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Autoimmune something: Struck with extreme fatigue

Posted by devonsnana @devonsnana, Aug 18, 2020

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.

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mermaid7272 | @mermaid7272 | Aug 20, 2020
In reply to @peach414144 "One treatment for rheumatoid arthritis is weekly shots of methotrexate. Which did help but I also..." + (show)
@peach414144

One treatment for rheumatoid arthritis is weekly shots of methotrexate. Which did help but I also have psoriatic arthritis. BUT: The methotrexate will damage your kidneys as is what happened to mine. I stopped the methotrexate but am now consumed with horrible pain throughout the body and the psoriatic arthritis has my finger nails falling off (agony) and the rest of my body responding to pain as well. Damned if you do and damned if you don't. It is easy to give up now but what keeps me going is my cat and dog. They are old as I am (83) they are 14 years of age. They need me to help them with their passing then my turn will come. But, I still smile (when I can). As hard as it is. Good luck to all of us. Peach

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Methotrexate gave me COPD after only a short usage time. It did nothing for my RA. Anyone thinking of using it should think twice as I have read of many negative experiences with this drug on this site. But then, it seems to be fine for others, so just be careful. The new biologic drugs seem to help many, but they are expensive and anyone who has had cancer should not take them.

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ellens | @ellens | Aug 20, 2020

Thanks for the input. I took methotrexate in the early 2000s and it helped. I went off of everything but my rheumatologist said I should get right back t him if I started having pain again. I did and I was giving myself shots once a week but it didn't seem to help and then my rheumatologist died and I couldn't get another one anywhere near me in Montana. I've been off of it until one month before COVID kicked in and I went off of it on my own until there's a vaccine for COVID.

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ellens | @ellens | Aug 20, 2020
In reply to @fracturedd "Ask your rheumatologist if colchicine would help. I had a terrible flare up once and I..." + (show)
@fracturedd

Ask your rheumatologist if colchicine would help. I had a terrible flare up once and I was treated with colchicine, for inflammation/etc —it was a last resort and worked!! You could always try taking tumeric- for a natural anti inflammatory.

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Thanks for the suggestion! I'll look up colchicine ASAP. I do take curcumin/turmeric three times a day.

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ellens | @ellens | Aug 20, 2020

PS--A few years ago I did a bunch of research on marijuana and some pretty scientific people believed it to be an anti-inflammatory substance. I was on legal MJ in another state but I didn't stick with it because I don't like to smoke and didn't know how else to take it. I don't like getting stoned so there is a delicate balance there. I have figured out a way to take some by mouth and if I can stick with it I may get results--can't know if I don't try!

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2 replies
fracturedd | @fracturedd | Aug 20, 2020
In reply to @ellens "PS--A few years ago I did a bunch of research on marijuana and some pretty scientific..." + (show)
@ellens

PS--A few years ago I did a bunch of research on marijuana and some pretty scientific people believed it to be an anti-inflammatory substance. I was on legal MJ in another state but I didn't stick with it because I don't like to smoke and didn't know how else to take it. I don't like getting stoned so there is a delicate balance there. I have figured out a way to take some by mouth and if I can stick with it I may get results--can't know if I don't try!

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Dr John Varga from northwestern in Chicago just did a great article on the benefits of medical marijuana for scleroderma patients. I’m sure you could google it.

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2 replies
fracturedd | @fracturedd | Aug 20, 2020
In reply to @fracturedd "Dr John Varga from northwestern in Chicago just did a great article on the benefits of..." + (show)
@fracturedd

Dr John Varga from northwestern in Chicago just did a great article on the benefits of medical marijuana for scleroderma patients. I’m sure you could google it.

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Not smoking it!! It was a edible form.

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susandenise | @susandenise | Aug 21, 2020
In reply to @ellens "PS--A few years ago I did a bunch of research on marijuana and some pretty scientific..." + (show)
@ellens

PS--A few years ago I did a bunch of research on marijuana and some pretty scientific people believed it to be an anti-inflammatory substance. I was on legal MJ in another state but I didn't stick with it because I don't like to smoke and didn't know how else to take it. I don't like getting stoned so there is a delicate balance there. I have figured out a way to take some by mouth and if I can stick with it I may get results--can't know if I don't try!

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I also take CBD Tincture or gummy edibles. 300 mg strength for each gummy. Go to “cheefbotanicals.com” a highly respected company and get some edibles . They work within 1 hour for me to control most of my pain and the CBD also comeS IN DROPS . So place under your tongue and in minutes you feel better.

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1 reply
ellens | @ellens | Aug 21, 2020

Thanks very much! I'll follow up on that.

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devonsnana | @devonsnana | Aug 23, 2020
In reply to @fracturedd "Sounds like first doctor diagnosed it right. Ssc- can cause interstitial lung disease with ground glass...." + (show)
@fracturedd

Sounds like first doctor diagnosed it right. Ssc- can cause interstitial lung disease with ground glass. Also pain, fatigue, kidney function. I would get in touch with a good rheumatologist. Healthy diet and walking or just getting your lungs working is always a good thing. Keep positive -keep moving. Don’t throw the towel in. It’s hard to help yourself when you feel like crap - but you are worth it.

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Thank you. I haven't thrown in the towel yet but running out of medical options. The new medication Arava is doing no good. We already tried methotrexate which I did not tolerate. I will be calling him Monday and back to plaquenil and steroids until we try something else new.

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