Multiple Autoimmune Diseases & Post Covid

Posted by mamafluh @mamafluh, Jan 7 10:34am

Has anyone else been having pain levels of 8-12 not normal. Things in pain, cognitive, insomnia, nerve issues, etc since having Covid?

Interested in more discussions like this? Go to the Autoimmune Diseases group.

I have Myositis for six years approx. I am now losing my teeth which is devastating ..predisone dose is ten mg for about a year. Doses were flexible before then. Also suffering hair loss and sight of one eye. Help!

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@shack76

Thanks for your reply, but I seem to have exhausted what gastroenterologist can do at this point. What I really need at this point is a neurogastroenterologist, but I think the closest to me is at Stanford.

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@shack76 Finding the correct type of physician can be so difficult and frustrating. You say that the closest hospital , or one that has a neurogastroenterologist, is Stanford. Wouldn’t it be worth getting an appointment?

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I also have multiple autoimmune diseases (lupus/lupus nephritis, Hashimotos thyroiditis, Sjogren's syndrome) and post Covid (nov 2020). I am struggling a lot right now. Just want others to know that you're not alone. I hope we can help each other get through this and to a healthier future.

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@lemmy2022

I have Myositis for six years approx. I am now losing my teeth which is devastating ..predisone dose is ten mg for about a year. Doses were flexible before then. Also suffering hair loss and sight of one eye. Help!

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@lemmy2022 I’m so sorry that I didn’t see you posting sooner. You’ve had myositis for about 10 years and are taking prednisone. Are you taking any other medications for the myositis? It seems like I’m going to ask you lots of questions, but id like to get to know you and your situation better. Is that okay? What types of physicians are monitoring your disease? An ophthalmologist, a rheumatologist, an endocrinologist and a dermatologist? Ive been on prednisone for about 6 years. I started at 60 mg and have slowly come down to 5 mg. Ive been followed closely because i developed cataracts and osteoporosis from the prednisone.
I would love to see you get some proper care..Can you ask your doctor for some appropriate referrals?

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@becsbuddy

@lemmy2022 I’m so sorry that I didn’t see you posting sooner. You’ve had myositis for about 10 years and are taking prednisone. Are you taking any other medications for the myositis? It seems like I’m going to ask you lots of questions, but id like to get to know you and your situation better. Is that okay? What types of physicians are monitoring your disease? An ophthalmologist, a rheumatologist, an endocrinologist and a dermatologist? Ive been on prednisone for about 6 years. I started at 60 mg and have slowly come down to 5 mg. Ive been followed closely because i developed cataracts and osteoporosis from the prednisone.
I would love to see you get some proper care..Can you ask your doctor for some appropriate referrals?

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Thank you for your concern. I am a broken woman with this curse I call it. I live in Nfld Canada and fortunate enough to have the best medical care there is offered. Have most most of my hair twice, cataracts, glocoma, eye implants now sight gone left eye. Suffered a stroke a year ago so confined wheelchair. Now my teeth are loosening from my gums, my dentist cemented them so lasting for now. That was for my four front crowns.

I am so tired and feel so sad. Cannot enjoy my family much anymore and feel left out a lot. They try to include me but I don’t last long.

Predisone is keeping me alive I guess and my next fear is difficulty in swallowing. That’s part of disease also.
My Doctor is a professor oh rheumatologiy at a our local University. I trust his care.

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@lemmy2022 I’m glad to hear that you have good doctors and are getting good care. Autoimmune diseases are so difficult to live with and to manage. And covid has made it even more difficult with the forced isolation.. you may want to think about finding a therapist to talk with. It helped me immensely. Many therapists do telephone consults.
And you might like the discussions in the Aging Well group. I included the link. Maybe @nanette2022 could welcome you when you post there.
https://connect.mayoclinic.org/group/aging-well/
You said that you are in a wheelchair due to a stroke—do you have someone to help you or are you able to care for your own needs?

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I am about two weeks out from first covid symptoms–I am boosted. Still have extreme lethargy, not too much inflammation otherwise, though. I am trying to make myself drink more water and to be sure I eat enough calories in a day. Short walks outside as I am still rather breathless. I used an inhaler through the worst 4 days of illness. I do have Lupus

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@shani

This is my first try at connect…are there others who have multiple autoimmune diseases? I am not who you asked but I have five so thought I’d respond ..in order of diagnosis, over 50 years, I have or had erythema nodosum, MS, sarcoidosis. Hashimoto, and anti phospholipid syndrome.

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Hi @shani, I’d like to add my welcome. You may also be interested in these related discussions:
– Erythema Nodosum https://connect.mayoclinic.org/discussion/erythema-nodosum/
– Recently diagnosed with Multiple sclerosis https://connect.mayoclinic.org/discussion/recently-diagnosed-with-multiple-sclerosis/
– Sarcoidosis Treatment: Tips for an effective path to better health https://connect.mayoclinic.org/discussion/sarcoidosis-treatment/
– Can Hashimoto’s disease cause dry mouth? https://connect.mayoclinic.org/discussion/hashimotos-and-dry-mouth/

Living with multiple automimmune conditions, I’m confident you would have tips and thoughts to offer others in these discussions.

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6 weeks since catching Covid. Im having a major flare. Started having full body joint pains at an 8-9 pain level (never had joint issues before). Currently only diagnosed Castleman disease which is a very rare condition affecting the lymphatic system, kidneys, and liver.

Neuropathy went moderate to severe in hands and feet. Also have anemia and likely a kidney flare. Currently going through medical testing to check all of my levels and figure out if i have arthritis of some sort. Going to have to quit my job. Aged 25. Im not on any sort of disability because test results fluctuate positive and negative like a light switch. One minute youre supposed to be in ICU other months nothing is wrong according to tests. Tricky illness.

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@nnumba2

6 weeks since catching Covid. Im having a major flare. Started having full body joint pains at an 8-9 pain level (never had joint issues before). Currently only diagnosed Castleman disease which is a very rare condition affecting the lymphatic system, kidneys, and liver.

Neuropathy went moderate to severe in hands and feet. Also have anemia and likely a kidney flare. Currently going through medical testing to check all of my levels and figure out if i have arthritis of some sort. Going to have to quit my job. Aged 25. Im not on any sort of disability because test results fluctuate positive and negative like a light switch. One minute youre supposed to be in ICU other months nothing is wrong according to tests. Tricky illness.

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What is Castleman Disease?

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I have all the same issues. I had an MRI without contrast and took a SAGE test, EMG, and nothing showed. I did have Fibromyalgia for about 16 years before COVID in Feb 2020. This is 10x worse that my worst days with Fibro. Every system and major organ has been affected in some way. No answers. I have a rheumatologist that is planning to retire and said he isn't staying current! No other rheumatologist in area take me because I don't have any dx other than Fibromyalgia, OS, and Osteprosis. I really feel I have something in autoimmune and Neurological going on. After a 10th wait I have an appt February 28th at a Post-CoV-2 Clinic. I prayer it is the beginning to some validation and help! My mom had Lupus, Sojourn. RA, and other major issues. Stay in touch to share info!

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@becsbuddy

Good morning @shani . You are really dealing with a lot. I’m hoping you have a great doctor who listens to you and provides proper treatment. Is there something specific we can help with?

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Thank you and I also think having excellent docs in every specialty plus PCP is most important. I have no specific issue , but certainly is nice seeing this little community, so looking forward to being a part.

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