Long Covid?

Ed1937

I know some of our members have had covid, and I'm wondering if any have long covid? We have a daughter who got covid early on in the pandemic. She has had multiple problems since, and has had a hard time getting help for her symptoms. She has been going to the University of Chicago for some time, and was just diagnosed with Sjögren syndrome https://www.mayoclinic.org/diseases-conditions/sjogrens-syndrome/symptoms-causes/syc-20353216   and fibromyalgia https://tinyurl.com/2nz9ndkn   It's my understanding that there might be some connection between these and covid. So if you have long covid, possibly you could have one or both of these too, making things more difficult.

abc123

Hi Ed, I am sorry to hear this news regarding your daughter. I have been fortunate in regards to Covid as far as I know but I was diagnosed with fibromyalgia about 16 years ago. I hope she has a caring doctor like I have. Did she experience arm and/or leg pain as a child, headaches? I'm so glad I saw this post. Thank you!

Ed1937

I'm sorry you've been dealing with fibromyalgia. I don't think she had those problems as a child. Now she is in pain 24/7, and has frequent migraines. She sits in a dark closet when they hit. She also has problems with her body keeping moisture, and had plugs inserted in her eyes to keep moisture in. Some of this are symptoms of Sjogren syndrome, and part are from fibromyalgia. She has a team of different doctors working together on her case. She also had a major ptoblem with acid reflux, and had major surgery for that. I think that came from Sjogren. 

This is the daughter who I have relied on the most when it comes to problems with her mother. I don't know what I'd do without her. She just got these diagnoses, and she is on new medication that is expected to take up to 3 months to see how they work. Hoping for the best.

abc123

I hope the meds help her too! I take Cymbalta for the fibro with a combination of other meds. They work together in my particular case. I have problems in my joints the most and my hands. As a child I was diagnosed with "growing pains", as a preteen I started with migraines and that continued well into my early 50's. I hardly ever have them now, in my 60's but I know when one is coming on and prepare myself to be out of commission for at least 24 hours. My heart goes out to her. Living with pain is tiring. There are days when being touched causes terrible pain. I hope the meds will work well for her. I'll be thinking of her and keep her in my prayers.

M1

Sjogrens can be a tough disease Ed, as can fibromyalgia. And long covid. Sadly there are still so many chronic musculoskeletal conditions that we still don't understand very well, much less know how to treat. I'm so sorry because I know how much your daughter has helped. Yet another big bump in the road. I hope they find some things that will help and that she has a good rheumatologist to work with.

Ed1937

Thank you both. She has a good head on her shoulders, and is very careful when picking medical professionals to work with. She has a lot of confidence in the team of doctors, and I expect she will be helped. But it's a matter of time.

Jo C.

Ed; just found this in my email box.  It is UCLAs Long Haul Program. Scroll down to read the set up and there are links . . .

https://mail.yahoo.com/d/folders/1/messages/74138?guce_referrer=aHR0cHM6Ly9sb2dpbi55YWhvby5jb20v&guce_referrer_sig=AQAAAMbpxBpeIJxOiKBaC5hfwLDhgA0H8ELQAQlC-jlPIQtFVH548RqCe_p_KivjQ7AOTP9f3PtD6XoA46diltH0KQVYM9DSBXZzsDAxQopew_XzZRYBNHLaZpX7rkbv6EQGyAe7i3NwqEAOQLByCFPxhb5kH6KemChbkiVnIhBfyxEv

So hope that your daughter will have a good team to help her to best outcome.   The Long Haul Syndromes are still in the investigation state with data gathering; it is a young science, and UCLA is really good with this sort of matter.

J.

Jo C.

Oh shoot, so sorry; Tiny URL did not work for me . . . really sorry, Ed; it looked as though it was going to fold over in normal state for screen but then when I processed it - not at all good.

J.

Ed1937

Thank you, Jo. I'll pass that on.

Ed1937

Jo, the link seemed ok to me, but when I clicked on it, it took me to my yahoo mail.

Jo C.

That is strange; same thing happened to me when I used the link from here.  Okay; I may finally have it.  Let's try:

https://connect.uclahealth.org/2022/02/14/long-covid-treatment-program-symptoms/

J.

Jo C.

I know that you are far removed from UCLA; but they and other major med centers across the U.S. are forming or have formed such centers for Long Haul . . . I have found that even if I am far removed from a specialty group on various medical subjects, if I make a phone call to a specialist, I am put through to said specialists who are almost always very kind and forthcoming.

That second link did not do well for me on this site; but when I took it and placed it in the Google slot, it went through just fine.  I never know what motivates or de-motivates my computer; tis what is.  Hope it goes through for you.

In any case, just "no stone unturned" and worth a try.

J.

Ed1937

Thank you, Jo. That one worked.