Hi everyone, I was diagnoided with ms a month ago. My nuero has sent me for a couple more tests and I will see him in sept. At the last app the stated that het did not think dmds would be of any benefit to me. I presume that means it has progressed to far( pity it took 10 years before they believed it was something other than fibro). My question is what meds do you take for pain, I suffer very bad bouts of pain and currently take solphodal for pain and Valium for spasm.i am also on neurontin daily although I have not noticed much benefit from this except for rls. My nuero is not in favour of the solphodal he wants to up the neurontin instead. What pain killers do you find effective. Thanks, Ann
Hi Ann Sorry to hear you’ve been mis-diagnosed for so long, that’s terrible. It sort of happened to me, but only for 3 years, and part of the problem they had was that my MRI’s have never shown up any brain lesions. I had already been put on baclofen for leg spasms, some time before my dx. I don’t suffer pain in the way you seem to; I would call my symptoms extreme discomfort, in my pelvic girdle and legs. I am on a fairly low dose of gabapentin for that which I occasionally top up with paracetamol. I would hope your neuro takes a reconsideration of your meds when you see him. It’s a long wait though. Can you get in touch with his secretary and politely request an earlier appointment if any cancellations come up. Kev x
Hi Ann, and a big welcome to the gang! I am so sorry it took them 10 years to dx you!!! Ridiculous. I’m assuming like you that the neuro thinks you have a progressive form of MS… although didn’t even tell you this… seems you are having to understand it by guess work. I’ll explain this briefly as you might already know: Secondary Progressive MS (SPMS) is when someone has had Relapsing Remitting MS (RRMS) & it has become progressive. Primary Progressive MS (PPMS) is when the MS is progressive from the start. However, symptoms can still come and go, still varies considerably day to day, is different for everyone and progresses at different rates. So as you know DMD’s don’t work for progressive MS. I take Amitriptyline for pain. It’s actually an anitdepressant (been around for years & rarely used as an antidepressant now) but in lower doses it works well for pain… it sort of dampens down the central nervous system. I take it daily, 25 mg at night & 10 mg in morning. Some people are on my higher dose. Many people take Gabapentin or Pregabalin. They are epilepsy drugs but found useful in nerve pain as well. Hope this helps. This forum is really a great support… hope you find it helps. We’re a friendly bunch and always happy to welcome a new member. Come on and ask us anything… between us we have a vast amount of knowledge. Take care, Pat xx
Welcome to our “gang” lots of lovely friendly people here, always willing to listen and offer advice when they can.
I take amitrityline for pain and baclofen for spasms and spasticity, both of which help.
I wonder if you could have a word with either the neuro or go to ask for different meds, as that seems a along time to wait.
Hope to speak again soon.
Hi Ann, Welcome to out little gang. Sorry you are struggling so much with pain. Do you have an MS nurse? I find mine is always so helpful. I take Gabapentin for neuropathic pain and diazepam for spasms, together with ibuprofen. I took baclofen for years but eventually they stopped working for me. I also found Sativex extremely good but its far to expensive and as yet, despite trying I have been unable to get it on the NHS. I have found this section of the forum to be a lifeline, hope we can be of help to you. Best wishes Nina
Hi Ann and welcome to the forum. I think the pain control differs according to the type of pain you have. If you suffer with muscular pain they tend to go down the Paracetamol and Ibuprofen route, maybe using codeine or valium for muscle spasms. Spasms are also controlled with Baclofen as described above, and regular Paracetamol can be very helpful too.
Nerve pain is more difficult to get under control. I suffered really severe nerve pain for years until they managed to get it under control. I take regular Paracetamol, Gabapentin three times a day, Amitriptyline 50mg at night which helps me sleep, helps with pain and depression though I am on an anti depressant as well. I also take regular morphine and have syrup I can use as needed for breakthrough pain. I didn’t go on the latter straight away, all alternatives were tried first and I was very reluctant as it’s very addictive but I’ve been promised they’ll wean me off it slowly if I have to come off it.
It sounds awful but my quality of life has improved so much and I’ve even been declared fit to drive during the day, not after my amitriptyline or morphine syrup but as long as I’m sensible, which I’m sure you’ll be it’s okay. Getting used to each change in drug or dose is hard as there are side effects but they go, just keep at it.
Good luck. I hope you enjoy and visit us regularly, there’s always someone who can either help or suggest someone who can.
Hi everyone, thanks to you all for information supplied and your welcome. All the drug names you mentioned I am familiar with except baclofen, is this known under any other name. I live in Dublin and I am wondering is it branded as something else here. Thanks again, Ann
‘brand names Kemstro, Lioresal, Liofen, Gablofen, Lyflex, Beklo and Baclosan’
Any familiar ones here? How is the patient/consultant/support network set up for you in Ireland?
Baclofen is also known as Lioresal other Gablofen. It’s a muscle relaxant / anti spasmodic. Not everyone with ms can use it as some of us who have more nerve damage need the muscle spacticity to remain mobile so you need to see your Neuro preferably before commencing it as they can best assess your suitability.
Beat you by one minute, Cath! But I bet you knew it anyway- I had to look it up
Kev I’m going to admit I had to look out up too. And I can’t even blame it on brain fog, I couldn’t remember knowing it by any other name. I might have been a nurse in a previous life but hey, I’m the first to admit it doesn’t mean I know everything. Fortunately I’ve always never been frightened to ask questions which is why I visit here so regularly. You people help me so much.
Ah Cath… sending you a little cyber (((((((((((((HUG)))))))))))))) Notice that is cyber hug and not the ms strangle-help-I-can’t-breathe-hug! Pat xx
Thanks Pat xx
Thank you all for taking the trouble to look it up, thank god I found this site. Yes a couple of those are familiar. Kevin I can’t answer your question about the support yet, at the moment I have seen no one except nuero and have heard mention of an ms nurse attached to the hospital but do not know how or if I will be linked in with her. Hopefully when I go back to hospital early sept I will get more info, at the moment it all feels a bit lonely. Thank you are a great bunch, Ann
Ann, the way I see it here in the UK is the GP has to be your hub. He or she should put you in touch with specialists and support agencies. Likewise those agencies should be communicating back to the GP . Of course that’s here- it may not work that way for you. But do try to be pro-active, make phone calls, pester people. I hope it all gets organised for you. Kev x
Ann: I get by with regular doses of diclofenac, morning and night. You can buy it over the counter and there aren’t any major side effects. Medical folk refer to this as treating your condition ‘conservatively’, make of that what you will. Hope things get better for you.
Hi, I am very new to this forum malarkey but I am looking for some advice I have suffered with MS for almost 20 years mine is RRMS my relapses have become more frequent and much more severe and a complete pain (literally). My dilemma is this I do not sleep ! At the mo I take baclofen gabapentin and diazepam as well as naproxen and cocodamol before I go to bed. I did for a while take amitryptiline before the gabapentin was introduced. I am about to increase the dose of gabapentin through the night but I am just about on my last good nerve. I have spoken to my MS nurse and my neuro, but both are at a loss with me i am not sure about sleeping pills and hotties don’t do much anymore as I go from needing hot to cold quite quickly. I don’t kick up a fuss or argue points but I’m getting desperate and a little pee’d off. Can anyone suggest anything at all please ???. I thank you in advance.
Hi Molly and welcome to the board.
It is hell not being able to sleep and I really sympathise.
You are on a terrible cocktail of drugs and I’m wondering if that’s why you can’t sleep.
I would suggest two things.
Firstly make an appointment with your GP to discuss all the drugs you are on, why you are on so many, what does each one do, and would it be better to decrease the variety of drugs you are on and increase the dose of some. (If you can, try and book a double time appointment… some GP practices will do that).
Secondly, ask the GP if you can be referred to a pain clinic. There are specialists there who understand how each pain drug works for different kinds of pain and the side-effects.
I honestly think that you can’t sleep because of interaction between so many drugs. It’s really not a good thing. I seem to remember reading that taking more than 4 different drugs is counterproductive because some won’t work at all and others will work in a way they are not meant to.
Hopefully you can get this sorted and start to sleep better. I know it seems a hassle, but I think it will be worth it and you could get very positive results.
Do come back and tell us how you get on,
I seem to be supersensitive to pain and spermatic meds , heard good news regarding sativax but my Neuro cant proscribe it till i have tried all the others.
tried all above with terrible side effects
Just finished another course of Amitriptyline and the side effects are horrible, he now wants me to try duloxetine, has anyone tried to the good effect?