I’m hoping some of you can maybe give me some advice or suggestions. I am not currently on any medications/dmds as I have PPMS but my feet & legs at night are becoming really unbearable with burning/tingling and I am getting very little sleep. My neuro prescribed Amitryptiline but on reading the info, I don’t feel I can take them. My father has glaucoma & one of the side effects of Amitryptiline is raised pressure in the eyes (which is what glaucoma is) It is an hereditary condition & on my last 2 eye tests I have had raised pressure in my eyes so I am obviously reluctant to risk taking anything that may make it worse.
Having spoke to ms nurse, she suggested Gabepentin. Again, I am really not wanting to start down that route until absolutely necessary due to the heavy duty side effects, the having to take every day & the dependency issues.
So I am wondering if any of you have tried any natural remedies that have given some relief. I appreciate any natural remedy is unlikely to be as effective as a drug, but I would prefer to try something natural that might give me at least some respite, even if minimal, before resigning myself to becoming a gabby addict
I am currently sleeping with an ice pack, which as the weather gets colder is not doing much for the non burning parts of me!
I have ordered some canibidol gel tabs today but have no idea what dose to take or what time of day I should be taking them, so any opionios on that would also be appreciated, along with any other supplements, methods, thoughts that might help. I have spoken to my ms nurse, helpline on here & my local ms therapy centre with no success. There must surely be something that helps a bit, without having to go straight to heavy duty drugs?
Ooh. I was going to suggest Amitriptyline before you said about Glaucoma.
What about things like Cloneazepam? They help with spasms, but might also help with calming down the tingling. And it’d help with sleep.
Or Pregabalin might be better still as it’s used for neuropathic pain.
You can get cooling blankets and sprays to cool down, but you’re right, it’s the wrong time of year. And strictly speaking, the burning type pain isn’t actually about heat. So ice packs in the winter would end up just making you cold.
I’m not too good on non pharmaceutical options. Hopefully someone else will help out there.
hiya a bed cradle-lifts the duvet off your feet/legs. been a simple and effective thing for me. prior to bed dip feet several times in ice cold water. sometimes confusing the distorted messages in another way often brings relief. my friend opted for iced baths to get some relief for all his pain. thats a bit drastic for me but worked for him! hope you get some relief soon. ellie
Hi, I have SPMS and suffer with this terribly, I’m on Gabepentin, actually I’ve just started upping my dose, I do take cool pads to bed, I have to wear one on each knee, one under my right thigh and one between my legs, yes I get it there too, not nice at all, so if you don’t want to go down the meds line, why not try the pads, good luck, x
I think ice baths would be a bit too much for me as well ellie I hang my feet out of the bed, leave my legs uncovered, use a cooling spray, and at several times during the night, go & stand outside on the cold paving slabs. I have been putting up with it for a long time, but it is really becoming intolerable & impossible to sleep.
Will try these canibodil products but they are a bit expensive to be providing an ongoing solution.
Will look at pregabalin Sue, just very reluctant to start a med that has dependency & other side effects unless there is no other option, which is why I have been trying to just put up with it. Know it’s not strictly about heat, but my ice pack does calm it down a little.
Hello, This may be a silly idea. I suffer from burning legs/back etc and very painful feet. My feet are most helped by wearing bedsocks, even in the summer, a the genuine feeling of woolly socks masks the false feelings from my feet. Some materials are more comfortable on my legs than others too - could you try pyjamas made of something different to see if man made materials are better than cotton or vice versa? There are some man made materials which feel as though they are giving me electric shocks whereas jean-type materials are much better. Just a thought. Hope you find something to help. Gill
Sally, you don’t specify whether you or your dad have open angle or closed angle glaucoma. Amitriptyline is only a risk for raising eye pressure with closed angle glaucoma and not the other kind.
I can get hot feet & lower legs at any time of day. The best thing I find is to put my feet in a washing up bowl, and shower them & my calves with cold water. When the bowl is full of cold water, I’ll just sit for ten minutes with my feet & calves soaking in the cold water. Another thing I use, especially when I’m already in bed, is Deep Freeze spray or gel. I usually find it takes the edge off after a few minutes.
I also use gabapentin. I know there can be a fear of side effects when offered a new drug. But there’s every chance you won’t get any. And even if you do, then just stop them. I’ve been on it for years, and don’t feel like an addict (I’ve sometimes forgotten to take it, but don’t get any withdrawal symptoms, and I don’t get cravings for it). But looking at it from a different perspective, years ago I was having trouble sleeping because of pain & spasms. My GP was reluctant to prescribe sleeping pills because if the risk of addiction. But I reasoned that I’d rather be an addict who sleeps, than someone who’s not an addict but is a complete zombie (in the end, I didn’t get addicted. I used them long enough to establish a good sleeping pattern, and didn’t need them after that). You’ve said things are becoming intolerable, so you have a choice - live in an intolerable situation, or take the risk you may become reliant on a drug.
OMG choc in orange, you are very first person apart from myself who seems to use a bed cradle. Yay hoorah they are amazing. My doctor moons ago when i first got this stupid disease said is there anything you would like me to get for you apart from meds, and i said yes, can you get me a bed cradle as the heat on my legs at night makes my fizzing, tingling and burning worse. I got home from seeing her and TWO HOURS later knock on the door and there it was with a nice smiling man just for me (the cradle not the man). I have used it ever since.
Now though sadly the tingling has gotten worse and worse and the burning and the pain in my feet as i have progressed and the cradle only protects my lower part of my legs, the upper part is now mis behaving.
I saw my doctor last week she wanted me to try amytriptyline again, i did for 3 days and i hated it, so i am staying with my cradle and the 2mg of diazepam i am allowed which i take when i wake up and cant settle.
You just need a bed cradle honestly they really work. I would be screaming every night if it wasnt for mine. You can gt them from OT, or betterlife healthcare, they are not expensive either, but without mine i would never sleep. I tried all the convential drugs and they just turned me into a zombie.
the reason why the ice pack works is because you are tricking your brain.
I hope you give bed cradle a try i have used mine now for 10 years and when we went on holiday in UK it came with me.
I find my legs and feet are worse in the summer during the day too. i use a recliner all day as i cant sit with my legs down and when its warm OMG MY legs are so painful the burning ugh its like being on fire. I use that cooling spray it does work for a minutes. I really do feel like my legs are on fire in the summer its so painful no one who doesnt have MS could possibly understand how horrific it really is.
Hi all & thank you so much for your really helpful responses.
I’ll certainly look at the cradle thing Crazy Chick (may even try to construct my own )
he_funk, I know it will probably come down to meds in the long run but just trying to put it off as long as possible really. Having been lucky enough to be really healthy until ms, I have an, unreasonable I know, aversion to medication. I would like to try to stave it off as long as I can, hence trying to find some less aggressive remedies that might help make it more tolerable for a bit longer before going down that route.
The canabidol has arrived today along with some balm I ordered and, sods law, feet & legs are ok ish tonight so will leave that experiment for tonight.
Agree with he_funk I have RRMS and been on Gabapentin for a long time. I find it is only medication that soothes my back pain and pins and needles. It does not appear addictive and have noted no other side effects. My GP has told me other types of useful medications would zonk me completely. Regards
