under.(twins born a month after the older one turned 2). I just never felt like I was following through with things i would start--I'd just lose interest or energy. some days I felt like i had lead running through my veins. I think that whatever i have going on now has been comming on for a long time----or else I have had it to a certain degree my whole life----and the stress of my life just brought it to the forefront.
I have been thinking that I need to learn to talk much less--but this would involve almost a major personality change for me---i have always been a talker----but, there have been people that have told me that my talking alot is one of the things they love about me---I have also had people tell me that when they moved into our church, that either I was the only person that would talk to them, or that I was the only person they felt comfortable talking to---because instead of just generic greetings---I actually TALKED to her. My husband just doesn't like the things i talk about. too much medical talk---true to a certain extent--but he has gotten so set against it that ANY medical talk makes him angry. He forgets the years he played basketball and so many of his conversations were dominated by basketball talk.
I've also had to remind him that before i had health problems, he used to cut me off and tell me he wasn't interested in what i was trying to talk about---and it wasn't any particular thing--just conversation. Also, he has only had an issue about me "talking too much" in the last two years. I've talked alot for the 24 1/2 years we have been married---and he never complained that i talked too much--or felt like he had to protect other peole from me talking too much.
When we dated, that is almost all we did---we talked for hours.
I think he understands that I am not trying to interupt him--but your idea about asking him to let me know when he is done is a good idea.
I definitely think that my husband has some dep[ression isssues going on, but getting him to get help for it is another issue--even though he admits he thinks he is depressed. It would take someone else he respects to get him to get some help.
I have a friend who has pain in her fingertips---they have not been able to find any cause for it. it is neuropathy--but no explaination for why she has it, except that she does have alot of the symptoms of polycystic ovarian syndrome, which is an endocrine problem and can be related to diabetes---and diabetes can cause neuropathy.
i get neuropathy in various spots on my body. Most recent one was a finger--started out feeling like an arthritic joint, but the pain moved to the bone between the two joints. Hurt alot if pressed hard---but the skin over the top of it was numb if touched lightly. It lasted a month or two---and then went away. i have had this happen a number of times--but they always go away---but, i also know that i have endocrine problems.
Might be something for you to check in to.
My husband came out of a crappymarriage--where he and his ex were both self-centered---he was well aware of the mistakes he made---he told me about the mistakes he made and what he thought it took to make a good marriage. AND, in the early part of our marriage he actually did them--he wasn't perfect of course, but he put in the effort---so i know he knows what it takes to make a good marriage--just like you have seen dysfunctional marriages, he knew he had screwed his marriage up and didn't want to do it again.
I don't think my weakness is excessive in my hands--and there is none in my feet. I probably had stronger hands than most before the carpal tunnel---i could open almost any jar when other people couldn't---but i played the piano alot----i think it gave me stronger fingers and hands.
I have taken more medications for anxiety and depression than i could even count---I even resorted to ECT at one time in desperation---but only had 3 treatments. I do not tolerate antidepresssants for some reason. The side effects are more than i can deal with. They used to have to start me on lower than normal starting doses and titrate them up over a longer period of time--and if i was lucky enough to find one that worked---it was usually at a lower than normal dosage---and then it would usually quit working within a few months.
They tried to label me bipolar NOS----but i have never been manic in my life, and the medications that treat bipolar depression didn't work on me---i think they called that one wrong. Once every blue moom I would have a really good day and accomplish alot of things. i think they interpreted that to be a "manic " episode. i actually feel like I was functioning more like a normal, undepressed and organized mother on those days. i remember that i used to thing that if I could feel like that most of the time i could get so much done.
Don't get me wrong, I did manage to get things done--i did alot of canning and sewing and gardening when i had a houseful of little twins---at one point I had 3 children 2yrs old and under.(twins born a month after the older one turned 2). I just never felt like I was following through with things i would start--I'd just lose interest or energy. some days I felt like i had lead running through my veins. I think that whatever i have going on now has been comming on for a long time----or else I have had it to a certain degree my whole life----and the stress of my life just brought it to the forefront.
I have been thinking that I need to learn to talk much less--but this would involve almost a major personality change for me---i have always been a talker----but, there have been people that have told me that my talking alot is one of the things they love about me---I have also had people tell me that when they moved into our church, that either I was the only person that would talk to them, or that I was the only person they felt comfortable talking to---because instead of just generic greetings---I actually TALKED to her. My husband just doesn't like the things i talk about. too much medical talk---true to a certain extent--but he has gotten so set against it that ANY medical talk makes him angry. He forgets the years he played basketball and so many of his conversations were dominated by basketball talk.
I've also had to remind him that before i had health problems, he used to cut me off and tell me he wasn't interested in what i was trying to talk about---and it wasn't any particular thing--just conversation. Also, he has only had an issue about me "talking too much" in the last two years. I've talked alot for the 24 1/2 years we have been married---and he never complained that i talked too much--or felt like he had to protect other peole from me talking too much.
When we dated, that is almost all we did---we talked for hours.
I think he understands that I am not trying to interupt him--but your idea about asking him to let me know when he is done is a good idea.
I definitely think that my husband has some dep[ression isssues going on, but getting him to get help for it is another issue--even though he admits he thinks he is depressed. It would take someone else he respects to get him to get some help.
I have a friend who has pain in her fingertips---they have not been able to find any cause for it. it is neuropathy--but no explaination for why she has it, except that she does have alot of the symptoms of polycystic ovarian syndrome, which is an endocrine problem and can be related to diabetes---and diabetes can cause neuropathy.
i get neuropathy in various spots on my body. Most recent one was a finger--started out feeling like an arthritic joint, but the pain moved to the bone between the two joints. Hurt alot if pressed hard---but the skin over the top of it was numb if touched lightly. It lasted a month or two---and then went away. i have had this happen a number of times--but they always go away---but, i also know that i have endocrine problems.
Might be something for you to check in to.
Hi
I am back. I have time between seminar sessions.
Let's see.... you ask "what profession are you in--or are you just a very observant people watcher?" I think I am the latter. I am an economist by training but know many dysfunctional marriages, so I have (to a degree) learned what works in a marriage and what doesn't. I also saw a psychologist years ago when I was dating a narcisstic woman.
As to your hands, you say that problems predated the surgery. Ok then, that means any post surgical problems are in part not related to carpal tunnel.
You mention you cannot open sealed jars. Do you have weaknesses in both hands or feet? I ask because if yes, then something else needs to be investigated as the problem.
You say "I've had alot of depression and anxiety--and I am probably a little more of a needy person than I would like to be". Have you taken meds for this?
You say "I don't know if my jumping in to voice my opinion is new or not. I grew up in a very large family, mostly girls, and when we got together we had a tendency to talk over each other--so in that way, it is probably not new--but It was mostly one visit with someone, when I jumped in angrily, when it was supposed to be his turn to speak that was the final straw". I was the same. I learned over time two things that make life more pleasurable. First, you do not always have to talk. Sometimes it's best to stay quiet (even if it feels unnatural). Second, I learned patience. Learn
to talk when it is your turn. Wit for your turn. Speak briefly and softly. It works for the most successful politicians!
You talk about your husband thinking you are interrupting. I suggest
you ask that whenever he speaks to make it obvious when he is done so that is your cue to ask a question or seek clarification.
You say your husband may be anemic. Given the symptoms you list I suggest he get tested (blood work) BUT those symptoms can also signify depression (mild or medium) and for that a psychiatrist is needed for a diagnosis.
For many years I was like that. work, eat, sleep, stay home and preferred not to go out. I was diagnosed with very mild depression, changed jobs and improved. The job I had made me stale, angry and frustrated and this carried over into every aspect of my life. Maybe yr husband is similar?
You ask 'What is happening with your wrist that has you concerned'? Well I had a tumor removed but now it hurts to type more than a few lines.
The pain is only at the fingertips and an xray showed nothing.
I wonder if an mri will show anything. I hope it is not more serious ie. related to the brain because that can take a while to diagnose and who knows what if anything can be done to treat that.
The scar you mention on the right wrist is like mine, small.
I am back. I have time between seminar sessions.
Let's see.... you ask "what profession are you in--or are you just a very observant people watcher?" I think I am the latter. I am an economist by training but know many dysfunctional marriages, so I have (to a degree) learned what works in a marriage and what doesn't. I also saw a psychologist years ago when I was dating a narcisstic woman.
As to your hands, you say that problems predated the surgery. Ok then, that means any post surgical problems are in part not related to carpal tunnel.
You mention you cannot open sealed jars. Do you have weaknesses in both hands or feet? I ask because if yes, then something else needs to be investigated as the problem.
You say "I've had alot of depression and anxiety--and I am probably a little more of a needy person than I would like to be". Have you taken meds for this?
You say "I don't know if my jumping in to voice my opinion is new or not. I grew up in a very large family, mostly girls, and when we got together we had a tendency to talk over each other--so in that way, it is probably not new--but It was mostly one visit with someone, when I jumped in angrily, when it was supposed to be his turn to speak that was the final straw". I was the same. I learned over time two things that make life more pleasurable. First, you do not always have to talk. Sometimes it's best to stay quiet (even if it feels unnatural). Second, I learned patience. Learn
to talk when it is your turn. Wit for your turn. Speak briefly and softly. It works for the most successful politicians!
You talk about your husband thinking you are interrupting. I suggest
you ask that whenever he speaks to make it obvious when he is done so that is your cue to ask a question or seek clarification.
You say your husband may be anemic. Given the symptoms you list I suggest he get tested (blood work) BUT those symptoms can also signify depression (mild or medium) and for that a psychiatrist is needed for a diagnosis.
For many years I was like that. work, eat, sleep, stay home and preferred not to go out. I was diagnosed with very mild depression, changed jobs and improved. The job I had made me stale, angry and frustrated and this carried over into every aspect of my life. Maybe yr husband is similar?
You ask 'What is happening with your wrist that has you concerned'? Well I had a tumor removed but now it hurts to type more than a few lines.
The pain is only at the fingertips and an xray showed nothing.
I wonder if an mri will show anything. I hope it is not more serious ie. related to the brain because that can take a while to diagnose and who knows what if anything can be done to treat that.
The scar you mention on the right wrist is like mine, small.
Hi, I can't reply at this time as I am in a seminar - without email access - for a week. I'll get back to you when I can.
You've never been married---and you are this insightful????? What profession are you in--or are you just a very observant people watcher?
As far as my hands being weaker--they were losing strength before I had the surgery and i have never done any exercises to strengthen them. Probably if i would just take some time to play the piano every day I could kill two birds with one stone---I'd build up strength back in my hands--and I'd be able to play like I could when I was younger--and I wouldn't blunder through the hymns at church!! I know if carpal tunnel goes on long enough that you can get permanent nerve damage and never get some of the strength back---but i don't think I got to that point.
I used to be able to open just about any sealed jar there was----i can't do that anymore---time for the rubber circles!!LOL!! Maybe ALOT weaker is too strong--they are weaker, but it is not a problem for me---my handwriting was crappy before---so that's not a major loss to have it a little worse.
As far as different needs in a marriage----glad to hear you say that is a common thing to happen over time. My hubby and I have both discussed that our most important goal should be to be more worried about each others' happiness than we are about our own----it just isn't as easy to put it into practice s it is to say it.. Also, there have been alot of changes in my family lately---and I've had alot of depression and anxiety--and I am probably a little more of a needy person than I would like to be.
However, I am making efforts to work on my health, which includes the anxiety and depression--hopefully the neediness will lessen over time.
I think the timeline is a good idea---but I think it would be better to wait a little to suggest it, and I think it would be better if the sounding board were the one to suggest it.
I don't know if my jumping in to voice my opinion is new or not. I grew up in a very large family, mostly girls, and when we got together we had a tendency to talk over each other--so in that way, it is probably not new--but It was mostly one visit with someone, when I jumped in angrily, when it was supposed to be his turn to speak that was the final straw.
One thing I do, that my husband often interprets as me interupting him, is that when he takes a break in a sentence, I will sometimes try and ask him a question. he yells and says I'm interrupting, when actually I am just trying to clarify something and make sure I am following whatever he is telling me. I explained this to him recently---I think he is starting to get it.
I like the idea of making a list of issues. The sounding board has a wife that is also starting to have some health issues---and I know in the past, when he and my husband would visit, the sounding board would mention things that his own wife did that bothered him---I think it made my husband realize that other people have issues that they don't always agree on in their marriages, too----hopefully, if they continue to talk that openly, he will also realize that differences and disagreements don't have to lead to excessive anger.
We were experimenting with something last night that can indicate that a person might be anemic---and it looks like my hubby might be anemic---this could help explain his lack of wanting to do anything but get in bed, eat, and watch TV when he gets home. So---I'm hoping that with some counseling from a good sounding board, some work on his thyroid, getting his iron up---and hopefully getting him to address his depression---maybe things will improve.
Actually, we've been doing ok recently, I never know when things are going to go sour unexpectantly, but they are not as bad when they do as they used to be.
Also, he has actually apologized to me a couple of times over the last several weeks--real apologies--not dripping with sorrow, but not "i'm sorry, but this is why you deserved it", either. This is real progress for him!!
Thanks again for your suggestions!
What is happening with your wrist that has you concerned? I had my surgeries done 6 weeks apart. our orthoped did such a good job, you can't even tell i had surgery on my left wrist--the scar is right inside one of the normal folds. On my right wrist you can see part of the tiny scar if you look for it, but it also has just a little adhesion that will pull down if you pull the skin to the side.
I think that any wrist pain and cramping that I get now and then is related to whatever is going on with me now and not with carpal tunnel.
As far as my hands being weaker--they were losing strength before I had the surgery and i have never done any exercises to strengthen them. Probably if i would just take some time to play the piano every day I could kill two birds with one stone---I'd build up strength back in my hands--and I'd be able to play like I could when I was younger--and I wouldn't blunder through the hymns at church!! I know if carpal tunnel goes on long enough that you can get permanent nerve damage and never get some of the strength back---but i don't think I got to that point.
I used to be able to open just about any sealed jar there was----i can't do that anymore---time for the rubber circles!!LOL!! Maybe ALOT weaker is too strong--they are weaker, but it is not a problem for me---my handwriting was crappy before---so that's not a major loss to have it a little worse.
As far as different needs in a marriage----glad to hear you say that is a common thing to happen over time. My hubby and I have both discussed that our most important goal should be to be more worried about each others' happiness than we are about our own----it just isn't as easy to put it into practice s it is to say it.. Also, there have been alot of changes in my family lately---and I've had alot of depression and anxiety--and I am probably a little more of a needy person than I would like to be.
However, I am making efforts to work on my health, which includes the anxiety and depression--hopefully the neediness will lessen over time.
I think the timeline is a good idea---but I think it would be better to wait a little to suggest it, and I think it would be better if the sounding board were the one to suggest it.
I don't know if my jumping in to voice my opinion is new or not. I grew up in a very large family, mostly girls, and when we got together we had a tendency to talk over each other--so in that way, it is probably not new--but It was mostly one visit with someone, when I jumped in angrily, when it was supposed to be his turn to speak that was the final straw.
One thing I do, that my husband often interprets as me interupting him, is that when he takes a break in a sentence, I will sometimes try and ask him a question. he yells and says I'm interrupting, when actually I am just trying to clarify something and make sure I am following whatever he is telling me. I explained this to him recently---I think he is starting to get it.
I like the idea of making a list of issues. The sounding board has a wife that is also starting to have some health issues---and I know in the past, when he and my husband would visit, the sounding board would mention things that his own wife did that bothered him---I think it made my husband realize that other people have issues that they don't always agree on in their marriages, too----hopefully, if they continue to talk that openly, he will also realize that differences and disagreements don't have to lead to excessive anger.
We were experimenting with something last night that can indicate that a person might be anemic---and it looks like my hubby might be anemic---this could help explain his lack of wanting to do anything but get in bed, eat, and watch TV when he gets home. So---I'm hoping that with some counseling from a good sounding board, some work on his thyroid, getting his iron up---and hopefully getting him to address his depression---maybe things will improve.
Actually, we've been doing ok recently, I never know when things are going to go sour unexpectantly, but they are not as bad when they do as they used to be.
Also, he has actually apologized to me a couple of times over the last several weeks--real apologies--not dripping with sorrow, but not "i'm sorry, but this is why you deserved it", either. This is real progress for him!!
Thanks again for your suggestions!
What is happening with your wrist that has you concerned? I had my surgeries done 6 weeks apart. our orthoped did such a good job, you can't even tell i had surgery on my left wrist--the scar is right inside one of the normal folds. On my right wrist you can see part of the tiny scar if you look for it, but it also has just a little adhesion that will pull down if you pull the skin to the side.
I think that any wrist pain and cramping that I get now and then is related to whatever is going on with me now and not with carpal tunnel.
You say " I think my hands are a lot weaker".
I do not think this is the best outcome from surgery. Have you seen a hand therapist who can show you exercises to improve your hand function?
You say: " i think that maybe i just NEED more out of the relationship than he does---does that make sense?"
Yes it makes PERFECT sense. I am single and know some friends who entered marriage wanting the same things but over time developed different needs. THIS is common. As I am not a counselor I don't know how to deal with this. But it should be addressed.
You say "... I think it would be a start that could build into something more" Agreed. A start is good. ANY start is good.
You say "I think we need to visit together, also, but I think my husband needs a little time by himself first, and to gain some trust in me again".
Perhaps, but you should set a time line by when certain things are accomplished such as when you're both attending counseling together and by when results from those counseling sessions are realized or begun to be realized.
You say "However, I think this person (let's call him the SOUNDING BOARD) should also visit with me alone occasionally during the period of time he is visiting with my husband alone---he needs to hear both sides".
Definitely! Meeting separately initially is a great idea.
You say "I should be able to wait a few minutes and take my turn to speak if I feel like he isn't telling things like they really are".
Tell me is this quick to jump and voice your opinion something new or have you always behaved this way?
You say " husband is depressed---but he really isn't doing anything to actively try and help it---he needs to take responsibility for that".
Without treatment I cannot see how anyone can triumph over depression. I have 48yo friend who is depressed over a guy who is not interested in her. She has been like this for 3 yrs. This has resulted in her gaining weight, losing friends and losing her job and STILL she doesn't get it! get help I shout to her, but I may as well talk to a brick wall!
You say "I think short regular visits with my husband and occasional visits with me could lead to us being able to meet together with this leader and friend."
Yes maybe, try for regular visits of yr husband and the Sounding Board"; of you and the hearing board and BOTH YOU AND HUSBAND and the Sounding Board.
Before visiting him, ideally prepare a list of issues (make 2 copies one for you and one for the SOUNDING Board) to talk about in advance of meeting him. The list should be divided along two lines:
Issues relating to me and my illness; and
Issues relating to me and my husband
The best that can happen is that you will leave a copy with the Sounding Board and he will raise those topics with yr husband when they meet.
I think I have gained all my wrist function, but I think my hands are a lot weaker. i play the piano at church and seem to mess up--but i rarely play anymore--i think I am just out of practice. My handwriting seems to be a little sloppier since the surgery. I still occasionally get some hand cramping, too---i think it is probably weather related.
I think my husband is dedicated to staying in the marriage and i think he wants it to be better, too----i think that maybe i just NEED more out of the relationship than he does---does that make sense? I need conversation and to be able to talk about problems---even if it isn't the most convenient time---but I also need to not hit him with things the moment he walks in the door.
Funny thing about the person I said I felt we could visit with. We were talking about it the other day, and somehow it came up who he thought could help us--and he mentioned the very person I was thinking about---and the man has already volunteered to visit with my husband every couple of weeks for about 15 minutes. i know that is not a lot of time, but I think it would be a start that could build into something more. My husband really likes him and trusts him--and his wife and I have been friends for years.
I think we need to visit together, also, but I think my husband needs a little time by himself first, and to gain some trust in me again. However, I think this person should also visit with me alone occasionally during the period of time he is visiting with my husband alone---he needs to hear both sides.
I did have a tendency to get really angry when we met together with people before, and he always felt "tattled" on. He probably felt like he was being attacked----and in a way, I probably was attacking everything i felt like he had said and done wrong--it was easier to do it because there was another person there, and he wasn't going to start shouting obscenities at me or anything---so I have to take some of the blame for him not wanting to meet with someone at the same time as me.
Now that he has come clean with what he has done and said, there is nothing to hide---and I can see the importance of me not getting angry---and learning to take my turn to speak---instead of interrupting my husband while he is talking, because I feel he isn't telling things right.
I should be able to wait a few minutes and take my turn to speak if I feel like he isn't telling things like they really are.
I agree with you that people change---I certainly have. I am not able to do a lot of the things that I used to do---but I am taking steps to try and get myself well. i think my husband is depressed--he knows he is depressed---but he really isn't doing anything to actively try and help it---he needs to take responsibility for that.
I definitely agree that we need to meet together with this leader at some point. This is what has really bothered me about the way things have been done so far. Not just that we were not meeting with someone at the same time---but that the person meeting with my husband only visited with me twice, and then never visited with me again----and he has not even been consistent with visiting with my husband.
I think short regular visits with my husband and occasional visits with me could lead to us being able to meet together with this leader and friend.
i really appreciate your insight on all this.
Thanks.
I think my husband is dedicated to staying in the marriage and i think he wants it to be better, too----i think that maybe i just NEED more out of the relationship than he does---does that make sense? I need conversation and to be able to talk about problems---even if it isn't the most convenient time---but I also need to not hit him with things the moment he walks in the door.
Funny thing about the person I said I felt we could visit with. We were talking about it the other day, and somehow it came up who he thought could help us--and he mentioned the very person I was thinking about---and the man has already volunteered to visit with my husband every couple of weeks for about 15 minutes. i know that is not a lot of time, but I think it would be a start that could build into something more. My husband really likes him and trusts him--and his wife and I have been friends for years.
I think we need to visit together, also, but I think my husband needs a little time by himself first, and to gain some trust in me again. However, I think this person should also visit with me alone occasionally during the period of time he is visiting with my husband alone---he needs to hear both sides.
I did have a tendency to get really angry when we met together with people before, and he always felt "tattled" on. He probably felt like he was being attacked----and in a way, I probably was attacking everything i felt like he had said and done wrong--it was easier to do it because there was another person there, and he wasn't going to start shouting obscenities at me or anything---so I have to take some of the blame for him not wanting to meet with someone at the same time as me.
Now that he has come clean with what he has done and said, there is nothing to hide---and I can see the importance of me not getting angry---and learning to take my turn to speak---instead of interrupting my husband while he is talking, because I feel he isn't telling things right.
I should be able to wait a few minutes and take my turn to speak if I feel like he isn't telling things like they really are.
I agree with you that people change---I certainly have. I am not able to do a lot of the things that I used to do---but I am taking steps to try and get myself well. i think my husband is depressed--he knows he is depressed---but he really isn't doing anything to actively try and help it---he needs to take responsibility for that.
I definitely agree that we need to meet together with this leader at some point. This is what has really bothered me about the way things have been done so far. Not just that we were not meeting with someone at the same time---but that the person meeting with my husband only visited with me twice, and then never visited with me again----and he has not even been consistent with visiting with my husband.
I think short regular visits with my husband and occasional visits with me could lead to us being able to meet together with this leader and friend.
i really appreciate your insight on all this.
Thanks.
Hi, sorry I was out of touch for a few days.
You mention a chap that is not a counselor but whose judgement you and your husband respect. That is good. By all means see him. But on a regular basis. There is no point seeing someone like that every month or every 6 weeks. You need continuous interaction, say weekly or fortnightly.
You keep saying you want to work through your issues with your husband.Is he as dedicated to resolving the problems as you are? It seems to me that you are doing ALL the heavy lifting regarding resolving the emotional issues in your marriage. You already confessed to taking the lead in sex. I wonder if you wouldnt be better off with a guy who was committed to you as you are to him (or the marriage?)
You say "I believe in my husband, and I have seen him at his best--i know what he is capable of". You know what he WAS capable of. People change.
If you agree to your husband meeting someone then he MUST agree to have you there as well. There is NO point for him to be counseled n you absence as he could easily misstate the true relations of your marriage and then be recommended a path that is SO WRONG as it assumes he was telling the truth.
You are talking of your MARRIAGE. This is an enterprise involving more than your husband. Doesnt he "get" that? Your son's analogy is not a good one. Alcoholics have a problem that involves them and their liquor. BOTH are talked about in AA meetings. I am sure he talks about you when he discusses the marriage BUT if you are not there, how does anyone know if he is talking the truth or talking what he feels?
You say and I agree with
"It may not be quite as good as a professional counselor---but it's alot better than nothing---which is what i would get if I tried to get him to go to a counselor---but, then again, it might even be better than a counselor, because we have known and loved and trusted this man for probably 14 years----as both a leader and a friend".
You mention "carpal tunnel". Do you feel you have regained all your wrist functions after surgery? Mine was a tumor and not carpal tunnel. The docs have no idea why I had it and are still investigating the relationship to the brain tumor.
You mention a chap that is not a counselor but whose judgement you and your husband respect. That is good. By all means see him. But on a regular basis. There is no point seeing someone like that every month or every 6 weeks. You need continuous interaction, say weekly or fortnightly.
You keep saying you want to work through your issues with your husband.Is he as dedicated to resolving the problems as you are? It seems to me that you are doing ALL the heavy lifting regarding resolving the emotional issues in your marriage. You already confessed to taking the lead in sex. I wonder if you wouldnt be better off with a guy who was committed to you as you are to him (or the marriage?)
You say "I believe in my husband, and I have seen him at his best--i know what he is capable of". You know what he WAS capable of. People change.
If you agree to your husband meeting someone then he MUST agree to have you there as well. There is NO point for him to be counseled n you absence as he could easily misstate the true relations of your marriage and then be recommended a path that is SO WRONG as it assumes he was telling the truth.
You are talking of your MARRIAGE. This is an enterprise involving more than your husband. Doesnt he "get" that? Your son's analogy is not a good one. Alcoholics have a problem that involves them and their liquor. BOTH are talked about in AA meetings. I am sure he talks about you when he discusses the marriage BUT if you are not there, how does anyone know if he is talking the truth or talking what he feels?
You say and I agree with
"It may not be quite as good as a professional counselor---but it's alot better than nothing---which is what i would get if I tried to get him to go to a counselor---but, then again, it might even be better than a counselor, because we have known and loved and trusted this man for probably 14 years----as both a leader and a friend".
You mention "carpal tunnel". Do you feel you have regained all your wrist functions after surgery? Mine was a tumor and not carpal tunnel. The docs have no idea why I had it and are still investigating the relationship to the brain tumor.
I have seen various counselors since I was 17. My husband and I have been to counseling more than once---our options were not very good and it did not do us a lot of good.
My husband refuses to go to counseling again. However, he IS willing to visit with a church leader that he respects----as long as we do not meet together at the same time with him.( I had a tendency to get so angry by the time we finally saw someone that i would really let him have it--plus, he felt like he was being "tattled on"---guess he didn't want people to know what he was doing and saying to me).
Now that things are out in the open---and he has admitted to treating me very poorly, there is nothing to hide---and nothing to "tattle" on---so things can be talked about a little easier, i think.
Because the leader he is willing to talk to is not the usual person our church would have us meet with, i may have to pull a few strings to get this ok'd. If this leader would be willing to follow through with visiting with my husband on a fairly regular basis---say every 2-3 weeks, even if only for about 15 minutes, I really feeel like it would do alot of good. It would even be more helpful if he was willing to meet with me occasionally to make sure he is getting the issues from both points of view.
This is a person we both know and trust--both as a church leader and as a friend. He is not a professional counselor, but I am sure he has quite a bit of experience dealing with couples that are trying to work through various issues.
I believe in my husband, and I have seen him at his best--i know what he is capable of. I think he could be capable, again, of being the good, kind man that I met and fell in love with. i just think that he got off track somewhere---and when i tried to get help----I could not get anyone to listen and follow through---so things just escalated until my children stepped in and "reported" to a church leader the level of difficulty that i was having to deal with and how my husband was behaving. Fortunately, it stopped things from getting any worse. But, unfortunately, the church leader that my children talked to has not followed through very well--and he only talked to me twice, early on----and has never visited with me again.
My husband just needs someone to follow through with him and visit with him on a fairly regular basis to help him stay on track. My son had a good way of putting it--he said it is kind of like he needs a sponsor---like people who are in AA have--someone to check in with on a regular basis or when they are having trouble.
I honestly think that my husband would be able to keep himself on the "high road" if he had to be accountable to someone for his actions and words, and how he is treating his wife and family. Also, this is something he is WILLING to do---and the leader that we both trust actually VOLUNTEERED to visit with my husband on a regular basis when I went and visited him (at work) because I didn't know what to do to get help.
It may not be quite as good as a professional counselor---but it's alot better than nothing---which is what i would get if I tried to get him to go to a counselor---but, then again, it might even be better than a counselor, because we have known and loved and trusted this man for probably 14 years----as both a leader and a friend.
I could probably use some personal counseling from a professional again, someday---i really have a hard time adjusting to changes---and we have had so many changes in our lives over the last 6 years. I may try it again eventually--but not right now.
As for the carpal tunnel------
Both of my hands were cramping up so bad on me that I could not even hold a newspaper or a book for very long. I would get some numbness in my fingers, also---i still get some of that---but it is coming from my neck. During one of my pregnancies it got really bad. I was retaining more water than usual, and I woke up one morning and my wrists and hands hurt horribly--they recommended splints. It took about a month after I had my baby for the problems to go away.
It helped with most of the cramping--but i still occasionally get pain in my wrists and some cramping in my hands---seems to be kind of weather related. Both hands had scar tissue inside of them---i did not know that carpal tunnel could cause enough scar tissue inside of your hand. I have had symptoms of wrist problems for alot of years----probably going back to almost 23 years ago.
What do you feel caused you to need surgery on your wrist---I assume it was carpal tunnel surgery?
My husband has had carpal tunnel surgery on one wrist---but he is in tires, and it is a pretty common thing for a tire man to end up having carpal tunnel surgery.
My husband refuses to go to counseling again. However, he IS willing to visit with a church leader that he respects----as long as we do not meet together at the same time with him.( I had a tendency to get so angry by the time we finally saw someone that i would really let him have it--plus, he felt like he was being "tattled on"---guess he didn't want people to know what he was doing and saying to me).
Now that things are out in the open---and he has admitted to treating me very poorly, there is nothing to hide---and nothing to "tattle" on---so things can be talked about a little easier, i think.
Because the leader he is willing to talk to is not the usual person our church would have us meet with, i may have to pull a few strings to get this ok'd. If this leader would be willing to follow through with visiting with my husband on a fairly regular basis---say every 2-3 weeks, even if only for about 15 minutes, I really feeel like it would do alot of good. It would even be more helpful if he was willing to meet with me occasionally to make sure he is getting the issues from both points of view.
This is a person we both know and trust--both as a church leader and as a friend. He is not a professional counselor, but I am sure he has quite a bit of experience dealing with couples that are trying to work through various issues.
I believe in my husband, and I have seen him at his best--i know what he is capable of. I think he could be capable, again, of being the good, kind man that I met and fell in love with. i just think that he got off track somewhere---and when i tried to get help----I could not get anyone to listen and follow through---so things just escalated until my children stepped in and "reported" to a church leader the level of difficulty that i was having to deal with and how my husband was behaving. Fortunately, it stopped things from getting any worse. But, unfortunately, the church leader that my children talked to has not followed through very well--and he only talked to me twice, early on----and has never visited with me again.
My husband just needs someone to follow through with him and visit with him on a fairly regular basis to help him stay on track. My son had a good way of putting it--he said it is kind of like he needs a sponsor---like people who are in AA have--someone to check in with on a regular basis or when they are having trouble.
I honestly think that my husband would be able to keep himself on the "high road" if he had to be accountable to someone for his actions and words, and how he is treating his wife and family. Also, this is something he is WILLING to do---and the leader that we both trust actually VOLUNTEERED to visit with my husband on a regular basis when I went and visited him (at work) because I didn't know what to do to get help.
It may not be quite as good as a professional counselor---but it's alot better than nothing---which is what i would get if I tried to get him to go to a counselor---but, then again, it might even be better than a counselor, because we have known and loved and trusted this man for probably 14 years----as both a leader and a friend.
I could probably use some personal counseling from a professional again, someday---i really have a hard time adjusting to changes---and we have had so many changes in our lives over the last 6 years. I may try it again eventually--but not right now.
As for the carpal tunnel------
Both of my hands were cramping up so bad on me that I could not even hold a newspaper or a book for very long. I would get some numbness in my fingers, also---i still get some of that---but it is coming from my neck. During one of my pregnancies it got really bad. I was retaining more water than usual, and I woke up one morning and my wrists and hands hurt horribly--they recommended splints. It took about a month after I had my baby for the problems to go away.
It helped with most of the cramping--but i still occasionally get pain in my wrists and some cramping in my hands---seems to be kind of weather related. Both hands had scar tissue inside of them---i did not know that carpal tunnel could cause enough scar tissue inside of your hand. I have had symptoms of wrist problems for alot of years----probably going back to almost 23 years ago.
What do you feel caused you to need surgery on your wrist---I assume it was carpal tunnel surgery?
My husband has had carpal tunnel surgery on one wrist---but he is in tires, and it is a pretty common thing for a tire man to end up having carpal tunnel surgery.
Two things.
1. You mention the many issues you and your husband are going through. Do either or both of you see a psychologist? These people can be a wonderful aid to dealing with the problems you have
2. You mention you had both wrists operated upon? Why? I am very curious as I had one wrist operated upon half a year ago
1. You mention the many issues you and your husband are going through. Do either or both of you see a psychologist? These people can be a wonderful aid to dealing with the problems you have
2. You mention you had both wrists operated upon? Why? I am very curious as I had one wrist operated upon half a year ago
Thank you for your detailed answer to my questions!!! I guess why my husband has issues initiating sex will always be a mystery to me---because I really don't think he has performance anxiety. Actually, he is extremely considerate when it comes to our physical relationship---and always has been---at least when we finally get around to actually having intimate relations---it's the getting to them, that has been the issue.
We had actually reached a point in our relationship, probably about 11 years ago where everything seemed to be flowing and working pretty well between us. Our physical drives were closely matched, we didn't seem to argue as much, If he said something to hurt my feelings, I was able to let it roll off my back alot easier and let go of it a lot quicker.
I was in the early days of whatever my health issues are, so I took alot less pain medication---most of my children were home, and my parents and family still lived nearby. Then, all hell seemed to break loose, starting with a totally unexpected pregnancy when I was 40 and a baby with health issues, children with health and mental issues, etc,. etc. In the middle of all this we moved----and i think that was the final breaking point for me physically and mentally-----I lost a ton of weight---people actually thought I had an eating disorder, I got so thin.
We have continued to have one problem aftr another since then----it is almost embarrassing----so many things have happened to our family it would sound like I was making them up if I told them all to you.
Originally I was able to deal alot better with most of the issues--but i finally reached a breaking point---and have never been able to pull myself out of it----but I do have some days when I am better than others.
Reminding me that it is normal for drive to drop with age was helpful, too, I also figured out a couple of other things that might be adding to the problem and took steps to work on them--hopefully things will start looking up in that area---but i am probably always going to have to be the initiator---at least the majority of the time. I guesss If i just learn to accept it--it really isn't that big of a deal----definitely not something to damage a marriage over.
I have tried to tell my husband that I need him to learn to be more tolerant with me while i work these health issues out----he says he thinks things will get better when I am better---but I remind him there are no guarantees that I will get better than i am right now. he says if I don't, then he will learn to deal with it---He needs to learn to deal with it now.
I think he is dealing with some issues of his own. We have just switched him to natural thyroid--he has not had the drive and energy to do things like he used to and he is much more irritable than he used to be. He will always be a little rough around the edges--but i can live with that.
I think I need to take the personal responsability to make myself take the time to think before I speak and act---because i know i have a problem in that area----i need to not use it as a catch-all excuse--but I do need to allow myself some leeway.
I don't know if my B6 has ever been tested, but my B12 is always high. i did have a nerve conduction test done and it was borderline---the doc figured I would eventually have to have the surgery. i put it off for about a year after the study, but my hands were cramping up on me too much and I couldn't even hold a book without pain. i had surgery on both wrists about 4 years ago. I definitely needed it done. I've played the piano for about 38 years and i crochet alot.
I have also told him that i would probably do alot better if I got alot more positive from him than negative. He agreed that that would probably help. i do think I am seeing some efforts on his part---after reading all of your response, I think I need to put in a bit more effort on MY part.
Thanks for taking the time to address each of my concerns. i don't know if I will get off of the cortisol---so I really hope that I can get the dosage right and the timing right---i think that should help. I think my dosage is not high enough---i noticed more problems when I raised my thyroid meds------the doc told me to watch for problems when the dosage was raised.
Unbekannt, your response seems to verify what i am thinking about my cortisol dosage not being high enough.
Thanks all!!
We had actually reached a point in our relationship, probably about 11 years ago where everything seemed to be flowing and working pretty well between us. Our physical drives were closely matched, we didn't seem to argue as much, If he said something to hurt my feelings, I was able to let it roll off my back alot easier and let go of it a lot quicker.
I was in the early days of whatever my health issues are, so I took alot less pain medication---most of my children were home, and my parents and family still lived nearby. Then, all hell seemed to break loose, starting with a totally unexpected pregnancy when I was 40 and a baby with health issues, children with health and mental issues, etc,. etc. In the middle of all this we moved----and i think that was the final breaking point for me physically and mentally-----I lost a ton of weight---people actually thought I had an eating disorder, I got so thin.
We have continued to have one problem aftr another since then----it is almost embarrassing----so many things have happened to our family it would sound like I was making them up if I told them all to you.
Originally I was able to deal alot better with most of the issues--but i finally reached a breaking point---and have never been able to pull myself out of it----but I do have some days when I am better than others.
Reminding me that it is normal for drive to drop with age was helpful, too, I also figured out a couple of other things that might be adding to the problem and took steps to work on them--hopefully things will start looking up in that area---but i am probably always going to have to be the initiator---at least the majority of the time. I guesss If i just learn to accept it--it really isn't that big of a deal----definitely not something to damage a marriage over.
I have tried to tell my husband that I need him to learn to be more tolerant with me while i work these health issues out----he says he thinks things will get better when I am better---but I remind him there are no guarantees that I will get better than i am right now. he says if I don't, then he will learn to deal with it---He needs to learn to deal with it now.
I think he is dealing with some issues of his own. We have just switched him to natural thyroid--he has not had the drive and energy to do things like he used to and he is much more irritable than he used to be. He will always be a little rough around the edges--but i can live with that.
I think I need to take the personal responsability to make myself take the time to think before I speak and act---because i know i have a problem in that area----i need to not use it as a catch-all excuse--but I do need to allow myself some leeway.
I don't know if my B6 has ever been tested, but my B12 is always high. i did have a nerve conduction test done and it was borderline---the doc figured I would eventually have to have the surgery. i put it off for about a year after the study, but my hands were cramping up on me too much and I couldn't even hold a book without pain. i had surgery on both wrists about 4 years ago. I definitely needed it done. I've played the piano for about 38 years and i crochet alot.
I have also told him that i would probably do alot better if I got alot more positive from him than negative. He agreed that that would probably help. i do think I am seeing some efforts on his part---after reading all of your response, I think I need to put in a bit more effort on MY part.
Thanks for taking the time to address each of my concerns. i don't know if I will get off of the cortisol---so I really hope that I can get the dosage right and the timing right---i think that should help. I think my dosage is not high enough---i noticed more problems when I raised my thyroid meds------the doc told me to watch for problems when the dosage was raised.
Unbekannt, your response seems to verify what i am thinking about my cortisol dosage not being high enough.
Thanks all!!
I have definitely been snippy when I don't have enough HC in me, but "enough" is turning out to be 30-40mg a day when I'm prescribed 15mg. I haven't written that email to my endo yet about how I need help with my symptoms before January, I'm not sure what to say.
I'm still having wobbliness/confusion/fogginess, muscle weakness, abdominal pain, emotional instability, and what seems to be a SLOW heartrate in between HC doses. I got a coupon for a bp cuff and intend to buy one this coming month.
I am still in the process of moving house, getting over infections, and having a near-constant panic attack unless I have enough (too much?) hydrocortisone and, frequently, Klonopin in me.
I have been snippy.
I'm still having wobbliness/confusion/fogginess, muscle weakness, abdominal pain, emotional instability, and what seems to be a SLOW heartrate in between HC doses. I got a coupon for a bp cuff and intend to buy one this coming month.
I am still in the process of moving house, getting over infections, and having a near-constant panic attack unless I have enough (too much?) hydrocortisone and, frequently, Klonopin in me.
I have been snippy.
1. I am glad that are you confident with the one endo who knows what he is talking about and is keen to address you symptoms and not your blood work results if the two conflict with each other. This is the M.O. of the best neurosurgeons in my experience;
2. Adolsterone - I have no idea of its importance with respect to sex drive/hormones but recall that I was testted for that and my results were well within the "normal" range;
3. You ask "from a mans point of view, what would make a man want sex, but refuse to initiate it, then get upset when nothing happens for a while?". There are multiple answers. First, a man's fear or impaired performance has a lot to do with his interest in sex (acts or thoughts) being raised by if he feels that he will not perform well, he will not seek it BUT will pray his partner would be the one to consciously avoid having sex thereby allowing him to (falsely) rant that he is being denied sex! Think of it like a guy wanting to ask out the hottest girl to a dance but fearful she will turn him down. To him, the best of all possibilities is that she hints to him that she is not interested AFTER he has decided for himself that he has no balls to ask her out.
You say that "In my younger days, i had alot of drive, and he would turn me down so often, I can't tell you how hurt i felt. Now that my drive is gone, he tells me that he really DID want to have sex with me all those times he turned me down".
First, regardless of any illness a person has, sex drive falls as we age. The velocity of the fall differs from person to person.
Second, his comment that he really DID want to have sex with you then is to be a load of BS. If he really wanted sex then, why did he turn YOU down? A guy would ONLY turn a woman down if "if he was not in the mood". And occasionally not being in the mood is normal. But if a person OFTEN is not in the mood, a good first guess is that the guy may performance anxiety.
You ask " Did you feel like the HC affected your sex life, or do you think it was the stress you had because your HC was low that affected it. If I understand you right, it sounds like you got your cortisol levels into a normal range, which relieved your stress levels, then you weaned off the HC because you no longer needed it--and then your sex life returned to normal---did I follow you right? "
I cannot separate my stress levels affecting all my moods (sex, people skills etc) from the HC I took to correct it. The two are linked intimately. I weaned off the HC when my cortisol levels improved to be within the normal range, admittedly they do fluctuate but as I was told: many fluctuations are ok, it is when the PM level is greater than the AM level that you should be worried.
And yes, post weaning the sex drive improved, like ALL things improved when I got off the medication. Perhaps it was the stress that affected my drive. Perhaps it was the HC passing through me. I dont know. But I know that every month I travel away from the date I stopped the HC (exactly 1 yr ago) I feel better.
Out of interest, have you checked your Vit B6 and B12? I ask because I just started taking B6 supplements (for an unrelated neurological problem) and while it does not help with THAT problem, I do see a rise in how well I feel. Maybe you should try that too?
4. You mention you may have carpal tunnel. Have you ahd a nerve conduction study performed? Have you had a MRI or u/s to confirm it is carpal tunnel?
5. You say "I have read that low thyroid, low cortisol, low estrogen, low testosterone, low DHEA, and stress, and the condition of the relationship can all affect a person's libido and sex drive. I'm afraid it might never come back". I am not a physician but I do know that in the case of a guy with normal values of testosterone (I am not sure if this applies only to naturally normal values or also to normal values achieved through meds) meds like Levitra and Viagra help in the performance of a sexual act.
6. Pls underatnd that "low libido" and "low" levels of hormones are different animals. It is possible to have high levels of the hormones (but well within the normal range) and to have very low libido.
7. You are (naturally) worried about how you and your husband respond to each other emotionally and physically.
You can tell him from me that until you are off the HC (and for a while afterwards) while you may be very pleasant at times to him and to others, you are NOT the same person you were before and you need latitude to exhibit behaviour that is out of character with how you have related to in the past.
If he values the marriage the will give you all the slack you need. I recovered in a large part due to being single and not having to make excuses to anyone; not being dependent on anyone and not having to answer to anyone.
You must make it clear to him that you will return to good health far far quicker if he lays off; allows you to be erratic; allows you to be selfish and allows you to be sick and not pretend you're Supergirl.
Otherwise the road to recovery will take longer.
2. Adolsterone - I have no idea of its importance with respect to sex drive/hormones but recall that I was testted for that and my results were well within the "normal" range;
3. You ask "from a mans point of view, what would make a man want sex, but refuse to initiate it, then get upset when nothing happens for a while?". There are multiple answers. First, a man's fear or impaired performance has a lot to do with his interest in sex (acts or thoughts) being raised by if he feels that he will not perform well, he will not seek it BUT will pray his partner would be the one to consciously avoid having sex thereby allowing him to (falsely) rant that he is being denied sex! Think of it like a guy wanting to ask out the hottest girl to a dance but fearful she will turn him down. To him, the best of all possibilities is that she hints to him that she is not interested AFTER he has decided for himself that he has no balls to ask her out.
You say that "In my younger days, i had alot of drive, and he would turn me down so often, I can't tell you how hurt i felt. Now that my drive is gone, he tells me that he really DID want to have sex with me all those times he turned me down".
First, regardless of any illness a person has, sex drive falls as we age. The velocity of the fall differs from person to person.
Second, his comment that he really DID want to have sex with you then is to be a load of BS. If he really wanted sex then, why did he turn YOU down? A guy would ONLY turn a woman down if "if he was not in the mood". And occasionally not being in the mood is normal. But if a person OFTEN is not in the mood, a good first guess is that the guy may performance anxiety.
You ask " Did you feel like the HC affected your sex life, or do you think it was the stress you had because your HC was low that affected it. If I understand you right, it sounds like you got your cortisol levels into a normal range, which relieved your stress levels, then you weaned off the HC because you no longer needed it--and then your sex life returned to normal---did I follow you right? "
I cannot separate my stress levels affecting all my moods (sex, people skills etc) from the HC I took to correct it. The two are linked intimately. I weaned off the HC when my cortisol levels improved to be within the normal range, admittedly they do fluctuate but as I was told: many fluctuations are ok, it is when the PM level is greater than the AM level that you should be worried.
And yes, post weaning the sex drive improved, like ALL things improved when I got off the medication. Perhaps it was the stress that affected my drive. Perhaps it was the HC passing through me. I dont know. But I know that every month I travel away from the date I stopped the HC (exactly 1 yr ago) I feel better.
Out of interest, have you checked your Vit B6 and B12? I ask because I just started taking B6 supplements (for an unrelated neurological problem) and while it does not help with THAT problem, I do see a rise in how well I feel. Maybe you should try that too?
4. You mention you may have carpal tunnel. Have you ahd a nerve conduction study performed? Have you had a MRI or u/s to confirm it is carpal tunnel?
5. You say "I have read that low thyroid, low cortisol, low estrogen, low testosterone, low DHEA, and stress, and the condition of the relationship can all affect a person's libido and sex drive. I'm afraid it might never come back". I am not a physician but I do know that in the case of a guy with normal values of testosterone (I am not sure if this applies only to naturally normal values or also to normal values achieved through meds) meds like Levitra and Viagra help in the performance of a sexual act.
6. Pls underatnd that "low libido" and "low" levels of hormones are different animals. It is possible to have high levels of the hormones (but well within the normal range) and to have very low libido.
7. You are (naturally) worried about how you and your husband respond to each other emotionally and physically.
You can tell him from me that until you are off the HC (and for a while afterwards) while you may be very pleasant at times to him and to others, you are NOT the same person you were before and you need latitude to exhibit behaviour that is out of character with how you have related to in the past.
If he values the marriage the will give you all the slack you need. I recovered in a large part due to being single and not having to make excuses to anyone; not being dependent on anyone and not having to answer to anyone.
You must make it clear to him that you will return to good health far far quicker if he lays off; allows you to be erratic; allows you to be selfish and allows you to be sick and not pretend you're Supergirl.
Otherwise the road to recovery will take longer.
My ortho doesn't normally do my blood work---he was only running the thyroid test before he did carpal tunnel surgery on me because he wanted to be sure I really had carpal tunnel---he knew that low thyroid could cause carpal tunnel symptoms. I was just lucky that he felt like a level near the bottom of "normal" was too low. he actually told me to take the blood test to whoever normally treated my thyroid. It happened to be my obgyn. I had not been diagnosed as low thyroid---i had nodules and was put on synthroid for thyroid suppression therapy by our local surgeon. The surgeon had moved, so my obgyn and family doc were both supposed to know how to follow through with my thyroid suppression therapy.
My obgyn looked at my test and told me it was normal---because it was within the "normal" lab range. i told him the ortho thought it was too low and was causing carpal tunnel---so my obgyn got me into an endo pretty quick. (near end of year kind of thing).
Both endos i have seen seemed to look at the lab ranges more than me as a person, although one of them did say that she treated the symptoms and not the blood test---but she was so unorganized and made so many mistakes and never even raised my armour above 1/2 grain.
The doc I am seeing now does not believe that lab ranges can be trusted---he says they are taken from a basically sick population full of undiagnosed problems. His goal is to try and balance my entire endocrine system by getting my lab values to levels that would be the levels for optimal health. He also told me unless I am low in something, I do not need to supplement it. I am on several specific vitamin and mineral supplements along with the thyroid and cortef.
He ran a whole bunch of blood work before I even saw him---but because the cortisol levels were iffy---he waited until he could clinically evaluate me before making a decision on whether or not I needed to be on HC---plus, he had to see me before he could treat me. I feel like he knows more about the endocrine system than either of the endos i saw---but he left thoracic surgery to study the endocrine system and how to properly balance it.
As far as the sex life, i am sure that stress is playing a role in it, but I also think there is a physical reason. Over the last 4-5 years it has come and gone. The first time it "went" my testosterone levels were flagged low---even for a woman. My DHEA was also low--there were some other things tested that were off--but no other sex hormones were off---except the sex hormone binding globuline was high. Aldosterone was never tested----does it come in to play in this? I know it is on the list of things waiting to be tested by the new doc.
Once my DHEA levels and my testosterone levels were back to normal levels---my sex life was alot closer to normal. I guess she had probably gotten most things back to the "normal lab" ranges. Interestingly, if i remember right, my testosterone levels took the longest to return to a normal level---maybe i had trouble getting the right dosage for a woman--she tried to give me a mans dosage that was going to cost a fortune--my obgyn called in the right dosage to a compounding pharmacy for about 10 bucks.
I am waiting to get my hormone levels tested---he is also going to test my ACTH plasma levels. Hopefully that should help me know if being on HC is going to be a permanent thing for me or not. In the past, they were really low.
Did you feel like the HC affected your sex life, or do you think it was the stress you had because your HC was low that affected it. If I understand you right, it sounds like you got your cortisol levels into a normal range, which relieved your stress levels, then you weaned off the HC because you no longer needed it--and then your sex life returned to normal---did I follow you right?
I have read that low thyroid, low cortisol, low estrogen, low testosterone, low DHEA, and stress, and the condition of the relationship can all affect a person's libido and sex drive. I'm afraid it might never come back.
My husband has been a pretty good sport, but because he has issues about being the initiator, I have to initiate most of our physical relationship---and when i have no drive for it, I have to make a real effort to remember to make sure things happen, or he gets kind of cranky.
Now, tell me, from a mans point of view, what would make a man want sex, but refuse to initiate it, then get upset when nothing happens for a while?? In my younger days, i had alot of drive, and he would turn me down so often, I can't tell you how hurt i felt. Now that my drive is gone, he tells me that he really DID want to have sex with me all those times he turned me down. Does any of this make sence?
Now that I don't have the drive, and my body doesn't respond a whole lot--- I honestly try to make the effort to see that we keep that part of our marriage going, because I think it is an important part of a marriage relationship, and we seem to get along better if I make sure something happens. it's not like it is an unpleasant thing for me to do--it just isn't an exciting thing for me to do.
Sorry this was so long--i'm just trying to make sence of my life and trying to figure out how to know what kind of "normal" I can expect. If I am never able to get off the cortef--does that mean I am likely to be a little more emotionally sensitive forever? It sounds like I may have to learn to make it a habit to ALWAYS think before I speak or act.
I can't believe I just spilled my guts like this---and to a man that i don't even know---but i guess that's why we have these kind of boards---sometimes it is easier to talk to a stranger that we don't have to run into on the street and be embarrassed because they know everything we are struggling with!!
My obgyn looked at my test and told me it was normal---because it was within the "normal" lab range. i told him the ortho thought it was too low and was causing carpal tunnel---so my obgyn got me into an endo pretty quick. (near end of year kind of thing).
Both endos i have seen seemed to look at the lab ranges more than me as a person, although one of them did say that she treated the symptoms and not the blood test---but she was so unorganized and made so many mistakes and never even raised my armour above 1/2 grain.
The doc I am seeing now does not believe that lab ranges can be trusted---he says they are taken from a basically sick population full of undiagnosed problems. His goal is to try and balance my entire endocrine system by getting my lab values to levels that would be the levels for optimal health. He also told me unless I am low in something, I do not need to supplement it. I am on several specific vitamin and mineral supplements along with the thyroid and cortef.
He ran a whole bunch of blood work before I even saw him---but because the cortisol levels were iffy---he waited until he could clinically evaluate me before making a decision on whether or not I needed to be on HC---plus, he had to see me before he could treat me. I feel like he knows more about the endocrine system than either of the endos i saw---but he left thoracic surgery to study the endocrine system and how to properly balance it.
As far as the sex life, i am sure that stress is playing a role in it, but I also think there is a physical reason. Over the last 4-5 years it has come and gone. The first time it "went" my testosterone levels were flagged low---even for a woman. My DHEA was also low--there were some other things tested that were off--but no other sex hormones were off---except the sex hormone binding globuline was high. Aldosterone was never tested----does it come in to play in this? I know it is on the list of things waiting to be tested by the new doc.
Once my DHEA levels and my testosterone levels were back to normal levels---my sex life was alot closer to normal. I guess she had probably gotten most things back to the "normal lab" ranges. Interestingly, if i remember right, my testosterone levels took the longest to return to a normal level---maybe i had trouble getting the right dosage for a woman--she tried to give me a mans dosage that was going to cost a fortune--my obgyn called in the right dosage to a compounding pharmacy for about 10 bucks.
I am waiting to get my hormone levels tested---he is also going to test my ACTH plasma levels. Hopefully that should help me know if being on HC is going to be a permanent thing for me or not. In the past, they were really low.
Did you feel like the HC affected your sex life, or do you think it was the stress you had because your HC was low that affected it. If I understand you right, it sounds like you got your cortisol levels into a normal range, which relieved your stress levels, then you weaned off the HC because you no longer needed it--and then your sex life returned to normal---did I follow you right?
I have read that low thyroid, low cortisol, low estrogen, low testosterone, low DHEA, and stress, and the condition of the relationship can all affect a person's libido and sex drive. I'm afraid it might never come back.
My husband has been a pretty good sport, but because he has issues about being the initiator, I have to initiate most of our physical relationship---and when i have no drive for it, I have to make a real effort to remember to make sure things happen, or he gets kind of cranky.
Now, tell me, from a mans point of view, what would make a man want sex, but refuse to initiate it, then get upset when nothing happens for a while?? In my younger days, i had alot of drive, and he would turn me down so often, I can't tell you how hurt i felt. Now that my drive is gone, he tells me that he really DID want to have sex with me all those times he turned me down. Does any of this make sence?
Now that I don't have the drive, and my body doesn't respond a whole lot--- I honestly try to make the effort to see that we keep that part of our marriage going, because I think it is an important part of a marriage relationship, and we seem to get along better if I make sure something happens. it's not like it is an unpleasant thing for me to do--it just isn't an exciting thing for me to do.
Sorry this was so long--i'm just trying to make sence of my life and trying to figure out how to know what kind of "normal" I can expect. If I am never able to get off the cortef--does that mean I am likely to be a little more emotionally sensitive forever? It sounds like I may have to learn to make it a habit to ALWAYS think before I speak or act.
I can't believe I just spilled my guts like this---and to a man that i don't even know---but i guess that's why we have these kind of boards---sometimes it is easier to talk to a stranger that we don't have to run into on the street and be embarrassed because they know everything we are struggling with!!
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I would go find a doctor who DOES know what they are doing - 10mg is generally too low a replacement dose. One does 15mg on up - and you take the bulk in the morning with a small amount in the late afternoon (this is a guideline).
The doctor should not put you on hydrocortisone replacement dose without doing the proper testing - such as a stimulation test and the adrenal antibody test. You kinda want to know if you are primary (adrenal) or secondary (pituitary) to know if other issues may arise. ACTH can help determine that but the test is often not done correctly - for instance, the labs rarely use a chilled tube and the tech may put it in a bin and not the centrifuge immediately in which case the result is low just from lab handling and what your *real* level is - anyone's guess.
HC has a very short half life - which is a good thing as the side effects long term are then minimal (unless doses are too high) and testing can be done after a couple of days.
For a chronic disease such as this - you should have regular appointments. You would need regular refills - as well as an emergency kit (IM needle, solu-cortef acto-vial, etc) and a medic alert bracelet or the like - this is a serious illness with life-threatening implications so your doctor does not have the skills you need. Get copies of your records and find a good doctor.