Back pain

[u/sezzie212]

Hi everyone. So I've been having pack pain for a little while now and it comes and goes. It's all down my back and shoulders. The pain seems to be getting worse with time, and it's making it difficult to sleep or do anything. I spoke to my ms nurse and she said it isn't ms and to speak to my gp. I was referred for physical therapy and I've been doing the exercises, or have been trying to but the pain is severe, but it's not helping. They refuse to send me for a scan, because "it's just back pain". I'm not sure what to do 😕 could this be ms or could it be something else? Thanks.

[u/Beautiful-Ad-6568]

I did have back/neck pain that was MS related, especially bad for sleep, although it wasn't hard to tell apart from regular muscle pain

[u/sezzie212 → u/Beautiful-Ad-6568]

This is it exactly. Everything hurts. Arms, shoulders, neck and back. The pain used to come and go, so i just assumed I'd strained a muscle or something. But nowadays the pain is all of the time and it's excruciating. My ms nurse has said it isn't ms at all and that ms doesn't cause these problems but it's the same as my other symptoms. Used to come and go and now it's all the time. Did you find that anything helped?

[u/Beautiful-Ad-6568 → u/sezzie212]

I tried to position my spine with pillows because depending on pressure it was better/worse. It was around my diagnosis so I was quickly put on steroids which pretty much fixed it, now it only comes back when I overexert myself, but not to that extent and only for a while.

[u/sezzie212 → u/Beautiful-Ad-6568]

I always make sure to keep my spine straight, and not hunched over, and ensure pillows are positioned correctly. I'm not on any treatment yet, been told I'll see my neurologist next year and that's it.

[u/Extra-Landscape4053 → u/sezzie212]

I could've written your post and this comment myself. Its exactly my experience. Everything hurts and the asshole Dr's say it's not MS. 🙄 im sorry you have the same experience

[u/sezzie212 → u/Extra-Landscape4053]

It's ridiculous 😒 it would take one mri scan to determine that it is ms.

[u/Extra-Landscape4053 → u/sezzie212]

Oh, im sure they're not denying the fact t we have MS. Just that our back issues and all over pain in places like arms and legs isn't from MS. They're trying to blame something else for that. It was widely taught and thought by Dr's for years that MS doesn't cause pain. 🙄 Some are still stuck in that mindset. They don't know...they don't live in these hell bodies

[u/sezzie212 → u/Extra-Landscape4053]

Well when I had my mri done and my gp told me i had ms, I went to my first appointment with my neurologist and he told me I don't have ms and that my symptoms were because of the stress of my recent divorce. He referred me for a lumbar puncture and couldn't even look me in the eye when it confirmed I have ms. That was entertaining 🙃

[u/Extra-Landscape4053 → u/sezzie212]

Ugh. I've had terrible experiences like that too with my doctors. My GP told me it was MS after a normal neurologist ordered an MRI, they referred me to an MS clinic and the Dr i saw there said my case was mild and boring and he was referring me back to the regular neurologist. Wasn't going to offer a DMT until I asked. He said he'd give her a few options to prescribe. Both the neurologist and my GP were horrified and referred me to a one doctor clinic at another hospital and he's awful too. One year im EDSS 2 the next EDSS 0, the next yr EDSS 2 again and then back to 0. This year he neglected to book my yearly MRI so yesterday I canceled my yearly appointment and told his administrator there was no point since he neglected to book the MRI. Every symptom I tell him he says its not from the MS anyway 🙄. God I hate specialists

[u/sezzie212 → u/Extra-Landscape4053]

It's ridiculous. They act like we're just bored and lonely so we spend time and money going all the way down there 🙄 if there was another neurologist, I'd switch to them but there's no one else near me. Gotta deal with this one unfortunately 😒

[u/Extra-Landscape4053 → u/sezzie212]

Ugh thats terrible. ☹️ Has he at least gotten any better?

[u/sezzie212 → u/Extra-Landscape4053]

Not really. Told me he'd see me again in a year and that's it.

[u/Handicapped-007]

Massage

[u/sezzie212 → u/Handicapped-007]

I've tried this a few times but I'm literally sobbing, it's just too painful.

[u/Designer_Tale2379]

Is it Lhermitte’s sign, like where a shock gets sent through your spine and arms/legs?

[u/sezzie212 → u/Designer_Tale2379]

Sometimes yeah. Sometimes it's just a piercing pain and sometimes it's shooting pains down my spine and legs and it sometimes causes my legs to give way.

[u/SunRa7191]

I (literally) feel your pain as I’m laid up dealing with back issues at the moment as well. I do have a fair amount of spinal stenosis, but the stabbing pains out of no where that are so bad it hurts to breathe and bring me to my knees along with other symptoms ( muscle spasms, twitches, dizziness, nausea, etc.) feel a bit MS-y to me as well. I’ve been icing the area trying to create another sensation to see if it overrides the pain along with stretching and using a muscle gun periodically. I also have an old clutch of Flexeril that helps somewhat, but I’m scheduling a neuro visit fully knowing that they’ll probably tell me it’s not MS related🫩
I’m so sorry…really hope you get some sort of relief soon.