lozwo 26/04/17
Last reply 9 months ago
Pain pain pain !

Does anyone else suffer from constant pain in their legs ? For me it’s been there 24/7 for 4 years now. It’s my normal but gahh it drives me crazy ! I have a burning neuropathic pain in one leg and this awful tight feeling behind the other knee. Can anyone else relate to the tightness I’m describing ? I think I’ve forgotten what it would be like to have pain free legs. But I “look fine ” πŸ˜’πŸ˜’πŸ˜’

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simone2
9 months ago

Hi I get leg pain mainly at night, during the day I try to move to stop getting tightness in my legs, have you try taking Magnesium tablets?
for pain at night I take cannabis high in CBD.


vixen
9 months ago

Hi there. One of my legs permanently feels like it has a tight band wrapped around it above my knee. It also feels like I have a tight plaster wrapped around some toes! Fortunately it’s not painful, but it is constant. I don’t feel it so much when I watch TV and have my legs up. Have had it for a year, diagnosed in Jan and on week 4 of Tecfidera. Are you on any meds?


nikitadawndelorey
9 months ago

I do mostly at night as @simone2 said. I know us as “ms people” are usually heat intolerant lol but I got a heating blanket for Christmas and its been the only way I can fall asleep lately πŸ™‚ give it a try you never know!


sarah_irwin
9 months ago

Im currently on sick for two weeks because of constant pain in my legs and sometimes my arms. Yesterday i would quite happily have chopped my legs off. I have been put on Gabapentin 300mg three times a day. Its early days so havent seen a lot of difference. Mine hurt if im standing and sitting and they are worse on a night. I hope you get some help with your pain x


kizzey65
9 months ago

Hi i know how you feel i am on Tecfidera and i have tried gabapentin and pregabalin as i havempain in my left foot all the time for at least 2 years. All they do is turn me into a zombie so i stopped taking them. The only thing that works for me is to keep it warm and use hot water bottle and heat pads. Sorry but it’s a nightmare for you sometimes i just want to scream and chop my foot off. I hope someone​ comes up with a solution for you, good luck wish you well.


stumbler
9 months ago

@kizzey65 . becoming “zombiefied” is one of the immediate side-effects of these drugs, but you need to bear with it as it does tend to pass in a couple of weeks.

In bed is the worst time, as there are no distractions, but surely being zombified when you go to bed must help you sleep………………………


kizzey65
9 months ago

Hi Stumbler I tried both meds for about 3 months and it did not get any better maybe its just me and my metabolism.
Thanks for your reply.


ma1984
9 months ago

What I’m doing when is really bad -is lying on my back with the legs up – high against the wall. Does help, usually takes 30min.


lozwo
9 months ago

Ugh ! It’s nice to know others know what I’m describing. Sometimes I just check in to have someone say “yes ! I get that !”. Not that I’m happy any of you are in pain but it’s just the understanding. Mine is also light a tight band round one leg. I’m on lem but no difference to these Damn legs..


stumbler
9 months ago

@kizzey65, getting the right pain medication is all about finding the med that works for you, and at what dosage.

Could it be that your starting dose was too high and you needed to start lower, slowly increasing the does if required?


kizzey65
9 months ago

Hi I started on 100mg and gradually increased over 2 weeks to 600mg daily but it did not agree with me so now I use heating pad to keep the pain at bay, it seems when my foot gets cold that’s when it starts to ache so I keep it as warm as I can.
Thanks for the advice.


ashory
9 months ago

I have the same issue with my legs also. Most noticeably when I go to bed.

First line of defense is to have my partner rub my legs and feet which normally helps relieve the pain and funny sensations long enough for me to fall asleep. When this doesn’t work or when he’s already asleep I go and sleep on the couch and as @ma1984 suggested I hang my legs over the back of the couch. I’m normally asleep quite quickly like that too.

Hope you find something that works! Have you had second round of Lem yet? Must be close, mine is in a few weeks.


lozwo
9 months ago

I use a tens machine which helps for a little while but it def hadn’t gotten any better since lem… worse actually 😩. I know it’s meant to be longer term that we see any difference with this drug, but still, I was hoping !

@ashory I have round 2 booked for May 24 and I feel so anxious about it again! How about you ? I remember you had a rough time πŸ™ has it helped you in the last year? I remember you saying you had trouble with one of your legs.. any improvement ? When are you in and are you at the same hospital ? Xx


ashory
9 months ago

I have round 2 booked for May 31. I’ve switched to Dr P. So will be at RNS for it. I’m not too anxious…. yet…

I have had a lot of improvement to my right leg. But I still have issues with both legs being quite tight and the pain issues at night time.

I don’t think my improvement or decline was because of Lemtrada though, I think it was just how things were going to go regardless and hope Lemtrada does what I understood it to do and slows any future progression for all of us lem patients.

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