Last reply 10 months ago
Spinal lesions and back pain

Hi !

So I’m trying really hard not to blame all aches and pains on MS – but I can’t help but assume!

So I’ve not had a lumbar puncture yet, I also suffer with Ms hugs quite regularly. But lately my back has been hurting so much it makes me breathless with anything I do and I feel like I can’t stand up straight. It’s not lower back pain, it feel more in my shoulders and middle of my back.

I’ve tried stretches, they help for maybe 5 minutes but then the pain is back again.

I’m wondering if having spinal lesions can cause this to happen as no matter what pain relief I take it makes no impact on the pain at all.

Standing / sitting / laying down everything is uncomfortable.

Any advice appreciated thank you! Still waiting for my latest MRI results it’s been over a month now… getting extremely anxious!


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1 year ago

Hey! I’m sorry you’re in pain. I’m in pain everyday and all types at once. Back pain, nerve pain, and spasticity. I can’t even get out of bed or function most of the time without taking a pain killer first. I’ve been in PT for a few months and it helps, but only for an hour or two usually. My MS nurse said it’s very uncommon with MS to have that bad of back pain, but they looked at all of my tests and there’s nothing else they can say is causing it either, but I am being tested for NMO which is like MS just usually more severe and can cause pain along with it. I was getting the pain in the same spot, upper shoulders and neck, but also lower back. My MRI did show a lesion near my neck that was three times the size of a typical MS lesion. I’ve tried many things for pain and the only thing that helps with my back pain so far is oxycodone. I hope you feel better soon! Best of luck!

1 year ago

@laurasavage567 , you’re already diagnosed and under treatment, so there should be no reason to call for a lumber puncture.

As for the MS Hug, aka Banding, this is the most badly named symptom. Hugs are to be enjoyed and may leave us breathless, but not like this! It’s caused by spasms in the intercostal muscles, which are several groups of muscles that run between the ribs, and help form and move the chest wall. The intercostal muscles are mainly involved in the mechanical aspect of breathing. These muscles help expand and shrink the size of the chest cavity to facilitate breathing.

There are some details of this symptom here, which might be useful :-

I’m not surprised that you’re getting anxious about your latest MRI. Phone up your Neurologist’s secretary and politely chase the results.

10 months ago

@laurasavage567 HI how are you doing since your treatment? I get back pain and have a spinal lesion X

10 months ago

Hi @melmel1 !

So I actually had a catch up with my ms nurse today to let her know that I’m all good! (As good as can be)

My treatment has worked so far. I was admitted to hospital for 3 days end of sept last year, as my lemtrada had also caused me to have liver function damage / gaundice / suspected auto immune hepatitis. But since then I’ve been pretty much ok.

My latest MRI showed no new lesion activity, and I’m on meds to control / help reduce the amount of MS hugs I have, which at the moment is my only ms symptom that I get. I’ve not had a lumbar puncture before! They suggested I have one but I’ve never actually been booked in, can’t say I’m too worried about that I’ve heard they’re not nice 😂

For my back pain I’ve started treating myself to a monthly massage, I’m also a lot fitter now physically as I’m back to work working 12.5 hour shifts and go to the gym occasionally and bike riding. So the fitness has seemed to help my back.

Yoga is also something I’m looking into, as a lot of people recommend this so perhaps that would be good for you too?

I hope all is well with you. Take care x

10 months ago

@laurasavage567 I’m really pleased to see you are on the mend it seemed like you went through a lot what medication was you offerd was you given a choice? I saw on one of your posts you had blurred vision for 4 months did that just clear up on its own mines drivin me insane lol, but I’m wondering if my diets contributing to this because I’ve been eatin so bad since been diagnosed and Suguar,I need to start treating my self to massages and all that I’ve started doing Pilates and body balance, I have appointment this wed to find out what type of ms I have I’m nervous, thank you so much for the reply xx

10 months ago

@melmel1 thank you, took a little while but I’m getting there!
I was offered a choice and it was between tysabri and lemtrada – but they suggested the lemtrada could be best for me so I went with that one! And I’m glad that I did because how things are now I’m pleased with the result (so far 😂)
It’s completely normal to feel nervous! It’s a huge thing to get your head around! But on the positive side at least then you can discuss with the neurologist and ms nurse which treatment will be best for you and your type of Ms and so then you can have the peace of mind knowing that you’re trying to fight this bastard Ms!

My first optic neuritis I didn’t catch it in time so I wasn’t able to have any steroids, so it was an issue for me for a while but then when I got it in my left eye I caught it quickly and went on the steroids. As horrible as they were it did actually work and now I don’t even notice any bad vision in either of my eyes. They do say that if it’s left untreated it can recover by itself but it could take a while!

With diet I’m the same really but what I’ve done is start to reduce my dairy intake so I’ve started using red milk – for coffees etc. I eat sardines now for lunch like 3 times a week as fatty fish is good, and in general just try my best to be healthy I’ve cut sugar out of my coffees as well! Small changes but maybe could make a difference. I also take a vitamin D tablet every day as my ms nurse strictly told me too 😂

I would defo try to have a healthier diet (I’m not preaching as it’s hard to cut out things we like!) and Pilates is 100% a great idea that will build your strength and core which will hopefully also help your back pain. With the vision issues I’m not too sure what to suggest but when you meet with your doctors on Wednesday ask if there is anything they can do to help or suggest?

Keep positive! You’ll be nervous and I wish you all the luck for Wednesday, but at least you’ll be able to move forward and hopefully get a treatment that suits you soon! Keep up with the Pilates, think positive and good luck!

No worries at all please message me again if you have any more questions I’ll help the best I can 😂 Xx

10 months ago

@laurasavage567, I’m telling you this ms is a barstard lol was your ms aggressive why u were offerd infusions?i complained to my ms nurse About my vision a few weeks ago and she said because mine is not tht bad I should not risk steroids, so frustrating to here she says she knows what she’s doing been doing it 25 years, I just hope I have relapsing ms and nt secondary as I reckon I’ve had this at least 10 years and did not know, I’m Defo going to change my diet, so have u been able to work ect and feeling optimistic xx

10 months ago

It is isn’t it!!
Yeah mine was diagnosed as highly active relapse remitting so they got me into treatment so fast cause my neurologist said if we wait then we don’t know what could happen with my mobility etc! I was lucky though I’ve heard lots of people saying they had to fight and weight to be put onto any treatment. I suppose each hospital is different so I hope yours is a good one!!
Yeah they were a bit hesitant to give me steroids because of the side affects I think. I was ok when I was on them but as soon as I came off them I was literally bed bound for 2 days I felt awful. Really sick and low energy to the point I literally didn’t get out of bed unless I really had too! But after a few days I picked up a little bit.

I’m really sorry to hear that you think you’ve had this for about 10years undiagnosed. What’s your mobility like if you don’t mind me asking?

Diet changes is a good idea, I just felt so frustrated that I couldn’t physically do anything to make my Ms go away so the only way perhaps I could have a little bit of control over it was to just make small changes in diet that would hopefully help. Google some anti inflammatory diets and see what works for you?

I’m actually working as a healthcare assistant now in the hospital nearby, I work 12.5 hour shifts 3 / 4 days a week! I started in November last year and at first I was really nervous and unsure if I’d physically be able to do it, but I thought I’d at least try cause I’m still young and thankfully I’m actually ok! My fatigue was much much worse when I was less physically active, I still have fatigue sometimes now but I’m just happy that so far I’ve been able to do my job!

Being optimistic is good, everyone’s Ms is different and so you need to find a diet and exercise that suits you personally. But I really hope Wednesday they’re able to give you answers because not knowing is the hardest part I think! There is lots of support out there just have a look into things in your area xx

10 months ago

@laurasavage567 the ting is my mobilitys fine i walk around evrrywhere.i cn go gym i do gt sme aches and pains now but mobilitys fine so hoping damage is not to bad sounds like the steroids is hardcore,glad ur feelin better x

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