Forum

Neuropathy/ chronic pain

Hello everyone,

I’m still very much in limboland. I have my second full spine and brain MRI booked for 5 weeks time (my first revealed 2 non specific lesions on my brain but clear spine). I want to discuss neuropathy which has been my primary symptom. I have bilateral neuropathy on my forearms (mainly the top of my forearms) and hands. They’ll often burn in patches very intensely for a few minutes and then calm down. I’ve had it every day for the past 6 and a bit months. I’ve been taking Pregabalin for the past 5 months but sometimes it doesn’t scratch the surface. I’m just seeking solace in your experiences of neuropathy, where it affected/affects you, how long it lasted and did it get worse at night? My body feels like it’s giving up on me and I’m only 20 years old; what a joy this is!

Thanks in advance.

Blimey Jaackson only 20. Poor you.

Has your doctor (maybe GP) suggested Amitriptyline? That is a good drug for burning type pain. However, it’s one that is best taken early ish in the evening as it can make you slow and sluggish if taken in the day, or too late at night.

I suppose it depends at what time of day you are tending to get this burning sensation. A sedating type of drug might be the worst thing for you!

Otherwise, there’s non-drug remedies. Things like simple ice packs, or cooling spray. There’s a good one called Magicool. (You can get others, often just from the supermarket.) You just spray it on the affected place(s) and it’s an instant ice cold spray.

Sue

Hi Sue, thanks for getting back to me. I’ve seen Amitriptyline mentioned a number of times now. My neuro told me that Pregabalin has the lowest side effect profile so I opted for that instead. Thanks for the suggestion of the cold spray, that’s something that would definitely help as I’ve had success with muscle gels which have a similar effect. Have you had experience of this burning neuropathy? If so, do you mind telling me where it was worst for you? A lot of people mention legs/feet with MS as opposed to both arms.

Hi Jaackson, sorry you going thru this. I’ve had neuropathy since mid May this year. Started legs, feet, waves of pins, needles, reduced sensation, been there more or less constant since May, stops me sleeping sometimes, been on gabapentin since then, doesn’t take it away but keeps it bearable. Since august started same in right arm, face, tongue which pretty horrible, affects taste buds but only intermittent. In process of diagnosis. Sometimes its burning, but more often it’s pain in back and then spreading intensities of prickling and numbness. Affects walking and balance. Hope you can find help with yours. Jules

Hi Jules. I’m sorry to hear that you’re experiencing a similar level of discomfort. It’s strange because it seems that most people complain of numbness/tingling as their first symptom (optic neuritis also appears commonly as their initial symptom) but I’ve been afflicted with painful neuropathy! Having it in the tongue must be very unpleasant, I hope that clears up for you. How far through the diagnostic phase are you? Have you had an MRI and if so what have they found? My limited knowledge tells me that neuropathic pain often originates from lesions in the spine (more specifically: the cervical spine) but my MRI produced a clear spine just two small non specific WMLs in my brain instead. Puzzling, sometimes even the experts don’t seem to know what’s happening!

I had MRI in 2012 which showed area demyelation t spine, also had nerve issues which only lasted a week. Nothing followed up by hospital. Then May this year nerve issues started again and never gone away. Was admitted hosp for a week in May. as trouble walking, dragging foot, bowel, bladder and eye issues. Had MRI which didn’t show anything but they suspected inflammation so given 3 days iv steroids which helped. Brain mri showed couple small patches. Diagnosed transverse myelitis. Since then seen neuro twice, various tests came back abnormal. Eg optic nerve and oligoclonal bands in spinal fluid, said pointing to ms. Awaiting results second MRI done in aug now, plus they looking at NMO, MS and/or autoimmune Sjogrens Syndrome. Seeing ms specialist or nmo specialist in Oct or nov depending on blood test results nmo. All bit minefield as overlap of symptoms with them all can mimic MS. It’s all a waiting game. I hope your second mri proves helpful and you get some answers plus yr symptoms improve. Jules

I tend towards burning pain in my lower legs and feet but have ice cold hands! So the Amitriptyline is used as a general neuropathic pain killer. It’s worth a go; if you do get a prescription, take it initially at a low dose (say 10mg) by about 8pm. See if it helps, plus whether you get any dopey / hangover type effects the next day. If you don’t get side effects, but it’s not really helping the burning pain, try upping the dose to 20mg, but again by 8pm. Treated slowly & gently and watching out for side effects, it’s a very good drug. It can also help with sleep too.

I’ve become a bit more tolerant of the drug, so if I need to, I can take it in the day, or later at night, but I still stick to the biggest dose (30mg) at 8pm.

I didn’t mention the other types of cooling pain killer, I just remembered I’ve had a roll on type called Polar Freeze (also comes as a gel) and there’s loads of other cooling gels that could help.

I use a great ice pack I got from my chemist that doesn’t need heating to refresh it (some do). Or, there’s always my old standby, wet a face flannel, fold it, put it in a resealable bag and freeze that. You can then mould it quite quickly after it comes out of the freezer. And of course, it costs peanuts. I’ve also got a wine chiller that opens out into a flat frozen square (it closes round a bottle - or an arm! - with Velcro).

Happy chilling out.

Sue

Hi Sue,

Thanks for this list of helpful products, I really appreciate it. I’ll definitely benefit from the ice packs which are reusable, I’ve used an ice pack for bed before which helped enormously (it’s always worse at night). Is the burning constant or intermittent for you? I find it so peculiar how it seems to flare up in the evenings. Is there anything else associated with the burning, like numbness or lack of temperature detection? Sorry for the number of questions, I’m just trying to gather whether our experience is similar.

Thanks again for the help.

Most often, the burning type neuropathy happens at night rather than through the day. This is why through the hot nights in summer I’ve taken an ice pack (or wine cooler!) to bed.

My burning pain is definitely intermittent. If it was constant I think I’d have gone completely loopy by now (instead of just a bit loopy).

It’s really difficult to work out whether symptoms are the same or different from another person. MS is sometimes called a ‘snowflake’ disease because we are all individually affected. So I might have burning feet quite often but this may not be quite the same as you get in your hands. I have freezing cold hands most of the time, and my hands are both numb and simultaneously hurt. We may share some symptoms, but probably not all. At least, I hope you don’t share all of mine!!

It is a difficult thing, trying to wrap your head around neuropathic symptoms and trying to workout in advance of your next lot of tests whether your symptoms match people’s who have clearly diagnosed MS. I suppose the best advice really is to try and deal with the symptoms you have, and try to avoid premature self diagnosis as much as you can bear to.

Best of luck.

Sue

I think that last point about not self-diagnosing is very important and a lesson which I have not yet learned. The temptation to join the dots between my experience and other people’s is so strong. I just need some time away from the forums until the battery of tests are over and I am then clearer about my current situation. I think 2 scans within a 6 month interval should offer a lot of insight into the cause of my symptoms (MS or not). If it comes back the same as before then I think the neurologist will steer away from MS. It’s just an agonisingly long waiting game.

I totally understand your desire to know. Right now. And in today’s world, we have the medical world (as well as a lot of crap bogus sites) at our fingertips. If I’d had the internet as it is today when I was first tested for MS (1997), plus access to my medical notes, (which I didn’t get until much later) I would possibly have self diagnosed with MS. That’s only natural.

At least you only have what, a month? till your next appointment. I truly hope you can keep your fingers away from Dr Google. But doubt that you can. If you need to, keep posting on here. We don’t mind.

Sue