Last reply 1 year ago
On Fire

Hi, I am Sue, I am new to Shift and am looking forward to talking with other people with MS. I’ve been having attacks since I was a teen and have gotten through them like most MSers. A little worse but livable. I am now almost 60 (!) and had an attack last oct. that has not improved, in fact keeps getting worse. I woke one day with the right side of my body numb, tingling and feeling very odd. Now 7 months later it feels like my right side is on fire. ALL the TIME! The USA does almost no research and my health providers have no answers for me. Anyone gone through this? It is making life a living hell! Thanks for listening.

Add categories

Browse categories and add by clicking on them

You can remove current categories below by clicking the ‘x’.


Anonymous
1 year ago

Hey @susan-lee and welcome to shift! I am sorry you are having a rough time. I’ve not experienced burning sensations but I get buzzing in my legs and shooting pains in my arms. I take gabapentin, maybe this would help with burning as well? I am sure someone who has experienced this will be a long soon who can offer more advice than me.

This is a really great supportive place and the people are friendly and some have lots of knowledge so ask as much as you can. I know the people on here have really helped me, some more than others and it means a lot to have a support network.

Avril x


giggles72
1 year ago

Hi Susan I’m also new to this site, I only have burning sensations in my hands and constantly having to hold ice packs to cool them down, so frustrating, sorry to hear your suffering also, I had a very bad relapse 2 weeks ago and I now have to have infusion of tysabri in a few weeks and feeling really nervous. Hope you start to feel a bit better soon xxx


stumbler
1 year ago

@susan-lee , here’s some details about these symptoms, together with potential treatments :-

https://www.mstrust.org.uk/a-z/altered-sensations


susan-lee
1 year ago

Thanks All for the input, I have tried most of the drugs that are legal where I live. ( Calif.) Nothing has touched this crazy pain. I have a tens machine that also didn’t help. I can’t under-go tysabri infusions because of the JC Virus. Has anyone had luck with acupuncture, or chiropractic care? Thanks


lozwo
1 year ago

Hi Susan ! Sorry you have this going on 🙁 I have constant burning pain in my right leg.. been going on for 4 years now! Sucks!

How are your stress levels ? My burning is 100x worse when I’m stressed. Do you find it’s worse in the evenings? 🙁 xx


susan-lee
1 year ago

Hi Lozwo, Thanks for the answer, yes on both counts. I have the burning down my whole right side, just as if I’d been split in half. Have you found anything that helps this pain? I am close to being in bed all the time, and I am spending a whole lot of my day crying. I am not depressed, but this is sure depressing! Heating pads and cold packs make it worse. I take some pain meds but they aren’t helping much at all. Thanks for listening!


stumbler
1 year ago

@susan-lee , the thing with pain medication is finding which med, and at which dosage, works for you.

So, you shouldn’t discount a med until you have gradually worked up the dosage……….


susan-lee
1 year ago

Hi Stumbler, I was trying to keep this short because I could go on for days telling about all the different drugs that my doctors have given me to try. Many different drugs have been those that take many weeks before any results are felt. I take them just as they have been ordered, and don’t stop until told to, or the side effects become unlivable. I’m hoping someone will have an alternative answer for me as the doctors here are very rigid and closed minded when it comes to anything other than western medicine. Again thanks!


stumbler
1 year ago

@susan-lee , it doesn’t help you, but our Doctors are also very rigid and will not suggest anything complementary or non-medical.

There seems to be a lot of interest at present in CBD oil. Have you considered that?


susan-lee
1 year ago

Hi Stumbler, I have tried one type of CBD oil and a very strange and unpleasant reaction. I am willing to try again if I can get the name or proper mix formula of an oil especially for MS. If you can pass me any info I’d sure appreciate it. Thanks, sue

Join Shift.ms to reply to this post.

Become part of the community so you can chat, compare and learn from other MSers.