Just odd things.... Maybe not so odd here though

[Daesin]

I know that I am not the only one who has spasms . Despite taking meds that should knock me out, they are very present in my daily life. I try to keep moving in voluntary ways in hopes of delaying the thrashing. I am totally blessed that there is limited pain, but I am so exhausted.

So today I tried something. I set up step counter on my left ankle and sat down in my chair. Ithe spasms typically run from my left leg into my back up through the neck and out the right arm. It took less than 45 minutes to get 2,000 steps. Ok, now I was not standing for any of this time. I don't think this med is working.

Blessings to you all.

[poppymom23]

I have had severe spasticity in almost every muscle in my body, but especially my legs, for the last 10 years. I was only recently diagnosed with FND. My doctor thought I had MS for 12 years. I had a baclofen pump placed in 2012 that keeps my spasticity under control. My neurologist thinks my spasticity may have another cause than the FND, but she doesn't know what is causing it. The baclofen pump has made my life so much better. I now only get spasms when I get sick or I over do it. Occasionally, I need to have the dose adjusted, sometimes up, sometimes down but for the most part, my spasms are very stable.

[Daesin in reply to poppymom23]

I am so glad that they found some relief for you. I am definitely learning the whole over do is bad concept. Wish they would quit moving the line, but everyday we try.

Baclofen was one they tried in the hospital . I didn't tolerate the side effects well. For some strange reason I swell up and hallucinate. Not quite the desired effect, though I will admit that with all the spiders marching in formations I didn't notice a single twitch, lol

Sorry, that is really only funny to me.

Blessings to you all

[poppymom23 in reply to Daesin]

That is the great thing about the pump is I only have to take a fraction of the dosage. I didn't tolerate the oral medication either. It made me so sleepy I couldn't even function, but this goes directly into your spinal column. They give you a test dose before you get the pump to see how it effects your spasms and make sure you tolerate the medication well. The feeling of having no spasms with that test dose was amazing. I was taking 20mg of oral baclofen 3x/day and still having spasms plus I couldn't function because I slept all the time. I am getting a continuous infusion of 340mcg/24 hours and my spasms are gone and no side effects.

[Hidden in reply to poppymom23]

You poor thing! It does sound exhausting. I have had intermittent spasming, which totally tires me out. I have found 2 things in particular have really helped. First, I changed to a different magnesium supplement, which meant I could go days without a spasm. Then I was put on a double dose of Co-enzyme Q10. Within a short time, I was finding I could sometimes go weeks without a spasm. I still get them, just not nearly as often. I hope you can get some relief soon.

[Bailey09]

Hi Daesin

It's horrible having spasms your body is totally aching afterwards mine are worse at night.

Take Care x

[Daesin in reply to Bailey09]

The nights bring their own special joys. I have to keep reminding myself of my blessings. PT saw me in full malfunction this morning. She called it something, but the base concept was I could slow or stop them with diversion. The diversion is not fool proof but is certainly a full time job.

I have so much to process.

[Bailey09 in reply to Daesin]

Hi Daesin

I'm 3 year s in and there is no improvement, good luck x

[Emily007 in reply to Daesin]

Hi Daesin,

My spasms have been building up for 3 years and they are very peculiar in that they do it to a rhythm that I can hear. Lately they have been travelling up my body and beginning to hurt it. I have been on various medications but find baclofen the best. As you say, it makes you sleepy and unable to function properly. Having a pump fitted seems a good idea. Is there a hospital that specializes in such procedures?

Best wishes,

Emily

[Daesin in reply to Emily007]

Wow, yep, I am not feeling so odd after all.

Poppymom talked about her baclofen pump. I refuse to get near that med ever again. That's just me though. I have heard lots of folks use it effectively.

[Mikey1960]

5 years and counting tremors spasms and seizures , dizziness and constantly in pain doctors give you drugs but l told them, l just feel the same

[Daesin]

So sorry to hear you haven't gotten better yet. Best wishes sent to all the folks who are in this place.