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Alisonne

Severe back spasm when standing

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Alisonne

The worse thing now is the spasms of back pain I experience when standing for any longer than a couple of minutes. These disappear the moment I sit down. Has anyone any experience of this or any idea why it happens and what I can do about it? Thank you!

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Sluggish
Marina

Hi Alisonne and welcome! :flowerface:

 

Back pain is something I live with permanently. I can’t stand on the spot for more than a minute or two without getting really acute sciatica. I can also get very sharp lumbar back pains, more so if I have to bend or twist. Sitting down usually helps to relieve it.

 

Both my sciatica and back pain is caused by a lumbar spinal stenosis that I have, which is a narrowing of the spinal canal. Sitting down, or bending forward when standing, relieves the pain as it opens up the canal. I also have problems with discs.

 

I’m not saying you might have spinal stenosis, I’m just explaining what causes it for me. It could be caused by other back problems, like with discs. I’ve heard a number of MSers say they get back pain, with apparently no spinal problems - this might be as a result of our posture going out of whack, due to some of our MS symptoms.

 

Pain - Musculoskeletal (Nociceptive) Pain

https://www.mstrust.org.uk/a-z/pain

 

MS symptoms that can cause poor posture

https://www.mstrust.org.uk/understanding-ms/understanding-and-improving-your-posture/ms-symptoms-can-cause-poor-posture

 

This might sound like a silly question... have you had your back checked out for any possible problems?

  • Like 1

Marina

(belated DX in June '05, SPMS)

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Alisonne

Hi Marina,

Funnily enough, I was convinced I had spinal stenosis back in the early days of becoming ill. I've had 2 full MRIs in the course of my MS investigations - would stenosis show? Over the past 7 years I've seen five physics, all sympathetic but basically unable to help. But you have set me thinking about stenosis again............is there any practical treatment?

 

Thanks for the welcome by the way!

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Marina

I had sciatica and back pain before my stenosis was first seen in an x-ray years and years ago (before MS was even considered). I went to various back specialists after that, had more x-rays, but none of the specialists paid any attention to that first x-ray, they could only see my disc problems, and they offered no help.

 

It was only when I went to a pain specialist that I found someone who believed I did have stenosis even though it still didn’t show positively on an x-ray - he said I was a classic case of stenosis. I’ll never understand how it showed on the original x-ray but not on subsequent ones. The pain specialist later sent me for an x-ray for my hip as I was having pain in it. Whilst that x-ray still didn’t clearly show stenosis, he said he could see something that indicated it, something to do with some widening somewhere. From then on, he nevertheless said it was stenosis, regardless of what x-rays said.

 

However, the pain specialist did say that it can be like looking for a tree in a forest, as my MS could aggravate the stenosis and vice versa, especially as I can also get a pain in my thigh which could be due to either MS or the stenosis or both.

 

It didn’t show on MRIs either - until much later, only 2 or 3 years ago, so it was a relief to finally see “stenosis” on a radiologist’s report! Previous MRIs were for MS and one of them showed something vague on it, the neuro said it wasn’t a lesion as we don’t get them that far down, but he couldn’t say what it was as it was too vague. The MRI that did show it wasn’t for MS but was for a pain in my hip. So maybe it depends on how the MRI is done, depending on the condition it’s being done for?

 

I’ve no idea whether it’s as difficult to diagnose by x-ray/ MRI as this for most people, or if it was just in my case.

 

I get the sciatica and back pain when walking any distance too. In supermarkets, I’ll take a trolley and use it to support me whilst I walk around bent over it... Just walking down any short high street will have me wanting to crawl back up it.

 

If physio doesn’t help, the only treatment I’m aware of are steroid injections into the spine. I’ve had this done several times. Some people find one go at it can help it for years, others need it done again every 2 or so years. Some, find it doesn’t help that much, if at all, which is my case although I think the first injection got rid of the pain in my thigh for good (touch wood!).

 

The only other option is surgery. A few years ago, both my neuro and pain specialist thought it best to avoid it because of the MS, although I’m not too sure why. I wasn’t that keen on surgery myself anyway. Even then, it’s not guaranteed to help - it can be magic for some people and gets rid of the pain totally, but not help much for others.

 

As far as I’m concerned, the pain I get is so bad that I often say it makes my MS pale into oblivion by comparison. I’d be so happy to be able to go shopping even if I walk slowly, maybe wobble about a bit, maybe get a bit fatigued by it, but without this pain!

 

I only mentioned stenosis earlier as it being my own experience, and as you said you got this pain on standing on the spot and it was relieved by sitting down. Sitting down, and bending forward, was about the only physical clue I had that my own sciatica and back pain was stenosis.

 

Might you be able to get referred to a back or pain specialist to try to find the cause of your pain? If it's not stenosis or related to discs etc, then maybe it is just yet another MS thing...

  • Like 1

Marina

(belated DX in June '05, SPMS)

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Sleepy
Scully

Hello Allisonne and welcome from me too.

 

Thankfully I don't have the back pain you describe, sounds awful.

I do have leg pain, if standing or walking for any length of time, but I'm sure this is just the MS. I take Baclofen for muscle spasms which does help to a degree with mobility.

 

I attend a 6 week Physio course twice a year which is for MS patients and arranged by my local Neuro- physiotherapist. I worked really hard yesterday and am suffering today....( here's me thinking that housing is good for you!) but I did push myself hard yesterday.

 

I saw a pain specialist a few years ago and found them very useful, so it may be worth asking your GP to refer you. Not sure if you can self refer in your area, I can self refer myself to Physio here.

 

Scully


Edited by Scully

They are not brain lesions..........they are just bright ideas

 

"The truth is out there"

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Alisonne

Thank you both for the very detailed replies. I'm pretty certain this horrible back pain has roots in something other than my MS.......I'm an ex professional dancer with a long history of back problems. This conversation has prompted me into researching stretches and exercises for lumbar stenosis which I'm adding to my morning routine. I'll report back! Thank you so much for the support and input.

 

PS I tried Baclofen...........by day three I was away with the fairies. Went round in a mental fog, and had to stop it. Its really not for me!

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Sluggish
Marina

What a co-incidence, Alisonne! I was a trained dancer too, although I didn't get to be as professional as I'd hoped due to a chronic inflammation of my knee ligaments early on.

 

Unfortunately, my back pain is now so bad that any exercise, or indeed just normal everyday movements like bending down to empty the dishwasher, makes it too painful to exercise if it involves my back.

 

By the way, just in case it is stenosis, I was once told by a physio many years ago that traction (a form of stretching of the spine in physio) is bad for stenosis. This was after I'd had one go at traction by a previous physio and I ended up in agony. Another physio later confirmed it.

 

I've also not been able to lie on my stomach for years as it causes a sharp pain my lumbar area.

 

Go carefully with the stretches, I'm sure I don't need to tell you that, though :hoop:


Marina

(belated DX in June '05, SPMS)

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Sleepy
Scully

Hello Allisone,

 

Yes Baclofen can cause those side effects. However, after a fortnight or so those 'away with the fairies ' feelings do wear off and it gets on with the business of relaxing the muscles.

 

I had the same with Gabapentin and later Pregalin, for the first couple of weeks I almost didn't know who I was....but it all soon wore off and the pain is now well managed..

 

I do hope you get some relief very soon.

 

Scully

 


They are not brain lesions..........they are just bright ideas

 

"The truth is out there"

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Alisonne

Hello all,

 

Does anyone have any experience taking LDN? ?

 

Thanks

Alisonne

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Sluggish
Marina

Yes, I do. I've been on it since shortly after my DX, about 11 years now. I take the 3mg capsules. It hasn't helped my back problems at all though, although everybody's different in what benefits or symptom relief they get from it.

  • Like 1

Marina

(belated DX in June '05, SPMS)

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