At the moment I just seem to be getting all sorts of different pains and feeling in my feet it’s like a burning and prickly feeling, and in my legs and bum area I get a feeling as if I’m been rubbed and it feels like a burning feeling my legs are so stiff and the pain when I try to walk it gets harder and harder and I am dragging my leg more and more I seem to be getting headaches more and they are lasting longer I don’t know wether it’s my MS changing or weather it’s a relapse starting or is it just my last relapse not recovered 100% I know my consultant has viewed his opinion that I may have gone into secondary I don’t want to give up but sometimes things just feel its such a effort and a struggle Sometimes I worry as to how it’s going and people just don’t seem to understand what I’m saying
It’s all common stuff.
You said you’re seeing the MS nurse tomorrow, so bring it all up then (write it down, if you think you’re likely to forget).
Hi, I get this feeling 24/7 now, once of a day it came and it went, not now, it drives me crazy, and at time wears me down, I asked my GP to be referred to the pain clinic, I do take Gabepentin but at the moment that doesn’t seem to touch it, I feel really sorry for you, take care, Jean x
Try distraction techniques - keeping busy. I find it helps and eventually the brain makes adjustments.
Best advice to to stay as relaxed as possible - it works for me but everyone has to find their own way of managing these symptoms.
Hi I get this and it is more than annoying since it limits life hugely. Ridiculous to say distraction techniques and keeping busy - keeping busy can make the pain worse. I find it hugely irritating when people offer advice when they seem to have so little understanding of how debilitating constant and severe pain is.
I am an expert unfortunately. In my book severe neuropathic pain trumps all the rest of my multiple symptoms. I can cope with everything else and to be honest I have thought at times that I have had enough of a life like this. But I am by nature positive and gregarious and human interaction does help me cope with it.
So I would advice you to try to get on with your life by all means but limit physical and emotional expenditure. Relaxation techniques can be helpful but the most helpful non-medical aid for my burning is zilllions of gel and freezer packs in the freezer at all times.
I take amitriptyline and pregabalin. I have tried EVERYTHING and nothing really works. The drugs I still use merely help me sleep + heavy duty sedatives.
I sleep with use of an ipod to relax my mind and use breathing exercises to try to damp it down - it helps to a limited extent. Oh yes, and I sleep with gel freezer packs on my legs.
I am on the list for a spinal cord stimulator at Queens Sq, tho only 50% chance of reducing pain and even then would only do so for max of 50%.
I hope some of these ideas help.
Oh and by the way tho I have had this pain for 11 years for most people it will be part of a relapse and then go or be at manageable level.
p.s hope I dont sound grumpy and negative x
it’s the same for me, its nerve pain, or so my neuro told me, I get this 24/7 now, startes off in the morning not too bad, by the end of the day I’m stuck to the ceiling, bed time is a nightmare, my stiffness is under control with baclofen and gabepentin, but even so a times this isn’t working as it should, I also get headaches, but nearly everyone on here does, it would seem all of this is par for the course, take care, Jean x
Very common. I feel like this all of the time. I am on 2700mg of Gabapentin per day and take 150mg of Dosulipin per night as well as the good old Rasta 'erb. This helps a lot. Use natural stuff ('erb) in tea or if you have a vape, use that. I hope that this helps. I also use Sativex to help with extreme pain. The burning is usually fixed by the GAbapentin.
I send big love and hugs as this stuff is horrid and I know what you are going through. Don’t waste time sufferring and speak to your nuero immediately. If you can’t get in touch with them (always leave msg with secretary as they will get back to you), get in touch with your MS nurse or GP.
Best of luck, stay strong,
I have had constant neuropathic pain since 2003 and sometimes it is worse than others but my way of dealing with it is to distract myself as none of the drugs work. I am even allergic to morphine. I guess the brain adjusts but positive thoughts and keeping relaxed also work. In the end we are all different and what works for one might not for another.
Cold makes my pain worse and the Allodynia sometimes does my head in but not all the time - thankfully. I will be having my 3rd sympathetic block in March which will give me some relief. I will watch with interest as alternative and new techniques show up on this forum.
Hyperacusis has also worsened and I am waiting for further investigation. Noise is magnified and has become painful and it is this which I find restricts my life the most. I still get out and about in my powerchair but the noise and vibration are hard to cope with but I am stuborn.
Trying Pregabalin for a second time but no help after 6 weeks.
I am only frustrated by people who are ‘normal’ giving advice. All on this site I take notice off and encourage their comments.
Have an enjoyabe evening and don’t let the you know what get you down.