MUSCLE SPASMS!!!

Laura321
Laura321 Community member Posts: 8 Listener
edited August 30 in Talk about your impairment

Hi my name is Laura. Just joined this forum. I have HSP and my main problem is muscle spasms which cause me to have many sleepless nights. I'm waiting to see a new neurologist who might listen to me. Does anyone else here suffer from horrible things as well? If so what do they take as a muscle relaxant? Ta

Comments

  • Scooby222
    Scooby222 Community member Posts: 14 Contributor

    I don't know what HSP is, but I had encephalitis 30 years ago which left me with a weak left side and regular muscle spasms. These occur mainly at night, and mainly in my legs and lower back. Does this sound similar?

  • SaraC_Scope
    SaraC_Scope CP Network, Scope Posts: 86 Empowering

    Hi @Laura321

    I hope you're ok today and welcome to the community.

    I experience muscle spasms with my CP and they can be very frustrating. Physio and gentle exercise helps to manage them, but I have plenty of rest after my working day.

    It's good to hear you have an appointment with your neurologist. It might be worth writing your concerns down and taking these to the appointment. Has physiotherapy been part of your care plan or is this something you could introduce?

    Take care

    Sara

  • Scooby222
    Scooby222 Community member Posts: 14 Contributor

    Right, this might sound odd but it's simple to try, and doesn't involve taking anything. I will say that I still think it's a bit wuu wuu and I can't explain how it works - and I'm a scientist so I really don't like that! - but it works for me.

    It is... a piece of beaten raw copper, fashioned into a bracelet. (Please note: this is NOT a shop-bought 'copper bracelet' like you can buy in chemist shops etc, as they have some kind of coating on them which stops your arm from going green. This means that they don't work for me - my arm seems to need the contact with the actual copper for it to be effective, and the green washes off anyway!)

    I found out it worked by accident years ago, when someone suggested I tried wearing a copper bracelet to help with my migraines. My husband immediately made me a bracelet from a half-inch wide strip of raw copper found in his workshop, and I started wearing it straightaway. It did absolutely nothing to prevent my migraines (!), but that evening I suddenly noticed that - for the first time in years - my leg wasn't spasming. After having encephalitis, I used to get muscle spasms in my left leg starting every evening and going on through the night, exhausting and frustrating. When i put the copper bracelet on, they just stopped.

    I have worn the bracelet ever since, on my left wrist, and it still helps. I have no idea why, and I've tried lots of experimenting with wearing it and not wearing it, but the spasms always come back if I don't wear it, so I always go back to wearing it.

    I still really don't like not being able to explain it though!

    Dear Mods I hope it's okay to post about this.

  • Rosie_Scope
    Rosie_Scope Posts: 3,782 Online Community Coordinator

    I'm really glad that you found it worked for you @Scooby222! We're happy to have people sharing their experiences of different things as long as it doesn't fall into medical advice.

    As always, it's important to bear in mind that we all have different bodies and medical needs so what works for someone might not work for another. Be sure to stay safe and keep in touch with your medical teams about any new treatments you're trying out 😊

    Hope you're not waiting too long to see your new neurologist @Laura321

  • Laura321
    Laura321 Community member Posts: 8 Listener

    Hi Scoobie

    Hsp is hereditary spastistic paraperesis. Main symptom is muscle spasms. They have gotten much worse since I've become a wheelchair user.

    I have worn a copper bracelet for years ever since I had a blood test which came back to say I had a copper deficiency. Bit it unfortunately has never helped with my muscle spasms.

    I used to get the real CBD oil shipped in from Lanzarote and it worked for years. But I was walking then and spasms weren't as bad.

    Hopefully when I see a new neurologist he will come up with some better medications than I'm currently on. Thank you for your advice

    Laura

  • Laura321
    Laura321 Community member Posts: 8 Listener

    Vert very similar but mine happen all night and day

    Laura

  • Laura321
    Laura321 Community member Posts: 8 Listener

    Hi Sara

    No physiotherapist have never been part of my care plan. What kind of exercise do you do. Prior to losing my leg almost 2 years ago I was very active. Walking everywhere and swimming. I plan to get back to swimming very soon.

    Thank you for your help

    Laura

  • Scooby222
    Scooby222 Community member Posts: 14 Contributor

    OMG, I'm sorry Laura - I can't begin to imagine what it must be like to have muscle spasms like yours.  It is awful just having them in my legs, drives me completely nuts, it's so exhausting.  I really hope you can get some help from your new neurologist soon.   

    I hope someone can post with more useful help soon, but it the meantime I'm just sending my best wishes and sympathy.

  • Nightcity
    Nightcity Community member Posts: 101 Empowering

    I have intermittent periods of painful fasciculations and spasms as my body doesn't hold vitamin D or folic acid as it should.

    It's not at all nice, and I hope you find something that helps.

  • SaraC_Scope
    SaraC_Scope CP Network, Scope Posts: 86 Empowering

    Hi @Laura321

    It sounds like you've been coping with a lot. You sound like a very determined person.

    I'm due to start new physio in a few weeks. The things I'm doing at the moment help to strengthen the muscles in my hand and leg, so stretches and short walks. I also use a exercises from a youtube channel. She provides seated chair workouts which are only seven minutes, so enough for me.

    Sara

  • Laura321
    Laura321 Community member Posts: 8 Listener
    https://forum.scope.org.uk/discussion/comment/904280#Comment_904280

    Thank you Sara for that. I forgot I had started wheelchair yoga and it was good but my life got in the way. I will definitely start doing it again

    Laura

  • Rachel_Scope
    Rachel_Scope Posts: 1,059 Online Community Coordinator

    Let us know how you get on with the wheelchair yoga @Laura321 😊

Categories