Wednesday, November 5, 2014

My MS Symptom of the Week – Spasticity

“I can feel it building…oh yes…please don’t stop…this is going to be so good…here it comes…hold on baby…OH MY GOD,” I thought to myself. Then I let it fly, “Achoo!!!”
“Gesundheit,” said Kim.
“Thank you,” I replied.
What? I can't believe you thought I was going there.

Everyone is familiar with that feeling leading up to a sneeze. The urge builds and builds, and the last thing you want to happen is for it to fizzle out before you detonate. The sneeze itself is such a relief. It’s like a scaled-down version of that thing that mommies and daddies do under the covers (the government blog sensors made me describe it that way).

Spasticity, my MS symptom of the week, feels like a sneeze as it builds and builds. And, like a sneeze, it feels so much better when I succumb to it.

“Mitch, what is spasticity?”

I’m so glad you asked.

The National Multiple Sclerosis Society describes it this way: “Spasticity refers to feelings of stiffness and a wide range of involuntary muscle spasms (sustained muscle contractions or sudden movements). It is one of the more common symptoms of MS.”

I would further describe my particular variety of spasticity this way. Think about how it feels when you wake up in the morning and have an urge to stretch, except that my stretch is very powerful (proving that the disease is in my nerves not my muscles). I get this spastic feeling frequently now, in both my legs and my arms.

I first experienced episodes of spasticity in the winter of 2003, only eighteen months after my diagnosis (and blogged about it here). I was walking around the streets of Nashville, Tennessee with a client. It was a cold night, and that triggered stiffness in my legs that even my companion could notice. It was almost like I was goose step marching. For the next ten years or so I experienced slowly increasing levels of spasticity, but it didn’t cause any difficulties in my life. It was just an interesting phenomena.

In the last six months or so, however, my spasticity has become much more frequent, and so much more intense, especially at night. It’s affecting my ability to sleep, and it’s doing another strange thing too. After so many years of transferring myself into and out of my wheelchair, bed, and toilet, I developed some sort of a strain in my left wrist. Now, I can’t use my left arm to help with transfers, so I’m not attempting any manual transfers at all. I’ve got an appointment scheduled with an orthopedic specialist, and we’ll see what he says. But the problem is that I have a lot of spasticity in my left arm, and I often put that left wrist through powerful, painful contortions. I think this spastic activity is preventing my wrist from healing. I’m even wearing a wrist brace at night, when the most spasticity occurs, but I still experience significant pain in my wrist.

For many years I’ve taken a moderate dose of a drug called baclofen, a muscle relaxant and the most commonly prescribed treatment for spasticity. I recently increased that dosage to a relatively high 80 mg per day. The problem is that these higher doses of baclofen cause overall muscle weakness and general fatigue, rather unpleasant side effects for someone with MS – a disease that already causes muscle weakness and general fatigue.

If I take much more baclofen I may need to go to the next level, which is to have a baclofen pump installed in my abdomen, with a catheter running around my waist into my spinal cord. This is a much more efficient delivery method for baclofen, without the nasty side effects. But I’m not excited about having a pump installed in my abdomen and having a permanent opening in my spinal cord. So I will put that off for as long as I can.

Spasticity – another wonderful symptom courtesy of my favorite disease, multiple sclerosis.


  1. Beware the pump. Go back and read thegreekfromdetroit regarding his pump experience. It NEVER did what the doc and reps said it would do. Just saying!
    George's Mom

  2. Just what I'm starting to deal with myself. I'm not sure that Baclofen is my friend at this point. Massage helped for a while. Acupuncture has been better and has kept the Baclofen to a minimum, thank goodness, since it also imposes itself on my bladder. Grrrr!
    Anyway, Mitch--I really appreciate the view into someone else's world besides my own. Thanks!

  3. After reading George's blog, a baclofen pump does not go over well. I have been on the maximum 80 mg baclofen for Spasticity for a long time. Botox is also injected into muscles to help. Cannabinoid s have also helped. When walking, my leg twist out, but still using cane and keeping mobile., looking for what works

  4. A few months ago the doctor started me using the Baclofen during the day but Tizanadine at night. This seems to be helping me for now.

  5. FYI George was not a candidate for the pump. We were told AFTER by a very reputable doctor that MS patients need to have stable disease for six months or are not pump candidates. This info from a national conference where docs discussed the critereon. He NEVER walked or stood after the pump, it exacerbated his spinal spasticity and you read the rest. The pump rep talked it up like a walk in the park. Be diligent when you do your research and be sure your doctor has done many on MS patients and with what success.

  6. George's mom, thank you so much for writing. Believe me, I can't think about a baclofen pump without thinking about George. Also, my mother got a baclofen pump when she was 73 years old, and they never got it tuned right, and she ended up in the hospital where she caught pneumonia and died. So I have two cautionary tales about baclofen pumps. I will do a lot of research before I take that risk.

    Daphne, I am looking into massage therapy. For once, a treatment without bad side effects!

    Joey, thanks for writing. I think my doctor is going to let me go over 80 mg a baclofen.

    Mary Ellen, a couple of people have mentioned Tizanadine in emails. I need to check that out.

  7. I use Klonopin at night for the spascity. I had one leg that would draw up everytime I layed down- no problem during the day. I am on a low dose so if it gets worse it can be increased. It also helps me sleep. I take baclofen during the day.

  8. Hello, I just discovered your website. I'm well into secondary progressive ms and in a wheelchair for almost 20 years. I've been taking baclofen, one 10 mg tablet every four hours for about 12 years now. It does nothing for the spasticity that I get at night in my legs, just as you describe. What it does, as a muscle relaxer, it keeps my body from stiffening, and works quite well for that. Dr. wanted me to get a pump, but I refused and I'm glad I did, having read many horror stories about these pumps. I will be honest and tell you that what has worked for me, and allowed me to sleep well, is ingesting some medicinal marijuana in "honey" form. If you are against this I apologize.

  9. I actually have a pump, and although it's tough to get the right dosage it has been helpful. It took about 2 months to slowly build tothe right level. You need to keep the right amount of tone for function. Don't rule it out, but make sure to have a test dose to determine if right for you4415

  10. Anonymous, I'm adding Klonopin to my list of drugs to investigate. Thank you!

    Gretchen, thank you so much for chiming in about your baclofen pump.

  11. Mitch, spasticity is a major drag. I take a few things (and thank god for the drug plan I rely on), including Requip, aka Ropinirole, which is a drug commonly prescribed for Parkinson's. I take it 3 times a day, also Gabapentin and baclofen, 3 times a day. Throwing Ibuprofen into the mix also helps, though the bottle says no more than 3 times a day, as well as massaging the spasming muscles with Tiger Balm, the old hippie cure that actually helps. The mind/body thing is great to always keep in mind, except when meditating and spasming at the same time. Drag, drag, drag.

  12. Diane, thanks for sharing your recipe with me. I just got a prescription from my doctor for therapeutic massage. It may help with spasticity, or it may just be relaxing :-)

  13. earlier anonymous person, medicinal marijuana in honey form? Sounds interesting. I have access to medicinal marijuana in Maine, but I haven't heard of "honey form." I will look into it!

  14. Anonymous here – the marijuana honey isn't like the liquid golden stuff we know and love. It' gritty and green, and has the spreading texture of peanut butter. It tastes a bit funky at first, but you get used to it. A tablespoon on a cracker or toast is sufficient for me at this point.
    I don't want to smoke mj, and I don't want a buzz, just want to be able to sleep. Works for me.


  15. I am currently on 120 mg of baclofen spread through the day and 12 mg zanaflex spread out during the day, with permission to up the baclofen as needed. Ready to try medicinal marijuana!