Connect
Autoimmune something: Struck with extreme fatigue
I know this will be a long read but please bear with me.
In 2014 I suddenly was stricken with extreme fatigue, my body racked with severe pain and strange swelling in the right arm. After fighting doctors until 2018, I was finally sent to orthopedics. Orthopedics, did the initial evaluation and found my tendons and muscles were crystalizing as well as full disc degeneration from C3 to the coccyx. He ordered an ANA panel which came back with a titer of 1:1250 with a nucleolar pattern. He diagnosed me with systemic sclerosis. I was then sent to rheumatology where he reran the ANA panel using a different method which costed me 3800 because the method he chose was not covered by insurance. It came back with dual 1:1250 nucleolar pattern and 1:80 speckled pattern. He said it was fibromyalgia and outright called me a liar and that I was drug seeking. At this point I had not been prescribed anything. He put me on gabapentin 600 mg nightly and said he would see me in a year. Even though it relieved the pain at night, the swelling and loss of use of my right arm continued. In the meantime, my kidney functions decreased and breathing issues started. I also started having blood pressure issues and through all the testing found I had latent TB. I was sent to nephrology, cardiology, pulmonology and infectious disease. Even though I have told all my physicians of the diagnosis, showed them the labs and many scans I am being treated with skepticism. Pulmonology does annual scans which show interstitial lung disease but says that since I am a smoker it is the smoking and cannot be scleroderma. Cardiology which I just fired says it is just all the drugs they have me on and the harden arteries are from smoking. I have a new rheumatologist who is trying but says it is unspecified systemic connective tissue disorder and probably rheumatoid arthritis because of my age. I also have been diagnosed with Hashimoto Disease, peripheral vascular disease, ground glass in my lungs, severe asthma and COPD. I realize I need to quit smoking but at this point, I am allowed nothing for pain and as much as I hate it the nicotine does ease the pain. My medications are many. I am lost to what my next move should be or what direction I should be going or if I should just throw in the towel. There is no quality of life and I need a new direction.
Like
Helpful
HugInterested in more discussions like this? Go to the Autoimmune Diseases Support Group.
Connect
Thanks for the info.
Did your Dr ever explain the high CRP but low sed rate? I forgot to ask mine and I haven't been to see him since the COVID struck. I'm also on levothyroxine for Hashimoto's. I guess I'll go on methotrexate after we all can get vaccinated for COVID but I am trying CBD and about a teaspoon of TCH tincture alternating every day. I will ask for another sed rate once I'm back in the system. My Dr is part of a large hospital and I haven't wanted to go around there. I am very leery of biologics although my next-door neighbor is on one and seems to feel OK. I may question her further.
Good luck with your kidneys!
May I ask what state you live in?
I've been on Methotrexate since 2010, and I've been on 4 different biologics. No issues at all.
Thanks for your input. When I was on methotrexate in the early 2000s I did pretty well although I had volcanic mouth sores. My dentist told me to swish Listerine around my mouth every day for one minute and that helped a lot. I did feel kind of sick in the evening after I had my methotrexate injection. I worked evenings so I went ahead and took it in the afternoon. I am on Medicare and have been trying to find out what biologics Medicare and my Medigap Rx insurance covers. What a mess. I have no answers yet. When my rheumatologist died I was left with none in the vicinity so since 2007 I've just been sort of winging it. I don't feel too bad but I have inflammation, apparently.
No, he didn't and I forgot to ask. It was our first meeting and I had had insomnia and felt like roadkill. I will definitely ask him next time I see him. Another question about the biologics you were on: how did you pay for them? It looks like they can run about $4000 per month.
I am so sorry to hear what you are going through. I was on the same path for many years. I was also accused of being drug-seeking. One NP labeled me an opioid addict because I would not cut down on tramadol unless she prescribed low-dose prednisone which really helps. Nothing showed up in my tests but I felt like crap. When my hands puffed up along with my left forearm I had visible symptoms I was referred to UCLA. My rheumatologist was great. He did some genetic testing and a capillaroscopy. I am HLA-B27 positive, c-reactive protein is elevated and he said the capillaries in my nail beds were inflamed and irregular. Diagnosed me with Ankylosing Spondylitis. Most recently it was discovered I have a protein S deficiency which resulted in transient ischemic vision loss a few times. This is after 6 years!!! 6 years of being treated like crap by 80% of the doctors I saw. Luckily my primary is AMAZING and stuck by me. The opioid crisis sadly resulted in so many patients who really need help being treated as drug-seeking - EVEN IF WE ARE NOT ON OR ASKING FOR PAIN MEDS!!! To give you gabapentin and say "see me in a year" is unethical and irresponsible given everything you have endured. Smoking is a risk factor for RA. My mother smoking and was diagnosed with RA in her late 40s along with kidney disease I can't pronounce. She went on Enbrel which helped with the pain immensely. I was put on Humira which enabled me to stand up straight in the morning instead of looking like the hunchback of Notre Dame for the first couple hours in the morning. My point is - don't give up! You will find a doctor who treats you with the dignity and respect you deserve
-
Like -
Helpful -
Hug
1 Reaction