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Jenny

RLS

I saw my neurologist this week and mentioned that my legs have been driving me mad for around 8 months. They are constantly burning up and often keep me awake at night. When I walk the pitiful distance that I can still walk I feel like someone has switched my legs off before I’ve reached my destination - so inconvenient! I ask myself, “would it be so ridiculous if I actually crawled the rest of the way? Or, shuffled on my bottom?” How embarrassed would I be should someone see me? or would I just suck it up?" Honestly, I think the latter. Anyway, I guess what I’m asking is:- What exercises/stretches can you recommend to ease this horrible discomfort? I’m prescribed Gabapentin but haven’t started it yet.

Thanks in advance for your help,

Jenny

hi jenny

what you really need is a neuro physiotherapist, ask your ms nurse if this is possible.

basically it is for building strength in your legs.

my feet are always burning, so badly that i can’t wait for snow because i’d get out of bed and go outside in bare feet.

good luck

carole x

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Jenny,

I endorse what Carole has said. Your physio will prepare a suite of exercises that will suit your requirements and ability. I am following a course of Pilates type exercises that can be done either sitting or lying down.

If you are not already doing so, have you considered taking Magnesium? It often helps with twitchy legs.

For neuropathic pain, I take CBD paste that I have to finance myself, at about £50 a month. I was prescribed Gabapentin but gave it up after a few weeks once I tried CBD. There are no awful side effects with CBD. If you are interested take a look at the CBD Brothers website. I have been taking it for the best part of a year now. It also helps with general wellbeing.

Best wishes

Alun

Without wanting to suggest that CBD or physio is a bad thing, sometime mainstream drugs are a good thing too!

Burning legs might be helped by a neuropathic pain drug, such as Amitriptyline. That’s what I take it for.

Maybe your GP could suggest something useful. But of course both physio, massage, magnesium and CBD also have their place in the treatment of neuropathic pain.

It’s a nasty old symptom alright and you could do with something to help.

Sue

I think yoga might be a good option. I heard great reports for yoga and ms. I’ve done it only a few times in the past but I’m going to start again. I always look for more alternative therapies instead of going straight to medication although I know most people need it

Hi Jennifer McGregor . I would start the gabapentin right away don’t be scared of side effects you may not get

This is a very good drug for your sort of problems it won’t work right away but it will work .

We do have to work with the neuroligy team we often hear on here people complain about thier neurologist then you

Hear they have been self medicating away from thier care plan .

Hi Jennifer,

Drugs; personally I hate them. I’m so lucky, in my 44 years since diagnosis I only take one; won’t go into that; soon maybe two when I start having Vitamin B injections.

Exercise; yes that is essential and what many of us lack. Mr. Motivator on the MS Trust website is brilliant; simple easy exercises; see https://support.mstrust.org.uk/shop?prodid=245

I’m afraid I’m exactly what hillbilly is referring to ’ then you hear they have been self-medicating away from their care plan.’ Don’t complain about Neurologist’s; I’ve not seen one in 30 years.

This may work for me, but everyone is different; listen to your doctors and exercise.

George

I am also one of the self-medicators previously alluded to. I take CBD paste, see previous entry, and also Biotin. That is in addition to a high dose of Vitamin D3 and Magnesium. I also follow the Swank diet and take probiotics in my diet.

I believe that we should take as much ownership of this condition as is humanly possible in an attempt to slow down the progress and alleviate as many symptoms as we can. I apologise if this sounds sanctimonious and self-righteous but I do not intend to be so, merely pragmatic. This approach could combine the use of Big Pharma medicines prescribed by our doctors, if available, intelligent self-medication, exercise and diet.

As for a care plan, I do not have one therefore any deviation is out of the question. The nearest I have is my exercise plan, devised by my excellent physiotherapist, plus the one of my own making as outlined above.

There is one prescription medicine I would like to try and that is Sativex. Regrettably, as you all know, this is not possible in England unless you are lucky enough to be part of a local trial. I did try to join one running from James Paget hospital in Gorleston, but the list had closed.

Furthermore, one of the entry criteria was that candidates had to have tried medication for neuropathic pain, such as Gabapentin, and that it had failed. In my case, the Gabapentin did work but I did not like the side effects such as weight gain and general dopiness, so to speak.

My options were to either continue with the Gabapentin or to finance an alternative. Sativex is cripplingly expensive, but CBD paste was affordable and could be funded from my PIP allowance.

Ocrelizumab is on the horizon and I would consider using it, should I qualify. If it does what it claims on the tin, and reduces progression by 24%, then why not?

This post has become rather longer than I had anticipated and I am sorry if I have induced mental paralysis amongst you. How to lighten the mood? Let me see…I could read articles in the newspaper about this country’s Brexit suicide mission or trawl the iPlayer for comic relief. It’s a tough choice.

Toodle-PIP

Alun

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