Overwhelmed while searching for second diagnosis
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.
Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.
Great name first and welcome to the Mayo Crew of Seakers of knowledge for their own health control! In my humble opinion this is an endocrinology issue. Have they ran cortisol and an ACTH test on you (also monitoring insulin uptake and sugar and aldosterone)? The reason for this test is for adrenal insufficiency or precursor to Addison’s disease, which is my issue. Please look up all of the possible symptoms and see if you don’t fit the bill. Lethargy is the key component, but I had 31 symptoms and all fit about five autoimmune or other. There is primary and secondary. Primary is your adrenal gland , which they will probably want an MRIof. The secondary is the pituitary gland sending the hormone that tell the adrenal gland to secret the cortisol. Without cortisol you have no fuel because it combines with your cholesterol to make your energy. If it is secondary and your pituitary gland is messed up then you will have out of whack T3 T4 and TSH along with low testosterone. See where I am going with this? They should also get an MRI of your pituitary gland. Brace, because it is manageable but with continuous doses (daily x2) of either hydrocortisone or prednisone- normally the latter, but there is no cure and it is progressive and the prednisone has a whole heap of side effects. Look it up before agreeing to it. What you are most likely experiencing when you “crash” and can’t control your body temp is referred to as an adrenal storm or crisis. This is seriously a dangerous situation and you should try and avoid ANY stress at all. Easier said than done, but your life depends on it. Since I do not know your personality or your stress load, it is difficult for me to discern how often you will experience this, but this is also your fight or flight mechanism. Like going to the well for energy to “deal” and the well is dry. Read read read and take some control of this yourself. I saw 13 doctors prior to my last visit to Mayo. All were baffled, but if you have thyroid function problems and hot flashes (uncontrollable body temp) and unbelievable fatigue, then I would take the above advice. Tell your endo what tests you want and why. Do NOT TAKE NO FOR AN ANSWER! Best of luck to you and keep us posted. Oh yes, this is 70% of the time due to an underlying autoimmune, but there are about a billion. Treat the symptoms first and get in better control and then go after the autoimmune as you can. Much love and may God provide you the strength and the doctors the wisdom to help you! Best wishes, Sean L. Roop – BIGGEST MAYO FAN ON THE PLANET!
Wow you have no idea how much I needed your response today. Glimmer of hope and great insight. Thank you. I will definitely talk to my Endo and try and go that direction. Thank you so much.
@toomanyoars I looked at your profile and I see you are a mom with older kids. I thought I'd add that the symptoms with the hot flashes and not being able to sleep are also menopause symptoms. You can take bio-identical hormone replacement of estrogen balanced against progesterone and get that from a compounding pharmacy to control hot flashes if that is the reason. If you find yourself still looking for a cause as you follow the path to figuring this out, you might see a functional medicine doctor and ask. Symptoms do vary a lot individually and some people do have a lot of fatigue. You can call a compounding pharmacy if you need to get names of doctors who use their services.
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.
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.!!!!
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
Thank you. My Endo feels I need to go to Mayo but said she didn't feel they would accept my case because everything that has been tested Mayo would duplicate so they wouldn't feel the need so she referred me to a specialist at KU medical center 2 hours away but the soonest he can see me is the end of May. My fevers are more frequent and climbing and my red blood cell count keeps dropping so waiting doesn't seem logical to me. Our insurance requires referrals and getting referrals hasn't been easy because we are in a rural area that has limited specialists.
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
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.
Myofacial massage therapy helpful re aches and pains.
Hi @toomanyoars — there is another discussion on Connect that you might want to read through and see what has helped others with appointments.
Groups > Visiting Mayo Clinic > Getting your first appointment
Also, @kanaazpereira has some great information and tips on working through insurance and billing issues for Mayo Clinic appointments in her post in another discussion here:
I would ask your Endo doc if they will give you a referral anyway. The great thing about Mayo Clinic is that they have multiple teams of specialists that work together to provide a diagnosis and treatment plan.
Hoping you get an appointment soon.