Cerebral Palsy
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Muscle Spasm

libbytlibbyt Member Posts: 30 Courageous
edited May 2014 in Cerebral Palsy
Hi All

Hoping someone can help. Our son is now 16 and has spastic diplegia. He has developed severe and very painful muscle spasm in his rt leg over the last 6 months. He has tried diazepam but he was so doped out that he was like a different person, not nice!! He is on oral baclofen but if we increase it, he becomes very floppy and it effects his speech. He is at present having botox injections to help the pain but these are not very effective.
Anyone have this problem or can offer any advice about how to manage it?

Libbyt

Replies

  • pantherpanther Member Posts: 251 Courageous
    Hi Libbyt

    I'm older than your son but noticed in my early 20s I started to get really tight muscles tighter than normal and muscles spasms especially at night or when I was tired.

    I tried a number of different things to help the pain and spasms like your son I didn't get on with baclofen I found it reduced my legs to jelly and I couldn't stand up at all I was sat on the floor with my legs out in front of me going into spasm worse than before. I was too scared to have botox injections in case of bad reaction and then waiting for the injection to wear off.

    With much trial and error and driving my gp insane I now take a combination of Dantrolene and diclofenac I still have times where my legs spasm too much or are really painful but it's not as bad. In the last few months my gp has added codeine for me to take as and when I need it

    Maybe try and talk to the gp about alternatives there are many out there it's just a case of finding something that helps your son.

    Helen
  • pantherpanther Member Posts: 251 Courageous
    Hi Libby

    I can understand how your son feels I was in my early 20s when I started to have problems and it really got me down. I eventually got a wheelchair to use on the really bad days and for when I wanted to go shopping. Then at least I could manage more than one shop before I wanted to go home due to pain and fatigue.

    Even accepting the chair was difficult I spent over a year walking with it rather than using it! Until my partner pointed out to me to consider it as my mode of transport like other people have a car.
    Having a wheelchair to use some of the time might help him but again I'd understand it's a lot to get your head round at any age but might be worth thinking about I wouldn't be without mine now after hating it for so long!!

    Maybe rather than looking at putting your son on more medication talk to the gp about changing it to something different. At the end of the day we all respond differently to medication and maybe baclofen and diazepam are just not the right ones for him. I know I didn't get on with backofen at all I don't think I even lasted a week before I was on the phone to the gp.

    Like your son I wouldn't want to do a baclofen pump either so I guess it is time for you, your son and any doctors etc working with him to look at althernatives as I said there are many out there. It just seems that they like baclofen.

    I have one doctor who every time I see him asks me why I take dantrolene and then goes on to tell me it's a strange one because often people don't like it and wouldn't I rather have baclofen!! I've lost count of the number of times I've told him I don't get on with baclofen.
    I wouldn't mind but I don't see him for my cp I see him for my epilepsy but we still have the same conversation every time I see him.

    If I could I'd tell your son you get used to it but I'd be lying even now at 38 there are still days when I get down about the pain, and fatigue etc and just want to be "normal" and other people. But if you can find different medication it does help a bit, also tell him not to be to hard on himself that is one of my biggest problems I try and push myself too hard then pay the price a few days later through either lots of pain or really bad fatigue.

    Helen
  • libbytlibbyt Member Posts: 30 Courageous
    Hi Helen

    He is in a chair all the time now, that is what he is finding so hard. Over the last year he has lost his mobility, has develpoed muscle spasm and is now not even able to do standing transfers. So he is obviously finding life hard, what with leaving school and GCSE's too.

    Thanks for the advice, it's nice to talk to someone who's been through it.

    Libby
    x
  • libbytlibbyt Member Posts: 30 Courageous
    Hi Helen

    Thanks for the advice. I'm reluctant to put my son on even more medication but I think we may have no choice :-(

    Some of his therapists are talking about a baclofen pump but he is terrified of hospitals and it would need regular maintenance, and another operation. He and us are really feeling that life is just not fair sometimes, we keep telling him that others are much worse off than he is but at 16 it's not helping much and he can only see the fact that he has now lost his mobility and is in pain.

    Libby
    x
  • pantherpanther Member Posts: 251 Courageous
    Hi Libby

    I can understand that as I've said I struggled in my early 20s with getting a wheelchair and although I don't use it all the time I probably should use it more than I do. Definately know I wouldn't of coped with it all at 16. Try as I said getting him to see the chair as a mode of transport that's what eventually made it click for me and realise it wasn't as bad as I thought.

    Hopefully if youcan find a different medication that works for him he might find the spasms easier to deal with too. Even with my medication there are good and bad days were muscles are tight and spasms worse usually when it wet,damp or cold and also when I'm tired but they are better than I would be without them.
    If your son wants to talk to anyone get him to come on here I'd happily talk to him sometimes it helps if you realise you're not on your own going through this that there are others.

    Take care
    Helen x
  • libbytlibbyt Member Posts: 30 Courageous
    Hi Helen and Mark

    Thanks for the replies. Mark, I think you're right about keep moving. Our son has deteriorated very rapidly since he has become a fulltime wheelchair user. He has twice weekly physio at school but unfortunately he now resists any movement because his legs are so tight and movement causes pain and loud clunks (hip we think).

    A baclofen pump has been mentioned and dismissed because he is resistant to any hospital visit (he's had too many!). Now, he is being referred back to orthopaedics to see if they can come with anything.

    Unfortunately, he seems to have given up and resists any help. He will now not tell us that he is in pain unless he is in agony because he is frightnened of more surgery. We don't know how to help him, we can't force him to accept medical help as he is now 16 but it's hard to watch him suffer and do nothing.

    We're back up to Great Ormond Street next month but even getting him through the door is a nighmare!

    Will keep you posted.

    Libby
    x
  • MarkinsuttonMarkinsutton Member Posts: 83 Pioneering
    Hello Libbyt

    I echo all Helen's advice. I am new to this forum so forgive me if I don't make sense. I tend to go off on ramdon thoughts when I am typing and forget what I have already written.

    Reading some of Helen's messages I can relate to what she is saying. I didn't accept that I had a disability until I was in 30's, I always saw myself just as abled as anyone who just got tired a little quicker than most people. it wasn't until I broken my leg falling over that I realised that I just couldn't go around without a wheelchair or something to support me. I still struggle accepting a wheelchair and just about to turn 40. I agree that Baclofen is a difficult drug to manage but I am coming close to giving up the fight to get them to change it to something else. it seems just like Helen most doctors just think "oh they have Cerebral Palsy stick them on Baclofen" I think too many things are fixed by medication these days. one who struggles to swallow medication I try and keep mine down which is a constant battle with my GP.

    One bit of advice I will give to your son is to try and keep moving, it is shocking just how quickly one can lose their mobility once in the wheelchair. any exercise is good. I used to just move about on the floor raising up a leg or arm and holding it there to build up muscle strength, I found sat in a wheelchair all day just made the pains and aches worse. i find myself more comfortable on the floor or bean bag but I can't stress enough just how important it is to keep moving even if you have to help with giving him something to push against.

    I understand its a lot for him to accept and like Helen I hated it when I was younger but going to a special needs school it was part of my daily routine and something that has given me many more years mobility. Oh just one more thing which has helped me now is acupuncture but I was only given 8 sessions by my GP before they stopped but it was total bliss for about 3 days afterwards. got a feeling you have to be 18 to have acupuncture though.

    hope you get some answers soon.

    Mark
  • imogen37imogen37 Member Posts: 61 Listener
    Hi

    Somebody in one of these forums said (not too long ago) about massaging with magnesium oil. This person said that her daughter's muscle spasms had completely disappeared.

    maybe worth a try.
    x
  • HadiHadi Member Posts: 1 Listener
    Hi All, I just want to ask if anyone ever tried using medical cannabis as an alternative meds? I have read many articles about medical marijuana and how it can help you in terms of chronic pain, glaucoma, eating disorder/anorexia, anxiety disorders and panic attacks, inflammation, even cancer and a lot more. Like this article about a marijuana strain:Deadhead OG from:http://www.ilovegrowingmarijuana.com/deadhead-og/ . Cbd and thc are also new to me and I don't even smoke. If this is true I cant find any solid conclusive evidence that speaks to its efficacy. Any personal experience or testimonial would be highly appreciated. Thanks
  • MatildaMatilda Member Posts: 2,616 Disability Gamechanger
    @libbyt

    I get muscle spasms in my calves in the evening and I find freeze spray quite effective.  Sometimes have to apply three liberal sprays before the pain goes, though.


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