Leg pain😩😩😩😩: Hi I’ve had pain in... - Charcot-Marie-Too...

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Leg pain😩😩😩😩

Watk123 profile image
Watk123
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Hi I’ve had pain in my legs since I was little due to cmt but it’s happening more frequently now.I’ve tried to see the doctor but can’t get an appointment for weeks-.- any one have any suggestions to help with the pain?😩🙈

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Watk123 profile image
Watk123
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I have same problem and my doctor advised ibuprofen for muscle pain and maybe some stretching exercises to try and keep my leg muscles from going too tight, he did offer me really strong painkillers but I don’t want to go down that route just yet and have to rely on them. Not really much he can do I,m sorry to say. Take care...

Watk123 profile image
Watk123 in reply to

Ah I take ibuprofen whenever I’m in pain but it doesn’t really work anymore so I’m hoping the doctor will prescribe something for the pain for me soon

WobbilyLou profile image
WobbilyLou

I am half way, through diagnosis and have been diagnosed with, the pes cavus feet and wasting calf muscles. I do stretches everyday and when the pain/cramps really kick in at night, I take Amytriptiline. I started off on 10mg but am now on 30mg. I need to also balance my day. If I overdo it, it will be agony at night and the following day. It is about getting that balance that is right for you. I hope that you get, rid of the worst of the pain. Best wishes Lou xx

Jilybeans profile image
Jilybeans

I've had similar problems for the past few years. It's so bad some nights I can't even stand. I was told to not overwork my body and to make sure I rest my legs. I've tried pain killers that didn't work and he has now put me on Klonopin for Nerve Pain. It seems to be helping with the muscle spasms and the leg cramps, it doesn't help the constant tendon pulling but it's something. I find that overall it has worked for me. It's worse at night so I take my meds right before bed.

Jill

spabbygirl profile image
spabbygirl

I get the same in my arms & legs. I have Lofepramine 70 mg 3 at nights. It is a tricyclic anti-depressant like Amytriptiline above but a more modern one. I've had ibuprofen or naproxen for break through pain but nothing works properly. They do take the worse of it away though. I hope you find something that helps.

avandyk profile image
avandyk

Hello,

I am sorry to hear you are in pain. Make sure you are having adequate electrolights and water in your diet to reduce cramping. Also, stretching really helps me. I do, as well, heat therapy. It distracts the neurons so the pain is less noticeable. I read someonelse said balance rest and activity. That works for me as well. I am a nurse and dancer with CMT. Some days I feel I might die from pain. It is relative to what we love. Stay strong my friend and try some of these suggestions to find out what helps you.

diagnosedcmt profile image
diagnosedcmt in reply to avandyk

doest cmt affect you when you dance or does it slow you down

avandyk profile image
avandyk in reply to diagnosedcmt

I have to be very focused so I pick my feet up enough I don't trip. My balance can be a big issue depending on how my day or week has been. It takes a lot of work so my muscles are conditions. If I work out too much the spasms will keep me awake at night. I just keep doing it til I can't.

GrannyMaz profile image
GrannyMaz

If the pain is from spasms and cramping then I found that taking magnesium with CoQ10 helps that substantially, otherwise I use 24/7 Celebrex, Paracetamol Osteo and Prescription strength Naprosyn, these keep my pain levels at what i can handle most days, I tried Lyrica but it didn't do much for the pain and caused other not good side affects...

diagnosedcmt profile image
diagnosedcmt

dont worry i have the same problem i walk to school everyday and i am very slow at walking i have very bad pains but i live with it

oliverdeb profile image
oliverdeb in reply to diagnosedcmt

you are a great person and we care about you , you gave very good feedback .thank you

Ladywonder profile image
Ladywonder

I have all the time as well I take extra strength aspirin about 30 minutes before bed helps me to settle and fall asleep also takes edge off during day if your have muscle spasm lay down elevate your leg and push on wall either with heel or toes can't remember which you should try to keep your calf muscles stretched does help in the long run

Watk123 profile image
Watk123

Yea I have a constant stabbing, throbbing pain in my both legs 😣🙈 I’m currently on Pregabalin 75mg which kind of help

oliverdeb profile image
oliverdeb in reply to Watk123

hello , me too ,just like you. I am 54 years old . i take 75mg in morning and one more at night i am sure it helps because i stopped for ywo weeks and the pain was much worst, so now i am back on Lyrica and feel better. bye and thank you, one more thing keep fit very important ok !

Alice-Ann profile image
Alice-Ann

MY Dr.( a neurologist at SWMedical here in Dallas) tells me that I can take up to 5- 300mg. of Gabapentin a day. 4- 300mg. at night let me sleep like a baby!

Watk123 profile image
Watk123

I’m currently on 3 gabapentin 4 times a day and one amitriptyline before bed but so for no luck. Waiting for an appointment with a neurologist

Alice-Ann profile image
Alice-Ann

I don't use CBD. I use HEMP OIL, instead. The Hemp Plant is a first cousin to the CBD from the Marijuana plant. Neither of these oils cause hallucinations. Our Military forces use the Hemp Oil for sore muscles and arthritis. Your doctor can give you Gabapentin. The less you can take the better as it will make you sleepy. It's the same thing as Neurontin. I was taking 1200 mg. at night and slept like a baby. It can also be taken through the day. Your nerves hurt a lot when they die, and this is part of CMT.

I have just found Hemp Capsules have been perfected and sold through the computer from Utah, USA. They aren't cheap, but at least I don't take Gabapentin anymore, and I have NO PAIN!

Alice-Ann

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