Evening all Just wondering if anyone can help? I had a major relapse back in oct, which left me housebound until Feb, and have been using a stick up until recently to help me walk short distances. Anyway, back in Jan my neuro started me on amitriptyline at 20mg to help with nerve pain - it worked, I was then going to stop it altogether when I had my last app with my neuro, but I complained about how heavy and useless my legs are after 5-10 min walking or standing, so he suggested I gradually increased the dose up to 60mg to see if it eased the heavy legs, it didn’t so he’s now said to continue increasing the dose up to a max of 150mg. I’m finding it so frustrating, I work in a Sch and am currently off with the summer hols, I really wanted to do some day trips with my 4yr old as we really havent done anything since the start of this relapse, but there’s not much you can do when you can only walk for 5min before having to sit and rest for the best part of an hr! Does anyone else suffer from the same annoying symptom and what do you take/do to help improve your legs? Liana
Does nobody else experience this or similar? L x
Could you try swimming? Might be a fun thing to do with your 4 yr old and shouldn’t affect your legs?
Maybe ask for some physio too, improves your leg strength.
Hi, is the heavyness due to spasticity. When muscles are overtoned they are heavy. I have permanent increased tone (spasticity) in one leg. If I relax totally and let my husband raise my left leg and then the right he can feel the difference in the weight of the legs. Baclofen is the drug to help with this. I can only take a small dose as too much effects my 3 good limbs.
Hi, I`ve been on amitriptyline since 2000…for nerve pain. I began on 20mg and went up to 100mg before it zapped the pain. I now take 75mg, as lowering it anymore caused the awful nerve pain to return in the back of my thighs and bottom cheeks. 150mg is a really hiigh dose. Have you found it makes you sleep heavily or be trance like in a morning?
I take baclofen for spasms and spasticity, which made my legs relax, but too much and I had so many bad falls. I began using a wheelchair part time, but have no used one full time for about 10 years. I am unable to walk at all and standing is extremely difficult, painful and risky.
it may be worthwhile to see a physio to see if they can offer any helpful advice.
Some people find that taking a manual lightweight wheelie out helps. It can be pushed until you feel a need to sit or ride for a while.
Thank you for your feedback so far. I have been seeing a Physio since January, they have had me doing various exercises to help improve both strength and balance, they are pleased with my progress and talking about only having one more app and letting me perseve at home on my home, but obviously be able to call them should I need them. The neuro checked my legs back in April and he felt they were both fairly strong with no stiffness - would he have been checking for spasticity doing that? My legs only tend to get stiff and I mean really stiff after I’ve tried walking for 5-10 mins, they get really stiff and very heavy and all I can do is sit and rest for the best part of an hr before trying anything else! I take the amitriptyline between 7-8pm, by 10pm I’m usually very sleepy, I’m off work at the mo with it being the Sch hols and I’m finding I can sleep through until 8.30 easily (unless my daughter is trying to get me up) but once up I don’t seem too sleepy or trance like! I have tried swimming once, but I slipped on the wet floor and pulled my daughter down with me which was awful, I haven’t tried again since - a silly excuse I know but after doing all the de - fuzzing to make sure i look tidy (not wanting to scare anyone!) in a swim suit knackers me out before I even get to the pool! This relapse has been awful, I’m getting so frustrated to still be trying/hoping ill continue improving since it started back in oct! This time last year I did get tired but the MS didn’t stop me from doing anything! L x
Hi if after using your muscles (ie walking) you are noticing stiffness then that is spasticity but only mild if you are only noticing after exercise. That is how mine started. Essentially I had an attack (prob not MS) in 2008. I recovered well but then 10 months later I started to notice that after a long walk my right calf felt tight and I could not flex my foot enough to clear the ground. he calf muscle was pulling my foot into a point. I started to go to GP saying that I was developing foot drop. They said I didnt have foot drop. I then decided to go after a long walk and I literally hobbled into surgery! But unfortunately I had to wait in waiting room for half on hour so muscle returned to notmal - hence GP thought i was mad. I spent a year going back and forwards and was referred for orthotics etc. The only thing that was changing was the spasticity was appearing after shorter distances walked and longer recovery times .After walking the dog I would have to sit in car for 15 minutes before I felt comfortable driving with my right foot.
Eventually one of the GPs after 2 years of me moaning referred me to neuro. A lesion was seen on scan in 2011 which as gone now in recent scan. Essentially this lesion triggered spasticity which has continued to get worse while the lesion itself has got better. Totally Bizarre
I am in the situation now that the spasticity is always there 24/7 but still gets worse after exercise.
Hi Moyna Thank you for your help, I think I will run that past my nurse - I don’t want to continue increasing and taking more amitriptyline if its the wrong meds! Thank you again Liana x