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Spasticity and Spasms Return to Index

Unfortunately it is common to have spasticity in FA. As the nervous system connection between brain and muscle weakens because of sick mitochondria/nerves involuntary extension (straightening) or flexion (bending) happens depending on which muscle group is getting the stronger nerve signal or which muscle group is the biggest/strongest. The toe(s), foot, leg, hand or arm (most usually below the knee) move up, down or sideways as a result and hold there. This constant muscle tension (spasticity) can be painful and the muscles may spasm as well.

What to do?

The FARA Clinical Care Guidelines covers "Spasticity and Spasm" on page 18 and in section 2.4, pages 49 - 58.

FAPG discussions include the following:

  • Deep muscle massage. Families have reported good results from massage. If you have a blood-pooling syndrome with attendant risk for blood clots in the legs/feet you might want to use caution lest the aggressive massage break loose a blood clot.
  • Botox. Can be painful to administer and results vary from excellent to catastrophe.
    • The procedure is operator sensitive
    • In a low percentage of cases "distancing effects" may occur where the Botox travels to unintended parts of the body and causes sometimes serious problems.
    • Possible side effects.
  • Mechanical efforts like toe splints and AFO’s.
  • A number of muscle relaxation drugs. Quite a few parents reported success on a low dose of Gabapentin.
  • Marijuana and/or CBD.
  • Intrathecal Baclofen pumps. Some FA'ers after maxing out on oral drugs have opted for a pump inserted under the skin with a spinal catheter to continuously deliver millionths of a gram of Baclofen directly on the spinal cord inside the spine to counter spasticity, spasms and nerve neuropathy. The flow rate is adjusted over time to the best balance between symptom control and functional body muscle control. If interested one might join the Facebook group "FA Baclofen Pump Users".
  • Six treatments for curled toes
  • Thyroid problems
  • Homeopathy
  • Accupuncture
  • Muscle/tendon surgery. Results vary and sometimes years later the problem comes back.
  • Additionally for spasms:
    • Supplements like calcium and magnesium
    • Stay well hydrated. Even mild dehydration can cause spasms.
    • SSRI's can cause spasms.
    • Creams
      • Happy Camper
      • CBD
      • Theraworx Relief Fast-Acting Foam
      • Ancient Minerals Magnesium Lotion
  • Here’s a list of FA’er/parent inputs on spasm/leg pain archives:
    • Facebook:
      • Paul: Stretching, warmth and massage.
      • Tania: I get Botox injections for that, works wonders!
      • David: I don't think that I can stretch too much or too often - even before I get out of bed ;-)
      • John: used to get calf cramps getting up, since i started ZMA no cramps, going on 10yr now.
      • Lauren: zanaflex seems to help my muscles more than baclofen did, but it makes me more tired than baclofen. Do you have a stretching routine going? Try repeating it more often...JD says coconut water helps with that, I haven't tried that yet.
      • Wei: I use klonopin in addition of the baclofen
      • Natchez: full body massage.. I got my first at the beginning of the week and it made me feel sooooo goooooood :) good luck!
      • Janette: my sons get really painful spasms they are now on a new tablet dantrelen because baclofen didn’t work
      • Lisa: Baclofen made me ill too. I don't know if these will help: I'm trying to get some for my ankles. My ex-boyfriend’s brother has EB (Epidermolysis bullosa) and he had these to get his legs straight. When he walked it was like he was walking in a seated position but after using the dynasplints he was walking straight again within a few months.
      • Alison: that happens to me a bit especially in morning or late at night - I take zanaflex/tizanidine - for me it doesn't make it stop completely but helps a lot!
      • John: You can smoke weed. That stuff helps everything.
      • Sarah: I got them bad. I now take some zanoflex and valium. I also get Botox shots 4 times a year. Talk to your Dr about Botox. it’s a miracle 4 spasms
    • Emails:
      • I've been taking nattokinase (supplement) and magnesium among others recommended to me by a nutritionist and those two especially help with leg cramps and the spasms. Nattokinase (used by Japanese for years) helps poor blood circulation which in turn helps the restless legs and pain often associated with poor blood circulation in legs.
      • Gatorade, sometimes a fair amount of Gatorade, and there is a little pill made by Hylands, and sold at Walmart with the very helpful name of "Leg Cramps". I believe it has a speck of quinine in it. Tonic water, used in gin and tonics, also has quinine, but tastes so foul that I would have to be pretty miserable before I could make myself swallow it. Tastes like Bile.
      • Toxicity level of glucose that could be in blood could cause all the pain.
      • Neurontin and it is very effective for leg pain and spasms
      • I started swimming with her every other day at first and then worked our way to everyday, its great therapy. I also rubbed her legs every night with lavender oil, it got the blood flowing and relaxed her.
      • Fluids. If you are a bit dehydrated your muscles may ache or cramp.
      • A good sports drink. Gatorade used to be good. It was designed for cramps and leg pain.
      • Keep the legs warm.
      • Do flex exercises.
      • Leg massage.
    • Here are more ideas from Facebook:
      • Natural coconut water (I really dig Harvest Bay) and nuts (like cashews and almonds) -- better bioavailability and way, way yummier.
      • A supplement with magnesium, calcium, and potassium.
      • 2 - 3 Advil every 4 hours.
      • Hot bath/shower followed by gentle but constant back stretching to find that muscle set and slow pull against it to cause it to relax.
      • Advil and Banana Boat Aloe After Sun lotion. Aloe contains magnesium which will soothe aches.
      • Hot/cold packs as tolerated

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