Long haul covid: reactive arthritis and possibly GBS

Posted by jcg @jcg, Jun 23, 2022

I had covid for the second time back in August of 2021. 7 days post covid and I was fine. Dealing with fatigue and headaches. On day 7 I had severe pain in both hips. Day 8 it had moved to my knees. By day 10 I couldn't sit, stand or lay down without excruciating pain. I go back to the dr only to find I have post covid reactive arthritis. I start treatment and after about 6 days the pain was considerably better. On day 7 I start having numbness in my feet moving rapidly up my legs. It's wasn't completely numb. It was like the feeling on your hand being asleep without the pins and needles feeling.Within 2 days I had lost control of my legs. It was like my brain and my legs weren't working together. I had numerous test ran and my nerve function between my spine and legs was fine, but my nerve function between my brain and spine was affected. During this time the brain fog set in and the dr told me I was being treated for Guillain-Barré syndrome. For the next 8 & 1/2 weeks I was in the dr office 3 times a week for blood work, shots and different test. After all this time I still have lingering effects. The symptoms are rare and mild but I have not reached 100% . Has anyone else had any experience like this?

Interested in more discussions like this? Go to the Post-COVID Recovery & COVID-19 Support Group.

Welcome @jcg. I'd like to bring fellow members @rocketjs @aztennisguy @tiredmommy @outdoorslass into this discussion as they have shared similar experiences, which you can read more about here:
– Joint inflammation and muscle pain after COVID https://connect.mayoclinic.org/discussion/joint-inflammation-and-adults-possibly-from-covid/

Jcg, you've certainly had a confounding and difficult long haul with COVID. Am I reading correctly that while you had extreme symptoms, the worst of them have relented somewhat. What are the remaining lingering effects? What helps you?

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The lingering effects are mild joint pain in knees and ankles, fatigue and mild brain fog. Moving forward I'm told I should never be vaccinated for the flu or covid due to the Guillain-Barré syndrome.

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About a week after my third shot, Dec, 2021 I woke up with both hands swollen to the size of ski mitts. Arthritic symptoms with joint pain moving around my body. (Still does) I am finding some relief with a “clean” diet and moderate exercise. If I overdo any physical activity I relapse. Fatigued by the end of the day but just now sleeping well. Hoping o am on the mend. Cheers, Tom

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Covid has accelerated my RA for almost two years (Covid pneumonia November 2020) with no signs of slowing or stopping. Thankfully I have an excellent and caring RA doctor, he works with me to try to manage the many issues that I’m experiencing Post
Covid that are in his area of expertise. I take Plaquenil twice daily, Methotrexate weekly and a monthly Infusion. (He started me on Symponi, which didn’t seem to help, then Orencia which I had a rare allergic reaction to and next week I will begin Actemra monthly. (fingers crossed it will be the one that works!) Besides my RA doctor, I have a terrific PCP, Endocrinologist, Neurologist Cardiogolist and Opthalmologist. It may sound like to many “cooks in the kitchen” but we have to surround ourselves with good Doctors that recognize that PCS is real and that people are suffering and need help. They along with all the other medical specialists are working and educating
themselves to find solutions that will treat and manage PCS.
Do not waste any time with the Doctors that look at you with the “ you are crazy” look. But remember Doctors can’t do it alone, we have to help ourselves too as the problems we experience are many!
Personally I have bone and muscle pain, swelling, numbness and tingling along with oppressive debilitating fatigue, migraines, eye migraines, brain fog, memory and concentration challenges, sleep problems, constant drainage, shortness of breath, continuing taste, smell and balance issues along with a “myriad” of unexplainable weird things that my body experiences daily. These are some of the challenges I try to deal with, face head-on and work thru with as much grace and dignity I can muster everyday Post Covid. (Some days my positivity works some days it doesn’t Lol!) It is overwhelming, but I just keep trying to put one foot in front of the other just like the thousands of others like us that suffer from PCS. We are fortunate, we survived Covid and sadly so many didn’t. I know I’m blessed as I have the love and support of an awesome family, my daughter, mom and brother are my strongest supporters, I wouldn’t make it without them, along with
several good friends.
Just keep trying to find answers and good Doctors. Surround yourself with good people!
Keep moving, take care of yourself, rest when you
need to and know that we all will get through this together. We are definitely worth the fight!

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@tomtom75

About a week after my third shot, Dec, 2021 I woke up with both hands swollen to the size of ski mitts. Arthritic symptoms with joint pain moving around my body. (Still does) I am finding some relief with a “clean” diet and moderate exercise. If I overdo any physical activity I relapse. Fatigued by the end of the day but just now sleeping well. Hoping o am on the mend. Cheers, Tom

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Tom…do you still have swollen hands? Just one of my hands is swollen like that and does not recede. Also have joint pain now in shoulders and hips (mostly) and prior to Covid and being a long hauler, I had no medical problems or issues. Working on controlling also with diet, continuing to be very active/exercise. I've never had brain fog or fatigue during Covid or after…just the joints and hand.

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@jtb75

Covid has accelerated my RA for almost two years (Covid pneumonia November 2020) with no signs of slowing or stopping. Thankfully I have an excellent and caring RA doctor, he works with me to try to manage the many issues that I’m experiencing Post
Covid that are in his area of expertise. I take Plaquenil twice daily, Methotrexate weekly and a monthly Infusion. (He started me on Symponi, which didn’t seem to help, then Orencia which I had a rare allergic reaction to and next week I will begin Actemra monthly. (fingers crossed it will be the one that works!) Besides my RA doctor, I have a terrific PCP, Endocrinologist, Neurologist Cardiogolist and Opthalmologist. It may sound like to many “cooks in the kitchen” but we have to surround ourselves with good Doctors that recognize that PCS is real and that people are suffering and need help. They along with all the other medical specialists are working and educating
themselves to find solutions that will treat and manage PCS.
Do not waste any time with the Doctors that look at you with the “ you are crazy” look. But remember Doctors can’t do it alone, we have to help ourselves too as the problems we experience are many!
Personally I have bone and muscle pain, swelling, numbness and tingling along with oppressive debilitating fatigue, migraines, eye migraines, brain fog, memory and concentration challenges, sleep problems, constant drainage, shortness of breath, continuing taste, smell and balance issues along with a “myriad” of unexplainable weird things that my body experiences daily. These are some of the challenges I try to deal with, face head-on and work thru with as much grace and dignity I can muster everyday Post Covid. (Some days my positivity works some days it doesn’t Lol!) It is overwhelming, but I just keep trying to put one foot in front of the other just like the thousands of others like us that suffer from PCS. We are fortunate, we survived Covid and sadly so many didn’t. I know I’m blessed as I have the love and support of an awesome family, my daughter, mom and brother are my strongest supporters, I wouldn’t make it without them, along with
several good friends.
Just keep trying to find answers and good Doctors. Surround yourself with good people!
Keep moving, take care of yourself, rest when you
need to and know that we all will get through this together. We are definitely worth the fight!

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Hello jbt – I am so sorry to read of your many issues post-covid. I marvel at your positivity and admire it. I have a few ongoing issues myself and the most confounding is the development of Complex Migraine with Aura (diagnosed one year ago at Mayo). I am 66 and had just one migraine 44 years ago, so this development is surprising and pretty debilitating when the migraines hit. Have you had any luck in treating your migraine? Thanks in advance,
Pat

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Pat I understand as I too hadn’t ever experienced a true migraine until Post Covid. I’m 65 and had been given meds that really didn’t help much, I discussed this issue with my Neurosurgeon (brain tumor removed 2018 annual MRI’s are still clear) and he suggested I see a Neurologist. One of the best things I’ve done, as he is terrific, he cares and listened then suggested that we try Botox injections since I truly didn’t want to have to take another pill. I agreed to try it and for the first time in almost two years I haven’t had a full blown debilitating migraine. The injections did not hurt, I did get a dull headache for a short time (took a Tylenol) after the injections. Within 10-14 days I realized that I hadn’t had a migraine and I actually cried with joy and utter relief! That has been almost three months ago and although I still have the beginnings of a migraine “coming on” approximately 20 plus days a month I immediately take an Extra Strength Tylenol and I’m good. It has been amazing! I go back for the 2nd Botox treatment next week and I’m actually looking forward to it! If this treatment will manage/stop the migraines and I only have to get them four times a year I’m on board! You might discuss this treatment option with your PCP. If you do decide to try it, I hope it works as well for you as it has so far for me! Take care!

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@jbe61

Tom…do you still have swollen hands? Just one of my hands is swollen like that and does not recede. Also have joint pain now in shoulders and hips (mostly) and prior to Covid and being a long hauler, I had no medical problems or issues. Working on controlling also with diet, continuing to be very active/exercise. I've never had brain fog or fatigue during Covid or after…just the joints and hand.

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No but they are still very stiff….especially the index fingers of both hands with the left being more inflexible than the right. Still making slow progress to normalcy with clean diet, exercise and rest being the drivers. If I have a drink or two on the weekend I do”pay” for a couple of days with much greater inflexibility and stiffness. Shoulders are still not right but coming along too.
Cheers
Tom

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Hope they continue to improve. How long did you have the swelling? Same on the shoulders here too. Continue to improve. 👍

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I have d Covid for 8 days then developed tingling in my fingers and toes. Within one day it moved up my legs and I couldn’t walk, could barely move my legs. Upper body weak but functional. It was diagnosed as the rare. Disorder GBS (Guillane Barre disease) which I understand many others have gotten post Covid . I am now in a rehab hospital post infusions and am hoping for a good outcome . One of the biggest challenges has been level 10 upper back pain. Anyone else have experience with this?

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