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Multiple Autoimmune Diseases & Post Covid

Autoimmune Diseases | Last Active: Oct 12, 2023 | Replies (113)
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@lisajade4mayo

Dear All,

I posted somewhere else and naturally can’t find it. I joined a Facebook group dedicated to long term (years) side effects from the vaccines only to become more depressed by the hecklers. Found many in my shoes, but deleted the post. I was an athlete pre vaccines. I’m not an anti vaxxer. I never imagined what would happen to me or I obviously wouldn’t have gotten vaccinated. Stanford lagged for a full year as inflammation spread through my body. My primary ran labs after seeing me so immobile and grossly underweight. Very high CCP and RA positive. I have tried about 5 medications for RA over the past year +. All made me very sick and didn’t help. At this point we don’t even know if it is RA. It is primarily in my large joints, shoulders, spine wrists, hips, knees, ankles. I was seen a week ago due to increased shoulder inflammation (one shoulder) and was told that it looks like frozen shoulder. I’m in constant pain despite heavy duty pain meds. Muscle wasting. Sleep is WAY off. When I was wide awake in the middle of the night, I found something called long vax. I’d always said vaccine injury. Both make sense. I always feel like I need to say that I am not seeking compensation. I have had to give up every aspect of my life. I’m holding on to my financial business only because I can work from home and am not required to meet with clients. I can work in the middle of the night and sleep when I can sleep. Anyone else in a similar situation? After researching last night, I think I have been seeing the wrong type of doctors. I’m going on 2.5 years. Does anyone know of physicians that are studying long covid, long vax and covid injuries? I’m going to search my area (San Francisco Bay Area.). I’m not sure if it’s relevant, but I had zero antibodies post my second vaccine. This perplexed my doctor. I have never been this depressed before. I’m in treatment for depression because I feel so hopeless. I’m on an anti inflammatory diet and have been since December. Even the foods that I am able to eat have changed. I’m scared.

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Replies to "Dear All, I posted somewhere else and naturally can’t find it. I joined a Facebook group..."
Colleen Young, Connect Director | @colleenyoung | Sep 19, 2023

Hi Lisa, I can help. To find your posts, you can click on your profile and see all comments you have made.

I moved your question about new RA diagnosis to the discussion where you were connecting with others like you here: https://connect.mayoclinic.org/comment/932702/

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slkanowitz | @slkanowitz | Sep 20, 2023

I have been in a similar situation and know how terribly frustrating and depressing this can be. I do have some suggestions that may prove helpful. To confirm you have RA, xrays and MRI help in diagnosis IF you have joint erosions. Your worst and longest affected joints should be xrayed first. If erosions show up MRI not needed. If no erosions seen, then an MRI of worst joint should be done.
For the muscle wasting, skeletal muscle enzymes in the blood can be checked to rule out autoimmune myositis. CK, aldolase, ALT, AST and LDH are enzymes elevated in myositis. There is then a myositis antibody panel if those enzymes are elevated. Myositis causes muscle weakness as well as atrophy. Atrophy can also occur just from immobility caused by pain and stiffness, fatigue associated with RA.
Lastly the lack of antibody response to your vaccine could indicate an immune deficiency. This is paradoxically common in autoimmune disorders that one has excess antibodies directed at your own tissues but a lack of antibodies directed At infectious agents such as bacteria, viruses fungi. This can be measured by a blood test of immunoglobulins (antibodies), IGG ,IGA, IGM. These are different categories of antibodies. If deficient one would be prone to infections and not make sufficient antibodies to vaccines. These aren’t typical blood tests done routinely. You definitely need to be under the care of a rheumatologist. Antidepressants may help you as chronic pain depletes the neurotransmitters in the brain that affect mood. If an antidepressant raises your neurotransmitter levels, then the situational problems of chronic illness may be easier to cope with. A therapist or life coach would be helpful too, as we autoimmune sufferers need someone to talk to. I wish you better luck in finding an RA treatment that works well. I’m in the same boat with lupus and RA and no response to many meds I have tried.

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