1. < Autoimmune Diseases

Overwhelmed while searching for second diagnosis

Posted by toomanyoars @toomanyoars, Dec 2, 2018

The past 8 years of struggling to get a diagnosis has been nothing compared to the past four months and I am about done trying. I have a fibromyalgia diagnosis and with that, every doctor has always told me that there is something else there, something autoimmune that has evaded them. I was ANA positive for three years and the Endo put me on high dose vitamin D. The ANA was negative until last month. I had not felt right for awhile but I fell in July and ever since have been so sick and getting worse. My ANA came back 1.6, high platlet, low red blood cells and low but not out of range T4. Everything else came back fine. It's like having the worst flu, or maybe like mono I guess because showering exhausts me. I guess the biggest issue though is I can't regulate my temperature anymore..daily random spikes in fever, crazy hot flashes throughout the day and when I should adjust to changes in temperature like coming inside from the cold or after a shower I can't cool down. My sleep is maybe 2-3 hours a night now because I wake up constantly and never really sleep deeply on a regular basis. When I do sleep well enough to dream I don't dream anymore like normal..it's flashes of light or broken images Everytime. My Endo and primary literally said they don't know what's wrong, what changes or how to fix it but it's gotten the best of me. I used to function despite the fibromyalgia, but now, whatever changed has taken what's left and made me not more than a couch potato who is pretty ineffective and honestly becoming depressed. I have always handled whatever came my way and dealt with it. But having no answers and no end in sight is taking its toll.

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lioness | @lioness | Dec 8, 2018
In reply to @johnbishop "Hello @tina5243, welcome to Mayo Clinic Connect. Sorry to hear your fibromyalgia flared up after a..." + (show)
@johnbishop

Hello @tina5243, welcome to Mayo Clinic Connect. Sorry to hear your fibromyalgia flared up after a stressful work week. There is another active discussion that you may want to read and join in with other members with fibromyalgia here:

Groups > Chronic Pain > fibromyalgia pain
-- https://connect.mayoclinic.org/discussion/fibromyalgia-pain-28e002/

Are you able to share any tips that you have found help or ease your fibromyalgia pain?

You may be interested in the following YouTube video on Fibromyalgia: Strategies to Help by Dr. Barbara Bruce.

John

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@john thanks for this information I also watched Dr.Mandel on utube Im hurting today going to take a hot shower this always helps.

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lilyp | @lilyp | Dec 9, 2018
In reply to @becsbuddy "Good morning, @toomanyoars . It sure feels overwhelming. I know exactly how you must feel—I, too..." + (show)
@becsbuddy

Good morning, @toomanyoars . It sure feels overwhelming. I know exactly how you must feel—I, too sit around and read a lot, when I was always so active. Have you been to a big medical center, like Mayo Clinic or a university medical school in your state? My doctor at University of Colorado has a group of colleagues she works with and they discuss individual cases. I self-referred and I’m so glad I did. I really hope you find an answer

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Hi becsbuddy, I have been diagnosed with chronic mono and am looking for a doctor in Colorado, Denver area. Is it possible for you to let me know the name of your doctor or physicians group from University of Colorado. Thank you

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Mentor
John, Volunteer Mentor | @johnbishop | Dec 10, 2018

Hello @lilyp, welcome to Mayo Clinic Connect. You mentioned you were diagnosed with Epstein Barr in a previous post. There is another active discussion that you may find helpful here where other members have discussed mono caused by the Epstein Barr virus.

Groups > Infectious Diseases > treatment for chronic epstein barr
-- https://connect.mayoclinic.org/discussion/treatment-for-chronic-epstein-barr/

John

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Kay Rovik | @anniemaggie | Dec 12, 2018

Keep looking, be your own researcher. Yes life is overwhelming. My Dr says I am complicated. i have extreme fatigue, I am asleep before my head hits the pillow. Ms, fibro, sjogrens, chronic fatigue, 4 rare diseases. I have to drink coke, or bottled starbucks, but loath most coffee. Also type 2 diabetes, but told Dr I have to drink it to stay awake. I had some lupus like butterfly rash, but all ana tests normal. I found anti sm or smith, not used anymore, tested positive lupus 3 times, only shows in lupus, but also tested negative rheumatologist said those numbers go up and down, but was diagnosed 15 yrs ago and it's not active.

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toomanyoars | @toomanyoars | Dec 19, 2018

Update: Today was the rheumatologist appointment I have been waiting for. He tested for Lyme and doubled my sleep meds. I was literally burning with sweat running down my back and face and my BP was 136/114. Random spikes in BP ...not abnormal for me. My temp was up two degrees like it does when I burn. My FSH shows menopause now but that doesn't explain the fever or BP. He did my physical exam and said I had "Fibro from hell", but that he didn't think approaching this as an Autoimmune was a good idea because he thought the risk outweighed the benefits of suppressing my immune system even though there are things that look like autoimmune symptoms. I haven't been able to get an ACTH test but I am working on it. Thanks everyone for for your repliea and suggestions. They have really helped.

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1 reply
Kay Rovik | @anniemaggie | Dec 19, 2018

Fibro NOT autoimmunehttps://www.verywellhealth.com/is-fibromyalgia-an-autoimmune-disease-716148

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Kay Rovik | @anniemaggie | Dec 19, 2018
In reply to @toomanyoars "Update: Today was the rheumatologist appointment I have been waiting for. He tested for Lyme and..." + (show)
@toomanyoars

Update: Today was the rheumatologist appointment I have been waiting for. He tested for Lyme and doubled my sleep meds. I was literally burning with sweat running down my back and face and my BP was 136/114. Random spikes in BP ...not abnormal for me. My temp was up two degrees like it does when I burn. My FSH shows menopause now but that doesn't explain the fever or BP. He did my physical exam and said I had "Fibro from hell", but that he didn't think approaching this as an Autoimmune was a good idea because he thought the risk outweighed the benefits of suppressing my immune system even though there are things that look like autoimmune symptoms. I haven't been able to get an ACTH test but I am working on it. Thanks everyone for for your repliea and suggestions. They have really helped.

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Fibro Not https://www.verywellhealth.com/is-fibromyalgia-an-autoimmune-disease-716148

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ckeys | @ckeys | Dec 20, 2018

@toomanyoars Hi, and welcome. Your low red-blood-cell-count alone is enough to explain why you are so exhausted. You don’t have enough oxygen circulating through your system. That might also explain your fall. High platelet counts can cause clotting, heart attacks and strokes as well. I would suggest, if you haven’t already, checking with a hematologist. Oftentimes they are both a hematologist and oncologist. Don’t let that scare you. This just means that they specialize in disorders involving blood, plasma, etc. Wishing you the best!

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ckeys | @ckeys | Dec 20, 2018
In reply to @toomanyoars "Thank you. My estrogen levels are steady so they aren't thinking menopause yet however of course..." + (show)
@toomanyoars

Thank you. My estrogen levels are steady so they aren't thinking menopause yet however of course we all know they can make mistakes. The idea about finding a doctor through a compounding pharmacy is great. I hadn't thought of that. So far the only functional medicine doctors I have found were 2 and a half hours away. But there is a compounding pharmacy close to me so thank you for suggesting that as a resource.

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@toomanyoars Instead of just getting a estrogen test, I suggest you ask your primary/gynecologist for an FSH test (follicular stimulating hormone). This is important because it tells your body whether you are still dropping fertile eggs, and this totally drives a lot of your estrogen/progesterone/testosterone levels which can usually impact your energy and your mood.

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ckeys | @ckeys | Dec 20, 2018
In reply to @tina5243 "I've been in bed all weekend. My fibromyalgia hit hard friday night after a stressful work..." + (show)
@tina5243

I've been in bed all weekend. My fibromyalgia hit hard friday night after a stressful work week. I'm finally feeling better and of course to start work all over again. I've been taking generic cymbalta for almost 10 years now and find that it helps me sleep. I also go for massages when I can. When I start yawning and feeling achy I know it's time to find my bed cause I'm in for the duration. Can be frustrating. I Find that my hot flashes and chills get worse when an episode hits. I'm sorry because I know what you're going through. My stomach has been gurgling and I've got a kidney infection. Happy dec.!!!!

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@tina5243 hi Tina, I too suffer from fibromyalgia, and I get these “episodes“ which I call flares. I wonder if you have a sense of what brings yours on? Stress, lack of sleep and sometimes weather can trigger mine. However, oftentimes they just happen for no apparent reason (grr). I am continually trying to learn from others what to look out for.

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