HELP has anyone got any ideas how i deal with all this leg pain.I have tried all the doctors prescribed drugs but nothing works they either do nothing or drug me out of my head.Neurologist i have is useless has no idea the pain I’m in and has prescribed nothing.I’m 59 and have been diagnosed with ME for 3 years but can’t carry on with this 24/7 pain .
amitriptyline keeps my seere nerve pain in my legs and bum at bay.
Have you tried it?
Boudsx
Hi tried this but did nothing but drug me up in so much pain it’s destroyed my life
Hi, I’ve started using hemp oil, bit dubious at first, but it has stopped nerve pain that runs from neck, shoulder and down arm all time lately.
I get nerve pain the thing that works within seconds is cannabis I take it with a vaporizer have you tryed CBD oil?
Hi, my pain is kinda controlled with pregabalin, which is prescribed.
At the moment I’m only on 300mg per day but in the past was taking 450mg per day. I reduced it to replace it with CBD capsules, but was too expensive for the strength required!
Im thinking of going back up to original strength but I’m not sure if this is what is increasing my weight as well as less mobility, has anyone else found this?
But anyway Lfc the ms nurse advised taking paracetamol as well when required. I am also on amitriptyline 20mg. Maybe you were on too high a dose to start, I was only on 10mg for a long time.
I hope your pain is controlled soon, I know it’s exhausting!
Best wishes Kim
Hi thanks for your reply I’m on 75 mg pregabalin twice a day does nothing for pain but drugs me up also can’t sleep.I tried cbd oil 3000 mg and hemp oil both did nothing.I really don’t know how people with ms can live any sort of normal life.It frustrates me reading how great treatment is working when nothing works for me.
Hello can you give me info on the hemp oil please how to use etc thanks Linda
Hi Holly, Sure it’s called 5Kind hemp gel from Amazon, was £18.99 on offer. I apply wherever the pain is, its like a gel and blends and dries quickly. You can reapply up to three times at same time to get greater relief. I use it as if I’m using ibugel type gels, feel it actually wearing off after approx 4 hours, then just reapply. The first day I tried this it was first day I had releif from pain and tried all sorts. It was also the first day I was able to sleep a proper night’s sleep. Hope it works for you too. Julie
Hi Julie,
I found it and have ordered a tub thank you for the link Holly
Hi Lfc, me again, it’s frustrating when you can’t find what’ll work for you, pain wise!
Due to putting on weight, I asked my consultant if I could try something else. He prescribed gabapentin. I had to gradually come off pregabalin and replace it with the new drug. I work in boots and a customer told me that they were taking this as well and were really happy with it. I was taking it for about a year with no difference in my weight gain!
As my pain level seemed slightly worse on gabapentin I asked to go back on pregabalin. I am happier on this but still want to go back to original dose of 450mg per day.
I don’t know how long you’ve been on this but sometimes it takes a while to get used to and maybe you need a higher dose .
I have to take the amitriptyline at night otherwise I wouldn’t sleep either. I will say I think I’ve got used to the pain. Some days worse than others, so I have thought about getting a cannabis oil vape!
Think you just have to keep plugging away till you find what’s best for you. Ask your ms nurse.
Good luck and best wishes Kim X
Great Holly-Hope you get good results from it too x
Hi kimmy i have tried gabapentin but that effected me even worse and if you are using don’t ever drink with it be warned
Hello Lfc, I see you’re new around here - welcome to the forum.
Have you tried a tens machine? It’s electro-acupuncture. Some years ago, in fact decades ago, I was successfully treated for addiction to a prescribed drug with electro-acupuncture, and have been intending to try it on my MS neuropathic pain - vicious shooting pains - but have never got around to it as gabapentin works really well for me; however, a drug-free treatment does sound appealing. These machines have been discussed on this forum in the past, but not for a while. There is a search facility on here, so I’ll see if I can link you to an earlier discussion. Watch this space…
Twenty minutes later: I’m back…
I’ve found a discussion here from 2014: tens machine - Primary progressive MS - MS Society UK | Forum
I wouldn’t try something new without discussing it with your neuro first, if I were you.
Maybe other forum members can add something.
Ben
… and I’ve found this on the MSTrust site… Transcutaneous electrical nerve stimulation (TENS) | MS Trust
5kind themselves (google) have a sale on, half price!
Hi thanks for that will take a look