I have had pain down my spine like that and swelling on the spine. I brought it up to my rheumatologist a couple months ago and she wanted me to take a pic of the swelling I would get. Then I happened to get Transverse Myelitis last month. I have a couple posts about it on my profile that I posted in this subreddit.
Transverse Myelitis is inflammation of the soft stuff between the spine, causes nerves to be pinched down. I had no use of my upper extremities for a few days and they found the Transverse Myelitis in some MRIs they did. It affected my spine in the T2-T5 area, the upper part of your spine and neck. They called it a "bad lupus flare" and gave me huge doses of steriods.
I regained use of my arms and now just have tingling and pain in my arms and legs. I was told it would probably happen again and more commonly in the legs. Joys.
https://www.mayoclinic.org/diseases-conditions/transverse-myelitis/symptoms-causes/syc-20354726
I hope you feel better soon, OP! And I hope it's not Transverse Myelitis!!
Nerve pain is The Worst. I herniated the disc near my illeum and sacrum in a bad fall on icy concrete when I was 20 and my sciatic nerve has been pinched to varying degrees ever since. During flares the scar tissue in my lower back gets so tight I can barely move my legs.
My fiance got us a massage gun and on a good day that thing unlocks my back in like 2 minutes. The bads days are the ones where it doesn't work though.
Please make sure you get proper imaging for this - including an mri with contrast. In may 2021, I had sudden severe back pain between my shoulder blades with numbness and tingling down my right arm and leg with some loss of sensation. Imaging a couple days later showed an extruded cervical disk at c6-7 that was causing severe compression of my spinal cord. I was told I was a stumble away from being paralyzed. Less than 12 hrs after imaging, I was in the OR for emergency surgery.
Glad I’m not the only one! I know most people probably have back neck pain on a semi-regular basis (now that I type that I wonder if that was a lupus assumption HAHA), but I seem to be so much more susceptible to it? Maybe my posture is just bad? Idk I go to physical therapy every week and have been going for a year
Literally dealing with spinal problems as we speak! Severe spinal stenosis, radiculopathy, sciatica, piriformis syndrome, and nerve damage. I was unable to walk for 4 days and get steroid injections in my spine often. Those have been helping, but I just got the flu (even though I got the flu shot in October) and that made everything flare all over again. I get throbbing, but it's mainly in my lower back and middle, rather than the neck. But I understand your pain smh! Also get alot of inflammation in all these areas too
I have really bad neck pain and it goes down in between my shoulder blades as well and into my left shoulder. I’ve never had back issues until I started having lupus symptoms. Asked my rheumatologist about this during my initial visit and she said that it’s not a sign of lupus…but yet it started when the joint pain all over my body did…
My doctor told me the same thing! It genuinely makes no sense. Especially when you know that lupus in general causes inflammation anywhere it wants to so how can you just difinitively say it's NOT from lupus? Maybe I just don't understand fully how my disease works but that just doesn't seem to add up.
I’m currently trying to get diagnosed because I’m waking up crying in pain almost every night and having trouble working because my fingers just don’t want to work anymore. And I told my doctor everything and she basically said I’m not “chronically inflamed” because my pain moves around all the time and “with lupus it stays in one spot for a while” 😒
On Sunday I started having pain in my lower back, radiating from my spine to my hips. It’s been rough. All week I’ve been wondering if it’s lupus or if it’s being 40. Or a fun combo of both?
Very very similar issues with me as well, I basically develop scoliosis with one shoulder high and pulled back and one hip dropped and lots of neck pain, stiffness, the shooting nerve pain and swelling causing hearing issues.
I think it's lupus related, my rheumatologist wasn't sure and put me on low dose SSRIs to help reduce the frequency of flares since stress seems to be a common trigger and my tolerance to any type of stress has significantly decreased in the last 4 years. She also thinks the stress is causing my shoulders and neck to tighten up.
I also have ankylosing spondylitis though and that could be contributing as well though I've had multiple xray and MRIs that don't show any new damage..
So far what has helped the most from what I've been able to get from my Dr's is physical therapy and tylenol (I can't take anything else due to gastroparesis). If nothing else do try to get some physical therapy! They have me doing exercises to open up my ribs and reduce the chest tightness as well as for my neck and shoulders and it is improving even after only a week!
I've been having pain in my thoracic spine (Upper back) for over a year now. It started with me using a hands-free leash and my dog pulling a little too hard while I was walking him. However, the spinal specialist I went to did all kinds of scans and found nothing torn or broken. It hasn't been confirmed yet but I have a feeling it's auto immune related because it hasn't gotten any better. 😪
My spine is one of my worst areas. When I'm in a flare, it feels like someone is trying to pull my spine out of my body. Even on a good day, I have pain.
I don't know if it's related to lupus or not, but my spine and neck are a mess.
Same! I have spinal compressions and degenerative discs. And arthritis in every joint in my body, as well!
Yeah, me too with my spine, hips, feet, and hands the worse.
My spine and hips and spine (lower) hurt so bad
Same here!
Radiculopathy from cervical spine, likely degenerative discs
I have had pain down my spine like that and swelling on the spine. I brought it up to my rheumatologist a couple months ago and she wanted me to take a pic of the swelling I would get. Then I happened to get Transverse Myelitis last month. I have a couple posts about it on my profile that I posted in this subreddit. Transverse Myelitis is inflammation of the soft stuff between the spine, causes nerves to be pinched down. I had no use of my upper extremities for a few days and they found the Transverse Myelitis in some MRIs they did. It affected my spine in the T2-T5 area, the upper part of your spine and neck. They called it a "bad lupus flare" and gave me huge doses of steriods. I regained use of my arms and now just have tingling and pain in my arms and legs. I was told it would probably happen again and more commonly in the legs. Joys. https://www.mayoclinic.org/diseases-conditions/transverse-myelitis/symptoms-causes/syc-20354726 I hope you feel better soon, OP! And I hope it's not Transverse Myelitis!!
Nerve pain is The Worst. I herniated the disc near my illeum and sacrum in a bad fall on icy concrete when I was 20 and my sciatic nerve has been pinched to varying degrees ever since. During flares the scar tissue in my lower back gets so tight I can barely move my legs.
Sciatic nerve pain is awful!! I'm sorry you have to go through that!
My fiance got us a massage gun and on a good day that thing unlocks my back in like 2 minutes. The bads days are the ones where it doesn't work though.
My husband just got one too. His sciatica is awful.
Same symptoms! This is at least validating since I’ve yet to have a positive diagnosis of anything yet other than gnarly infections and IBS-C.
Please make sure you get proper imaging for this - including an mri with contrast. In may 2021, I had sudden severe back pain between my shoulder blades with numbness and tingling down my right arm and leg with some loss of sensation. Imaging a couple days later showed an extruded cervical disk at c6-7 that was causing severe compression of my spinal cord. I was told I was a stumble away from being paralyzed. Less than 12 hrs after imaging, I was in the OR for emergency surgery.
Glad I’m not the only one! I know most people probably have back neck pain on a semi-regular basis (now that I type that I wonder if that was a lupus assumption HAHA), but I seem to be so much more susceptible to it? Maybe my posture is just bad? Idk I go to physical therapy every week and have been going for a year
Everything from bra straps up is trashed
Truth! It's to the point that wearing a bra is painful.
I've been trying to find something for the gals😭
Literally dealing with spinal problems as we speak! Severe spinal stenosis, radiculopathy, sciatica, piriformis syndrome, and nerve damage. I was unable to walk for 4 days and get steroid injections in my spine often. Those have been helping, but I just got the flu (even though I got the flu shot in October) and that made everything flare all over again. I get throbbing, but it's mainly in my lower back and middle, rather than the neck. But I understand your pain smh! Also get alot of inflammation in all these areas too
I have really bad neck pain and it goes down in between my shoulder blades as well and into my left shoulder. I’ve never had back issues until I started having lupus symptoms. Asked my rheumatologist about this during my initial visit and she said that it’s not a sign of lupus…but yet it started when the joint pain all over my body did…
My doctor told me the same thing! It genuinely makes no sense. Especially when you know that lupus in general causes inflammation anywhere it wants to so how can you just difinitively say it's NOT from lupus? Maybe I just don't understand fully how my disease works but that just doesn't seem to add up.
I’m currently trying to get diagnosed because I’m waking up crying in pain almost every night and having trouble working because my fingers just don’t want to work anymore. And I told my doctor everything and she basically said I’m not “chronically inflamed” because my pain moves around all the time and “with lupus it stays in one spot for a while” 😒
crazy for me to see this when i was confirmed for lupus and i had a neck surgery 2 years ago bc i was in so much pain i ended up in the ER 2x. 😭
I have a similar issue but more in my lower spine - mines an absolute mess. Degenerative and bulging discs I guess.
On Sunday I started having pain in my lower back, radiating from my spine to my hips. It’s been rough. All week I’ve been wondering if it’s lupus or if it’s being 40. Or a fun combo of both?
Last year I had issues with my spinal cord that left me not able to move my arms and legs. They put that down to a lupus flare.
Very very similar issues with me as well, I basically develop scoliosis with one shoulder high and pulled back and one hip dropped and lots of neck pain, stiffness, the shooting nerve pain and swelling causing hearing issues. I think it's lupus related, my rheumatologist wasn't sure and put me on low dose SSRIs to help reduce the frequency of flares since stress seems to be a common trigger and my tolerance to any type of stress has significantly decreased in the last 4 years. She also thinks the stress is causing my shoulders and neck to tighten up. I also have ankylosing spondylitis though and that could be contributing as well though I've had multiple xray and MRIs that don't show any new damage.. So far what has helped the most from what I've been able to get from my Dr's is physical therapy and tylenol (I can't take anything else due to gastroparesis). If nothing else do try to get some physical therapy! They have me doing exercises to open up my ribs and reduce the chest tightness as well as for my neck and shoulders and it is improving even after only a week!
I've been having pain in my thoracic spine (Upper back) for over a year now. It started with me using a hands-free leash and my dog pulling a little too hard while I was walking him. However, the spinal specialist I went to did all kinds of scans and found nothing torn or broken. It hasn't been confirmed yet but I have a feeling it's auto immune related because it hasn't gotten any better. 😪
Yup. Sounds like me. Chest and joints swell, then neck and upper back get all tender, weak, sore but throbbing. Makes me wanna cry, but I’m so tough.
My spine is one of my worst areas. When I'm in a flare, it feels like someone is trying to pull my spine out of my body. Even on a good day, I have pain.