I was wondering if anyone has a similar symptom to me and what there is available that could help.
I have had 5 relapses in the last year, finally getting a definite diagnosis of RRMS a couple of months ago. For the last few days I have had terrible arm pain, like a constant ache with a burning element to it. It doesn’t go away and is getting worse. My arm is weak too, cant open things and arm feels really heavy. I’ve had something similar before in a relapse but not like this. It’s getting to the point where I can’t cope with it.
Have tried gabapentin and pregabalin before but stopped both because of unwanted side effects. Have tried taking naproxen and codeine (60mg), the codeine helps a little but I fear I am becoming a bit addicted to taking it.
Any suggestions on what I should do before I lose my mind??
L (26 yrs old from Yorkshire).
Hi L, I know exactly what your talking about, I’ve had burning, weakness, pins n needles, aching, heavyness, jerking movements in both my arms (and the rest of my body) for the last 8 weeks. After reading other people’s posts on here I decided to ask my gp to prescribe amatriptaleen ( certain that’s not the correct spelling) will be taking the first 1 tonight, if I could cross my fingers I would… Seems to work for other people. Hope things feel better for you soon Jo (34) xxx
Thanks for your message. I couldn’t bear it any longer so got an emergency appointment with my GP. Just got home. She has prescribed me amitryptiline too to take at night. I’ve been on it before but only on a low dose and it did nothing for me so hoping this higher dose I have got today will help.
It’s unbearable isn’t it? At the moment, I would honestly consider taking someone up on their offer of amputating my arm if it got rid of the pain.
Hope it eases for you too (Hugs).
PS. Would love to hear from anyone who has found amitryptiline helpful with pains in limbs.
Hi, I was diagnosed in June been on Amitriptyline since end of July. Started on 10 mg then upped to 20 mg. I had what I think was another relapse and my MS nurse thinks so too and upped to 30 mg. It has definitely helped with the pain and you have described almost word for word what I felt like. I would quite happily chopped off my left arm and leg!! Well maybe not happily but you know what I mean. It knocked me out at first but after advice from this forum I now take it at 7 o clock and sleep through the night without waking every hour with the pain. I felt 88 not 38! Fingers crossed it works for you too. Carolyne.
I had the same trouble with my arm, started in Feb this year and Gabapentin didn’t touch it. Was prescribed Amitriptyline in June and it has worked wonders. Pain virtually dissapeared.
It does take about two weeks to take effect, I was on 10mg for the first few days then went to 20mg. I also take them between 6.30 and 7.30 so I’m not drowsy the next day.
Ask your GP for these.
I had this pain in my right arm last year. It was awful. I was given Amitriptyline also. It took the edge off the pain but didn’t go completely. It took a couple of weeks to get used to the medication as i felt a bit light headed with it at first.
I am not taking it now as the neuropathic pain has gone but it definately helped me to cope better.
Hope it starts to work for you soon.
Hi all, Thanks for your positive comments regarding amitryptiline. My MS nurse returned my call today and she has booked me in to see a registrar tomorrow (my consultant is on annual leave this week), i think they are thinking of giving me steroids for a relapse. I’ve had tablet steroids once before but do people think I would be best taking oral or having IV if given the choice? Or neither (and just wait for amitryptiline to work)?
Hi L Hope your getting on ok with the Ami, think you’ve had 2 days now like me, not noticing any difference yet, but bit soon to tell. If you get the choice, I would deff reconmend you opt for the IV, I’ve had both, I seemed to get no side effects from the IV apart from a slight metalicy taste in my mouth, whereas the oral seemed to make me feel dizzy, sick and just generally unwell, the taste is absolutely awful too, had to chew minty gum to get rid of it. Hope you get on ok Jo xxx
Hi, just saw this or would have replied sooner. If it is the same pains I have periodically in my left arm I may have a solution. A couple of years ago I started getting shooting pains down my arm which ended in my hand and was a combination of electric shock type pains, a burning sensation and pins and needles. It was absolute agony and any movement of my arm, shoulders etc brought it on. For about 3 months I tried every pain killer in christendom but was still in agony. I was getting to the edge of despair when, as a last resort, I tried acupuncture. The difference was dramatic and within a week the pain had gone. The needles were placed in my neck, shoulder, arm and hands. Every time I feel it flaring up again I contact the surgery and the physio gets me in for 3-4 sessions which usally last for a few more weeks before I go through it again. Luckilly I recognise the symptoms early and self refer to the physio. It may not work for you but you wont know if you dont try.
Hi Gary, thanks for this advice. Do you get acupuncture on the NHS?
I would be willing to give anything a try as the amitriptiline is making me too tired.
I know what you’re going through. My worse symptoms have been continuous stabbing pains in my arm and hands (rather than in the legs like my friends who have MS). I had hypersensitive areas too and couldn’t stand anything touching me. I started on Gabapentin but it didn’t agree with me. I now take Pregabalin and it works well with less side-effects.
Hope you get sorted out. Trouble is with these medications is that they take a few days to start working properly.
Hi I have the same symptoms in my hands and arms, also feet and legs.Seeing my Gp in the morning hope to get some answers regarding MRI. Not been dx as yet so on no meds.I ache from head to toe.
Yes the acupuncture is on the NHS. I refer myself through my surgery and one of the Physios there do the business. I wouldn’t look at any other way of addressing the problem now as it lasts for a few weeks whereas popping pills only lasts as long as the next dose.