First time posting and I’m after abit of info/advice or just a general whinge.
My wife was officially diagnosed with RRMS about 5 years ago after first suffering blurred vision 10 years ago. The blurring disappeared on its own after 2-3 months.
She regularly suffers from nerve pain and numbness in her upper body but over the past two years she has really suffered from back pain and trigger points in her neck and shoulders.
We have been back numerous times to the GP who generally tries to dismiss her with “well it’s MS, there’s nothing we can do”. She would probably be able to accept this if not for the MS consultant who says that none of her back/neck or shoulder pain is MS related.
She has been referred to an NHS physio for physio and acupuncture (The acupuncture was basically a joke due to the appointments being every 4 weeks and one of the weeks they didn’t have any needles).
We’ve read that the back pain and trigger points are not a MS symptom but I’m wondering if anyone else suffers from this and how they ideally treat it or manage it.
We’re fed up with the GP’s/Consultants as they just don’t seem to be listening or even saying that the pain is just due to anxiety. Is it worth going to see a private physiotherapist?
Is it possible that your wife’s neck/back/shoulder pain isn’t directly neurological, but is as a result of her MS putting her body out of alignment? Ie that it’s a direct result of neurological issues, even though the actual pain isn’t neurological in origin?
I get dreadful upper arm and shoulder pain which is directly caused by my walking being so dreadful I lean forward over my walker for the little walking I do. Plus I sit in such a way that it’s causing my shoulders to curve forwards.
I see a neuro-physiotherapist and most of what we do is musculoskeletal. It still doesn’t cure the pain, so I use Voltarol on it all the time. And try to do the things that are supposed to help. And not do the very things that cause the problems. But it’s difficult to do.
I have seen a private physio in the past. And to be honest what she’s done to help has been miles better than what I’ve done with the NHS! (And I’m thinking about getting her to look at my shoulders again.) But it’s not cheap. And I know whatever happens, I’ll probably end up with the same problems in a few months time.
I too get a lot of back pain which I know is not MS but have you thought of being referred to a Rheumatologist as they may be able to help as it is bones that are the concern. Especially as she has been told it is not MS. My Rheumy has put me on other drugs that have really helped. Hope this helps and good luck.
I have RRMS and almost constant back pain which my neuro maintains is not MS-related but rather more physical symptom. I do trail my leg foot badly and as I am walking what I term off-gait I think the pain develops due to over compensation on specific muscles in my back as with SSue. Have also seen a rheumy who has diagnosed some arthritis in my lower back which may also be the culprit. Treatment-it is hell annoying the back pain I get most days which usually radiates as pins and needles down both legs. I am prescribed Gabapentin and take about 9x300mgs most days which gives me some relief. I am also not ruling out the back pain is a direct consequence of MS but cannot get concrete proof otherwise. Hope this is of help.
Hi Thanks for your replies. We’re confident that her back pain isn’t MS related as its made worse doing different tasks, its just trying to convince the NHS of this. She has now been to see a private Neuro Physio and normal physio and was thinks that what the physio did seemed to help but its early days as shes only had one appointment with both. Again yesterday she was let down by the NHS as had her third appointment with a physio who advised he didn’t want to do anything as she wasn’t his patient so she again at the back of queue to see the person who did her 2nd assessment. Hoping things improve with the private physio.