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Dec 19, 2018 · Overwhelmed in Autoimmune Diseases

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.

Dec 8, 2018 · Overwhelmed in Autoimmune Diseases

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.

Dec 2, 2018 · Overwhelmed in Autoimmune Diseases

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.

Dec 2, 2018 · Overwhelmed in Autoimmune Diseases

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.

Dec 2, 2018 · Overwhelmed in Autoimmune Diseases

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.

Nov 15, 2018 · fibromyalgia pain in Chronic Pain

Lisinopril was a nightmare for me. If really damaged my kidneys and with fibro, that's a hard enough thing to keep healthy.

Nov 5, 2018 · Lupus or not Lupus? in Autoimmune Diseases

Thank you. Funny how stress is such a big trigger but this process is more stress than anyone should ever have. I'm have been there..no more tests. Couldn't handle another diagnosis another bill another doctor saying it's stress or lupus or fibro or cancer or any number of other things. Some have been mean, others just toss their hands up. But I am still trying. Maybe too little too late. I will ask the doc about that test. Who knows..might narrow things down.