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Thread: being on a muscle relaxant and meds for life

  1. #1

    Default being on a muscle relaxant and meds for life

    Hi all

    Im sorry for the title of this new thread. My story is rather long...I have a rare situation in that at the age of 19 I developed a tight muscle in my neck..the neck muscle is tight. Originally they thought it was dystonia but then decided it was just a tight muscle.

    Over time the tightness of muscle spread to my back and legs and then to my neck and face. I was put on baclofen in 2007 for a few weeks and had horrific withdrawal..im still recovering from the withdrawal all these years later. Im over the worst.

    However as time goes on my nervous system will go back to normal and all the spasms I once had will come back (My neurologist is almost certain of this)....the tightness in pretty much my whole body will return..Im 46. I guess I could try a chiropractor to try to move the tightness from my face if they can achieve this.

    My question is that I will probably need to go back on another muscle relaxant for life....This is quite a daunting thought for me so wanted support and advise on how to cope with this. I know that these meds lead to other issues...

    I just need some emotional support if anything from people who have been through this and how to manage my current anxiety of this possibility. Im concerned about what would happen many years down the line being on muscle relaxants and wanted advise on my anxiety.

    Sorry for the length of this. Pleased to be on the forum.

    Shania

  2. #2

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    Sorry meant to say

    My anxiety is..can muscle relaxants be taken for the rest of my life if needed. How do you manage with this and do you get lots of side effects of the muscle relaxants when you take them or just a small amount?

    Shania

  3. #3
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    Default

    You might post this question on the MS forum there are a lot of p[eople with MS who take Baclofen for spasicty (myself included) I am sure that there are people on that forum that can explain things better than I do.

  4. #4
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Shania)))))) ~

    I'm going to ask you a bunch of questions (it's what I do ) not to be nosy, but with the hope of helping you.

    Do you have a specific diagnosis?

    Have you ever had Physical Therapy?

    Have you consulted a Chiropractor, as you mentioned that as a possibility? I think it's a great idea. Chiropractors can do some very good things for certain conditions.

    What other muscle relaxants have you tried, besides Baclofen? Have you ever taken Parafon Forte?

    Have you tried or considered trying alternative therapies, such a acupuncture? Healing Touch therapy?

    http://www.healingtouchprogram.com/a...-healing-touch

    Are you able to do some form of Yoga or Tai Chi?

    Have you tried a TENS UNIT?

    http://www.tensunits.com/

    As Gary mentioned our MS forum, which is our most active forum, is a great place to get information about Baclofen and other meds for muscle spasms.

    http://braintalkcommunities.org/foru...iple-Sclerosis

    On our Child Neurology forum, several parents are familiar with Baclofen and meds for pain and spasms. Please post there, and I will be on the alert for your post, and I'll PM others to reply.

    http://braintalkcommunities.org/foru...hild-Neurology

    We'll do our best to help and support you, Shania.

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

  5. #5

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    Hi Everyone

    You guys are amazing-thanks for responding/ .. I have wry neck which dot worse over the years to pretty much total body tightness. It only became an issue when the tightness went beyond my shoulders and face and pressed against my ears. My whole body is affected by the wry neck over the years.

    I had wry neck from age of 19...slowly got worse over the years and the at 37 the body muscle tightness moved on into my face and throat muscles...just tightness throughout whole body-got worse with physiotherapy.

    Will be checking out the MS forum but if anyone has had surgery for wry neck please get in touch as I feel like im the only one.

    Shania

  6. #6

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    Happy new year by the way. I will be typing up my whole story soon so I can get support-I really need it as I feel low as if there are no options left for me.

    My wry neck is a stiff tight muscle..its static so not dystonia and physiotherapy just moved the muscle tension to another part of my body and now the whole muscle tension has just spread thoughout.

    Would surgery be an option?

    Shania

  7. #7
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    I have spasticity from Cerebral Palsy and find alternative treatments and physical therapy to be way better than any meds. I remember seeing something like your story on a show called "Mystery Diagnosis" many years ago. The series is on youtube. Maybe the episode mentions treatments.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

  8. #8
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Shania)))))) ~

    Since I've never heard of wry neck, I Googled it, and found a variety of information. It's also called "torticollis." Here's info from Mayo Clinic about Torticollis:

    http://www.mayoclinic.org/diseases-c...n/con-20028215

    This sounds different than your condition, and most sites about wry neck seem to refer to dystonia.

    I wonder whether Botox injections might help. You might pose that question to our parents on the Child Neurology forum. While none of them have specific experience with wry neck, they do have experience with treatments for pain and spasms for their children.

    Have you been referred to a neurosurgeon to discuss possible surgical options?

    I wish I had more ideas to help you. If you haven't already, I suggest you scour the internet for information about wry neck, so that you're better prepared to discuss options with your physician(s).

    I'm so sorry for your pain and discomfort, and I'm sure you feel quite frustrated after all of these years of coping with wry neck and treatments, which haven't benefited you.

    Sending up healing prayers for you ~

    Love & Light,

    Rose
    Last edited by Earth Mother 2 Angels; 12-31-2015 at 07:42 PM.
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

  9. #9

    Default

    Thanks for your answers

    Maybe it is torticollis then..the neurologist doesn't think its typical like other peoples. I have total body spasms

    I wonder if they removed the offending muscle in my neck which is causing the other spasms whether the rest of the body would loosen up and the tightness go?

    Would my brain be able to find a chemical balance again I wonder?

    I will go on the MS forum and ask how people manage on lifetime medications because my behaviour changes on them and I hate that

    I am thinking if I put some thought into this now then when the time comes I can say I made an informed choice.

    Shania

  10. #10
    Distinguished Community Member agate's Avatar
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    Here's something else about wry neck:

    http://www.healthline.com/health/torticollis#Symptoms4

    Your question about how long you can safely take muscle relaxants is hard to answer. It would depend on which muscle relaxant and what other conditions you have and what other meds you're taking.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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