Help/ Advice please

Hi all, Was hoping anyone could be of help to me. So so fed up of pain and no relief or too many side effects. Have sensory pain in arms, legs the usual freezing , burning etc. have been trying to get it controlled for so long and it just seems that I either feel dreadful side effects or no pain control ! Have tried the usuals, gabapentin, pregabalin, carbamazepine and had the worst time on fentanyl patches I was ill, been once to pain clinic who put me on the fentanyl, phoned them I was really ill , doc on holiday call your gp I was told. Gp on holiday see another doc who said wean off them ( which was hell) . Two weeks horrendous withdrawl , then pain doc phoned and said why don’t you try a lesser dose of fentanyl ? No I said but I really feel that I need to see you. Doctor replied I can’t see you again until December ( this was August ) go see your gp. Since that my gp has put me on OxyContin with oxycodone for breakthrough . It has taken the edge off but I have headaches everyday, just don’t feel well , been feeling dizzier than normal, could sleep days I think, have awful taste in mouth and am just so fed up of never being able to get relief with no side effects !! Surely there is something out there , I don’t know if I should go see gp or call ms nurse but would really appreciate any advice from anyone !!! p.s sorry for ranting just had enough , as we all have !!!

hello. Poor you, suffering like that and no decent help from anyone.

The only drug you havent mentioned that I use for severe nerve pain…which DOES work for me, is amitriptyline.

have you tried it yet?

As you say, maybe your MS nurse can help. I do hope so.

luv Pollx

Thanks Poll I have tried that too !!! Margaret x

Hi Margaret,

I know it seems like I’m grasping at straws but what if you do not have MS but something like Hughes Syndrome.

This complaint is misdiagnosed as MS; causes very bad headaches; see and

It’s not bad if it is as HS can be easily controlled. Your GP needs to have done a blood test for APS Antibodies.

Good luck


Can’t think of any alternatives, but I’m just wondering how long you try meds for before the side effects become too much? It took me about 4 weeks to stop having side effects from a very low dose of pregabalin, and I only stuck it out because my MS nurse persuaded me, but it’s been brilliant since then. Those 4 weeks were not a lot of fun though!

I hope you find a solution.

Karen x


You’ve no need to appologise for having a rant - what you’re feeling is worth ranting about. One possibility you could try that is free and completely free of side effects is mindfulness - it’s a form of meditation, and can be used for pain management (put 'mindfulness for pain management’into google and you’ll find stuff about it.)

Basically, all it involves is just being mindful, noticing things like what your body is feeling, your thoughts and feelings, any sounds or smells etc, but then trying to let go of the need to change it. I know it sounds like a totally daft thing for pain management, given that you want to avoid what you’re feeling and get rid of it. However, I’ve just taken part in an 8-week study funded by the MS Society, and it really does help me with things like pain and spasms. For example, it can be easy for me to say I’m in pain, but actually that’s not true. It will generally only be a tiny bit on my leg that hurts, and the rest of my body will all be feeling different things. When I see that bit of pain in the context of my whole body, it makes it smaller somehow - a bit like zooming out on a map. Then if I explore the pain, I can break it down a bit - for example notice that it’s not constant, it may come & go gently.

It takes a bit of practise, but I find it really does help - I don’t get as distracted by the pain so much, I feel much more peaceful, and actually the pain does pass more quickly.

I don’t know if any of that made sense, but it might be worth seeing if there is anywhere near you that does mindfulness meditation, or you could try Youtube. Or there’s a website I’ve used called, which has a free course of ten meditations you can sign up too, and you can go back and use them as many times as you want. It’s not specifically for pain management, but it’s a good introduction to it.

Hope you get some relief somehow though.


Hi Dan - thanks for the link. I think it could really help me (and/or MrP). I’m going to investigate this today.

I hope you as well as possible



Hi there,

I’m still in limbo land but took matters into my own hands to find an alternative therapy for pain relief as my dr dosen’t seem to want to give me anything until he knows for sure whats wrong with me.

A friend recommended i visit a bio-energy healer that she knew …at that point i was willing to try anything! I have a healthy dose of skepticism until proven to me that it works.

I went along and told the lady i had horrendous migraines, and a burning pain in my hip…(i left it at that because i didn’t want to overload her with my symptoms). I had 2 sessions and immeadiately after the first one i didn’t have so much as a headache never mind a migraine for over a year. The pain in my hip disappeared after the 2nd session and i felt so much better generally. I was quite amazed by the way it works so quickly. As my symptoms progressed i saw her once a week for a couple of months. That was 3 years ago…my symtoms reappeared with a vengeance 3 weeks ago and can no longer afford to see her so have ordered books to learn this type of healing as she told me at the time that i should train to be a bio energy healer as i could ‘feel’ other peoples energy.

Anythings worth a try!