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Old 01-20-2008, 04:43 PM   #1
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Another person with "unexplained" symptoms...

I'm 48 years old, and about 1 1/2 years ago I started feeling like I could not regulate my body temp. I noticed at work I was getting hot, and felt that for sure my face was beet red (but it wasn't) this would happen mostly every day, but I thought it was just job stress. Then I started feeling bad, - Achey, Tired, couldn't decide if I was "Hot" or "Cold", it felt like I had a fever, but no high temp! Tired and Achey, the Doctor tested me for all kinds of things... checked me for Lupus, Thyroid, low Testosterone, Arthritis, had MRI, Ultra-Sounds, Blood tests of all kinds, and still nothing. She sent me to an infectious disease specialist, and nothing unusual. Sent me to a Cancer/Blood Specialist, and she couldn't find anything unusual, except that my serotonin level was VERY low, and my Immuno-Globulin(?) level was low, she sent me to an allergist, but he didn't seem to think anything of it, and just tested me for allergies. Anyway, I still live with this feeling that I can't control my body temp, it's the strangest feeling, it really reminds me of the feverish feeling I'd have when i'd get the Flu as a kid! But it's mostly every day! I've started taking 5-HTP in hopes of raising my serotonin level, but I've only been doing this for about 3 weeks now. My Wife says she's noticed a lift in my mood, so that's a plus! Our Son was killed in a freak accident at his High School back in 1998, and of course that has hurt me deeply ever since. I don't know how all of this ties in! My Doc is pretty much out of answers. I asked her about Fibromyalgia (my cousin has it and said that my symptoms sounded like that could be the problem), but my GP just kind of said "No I don't think so..." and didn't really seem to consider it. Ringing in the ears is another symptom. It's bad and I just don't want to go anywhere or do anything because I feel so bad, and I can't go around telling people that I don't feel well. My Wife understands, and is supportive, but I wish I could find out what the heck is going on with me... any ideas?

 
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Old 01-20-2008, 06:24 PM   #2
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Re: Another person with "unexplained" symptoms...

Guru welcome to the board. First let me say how sorry I am about your son. I have just started reading a new book by Dr. Daniel Wallace it is entitled simply Fibromyalgia...an essential guide for patients and their families. He is considered a leading rhuematologist and authority on Lupus. In his book he has one of the causes of fibromyalgia as emotional stress and says 10% of fibro cases are from profound emotional distress. I would not hesitate to say you fit in that category. Your symptom of feeling hot and feverish but not having a fever and having the flu like symptoms is very familiar to me. They sound very much like fibro to me. Of course there are many other symptoms and it seems your doc has tried to find another cause.

There are two good books I can recommend the one by Dr. Wallace of course (even though I haven't finished it) and Fatigue to Fantastic by Dr. Jacob Tietlebaum, who himself suffers from chronic fatigue. Don't ever give up keep advocating for your health care and don't stop looking for answers.

Glojer

 
Old 01-20-2008, 09:25 PM   #3
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Re: Another person with "unexplained" symptoms...

I know how you feel!!!! I'm in a horrible flare! I have been like this for almost 8 weeks. I have the flu like feeling......I always feel like this in a flare. I hurt all over and I feel like I have a fever! I feel hot and fluish. My temp has never gotten up over 99.7. It will be 99.7 on minute and 5 min later its 98.6! This goes on all day long.

I called my Dr;s office and the nurse there says its normal for us Fibromites...she says she also has Fibro and this happens to her.

Our weather here keeps going from 30's to 60's to 10's. Pa is having the oddest temperature changes. My body is so unhappy this winter.

Do you feel hot to the touch ??? I do!!!!

Hope

Last edited by Hope4All; 01-20-2008 at 09:28 PM.

 
Old 01-21-2008, 05:32 AM   #4
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Re: Another person with "unexplained" symptoms...

Thanks for the replies! I don't think I really feel "Hot to the touch" as much as a strange almost "Tingly" feeling on my skin (if that makes sense). I have a hard time describing these sensations. Also, aching in my lower back, hips, and buttocks. It's like a deep aching in the muscles(?). I've got 7 years to go before being eligible for retirement, I've just GOT to make it that long. But I just can't see myself going through this for 7 1/2 more years! I'm in a little bit of fear that I'm going to end up with the Doc saying that I'm "Disabled" and fighting with the Post Office (where I work) about that would probably just make things worse! I really want to be able to keep going. I'll try to find those books you recommended also! Thanks Again. And Thanks for the words of respect about our Son too!

 
Old 01-21-2008, 07:30 AM   #5
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Re: Another person with "unexplained" symptoms...

welcome to the boards guru,
my heart says there are no words to express my empathy for you both on the loss of your son. it is always yesterday. a piece of the heart is forever quiet.
the tingly sensations are very familiar. may i suggest you tell your doctor to refer you to a rheumatologist or neurologist for further evaluation. tell your doctor you require this for your peace of mind. i use that line alot and it always works. i have several doctors i see. all of them assist me in my journey. i think i have 8 of them now. i am a busy girl.
do not settle for vague pretend answers from a doctor. this is your body and you alone must insist on the best care you can get.
peace,
bluelakelady

 
Old 01-22-2008, 06:02 PM   #6
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Re: Another person with "unexplained" symptoms...

Guru, I'm sorry about your son. I'm with what others have said. I think that your grief could have triggered fibro. My fibro was triggered by an emotional trauma as well.

If I were you, I'd consider finding another doctor. It's entirely possible that you have one of the doctors out there who doesn't recognize fibromyalgia. Of course, if your doc is willing to continue running tests, you may want to take her up on that. It would be horrible to be diagnosed with FMS and have it be something else. Maybe she had good reason for dismissing it. You should ask her. Also, if you are looking for another doc, be sure to ask, before you make an appointment, what their position is on FMS. My mother started doing that and the first office she called told her that their clinic wouldn't be right for her.

 
Old 01-24-2008, 04:47 AM   #7
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Re: Another person with "unexplained" symptoms...

Thank You very much for your reply! I will ask my Dr. when I see her in mid Feb.
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Old 01-24-2008, 07:29 AM   #8
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Re: Another person with "unexplained" symptoms...

Hi Guru,

First let me say, I am sorry for your family's loss. I am new to the board. I have had FM for 8 years. I am 51. It arrived shortly on the heels of a viral infection. I wasn't dianosed until 3 years ago. I went through many, many doctors. I have found the drug Lyrica helps. I originally started it for pain in my feet 4 years ago. How odd that a podiatrist we give me a new lease on life! It was recently approved for the treatment of FM. Sometimes during a bad flare, which I am in now, it doesn't seem to be as effective. But on a good day, it changes my life. I understand the hot/cold issue. Right now I feel like my face is on fire under my skin. But I am cool to the touch. My doc says it is most likely part of FM, she hasn't had any other FM patient complain of such, but as it occurs with the flu like symptoms and fatigue I'll just trust it's part of the package.

Ask your doctor about Lyrica. It might help you like it has me. Best of luck.

 
Old 01-25-2008, 02:22 PM   #9
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Re: Another person with "unexplained" symptoms...

Hi Guru,

I am so sorry about the loss of your son. My son was killed in a motorcycle accident three months ago. He was 21 years old. My fibro has flared as a result.

Ten years ago I was running a health care facility and caught respiratory MRSA from a patient. I almost died and I believe that physical tramau ignited the Fibromyalgia. I was finally diagnosed about 4 1/2 years ago.

The journey of being diagnosed was frustrating and scary both. It is a 'good' time for your journey however due to the fact that fibro is now being recognized as a physical and medical problem rather than a catch all for 'people with constant complaints.'

There are so many insidious symptoms as well as so many obvious symptoms with Fibro that it is sometimes hard to diagnose, however, going to the right doctor is the first step in this journey.

Find a good rheumatologist in your area and begin there. Make a list of everything you feel and go back as far as you can remember. A road map is a great tool when a doctor is looking for answers.

And like the others have shared....be proactive in your own care. This is your body, you know it better than anyone else, and don't allow any doctor to just blow you off.

Be aggressive until you find your answers!!

I also go through the hot and cold sensations just as if I had the flu. I will feel like I have a fever, only to find that my temperature is normal. It can be frustrating, but the fact remains, the feelings and symptoms are real.

Just hang in there, talk about it, journal it and don't give up on your search for the right doctor and the right answers!!

Barb in Houston

 
Old 01-25-2008, 09:13 PM   #10
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Re: Another person with "unexplained" symptoms...

I too am new to this message board. I have been suffering for 18 months so far with no diagnosis. I was told by my brother-in-law that he has a friend with Fibro and that it sounded like that's what I had. I have been tested for Lupus, MS, Rheumatoid Arhtirtis, Celiac disease, Acute Intermittent Porphyria, etc. etc. So far every test and procedure has turned out neg. I am sitting here in tears as I read this message board and feel like I am reading story's about myself. I need to find a Doctor willing to consider this as my diagnosis. I know now to search out a rheumatologist. Thank you so very much for what could save my sanity. I have been told that it's all in my head, I have a low pain tolerance, etc. Wow, I truly was wondering if I was going crazy. Now I know, it was just uneducated Doctor's not doing their job.
Thanks again for all of you willing to take time to help others!

 
Old 01-26-2008, 07:34 PM   #11
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Re: Another person with "unexplained" symptoms...

Hello everyone, Thanks to everyone who has posted a reply. If nothing else it is VERY encouraging to know that there are people out there who actually have some sense of what I'm going through. bbar40, I'm so sorry to hear about your Son being killed in an accident. My Son died 10 years ago, 3 months is such a short time, I know how it feels, but know this... here I am 10 years later, and still making it in life. In pain sometimes yes, BADLY, but still able to make it. I pray that you will be able to do the same! All of the advice from everyone has really given me the support I need to keep going and keep asking questions! I will find those books, and ask for a Rheumotolgist for sure! I will also let my General Practice Doctor continue to send me for any tests she deems necessary. Like one of you said, it is good to rule everything else out! Thanks again for the response, I'm honored. -- Dan PS- Has anyone else noticed that all of the response has come from females? I have heard that FMS tends to affect females more than males, I guess it's true. (If FMS IS what I have).
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