Heat intolerance, fatique, no energy

[js59]

Hello, I had not been diagnosed yet. I saw some doctors but they don't know why I have those symptoms. Basic blood work came back negative. I have a huge heat intolerance, with temp over 71 F, can not take warm bath, can not eat anything warm,I have hard time to concentrate and communicate, abdominal pain, pain in left leg and hip.  Soon as the heat will hit me my face and fingers will be like on fire. I am having the same symptoms with emotional stress. When i have stressful situation  immediately my face is like on fire, I am having very dry heat in my face(it is coming from inside me, my breath is hot) and color of my face is deadly white. I think that something is happening with blood float at that moment, almost like blood is not coming to my face. The same time my fingers will get very swollen, fluffy, red and hot (I think the blood from face goes to fingers). When this happen - immediately I have pressure in my head (feel like something cracked in head), I get very fatigue and tired, have no energy. I have to lay down. I can not eat or drink anything warm, If I have only one sip of anything warm I get big sharp pain in my stomach/esophagus all my body will shake, huge heat in face and fingers, extremely fatigue, totally drained, sick, I have to lay down. I am not eating warm food for 8 years, I can not be outside in summer time, I can not cook (heat from stove makes me sick, even steam from warm plate would make me sick). Can anybody help me, please?

[tonyad]

   Wow! it sounds like you are really having to deal w/ a lot w/ this "Heat Intolerance" Issue. This makes life very hard to deal with I know.

    What sort of Doctors have you seen for this if any? How long have you been dealing w/ this issue?  Do you have any other underlying conditions......MS, NCS, POTS, Thyroid Isuues, Anxiety, Panic Disorder?

       When checking Thyroid just a basic TSH (Thyroid Stimulating Hormone)  test is really not sufficient (in my opinion). The Thyroid is a Buttrerfly shaped, or some people call it the shape of a Bow-Tie. Each side has a Specific job in converting one hormone to another. hope I am making sense : )

    So a Really Good way of checking the Thyroid is of course TSH and T3, T4, and Reverse T3.....These will certainly eliminate if there is a problem w/ Thyroid in any way.  (all done through blood work)

      As you already know Heat intolerance is the inability to be comfortable when external temperatures rise.  Some of the more common causes of Heat Intolerance can be:
•Amphetamines such as appetite suppressants
•Caffeine
•Excess thyroid hormone (thyrotoxicosis)
•Menopause
  
    I am NOT in any way saying that you have a Thyroid condition, but certainly worth getting that Completely Ruled Out!

I will check back w/ your post to see what you answered to these questions...

Have a geat night,
~Tonya

    

[gwcurt]

I have heat intolerance also due to autonomic neuropathy, but not to the degree that you have. I also have panhypopituitary, 2nd adrenal insufficiency, but my thyroid is ok per repeated tests.  My chiropractor is always stating that very few people follow the book. Their illness doesn't read like the general description of the illness in medical books. My doctors thought I had Carcinoid Tumor Syndrome due to flushing in face. They are not sure now about the Carcinoid. The main thing I do to control temperature irregularities is coffee when I'm cold and iced tea when I'm hot. I also do fans or space heaters depending upon temp.  
When they take your temperature, is it usually 98.9 ?  Mine runs low 96 or 97. Don't know if that is a clue of not. Good Luck with the journey of getting it figured out. I've been at it 10 years and have more questions then answers.

[js59]

Hello Tonya,
Wow - I can not believe how quick was your response. Thank you so much. Yes you are absolutely right, it is very hard to deal with this.I adjusted my life to this condition and I am trying to live with it the best as I can.
First at all I need to tell you that all my problem have start 12 years ago when I had been infected by genital herpes virus, not treated for 4 month.Those 4 month was the worst 4 month of my life. I had a huge pain and heat in my vaginal area and pelvic floor, my genitals was like on fire but most of everything I did not know what is wrong with me and I was very afraid, very embarrassed, guilty and very angry. I was not educated about this disease and It was a big trauma,shock to me. I was totally frustrated . I had such a pain but doctor was telling me that is nothing wrong with me, maybe it is an east infection. He was giving me a high dosage of Duflecan and some other medicine,  but nothing helped.  After 4 month i changed GY Dr.., new doctor have found inside my vagina (near to anus on left side) little blister, took biopsy  and yes it was herpes. Since that I live with big pain in my genital area, I have open cuts there where the herpes was (almost looks like paper cuts) very painful. I had a huge heat in my genital,tail bone and pelvic for another 12 month, I still have the heat there but less. All my left side of hip, sitting area - sitting bone, thigh is always in pain, the one spot where I had the herpes I fill like there is something stack, bloke, very tight. It is very painful even for the light touch. Through the years I feel like the heat sensitivity has spread in to other parts of my body.
I visited pain clinic last year and I was diagnosed with postherpetic neuralgia. I saw endocrinologist, he did some blood work (not sure what kind)which came back negative, he also did adrenal test-negative. I had blood work done for lupus- negative. I had MRI done (spine cord) about 7 years ago and it was good. And I think this is it. I don't think I had any more tests done.
I think I have an anxiety, maybe panic disorder? I am not sure.... I have a huge anxiety speaking.  English is my second language so every time I speak I have anxiety. I can not control that. I always have to focus what am I saying, I can not just talk naturally. Sometimes I am so nervous that I am making mistakes what I am saying, my words are coming wrong.This is giving me a huge stress every day. When this happen I feel something like crack in my head, my face is immediately on fire, my cheeks are so dried when i touch them it hurts,I get totally sick, fatigue, no energy, pretty much I feel like I just had some surgery done. My face look at that moment like a death person.
I think this is all. Now you know my story and I am pretty sure that your head is spinning now :):)
Please accept my apology for the grammar and spelling mistakes.

Have a good night and happy Mothers Day to you (and or to your mother).

JS

[tonyad]

  Hey there :)  i have not forhotten about you...i am just having an "BAD" day today
so I will get with you tomorrow......As my brain is Mush tonight......

hope your weekend was good,
~Tonya

[js59]

Oh no, that bad hm?
Don't worry, one day will not make any different to me....I am happy that you will be giving me some advice. Any.......
I hope you will have better day tomorrow...:):) take it easy....
Js

[tonyad]

     Well, you certainly have a long hx of miserable stuff going on  :(
Of course as you know that when you have a herpes Outbreak you the actual nerves to the affected area are being damaged. this would explain the strange sensations in the previous areas of where you had previous outbreaks....Makes sense so far?  Lol

     Check out this link and tell me what you think. See if it helps to answer or understand some of your questions:

   http://symptoms.wrongdiagnosis.com/cosymptoms/genital-sores/heat-intolerance-slist3.htm

Let me know what you think and ask something if you need.
~Tonya

[js59]

Hi Tonya, thank you for this web side. I am very confused how to read it. It has so many topics and every time I click on one of the "blue" topic the same topic is repeating and showing even more ...so I am afraid I will not understand this. Some other web side are just so much easier.... I was doing many researches on my own in the past and every time I tried to go to WD side I just could not figured it out. I can say that I am pretty intelligent :):):) ( at least I think so), but I just have hard time with this one........?????I was there all evening, but i could not figured it out...sorry...
Js

[tonyad]

  Hey there,
Sorry you could not get up what you needed... I tell you what, Tomorrow I will go on there and get the ones that are pertenant (sp) to what you are looking for then send you those specific links......Sound Good??  :)

Hope you had a good day,
~Tonya

[js59]

It sounds very good. Thank you for all your time Tonya. I really appreciate every post comment from you.
JS

[tonyad]

   Hey JS,
     I apologize for not getting right back w/ you like I said I would....I have no excuse other than I "Forgot"!  So Sorry  :0


    Here is another link. Please make sure that you read it all because it pops in and out of the topic of intrest for you.

Again, Sorry for being late,
~Tonya
    

[Kavbear]

English is my language and suddenly several months ago I started stuttering, losing my words and the more I stressed about it the worse it was. Having dealt with anxiety myself the first thing I would say is slow down and find a way to not sress over your speech, you wrote more coherantly then I do sometimes.
If you are going to be in a place where you need to speak and you know what you are going to have to talk about make notes out so you can read them or show the person.

I don't have much medical advice at the moment except I was told autonomic disorders often start with a bad virus. Have you had any testing done? I have all the symptoms you listed to some degree and some days life just isn't happening, now that I have a good diagnosis, am getting off the wrong medication, and doing several right things I am able to do things that seemed like I would never do again.

Good luck, when my brain isn't mush I will look at your posts again and look at my medical tests again and see if there is anything I can add.

[js59]

Hello, thank you so much for your comment and for your advice. It means a lot to me.You are absolutely right about the stress. My speaking is fine if I am not stressing. But...I am stressing daily. It is my job what is stressing me.... I love my job, don't get me wrong. My bosses telling me that I am very good at it, they promoted me over the years twice (I did not asked for it) but I am stressing constantly, because the second language. I am working with public, so I have to talk & I am managing ten people.
Now to my medical problem...
I did not have too many testings done, I just know for sure that I have herpes 2. And that is when all my problems start. I was very healthy before. Please when you have time and your brain will not be mush.... pleeeeeeease look at my posts again. Any advice would be very appreciate it. Thank you and looking forward to hear from you again. Js

[js59]

Hello Tonyad, you do not have to be sorry....I understand and i do have a lot of patience.Life is sometimes very busy...
I don't think you posted that link....can you please?
Thank you so much and I hope you are doing well.
Js

[js59]

Hi Tonyad,
I hope everything is well with you. I would like to ask you what do you think which doctor should I see and what test should I have done? I can not get any answer from doctors, I know all my problems are related to herpes, but doctors are saying that herpes is pretty much not a big deal and they can not cost problem like this.Do you think my problem is related to autoimmune disorder? I saw neurologist twice but he has no idea why I have those symptoms, I don't think he believes me how much I am suffering with this.and how much pain I have each day.I don't know if this is your expertize, maybe you could tell me what other forum should I go to? I looked in to herpes community, but I have not see any post what would help me there. It seems to me like I have some complication cost by this virus. Please let me know what do you think I should do? Thank you very much.
Js

[Kavbear]

I read what you have written and think you need a head to toe look. What area do you live in?
I am also confused about when you have had tests run....I see there have been some ran but it looks like they were spread over years, lots of years. What have you had done recently and are things getting worse over time?
Did you have other STD tests run? (I am not sure why this is important but when I was at the Mayo Clinic I was asked and tested for them)
Do you take medications for herpes?

I got sick last September and was seeing seven doctors who kept pointing fingers at the other or shrugging, after dealing with this and getting no where but worse I had no option but to go somewhere where I could be looked at from head to toe and psychologically. I did not know how I would get there and did not have the money to fly from Florida to Minnesota, stay in a hotel, oh and after a hospitalization I had to take a second person because my memory became so bad they called my family and said it was unsafe for me to travel alone but I started praying and it happened.
My life was saved by having this diagnostic head to toe look. There are few places that do this but they do exist.

[js59]

Hello and thank you for your response. You know, it is very embarrassing for me talk about my STD but I do have to .... I live in NH, I had HIV and syphilis test done 12 years ago, I had MRI of spine cord and brain, EEG, ENG, tilt table (last year), basic blood work &for lupus,sugar level, some thyroid tests ( all this year), colonoscopy, endoscopy (two weeks ago). I have to say that over the time I feel better somehow but I feel worse somehow too. Let me explain this to you: 12 years ago up till 5 years ago I had a huge pain in vulva(one open cut where I had the lesion), huge heat and pain in pelvic floor,hip, thigh shooting to my leg(all left side of my body), low back pain, spine cord pain like something was pressuring, abdominal pain- at that time I could not eat anything but salads, every time I ate I got full very quickly, got big pain in stomach, pressure in my cord, pressure in my forehead &nose, heat in my face, my body was shaking like I was having a fever. At work I did have to lay down on the floor for about 45 minutes to get my energy back. I also was having presuring pain on back of my head/end of spine cord. And I forgot I have very broken tongue-open cuts looks like(it is painful).All those symptoms I can say I do not have any more except: open cuts in vulva multiplied, tongue is the same,pain in pelvic and hip is the same, much less abdominal pain, huge heat in my face constantly, untolerated when I have emotional stress. At that moment my face is like on fire, crack like in my head and after that I am totally sick, can not function at all, shaking like I am having fever. Oh and i forgot, I have the same symptoms when I drink or eat anything warm. And I have heat in my fingers.
Integrated manual physical therapy is the only treatment what is helping me for last 6 years. Thanks to them I can eat better and I can live better.
I never heard about head to toe look and I have no idea where they do tests like this?
Thank you for all your help, take care of your self and have a good Friday!
Js :)

[Kavbear]

Many health issues are hard to talk about but we have to keep talking or get sicker. I had a neurologist say I was faking things and was in and out of my room in the hospital in less then five minutes. He of course did not say this TO ME but when I got my files to take to the Mayo Clinic there it was. I have yet to get his bill but if so I am sending him a note back about this and it won't be nice.

There are several places in the US that you can go to when no one else knows what the heck is going on. The main two are the Mayo Clinic in Minnesota and The Cleveland Clinic in Ohio, both of these places have branches but the branches are NOT like the main place.
You go to there and have one main doctor and then they send you to see other doctors and have every test needed done and they all communicate and have access to look at everything and as a team come up with an answer.
I asked someone who has been in the medical field for over 30 years which of the two I should go to and he said first Mayo then Cleveland.
There is a branch here of the Mayo Clinic in FL that refused to see me as a diagnostic patient because I had too many issues, the Main did not BUT I only gave them the three issues that really made my life unlivable and kept my words short.
Example if I were you and I was going to go to the Mayo clinic in Minnesota
I would call the gynecology department and ask if they have internists who work in the department (this is a trick I learned if you call and try to start with an internist in the department that handles internists its many many many months) I would ask to set up an appoitment with the internist in the gynecology and I would set up a appointment with a gynecologist. I would make an appointment in gastroenterology, sleep. etc.
I would make as many appointments as possible ahead of time and plan on being there a week or two, once you are there they will work their hardest to get you in to see everyone you need to see and every test you need done but you have to get in and the more appointments you have set up ahead of time the better of a chance of getting everything done.
I would tell them
1. I have had herpes for 12 years and list 3 serious symptoms that go with it
2. I can not eat heated food or drink and then list 3 serious symptoms
3. I would tell them I have had constant fatigue and list three symptoms
I would also ask about getting an interpreter, they have them for patients and why add to the stress OR maybe there is a word in your native language that we do not have in English that best fits a symptom, their job is to get that word in English to the doctor.
Once you get there with your files you can get more in depth with everything but you want to be brief to get in.
I looked at my list of symptoms and said ok which ones make me not be able to live alone and take care of my daughter and started there. Once I got there they got the whole list and all tests and I had all my medical files but they did not really need them.
Because your symptoms are not only in one area I would plan to be there two weeks. I started at a week but so much was added and some of the tests and doctors are harder to see.

[Heiferly]

This is really excellent advice about getting a comprehensive multi-specialty diagnostic workup at one of "the biggie" hospitals!!!  I'm thinking we could really use something quite similar to this description (sans the case-specific parts for js59) in our health pages.  Would you be interested in editing this into such a description, or allowing one of us co-CLs to edit it for you (we'd give you a chance to OK it after we edit before we put up the health page, and you'd get credit since you wrote it)?  I think it would be a great resource for many MedHelp members here on our dysauto forum!  Think it over and let me know what you think.

[js59]

Thank you so much for you advice. I think I need to go there. I will start working on it. You gave me a new hope. I can not get any answers from my doctors. They don't believe that I can get any of those symptoms from herpes. They don't believe that I am so sick. They think it is all in my head or it is anxiety. I do have question regarding the appointment. I am littlebit confused about that part when you specified to make app with internist gynocologiest? Can you explain me this again? Sorry.......
You don't know how much I apruciate your advice. Thank you and have a good evening.
Js.

[js59]

Thank you for supporting me Heiferly.
Are you asking me to edit this to somewhere else? Do I understand this right?

[js59]

I have one more question. When I will be making those appointments how they will designate who is going to by my main doctor?

[Kavbear]

I am not Heiferly but I thin she wants to use my post as a starting place for advice to get help at one of the major places. Your specific information would be removed.

The first thing I would do is call the Mayo Clinic in Rochester Minnesota and talk to the person making appointments in the Ob/GYn department.
I looked and here is the link for them specifically.
http://www.mayoclinic.org/obstetrics-gynecology-rst/
On that page it has a link for make an appointment and call and do it.
Remember to call and ask along with gynecology you want to find out if they have internists in this departments. If it were me I would request an appointment with the internist AND the gynecologist.
Remember to be brief and tell them you have Herpes and it is causing you issues that they doctors you are seeing can't get a handle on.
If they do not have an internist then if the Gyno. thinks you need one they will schedule you.
After you have a appointment and patient number start making other appointments in other departments
Gastro (when you call that department directly you tell them why you want to be seen)
Sleep
anything you can think of
The Gyn. can and will change your schedule add subtract.
Start with looking at that link and making a call.
Id look over the whole site and I can help you along the way but you need a starting place.
Before you call think about it and write very brief reasons you want to see the doctor, what symptoms make your life BAD, boil it down so they do not get overwhelmed, they will make time for you to tell them everything once you are there.
So first look over link and let us know what happens, if you do call and need help and I dont see the post message me.
Good luck!

[js59]

First to Heiferly coment...I understand now. She is absolutely right, your post is such a great advice, it should be edited at some major place where it would be helpful to so many other people....
Now - I will be making some phone calls tomorrow. I will call to insurance company also to find out how much they would cover the cost.
Questions:
1. why it is so important to make an appointment with internist?
2.Ones I will  make my first app (GY) should I let them know that I will be making more appointments, or that I need to be seen by different doctors?
3.What  "sleep"  is? I did not know something like this exist
4.should I make app with neurologist & cardiologist?
You don't know how much I appreciate your help! Thank you again.
Best regards! Js

[Kavbear]

Sorry it took me a few days to see this, I missed it.

The Mayo will also know if your insurance is taken or how to best work things...

1. I think you need an internist on your team because you need a general doctor who specializes in looking at the body as a whole. They will also be the "driver" of your trip.

2. I would let them know when you call the GY that it will not be your only appointment and because at home they are having trouble pulling everything together you want to have the most through exam.  (Here I don't have any answers as to what they will say, I have a very distant relative, so much that we did not know the other existed until I got sick and then my uncle mentioned that his uncles daughter had a daughter who he thought worked at the main Mayo clinic , I was so desperate I found her and introduced myself via Facebook and after she spoke with her mom WHO I do know to make sure I was not some crazy person she asked me who I needed to see and scheduled it...once scheduled my internist took over and made changes as he saw fit for the issues I had given them)
Sorry about that weird explanation but its the only way my mind would work

3. Sleep is a department that deals with issues with sleep and preforms various degrees of sleep studies. I saw both a neurologist and a critical care/ pulmonologist who are both also licensed as sleep specialists, from what I got most sleep specialists are also specialists in other fields.

4. I would look at my symptoms and decide what doctors I needed to see, my internist was in the cardiology department so while I did not have an appointment with a cardiologist, I saw one during the end of my Echo and another consulted with my internist who specializes in cardiology (From the doctors I saw there I don't think any of them had only one area of expertise.....My internist is one who works with patients that have cardio and other issues where a cardio. is more limiting....Does that make sense?
I would schedule at LEAST a neurologist what you are allowed to schedule depends on what symptoms and issues you share with them.
Example : I had not seen a endocrinologist and my GY here thought I should so I asked to be scheduled for one and the main internist there canceled it (I did not list anything to start with that would say I needed one though) once I was there it was added back on by another doctor when some of my blood work came back not normal.

Once you are there they are very good at getting you in and even encourage you to go to appointments early. While there you will see as what I was jokingly told was the hurry up and wait exercise plan and the starvation diet since you go go go and are already sick and food becomes unimportant.
Once you know you are going and scheduled I can give you Mayo tips not doctor related (like hotels and the shuttle that runs so you don't have to drive or stay in one of the connected hotels, where food is, what is rush time etc)
Good luck and if Mayo does not work then there is the Cleveland Clinic in Cleveland.