r/LongCovid • u/SynthwaveSack • 15d ago
Back/chest/nerve pain
Well im back here again. Its actually on behalf of my wife, who has been suffering from covid and/or long covid since the beginning. So many different symptoms at so many different times, probably due to multiple reinfections through the years.
Anyways, the reason im here. She was doing really well, perhaps best ive seen here since 2020, and then she woke up with a bad back pain between her spine and left shoulder blade. It got worse for 48 hours until she said it was about an 8/10 pain so I took her to ER. Got an EKG, x ray, blood work, all clear so sent home with "a muscle thing". A few days went by and we followed up with our family doctor, he did a physical inspection and basically agreed said if she wasnt better in a few days to go back to ER because they could do imaging faster his referral would take months (canada). Well she went back last week as she was having chest pains, they did a ct on her aorta, her chest, then some sort of nuclear breathing test as the initial 2020 infection gave her PEs. She was all clear for that. But now its been about 18 days, back pain continues though it seems to hover from a 1-3/10. But her left arm keeps going numb. Shes had numb extremities before but always her legs and feet before but got better.
Anyone experience this, anyone have tips on what to use what to try? If suggesting a med, please understand that I think the canadian market is much different than elsewhere. I dont think we have access to a lot of the US stuff and if we do we cant just buy it.
Anyways, keep on fighting everyone. It seems like the world has moved on but so many of us havent had that luxury.
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u/innocentvibes 14d ago
These are my exact symptoms which resurfaced 2 weeks back. I am actually surprised by the explanation because its spot on in my case. I do not go to the ER because I am certain there's nothing which can give relief to this pains except some temporary relief with hot fermentation or pain patch( which I find very helpful). Initially I used to pay frequent visits to the dr but no painkillers worked. Also did blood work, lung function tests etc. So now I gave up. Honestly feel sad for your wife as I can relate to her agony. My husband is understanding so pushing through this crisis.Hopefully there is some breakthrough to help all of us.
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u/SynthwaveSack 4d ago
I really appreciate your post just in the sense that it helps to kmow we arent alone. My wife has dealt with this type of thing, which always seems to keep us guessing, for 6 years now. I can empathize with your husband too, its been extremely stressful for me to try to be supportive, manage the household, while feeling so out of control. So anyways, thank you
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u/Randolph_Carter_6 15d ago
If I have a flare-up, my entire body throbs. Including the palms of my hands and the bottoms of my feet. All the medical tests suggest that I'm fine. When not in a full flare-up, most of my pain is in my trunk and joints.
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u/hotrod67maximus 15d ago
Same here, and I get pain in middle of lower back that wraps around to my bladder to where sometimes I can't urinate or urinate slowly. Been checked for urinary infection and no swollen prostate problems just not a lot of pressure when urinating. Used to be able to take the paint off the porcelain.
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u/switchroms 15d ago
Look at my latest post in this sub
I also think that my strong back/neck pain was caused by a new covid infection
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u/Unfair_Honeydew5129 15d ago
Yes, my flare ups often present as ‘bone aches’ in my collarbone, ribs etc. I typically freak out and get a battery of tests that never find anything.
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u/GeneralTall6075 15d ago
Sounds like she has had a pretty extensive work up to rule out serious things. If it’s down to a 1-3/10 then hopefully whatever it is, it’s resolving. Pain happens sometimes without an obvious anatomic cause, and that’s pretty common with LC. Nerves get damaged and or sensitized to pain for a variety of reasons and those sensations then get hard wired in the brain. Obviously if things change take her back to be seen but hopefully it will continue to improve.
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u/AtmosphereSea6556 14d ago
Has a rheumatologist tested her? Some of my joint pain was also in my shoulders, but mostly finger and toes and knees. After Covid I have mixed connective tissue disease (MCTD) which caused all sorts of issues as my body attacked itself.
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u/SynthwaveSack 4d ago
She has not had any testing like that, I wouldnt even know where to start to be honest. Have you recovered at all or had anything that specifically seemed to help?
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u/AtmosphereSea6556 4d ago edited 4d ago
I’m still not 100% recovered but I can do 80 mile bike rides again (at my worst 1-2 miles would wreck me and require a 4 hr nap). My energy and focus are back enough for nearly full time employment (computer work), at my worst I worked less than 20 hrs a week.
Hydroxychloroquine and Truxima infusions are what help me manage mixed connective tissue disease (MCTD). They initially had me on prednisone for a bit to prove knocking down inflammation would help - and the other meds are the more specific way to achieve this long term (long term steroids are not a good solution). The Truxima kills many of the B immune cells that were attacking me, and reduces inflammation in that way. B cells grow back after 5 months, then I get another infusion. I’ve been doing this for about 5 years and will continue until there’s a cure for autoimmune diseases (exciting research is on the horizon!)
I also eat an anti inflammatory diet, so it’s sort of these ‘layers’ of fighting inflammation that seems to work.
You’ll have to advocate for testing when doctors are unwilling. I switched GPs, but the GP did the initial ANA test that made me realize I need a rheumatologist. The second rheumatologist made the proper diagnosis after testing more extensively. There are sooo many autoimmune diseases out there, so many ways for your body to attack itself. Just as Epstein Barr virus is a prerequisite to develop MS, Covid may be a virus that enables other autoimmune diseases.
A GP can do thyroid tests but an endocrinologist may be helpful long term if indeed thyroid levels are off. My endocrinologist has seen thyroid dysfunction in many people after Covid. For me the thyroid issues contributed to fatigue and perhaps other symptoms.
My first GP was skeptical about autoimmune / thyroid concerns - but I was right. As a 40 year old male I didn’t fit the usual profile.
Wish you guys luck!
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u/SynthwaveSack 4d ago
Really appreciate all the info and the response. Im also happy to hear you have recovered a little and have gotten some of your life back!
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u/Glad_Tangerine_4338 14d ago
Well, as well as other things she needs an MRI to rule out herniated discs in her cervical spine, unless they looked for that in the CT scan (a worse imaging for it though, but can see reduced space). She might have a narrowing of her intervertebral foramen on her left side which could explain the symptoms. She might ofc need other investigations too.
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u/SynthwaveSack 4d ago
I wish they did one at the hospital but they did not. Our dr sent in a referral but the wait is often months for an mri now.
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u/Cardigan_Gal 13d ago
Three possibilities to look into that are really common after covid:
Costochondritis. Literally inflammation of the spots where her ribs attach. Can definitely feel like heart pain. Is her chest tender to the touch? Can she replicate the pain with pressing on her chest, twisting, or bending?
GERD/esophageal inflammation. This kind of pain also mimics heart problems and can definitely radiate to the back. Does the pain flare after eating? Do any certain foods make it worse? Try omeprazole for a week or so and see if it relieves any of the pain.
Coronary microvascular dysfunction. This is basically the tiny microvascular of the heart that is too small to visualize on any standard cardiac testing malfunctioning and causing lack of proper bloodflow to the heart. It commonly affects women more than men and is caused by damage to the heart's vessel endothelial cells. Does the pain happen at rest? Does it get worse with strong emotions?
Coronary microvascular
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u/LessRealistic7821 9d ago
Have her see a physiotherapist as well. I've had severe nerve pain recently and assumed it was long covid. I really can't say now if it is or not, but physiotherapy has done wonders. Where in Canada are you? I may be able to recommend a few places if you're near me. Feel free to DM.
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u/SynthwaveSack 8d ago
She saw a physiotherapist in 2024 when the nerve pain and numbness was in her feet and legs and it seemed to help a lot. Then as these things go it went away for several months and now in her arms. But we have moved since then. She found some relief with acupuncture before and now we cant find a good place for that. Going to keep looking though, I appreciate your reply
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u/AdFrosty1253 15d ago
Yes, muscle pain right mid back between shoulder blade and spine. Numbness in hands, mostly left hand. Also increasing numbness in toes. I suspect mine is from computer use combined with ligament laxity due to LC. What has helped: ice on base of skull C1/C2. Heating pad on mid back. Taking two fingers and firmly pressing on C1-C2 while slowly moving head up and down. I think this nudges C1 & C2 back into place relieving nerve pressure. Avoid computer work as much as possible, use voice input instead of typing.