Newly Diagnosed

I am newly diagnosed with MS. I have a great deal of soreness and stiffness in my legs. I have not yet been allocated a date for Physio and the pain although not overwhelming is wearing me down. How do I learn to cope with it? How have other people managed?

Hi Anon,

I’m sorry to hear about your diagnosis. Physio alone is not sufficient for most people. You should not be having to “learn to cope” with pain: it should be getting treated!

I take it from your post you are probably not on any medication to help? Is that because you are against the idea, or because it hasn’t been offered? If it’s the latter, then you need to start rattling cages, and saying that pain is adversely affecting your quality of life.

Having said all that, I don’t think any symptom relief (that I’ve heard of) is 100% effective, so there still will be a little bit of “learning to cope”. But you’re not expected to make do without medicine - hardly anyone with MS takes nothing at all, so if nothing is suggested, please query it.

Tina

In my area your GP can refer you. Its a neuro physio you need and mine has changed my life dramatically for the better in a very short space of time. I have also found gentle swimming eases that pain and tightness for a couple of hours after at least…I definitely feel less stiffness and pain when I can do some acitivity since the sessions with the neuro physio.

Gillian

There is a variety of meds that can help with pain and stiffness - so don’t suffer in silence - make some noise and get your GP to prescribe you something. If your GP is reluctant to prescribe something without your neuro’s approval, then give your neuro’s secretary a call and ask for a recommendation for your GP. If you have an MS nurse, then give them a call and ask about meds. Your GP should be happy to do as told by either your neuro or your MS nurse - all you have to do is relay the information.

The right meds can make the world of difference!

Karen x

Thank you all for replying. I rang my MS nurse and asked if painkillers were available, but she said that they were not the answer and that I should try physio first. A further problem for me is that I broke my femur in May and still suffer discomfort from that injury. I was diagnosed with MS beginning of August but it took18 months, after being told by two doctors that my symptoms were all in my mind. I don’t feel that I have got into the MS “system” yet as far as help and advice is concerned. I think I will go to the doctors next and see what medication she can prescribe for me.

Hmmm. Not very impressed with that response. For a start, not all symptom relief consists of painkillers. If your muscles are very stiff and tight, it’s likely you need some kind of muscle-relaxant or anti-spasticity agent, not just “painkillers”. I don’t think it’s right that you’re not on anything. I’m not dismissing physiotherapy, but I don’t think it’s a cure-all, and besides, you haven’t even got a date yet! Why should you be just living with it, in the meantime? I agree with seeing the doctor.

Unfortunately, some GPs (including mine) can be very wary of prescribing symptomatic treatment for MS without getting it approved in triplicate by a neuro or MS nurse. However, DMDs are the only ones that HAVE to be prescribed by a neuro. Anything else can lawfully be prescribed by a GP, without needing the neuro’s permission first - but some of them either don’t know this, or are reluctant to take the responsibility. I had to have a row before my surgery would prescribe, but once they did, they’ve been fine about it since.

I hope you get something sorted out. Now that you have a firm diagnosis, it shouldn’t be very controversial to be on some sort of symptom relief. I’m sure most of us are! And that’s without the pain from the fracture.

Tina

x