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Burning Feeling in Arm - Relapse or just a Symptom?

I’ve had a burning feeling in my right arm the past few days. Could this be another relapse or just a symptom?

Hi Tricky

If this is a new symptom for you or one that has recurred after a long while without it then it is likely to be a relapse. Contact your MS nurse asap before it gets any worse.

I had the burning feeling (accompanied by something like ants crawling under my skin) 4 years ago. It is a sensory relapse but it is still nasty. I spent a week with one arm hanging out of bed because I couldn’t even bear the sheet covering it. It took a week for the nurse to get out to me as she covers a large, rural area. She prescribed amitriptyline but it took a week to kick in so I spent another week (in October) wearing vest tops and sleeping (well trying!) with one arm out of bed. I was a zombie by the time the drug kicked in.

It was logged as a relapse but not clinically significant as ‘it didn’t stop me doing anything’ (apparently sleeping doesn’t count then!!!).

Tracey xx

Oh how depressing :frowning: I started Avonex nearly 3 months ago so was hoping the relapses would slow down.

I feel fine other than that but haven’t had any symptoms for months and months but was worried this was the case as I was particularly stressed out last week.

I had the crawling feeling you mentioned, but on my forehead when I first had an attack back in January, it drove me literally mental and to add insult to injury, my face dropped on the left hand side (luckily recovered again after a fortnight).

Oh how depressing :frowning: I started Avonex nearly 3 months ago so was hoping the relapses would slow down.

I feel fine other than that but haven’t had any symptoms for months and months but was worried this was the case as I was particularly stressed out last week.

I had the crawling feeling you mentioned, but on my forehead when I first had an attack back in January, it drove me literally mental and to add insult to injury, my face dropped on the left hand side (luckily recovered again after a fortnight).

Well that’s two other things we have in common :wink:

I had started Rebif in August and had the burning arm in October so my neuro said not to get too worried as the meds can take a few months to build up in your body and the fact that it was a sensory relapse means it’s a milder one so it doesn’t mean the drug isn’t working :slight_smile:

Also I had a droopy face - mine was the right side - it was part of my first ever symptoms also within that first year. I had slurred speech too and couldn’t write properly. Everyone now tells me that if the FAST campaign had been on TV at the time they would have all called an ambulance for me thinking it was a stroke as I was dribbling from the corner of my mouth too (very attractive). All classic stroke signs ha ha. My first year was hell but it did get better.

Now for the good news. After the burning arm, I had three and a half really good years on Rebif before having two relapses this year affecting my legs. So this could be your last relapse for a long while … I will keep my fingers crossed for you.

As for my burning arm, I’ve never managed to get off the amitriptyline sadly. Every time I try the burning comes back and I have to take the tablets again. On the plus side they do give me a good sleep at night (especially when I mix them with a glass of wine but don’t tell your nurse I said that :wink: ). I’ll hope for a better result for you

Tracey xx

Yes, my face was the same, in fact that’s how I realised, I tried to drink an early morning drink and I dribbled it straight out and then as the day progressed it completely dropped and I couldn’t blink on that side or anything. At the same time I developed a weak left leg which still remains now.

Ah, that’s good news that Avonex may still be okay. The consultant said that it may not be strong enough for me but it may just work so hopefully that’s my lot for a while anyway. Will you stay on Rebif despite the recent relapses?

I’m off on holiday next week and I was getting overly stressed with preparing for it so think that may be what sparked this off. In an ideal world I’d give up work but don’t feel ready to yet.

Nicola x

Well at least you can relax next week when you are on holiday. Holidays are lovely but the preparation is so much stress I wonder why we bother ha ha. I would love to give up work too but it’s a reason to get up in the morning. I have a feeling I would become really lazy if left to my own devices!

My neuro thinks Rebif doesn’t work for me any more so I’m waiting to switch to Gilenya (no more injections, yay!) but apparently there were some slight irregularities in my ECG so now I have to have an ultrasound of my heart at the end of October before the cardiologist makes a decision. Otherwise my choices were Copaxone or talking to the Campath trial team. I don’t fancy daily injections but neither do I fancy a leukaemia drug so I’m still pinning my hopes on Gilenya. At the moment I’m not on anything which was a little scary at first but so far nothing bad has happened (eek, where’s a large piece of wood to touch).

Have a fantastic holiday - just get some neuropathic painkillers before you go. Where are you off to?

Tracey x

Oh yes, we have that in common too, I also think I may just sleep all day if left to my own devices.

Neuropathic painkillers?! I’m so new to all this - what are they? It’s all so complex isn’t it. Hope whatever choice you make it’s a successful one.

Thank you. Off to New Zealand for 2 weeks and California for 1 week. Actually going to my Father in Law’s joint living wake/60th in New Zealand but stopping over on the way back. x

Oh yes, we have that in common too, I also think I may just sleep all day if left to my own devices.

Neuropathic painkillers?! I’m so new to all this - what are they? It’s all so complex isn’t it. Hope whatever choice you make it’s a successful one.

Thank you. Off to New Zealand for 2 weeks and California for 1 week. Actually going to my Father in Law’s joint living wake/60th in New Zealand but stopping over on the way back. x

Oh, sorry to confuse you there. Amitriptyline is actually an anti-depressant in high doses but is used as a neuropathic painkiller in low doses. The burning you are experiencing is nerve pain or neuropathic pain so ordinary painkillers won’t touch it. Basically, due to the MS, your nerves are sending the wrong signals back to the brain and the brain interprets this as pain. My nurse prescribed amitriptyline but yours may have his/her own favourite.

Your holiday sounds fantastic. I have a Facebook friend who lives in NZ, we used to be at school together. The area she lives in looks beautiful; it looks like a fantastic place to raise her kids in. A living wake - that’s a new one on me, never heard of that. Is that a NZ thing? At least he gets to enjoy it too, ha ha! I can understand why you are stressed, packing enough for 3 weeks and a party/wake too. How on earth do you decide what clothes/shoes to take (even before you factor in dodgy legs etc)? That’s guaranteed to ramp up your stress levels.

I do hope you are going to post all about it on your return …

Tracey xx

Oh I see, thanks for enlightening me!

My father in law was given two years to live, two years ago (prostate cancer) and a friend of his had a living wake and he liked the idea so the goal was for him to make it to his 60th birthday and combine it with a living wake (he likes his drink so wanted to make sure he was at his own party!).

The fortnight in NZ hasn’t been so stressful, it’s the travel insurance and the week in California with car hire, different hotels, etc. My indecisiveness doesn’t help me either and I probably make it all too much hard work!

Will update when I get back and it will be interesting to see if they let my avonex come with me :slight_smile:

Nicola x

Sensory symptoms (along with fatigue) are the most frustrating ones I think. They can’t be seen, so people think you’re mental/lazy. x

Sorry to hear about the prognosis for father in law but then again he may surprise you all. Prostate cancer is one of the more responsive to treatment so hopefully he can keep going for a while yet. I do like the idea of a living wake though, he gets to enjoy his send off and say a few words to all of you in a (hopefully) light hearted manner. I do hope it is an enjoyable occasion and a true celebration of his life.

I agree with Mrs Chicca. The invisible symptoms are a nuisance. One of my friends kept forgetting about my burning arm and had a habit of tapping me at bingo when she wanted one number. I was nearly hitting the roof with the pain until I threatened to smack her if she didn’t remember sharpish. That reminded her (Sometimes I’m not a nice person )

Tracey x

I find all too often people tell me how healthy I am, they really don’t get it do they?! and yet it was a different story when I was walking around with a lop-sided face so maybe they would prefer that for me!

I think we’re being tested enough with MS than to have to put up with any old nonsense. I’m definitely not quite as accommodating as I once was :wink: x

I find all too often people tell me how healthy I am, they really don’t get it do they?! and yet it was a different story when I was walking around with a lop-sided face so maybe they would prefer that for me!

I think we’re being tested enough with MS than to have to put up with any old nonsense. I’m definitely not quite as accommodating as I once was :wink: x

Ah yes, the good old ‘you can’t tell’ comment. If you’re not in a wheelchair, drooling, unable to move, etc., then people think you’re OK. I can understand it though, and I like being able to educate people on what it’s really like as opposed to the TV version.