Spasticity is ruining my life

[NYJenn]

The spasticity is so bad, its ruining my life. I am not sleeping well--it's hard to turn over, and I have major trouble getting in and out of bed.

I have a really hard time getting off the couch or chair--my legs stick out straight and won't bend. Ditto showering. Can barely walk 10 feet. Baclofen provides just a little relief.

MMJ is not legal in my state, but it helps. It either eases the spasticity or elevates my mood so I don't notice it. I woud love to see anyone who opposes MMJ to walk (or not)in my shoes for a day.

I see only a few other options here. Has anyone been helped by them? Aren't there any good options???

[Autumn]

spasticity

jenn, sorry to hear about your spasticity. Baclofin didn't work for me. My doctor started to give me botox injections in my calfs . I still had spasms in my hamstrings and hip. The pain was so bad the doctor gave me botox in my hamstring. No more pain,no more spams. My hip is better, I have no more pain when I turn over in bed. Good luck,Autumn

[dlsal]

I Felt Your Pain

I did suffer terribly from spasticity. I couldn't bend my right leg and I spasmed all the time. Nothing was helping and I knew I couldn't live like that anymore. After a lot of discussions with my doctor and online research I decided on the Baclofen Pump. Once the dosage was stabilized, the pain was gone. My legs are weak due to my MS and the Baclofen. But it's a small price to pay for relief. Look into it and discuss with your doctor. Good luck!

[aitch10]

I've been taking Baclofen at bedtime and love it. I've only taken it once during the day since it knocked me out, but being able to bend my legs in bed has been a revelation.

[milehighmimi]

My spasticity is in the bottom of my feet, toes and around my ankles. My neuro and PT both refuse to even consider Botox injections. They don't care that my shoes fall off because I can't hold them on, my feet swell because of Copaxone, my right hip is killing me and my knees are too because they are taking the brunt of my crappy gait.

My feet are so worthless some days I just want to cut them off. But the DOCS do not care.

I'm up to 45 mg a day on Baclofen, it works for a while when the dose is increased and then it stops working.

I hate this crap.

[kimmiegoodwin]

opiates do the help?

I too have had leg pain so bad that it's literally altering my quality of life. I am on zanaflex, but unless I take small dose of opiate it still hurts anyone else try and what kinds?

[Strhuntrss]

I am new to Baclofen. PT prescribed it for my stiffness and pain in my left leg that now has gone to my right leg.

My left leg spasmed up to my chest (sitting down). I tried to straighten it and the pain was seering. Two days later my right leg did the same thing.

Once my husband got my legs to straighten, I layed straight in bed and didn't move, for fear that the legs would spasm again and not being able to sleep.

This is a new sx for me in that it is that bad with the seering pain. The Ultram and the Neurontin doesn't seem to be helping with the pain of the spasms. I know one is for pain and the other for nerves.

I talked with my PCP and she said that she could increase the dosage if need be.

How can I function in the daytime with this medication?
The pharmacist said that Baclofen is a midline muscle relaxer and that I should start out taking it at night to see how I respond to it.

What am I to do if I need it in the daytime, ugg
I am now using a cane all the time for fear that I will fall when the legs give out.

I get tired faster it seems when I exert myself. It is affecting my work as I have to push two older ladies in a wheelchair. I am scared that I have to quit this job also.

Does anyone know if a support group helps? Your thoughts and opinions would be appreciated.

I am sad today ... and I know it will get better ... but for now it makes me sad

[MermaidOP]

Dear Strhuntrss,
I am so sorry to hear you are suffering. My spasticity and the pain associated with it has increased lately also. My medications are getting less and less available too since many are not covered in an affordable way by my medicare plan D.

I think a support group, whether specifically organized by a MS organization or one you gather around yourself, can be very useful. Handling the emotions and fears around my growing disability is important for me. And I think my stress over my symptoms increases my symptoms, if that makes any sense.

I get a lot of support from people I talk to in chat. You would be welcome. I haven't seen you there for a while. I hope you start doing better soon and that your doctors can give you some good advice about managing your medications to keep working.

Stay lifted,
Mermaid

[rdmc]

I did suffer terribly from spasticity. I couldn't bend my right leg and I spasmed all the time. Nothing was helping and I knew I couldn't live like that anymore. After a lot of discussions with my doctor and online research I decided on the Baclofen Pump. Once the dosage was stabilized, the pain was gone. My legs are weak due to my MS and the Baclofen. But it's a small price to pay for relief. Look into it and discuss with your doctor. Good luck!

I'd encourage you to at least get info about the pump. I was again reminded this week what a "miracle" device the pump is.

I've had a pump for a few years, and it has controlled my spasm and pain. But I fell a month ago and started having hip pain. Both my neuro, PT, physiatrist, and myself included, dismissed the idea that what I was experiencing in my hip and leg was spasticity. We were all thinking injury from the fall. But the pain and stiffness in my leg/hip just got worse each day despite PT and muscle relaxers.

I guess I was so many years removed from severe spasticity that I had forgotten how bad it can get, and when I got to the point where I could not move the leg or bend any joint in the leg and was having to resort to pain meds and staying in bed most of the day, they imaged my lower back and spine with MRI (I had had an x-ray after the fall)...and it wasn't an injury, my spine and hips were great.

So off I go to the physiatrist, she ups the dose and within an hour, my leg is moving, now 2 days later and it's about back to it's normal state. An increase of 20 mcg (.02 of a mg) of baclofen delivered intrathecally made that huge a difference without the accompany side effects of an oral med. It still is amazing to me that delivering the med to the spine can have that noticeable an impact in that short a time.

I always say the good thing about the pump is you get to "test drive" the medication because they do a procedure with the med while the option is being discussed and it lets you know if the med will help you or not.

Hope you find some relief.

[Sparticle]

Spasticity catastrophe- Input please!

I'm posting here because I'm basically terrified. Today I went out shopping - walked around Target for an hour and felt pretty wiped out, but the cats needed treats and so I attempted to go to the pet store. I've developed spasticity for the first time in my calves, toes feel like they're all tied together and like another poster stated, getting/moving in bed is a struggle.

Well, my left foot (which tends to drop) dropped and down I went onto the concrete curb and split my lip and chin on the sidewalk and tore my jeans and t-shirt from the fall. Fortunately, there were a lot of shoppers around, a gentleman helped me back to my feet and then to my car.
There was a nurse who cleaned, bandaged me up. I sat in my car with A/C blasting for about 15 minutes but I couldn't quit tremors in both my hands. I drove carefully home (only live about 5 minutes from store). Came in turned A/C up (temps here were 80 degrees with high humidity) and still was shaking.. I took a valium which seemed to calm the tremors. However when I walked into my kitchen my left foot kicked out and under like it did at the store.

I am supposed to be going back to my neurologist in 2 weeks for Botox injections/physical & occupational therapy.
At this point, I am afraid to go outside my house - I moved here recently and my closest emergency contact is 4 hours away. My apartment has 16 very steep concrete steps up to my door, I have fallen up them, but nothing this severe

What do you do to deal with this? I have not been on any DMD for a couple of years due to having a rotten neurologist - my current neuro is planning either Tysabri or another new drug (sorry can't recall name). Has anyone had success with Ampyra?

I'm sorry to ramble on but I'm really scared. This is the first time in years my RR MS has reared its head; I'm hoping I'm not going RR Progressive. Thanks for listening

[xrayeyes]

know the feeling

I have major spasicity in my legs, was maxed out on baclofen and tired others with no luck until we tired Dantrium. Old time muscle relaxed, have been on it for 2 years and in the last 5 months has stopped working, going to try the pump. Hope it works!

[bobus498]

My only advice.....move to a state that has MMJ. I keep some cannabis concentrate (hash oil) in a vape pen by my bed. when the spasticity hits, I take one puff and the pain is gone almost instantly. Regular cannabis works for me during the day. Tried Baclofen but the cannabis works better and faster and, unlike Baclofen, the effect of stopping it isn't death.

[Kimba22]

,Hospital with some out of that out ex.

[hunterd]

I have a baclofen pump and I would be happy to share my experiences. Just send me an email if you wish.

[Nicoly3467]

Yes the spasticity is very hard to deal with! I was diagnosed with RRMS Nov 2013 and have a lot of leg spasticity and sometimes on back of my neck and middle of my spine/back. It hurts to walk sometimes and feels like I have wood blocks for legs plus I get muscle spasms on my legs. The leg stiffness has been much more intense the last few days which I don't know why. Stretching helps sometimes....

I tried baclofen tablets (10 mg) and it helps the spasticity a little but I don't use it everyday because the benefit is not that great for me; however some people receive good relief from this.

I am really considering to try out reflexology (Mitt Romney's wife Ann Romney who has MS does this) since that might help with the nerve endings in the feet leading up to the legs.

I hope you find something that helps you too! Nikki