carpal tunnel op - easy!
Broken leg - mended!
Spine surgery - dealt with!
Double hip replacement - live with!
MS pain - CAN’T cope with. Feel beaten. Finally my body has had enough. My positiveness is struggling.
Always said MS won’t beat me but its getting harder and harder.
Thanks for listening x
hi pops
i know what you mean.
how can you explain it to someone who doesn’t have it?
how about “my nerves are screaming”?
i don’t take many neuropathic pain killers because the myriad of side effects make me as miserable as the pain does.
good luck, be strong, feel better.
carole x
Hello Pops & Carole,
Have you tried ALL the drugs available for neuropathic pain? I have been through Gabapentine, Pregabalin and Baclofen. These either didn’t work or gave me side effects (and got me thrown out of a pub).
I have found Amitriptyline works and gives me decent level of relief. Everyone is different and with each drug there are variables of time and dosage so it’s completely a case of trial and error for all of us. My MS Nurse and GP both seem to understand this and are very supportive of my individual needs.
If my doctor wasn’t caring I’d change my GP for someone who was.
Anthony
Pops, it sounds like you’re no stranger to pain and painkillers, but have you spoken to your neuro or MS nurse recently? There are many neuropathic painkillers they can offer. Like Anthonly, I’ve tried a few, and for me it’s Gabapentin that works best, considerably reducing the frequency of those damn stabbing pains.
I hope you can find something that helps. Meanwhile, never forget the words of Marie Lloyd - ‘A little of what you fancy does you good’.
Well said Carol , a perfect description.
Ben
Hi Ben
I’m on the maximum dose of gabapentin and have Tysabri infusions each month. If there is a painkiller then I’ve been on it, including oramorph (morphine). Its a struggle at the moment.
Sorry you’re struggling Pops. As a last resort I always find a couple of blasphemous expletives help no end, but I’m guessing you already know that.
Hope things improve soon,
Ben
Hi Pops,
Ive been through a few as well, currently on Baclofen, Amitriptyline and Cloneazepam.
It didn’t do much for me but some people swear by Sativex, or his less legal friend canabis! Have you tried it? Maybe you could see if it’s possible to try? I was offered it by my neurologist not long ago. I said no because I’ve never found it to be very useful.
Sue
Hi Pops
I have tried many drugs over the years, some more than once. Opiates and several other drugs are not tolerated by my body, but I was pursuaded to give Pregabalin another try - this time taking 25mg and adding another 25mg every 3 days. I did not really feel the benefit until I reached 300mg x 2 bd.
The benefits; my vibrating body which kept me awake only now bothers me if I really overdo it, and then it is a shadow of the past. My pain caused by hyper sensitivity to creases in clothes and the bed sheets is dampened down, although I still need a bed cradle to keep the bedding off my feet. The hyper sensitivity to sound is also dampened although still a major factor in quality of life. I can now touch people and be hugged without yelping in pain .
The neuropathic pain in my legs is ongowing and I think that Raynaud’s has an input here. I also have to ensure (very, very difficult) to keep a good posture. I find that the hot burning lines of pain down my arms has a lot to do with weakened muscles making keeping posture hard but serves to remind me to buck up.
The nerve spasms are another thing entirely, and can strike anywhere, anytime.
I prefer to feel the pain rather than be fuzzy because the cognitive function defecit is bad enough without any further help.
Breathing in deeply also helps as this drags more oxygen into the body, is also has a calming effect when getting close to the edge. I also use this technique when my bowels are playing up, particularly if sounding an Aah! at the same time (squeezes the colon).
Last tip - numerous diets etc. looked at and dismissed over he years in favour of eating - blueberries, grapes and any other fruit which is fresh and available. My balance is only difficult now when I have moved too quickly, if I have been sitting too long or I can’t see.
If anyone else has any useful tips I would love to hear them but in the meantime Pops I hope you feel a bit better today.
Cheers, Moira
Hi Moira
Thanks for your comments.
I have tried pregablin but it didn’t suit me. I felt worse on it.
I have given up bread and have lost one and half stone. I swim regularly.
My hip replacements mean I can’t move my legs into certain positions so its difficult to relieve the leg pain.
Over the years my pain threshold has been high but the MS is a different pain and its harder to cope with
X
I have been lucky so far and have not had much pain at all that is a direct result of the MS. One time, asty relapse gave me stabbing pains in the body that had me heading for the hills - carbamazepine was a great help to me then. If you haven’t tried that one (although I expect you have!) it might be worth a go.
Alison
Sorry to hear you are having g a hard time Pops. I hope you get some relief soon. I too suffer, worse in the evening. Means I don’t get much sleep. Sending hugs ANNE
Pops mate.
Just want to wish you good luck and hope you find something that’ll help
Like yourself broken ankle,broken wrist- sorted
Was really glad to hear that I had Carpal Tunnel as it wasn’t the MS/ L’hermites getting worse- Just been sorted, still with stitches. Know the pain will go in the future.
How weird is it to actually be grateful to be given a diagnosis after months of worrying, know you’ll need an op so losing money (self employed) and overjoyed the s***e illness you have isn’t getting worse?
MS does funny things.
L’hermittes complete pain in the a**e (and other places!).
Keep trying, smiling to yourself and swearing at life in general. Good hunting.