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Frustrated & Discouraged
I was diagnosed in 2007 and have reached my breaking point! I have seen many posts on various support sites involving these same issues...frustrated & discouraged....and I have found myself at this same place. I don't know how much more I can take. There are so many different protocols by each and every doctor that it just leaves you with no-where to turn, no relief and just plain miserable! One doctor will prescribe physical therapy, another pain medication, another PHYCHIATRIC medicine (for pain!), another behaviorial therapy, refer you to a pain clinic, refer you to a rhemetologist (sp?), or just turn you away! I don't know up from down! All of the focus of this condition seems to point towards the mental aspect of it, "its all in your head". Its minimized or flat out disregarded! I am to the point of asking why me and I HATE that. I swear I feel like I am being punished...karma perhaps...I don't know. I would be the FIRST person to say something is in your head, you don't look sick, just get out more, exercise, eat different foods, just cheer up! I never popped a pill, never complained that I was sick, always upbeat..happy go lucky, joyful, etc. Now I feel like I have a severe permanent flu, my body hurts like I cannot believe, I am so so tired / worn and its affecting every aspect of my life! How could this have happened to me...me!? I just don't get it. Pain meds provide me relief, yet I can't take them because I became tolerant too quickly. My husband does not want me on anything because of this yet I am still expected to be the wife I used to be (not tired, not angry, not in pain, etc). Because I am not terminal, "it can't be that bad" or "at least you don't have something that bad". My physicians over the last 2 years either throw pain meds at me and tell me I'll be in pain for the rest of my life (and that nothing else will help) or tell me pain meds will not help you, take motrin, an anti-depressent and lets do some physical therapy! I just want this to go away! I don't want to be force-fed anti-psychotics or have some lecture about how a traumatic childhood is linked to this condition (insinuating that its all in your head...I give a **** what a little study says), it doesn't relate to me and I refuce to take phych meds when I am not psychotic! I guess if you have pain that no-one can determine the cause of, no-one believes in and assume that you are seeking a high, that the pain is merely of headache quality and nothing to be too concerned of and referred out to here there and everywhere...well...you could become pshychotic...lol. I am rambling I know...and might not make sense but I am beyond my capacity to handle the acceptance of this condition, the lack of concrete knowledge amongst physicians, lack of specialists, disbelief on my part and lack of a treatment plan. I have sucked it up as much as I know how.....stayed as positive and hopeful as I know how and I don't know what to do. My spirit is low and I am just fed up! I just want this **** to go away so I don't have to see another doctor! I'm sick of it. I don't want to talk about it or think about it....I just want it to go away! I am in pain, pissed and no Mrs. PhD...motrin is not f'n helping me! I pray for strength at this moment and hope I can laugh about this sometime before the day ends...lol (guess I just did). Thanks for letting me ramble without sense...lol.
I am sorry you are in so much pain and don't have the resources that should be available to you. Don't give up! It's hard, I know, but we have to be our own advocates and do it all ourselves. It's not fair but unfortunately, that is how it is these days. I wish you the best.
I completely know how you are feeling... I have severe chronic pain to and am constantly fighting with doctors and unfortunately because I am denied by every health insurance company I have to use this crapy substitute insurance that is only for one hospital and one set of clinics ran by the state and they keep denying me for a surgery I desperately need and it takes months to even get an appointment with my dr and they always just tell me to go to the er when I call to make an appointment I am constantly I pain and very frustrated I am 26 and in the past 4 years I have had 5 surgeries, spinal tap, and blood patch...
Sometimes we just have to vent and this is a good place to do it because everyone understands. I too, have had the same experiences with doctors and have been back and forth to different speciliasts for years. It was my pulmonologist that figured out the CFS and luckily, my primary, does believe in it, but all she wanted to do was give me anti-depressants. I am reluctant to start on those for my own personal reasons. I know that they have helped many people and I don't discount them. However, I do also, feel like doctors just randomly prescribe them for everything out there and they definitely treat CFS/Fibro as if it is in our heads.
as for your husband, it is hard for men to understand and they can't SEE it. Men are fixers, they see the problem, they fix the problem, very simple, but they can't see how you are hurting; therefore, they can't fix it and I am sure your husband just wants you well again. I know mine does. Hard to remember sometimes, but keep that in mind.
Having said that, hang in there. Don't overdo the exercise as that will only make it worse. Do your own research to help yourself out. There are great links under the Health Pages. Check them out and I hope that you get some relief soon.
as for your husband, it is hard for men to understand and they can't SEE it. Men are fixers, they see the problem, they fix the problem, very simple, but they can't see how you are hurting; therefore, they can't fix it and I am sure your husband just wants you well again. I know mine does. Hard to remember sometimes, but keep that in mind.
Having said that, hang in there. Don't overdo the exercise as that will only make it worse. Do your own research to help yourself out. There are great links under the Health Pages. Check them out and I hope that you get some relief soon.
Hey- you got it all right- this is all so much @#@#- I too have had all the meds prescribed- gained weight- got akathisia from resperidal so severe years ago i was marching in place while teaching first graders- Why are you marching? well lets see- a pschi/phar dr thought an anti=psychotic might help- yeah right- just like the other ant dep that caused weight gain and zombieland- then how about prednizone- another 40lbs(for severe contact allergies) also have sleep apnea and tmj- cant use cpap or mouthguard (which a paid $1000 for out of pocket)because of allergies to plastic/tubing/polyurthane etc. I've had all kinds of surg and pt and meds and i too im sick of being sick and tired and told just lose weight and exercize. well you get the picture- having another (4th) hematalogy/onc work up for chronic elevated white ct- ive given bone marrow-spinal fluid, uterus,ovaries,gallbladder,teeth(that were really ok) (pain fromTMJ- so now of more $ tooth implants that hurt worse than the teeth they pulled!- so I feel you pain! Hope you get some relief by knowing its NOT in your head-
Eileen
Eileen
I couldn't have said it better myself. I hear you loud and clear. It's hard and they need to figure this mess out soon. I am too tired of this doctor and that doctor. I Want My Life Back!!! I just recently completed a sleep study in two parts and it appears that I have Obstructive Sleep Apnea which prevents me from sleeping so I am always tired, always. I should be getting the CPAP machine soon but I do know that my pain did not subside after the second part of the study. I did get some sleep and it felt good. I am frustrated and in limbo right now myself. My new rheumatologist Kendra Zuckerman, MD spend an hour with me on the first visit 3/4/09 and that relieved me but I have to wait until she gets the report from the sleep study to proceed. My PCP doctor whom I like doesn't have a clue and just prescribes meds so I definitely know what you are talking about. Why does it have to be this way? Why? Oh, yeah my rheumy told me not to do any excersize until she figures this mess out. The other character (rheumy) told me to exercise. Well I was doing water aerobics for a year and every time I got out of the pool I was in more pain than before I started. I recently found out that the water temp has to at least be 100 degrees as I was in a jacuzzi at the casino in AC and the water felt wonderful. Those characters are just plain sickening and they don't have a clue as far as I am concerned. Good Luck to you and I hope that you feel better. In my SSDI appeal comments I told them that I wouldn't wish this **** on my worst enemy if I had one.
God Bless You
Delores
God Bless You
Delores
The two things that have helped me the most, and they are quite simple. First, improved sleep. Often meds need to be adjusted and sometimes there is a need to try another if it does not provide desired results. This requrires patience on your part.
Next is regular exercise. A physical therapist can help you get started on a program and teach various stretching exercises. Exercise needs to begin slowly and gradually increased. If you are unable to do things like walking, then maybe a therapist could advise. Exercise that increases your heartrate helps to release endorphins, your body's natural pain fighter. It also helps with the stiffness, reduces stress, increases stamina, fights depression, and there are many other benefits as well.
One other thing very important to mention is you need to reduce your stress. Make whatever changes you need to in your life but do it! If you are in a position to chose a doctor, then by all means seek one out that is familiar with FMS. Ask prior to setting up an appointment. This isn't a mental condition, it is the dysregulation of the neurotransmitters in the brain.(biochemical) If you have MPS also, that is a neuromuscular condition. If at all possible, I would try and stay away from alot of pain medication, however, sometimes it is necessary. I will take something at bedtime if necessary, just so the pain doesn't interfere with my sleep. It is very important to get that deeper, restorative sleep so that muscle and tissue can be repaired.
Everyone is different--what works well for one doesn't always work for someone else. You will find various opinions and treatment options, I am just telling you what has been effective for me. It does take time and patience but it is worth it.
Next is regular exercise. A physical therapist can help you get started on a program and teach various stretching exercises. Exercise needs to begin slowly and gradually increased. If you are unable to do things like walking, then maybe a therapist could advise. Exercise that increases your heartrate helps to release endorphins, your body's natural pain fighter. It also helps with the stiffness, reduces stress, increases stamina, fights depression, and there are many other benefits as well.
One other thing very important to mention is you need to reduce your stress. Make whatever changes you need to in your life but do it! If you are in a position to chose a doctor, then by all means seek one out that is familiar with FMS. Ask prior to setting up an appointment. This isn't a mental condition, it is the dysregulation of the neurotransmitters in the brain.(biochemical) If you have MPS also, that is a neuromuscular condition. If at all possible, I would try and stay away from alot of pain medication, however, sometimes it is necessary. I will take something at bedtime if necessary, just so the pain doesn't interfere with my sleep. It is very important to get that deeper, restorative sleep so that muscle and tissue can be repaired.
Everyone is different--what works well for one doesn't always work for someone else. You will find various opinions and treatment options, I am just telling you what has been effective for me. It does take time and patience but it is worth it.
Hi
I so feel for you i have had this since 2007 before then i was healthy i have lost my marriage through it and alot of my friends and the drs in the UK dx you then send you home i see an expert in it the only in the country once a yr and my dr manages it but the dr who told you that it is not treated through narcotics is wrong as its the only thing that keeps my pain down i have tried all the others lyrica muscle relaxants even parkinson meds but nothing works like fenntanal patches 100 i and stronger then morphine but less addictive so i've read.
We are all here for you and your in my thoughts and prayers as i feel where you are now.
sam
I so feel for you i have had this since 2007 before then i was healthy i have lost my marriage through it and alot of my friends and the drs in the UK dx you then send you home i see an expert in it the only in the country once a yr and my dr manages it but the dr who told you that it is not treated through narcotics is wrong as its the only thing that keeps my pain down i have tried all the others lyrica muscle relaxants even parkinson meds but nothing works like fenntanal patches 100 i and stronger then morphine but less addictive so i've read.
We are all here for you and your in my thoughts and prayers as i feel where you are now.
sam
You might be overdoing it. Exercising 5 days a week is a lot for a fibro patient, esp. one who has as much pain as you do. I used to do that also. Now I cut back to simple walking, only for about 20 minutes, about 3 days a week and working in my garden and stretching. I know I should do more, but I reallly do feel better cutting back and not stressing too much about exercise.
I understand about your husband also. My husband is not very sympathetic either. It is very aggravating. He rarely notices when I'm in pain, and if he does, he tells me to *be positive.*
I understand about your husband also. My husband is not very sympathetic either. It is very aggravating. He rarely notices when I'm in pain, and if he does, he tells me to *be positive.*
Thank you so much for all who responded. I had just come from seeing my new primary care doctor (military) and I was just so upset at how rushed I was, how she stated that in upwards of 60% of Fibro patients were abused as children (which infers that it is psychological), stating that it is an autoimmune disorder and that narcotics or similar synthetics do not work and are not usually prescribed and that only an anti-depressent would be prescribed to me along with physical therapy, and cognitive behavioral therapy. Its as if she didn't even here me. She had this pre-conceived idea of me and fed me a pre-fab response. I took Cymbalta (against my better judgment) and it practically made me a loon! I will NEVER take anti-psychotic again. They read through the various studies, then pick and choose which one will cause them less risk in the end. I went in there telling her my past prescribed meds/treatment plans (or lack thereof), advised her that I wanted to remain med free where REASONABLE and my focus was on nutrition, physical therapy, exercise, accupunture, etc.....that I had begun working out 5 days a week and started a wheat free diet (to help reduce symptoms) even thought my pain managment specialist advised against it. I basically advocated against narcotics for the most part and she through out her advice as if she didn't hear me. I think hearing about the past prescribed meds...she came to several negative conclusions. I went to a doctor for help with agonizing pain, followed their treatment plans and am now paying the price for it. I am the one who asked to be taken off pain meds...me...no-one else. I recognized the tolerance...not them! I am not asking for continuous pain meds...those were already given to me and I felt that they were not the right treatment....I am, however, asking that you be REASONABLE in the treatment of my pain and not dismiss the pain. I would not have made the appointment if I was not at my breaking point so don't tell me to take motrin and tylenol. IVE BEEN DOING THAT! I am so upset at the back and forth. My husband cares for me but I think he is more concerned with the meds I take than for my pain. He doesn't understand the pain I'm in because he said today...well you haven't been in pain for a while now right. Are you KIDDING ME! I hide my pain on a daily basis (apparently very well) and then we reach points like today where I just can't take it anymore. He doesn't even want me changing blood pressure meds! He is very paranoid of me becoming tolerant of something else and that makes it so very difficult to deal with. He will not "approve" of any pain relieving treatments other than motrin, tylenol or exercise. Of couse a military mans treatment for everything is water and exercise! It just hurts that no-one can empathize, I can't get treatment and I will never feel relief....or so it seems. Unless there is a bone sticking through my skin and I'm bleading to death....its "really not that bad". What people fail to realize is it can be that bad and on the off chance that its not that bad....after dealing with it 24/7 it wears on your physically and emotionally. I didn't even touch on my endometriosis/pelvic pain, misaligned hip pain, TMJ and migraines. OMFG! (its just floors me that all this is happening to me at once!) Who wants to be in pain all the damn time. If these flippin geniuses would COME UP WITH A CURE or sufficient/effective treatment then perhaps no-one would need to take pain meds. Wait....what are pain meds for....PAIN. ANYTHING you take will build a tolerance and dependence. They hand out anti-depressants life flippin CANDY and you become tolerance and dependent on those ... with the added kick of phychosis when you quit. How is that any better! Wow....guess I worked myself back up and the rambling commenses once again...lol. I am just in awe that I am having this conversation and that these words are falling from my lips! Its the whole I can't believe this **** is for real and that its happening to me! How ironic is this.
Anyway...thank you again for the support and words of encouragment. I am a fighter (despite my little rant) and will retain a positive outlook. I am going to look up those specialists and see if they are part of my network, otherwise wait and see the rhumetologist and/or pain mgt. specialists. Who knows...they may have some magic exercise that will "cure" me. I'm ALL FOR IT....lol. I am going to advocate for chronic pain conditions and their treatment after all of this ****! Ok..I'm done this time. Thank you again for your support because I truly appreciate it. Thank you!
Anyway...thank you again for the support and words of encouragment. I am a fighter (despite my little rant) and will retain a positive outlook. I am going to look up those specialists and see if they are part of my network, otherwise wait and see the rhumetologist and/or pain mgt. specialists. Who knows...they may have some magic exercise that will "cure" me. I'm ALL FOR IT....lol. I am going to advocate for chronic pain conditions and their treatment after all of this ****! Ok..I'm done this time. Thank you again for your support because I truly appreciate it. Thank you!
Oh my God I feel like I wrote your letter!!!!! I have seen so many DR's and taken so many pills I dont know if Im coming or going. Been out of work for 14 weeks havent been paid because disability is having difficulty because fibro is so hard to prove. So Monday no matter how much pain Im in I have to get my *** out of bed and go to work. All I do is cry I hate Dr's.My husband doesnt admit it but I know he thinks I'm imagining all of this. I just feel soooo helpless. Tomorrow I'm seein a pshyciatrist he thinks it's possible that I have PTSD. OK now Im crazy great.
I can totally relate. My husband keeps telling me, *go to the doctor* like that's going to fix everything. He believes that a pill or some surgery will *cure* everything. I know better. I am sick of going to doctors, even specialists, who do not help.
Also, I am overweight, and they immediately throw that in my face *just lose weight.* Believe me, I would LOVE to. I've been trying for 10 yrs. to lose the weight I gained from menopause and being less active from fibro. I refuse to take Lyrica or an anti-depressant because that will just make me gain more weight.
I have a lot of issues with my knees and my back and neck, in addition to the fibro. I have HBP and cholesterol and ulcers, and it's possible I am getting kidney disease. I am almost afraid to get anymore tests because there is always bad news!
You're not alone. I'm extremely frustrated and depressed right now also.
Also, I am overweight, and they immediately throw that in my face *just lose weight.* Believe me, I would LOVE to. I've been trying for 10 yrs. to lose the weight I gained from menopause and being less active from fibro. I refuse to take Lyrica or an anti-depressant because that will just make me gain more weight.
I have a lot of issues with my knees and my back and neck, in addition to the fibro. I have HBP and cholesterol and ulcers, and it's possible I am getting kidney disease. I am almost afraid to get anymore tests because there is always bad news!
You're not alone. I'm extremely frustrated and depressed right now also.
http://www.co-cure.org/USA_CA.htm
You have several specialists in the California area that may be able to help.
Trust me, we all feel your frustration and frequently feel the same was as you do now. It isn't fair, but we can't give up. You aren't crazy; it isn't all in your head; you aren't alone. This is NOT a psychological problem, but it can cause one for real.
Read our Health Pages and what Dr. Garth Nicolson has said about pathogens and microplasma infections. This will help you better understand what may be going on and why it's so difficult to get treatment. Also, check out one of the specialists in your area and make that call.
I'm praying for you also and hope you feel better soon. Keep your head up!
You have several specialists in the California area that may be able to help.
Trust me, we all feel your frustration and frequently feel the same was as you do now. It isn't fair, but we can't give up. You aren't crazy; it isn't all in your head; you aren't alone. This is NOT a psychological problem, but it can cause one for real.
Read our Health Pages and what Dr. Garth Nicolson has said about pathogens and microplasma infections. This will help you better understand what may be going on and why it's so difficult to get treatment. Also, check out one of the specialists in your area and make that call.
I'm praying for you also and hope you feel better soon. Keep your head up!
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