Being in pain is the worst and certainly, exhausting and leaving open all those other feelings and emotions.

I hope you are able to get some pain relief. 21 years of fighting this illness, and I don't blame you for feeling down, right now.

Were you able to discuss with your dr the pain increase, yet? Is there a speeded up appointment in the works?

So sorry you are experiencing such misery...

Don't be afraid to tell your doc you need to try a different AD...

Also, my neuro tries different meds to alleviate the spastic pain. I'm on baclofen and clonazipam together. I was on zanaflex, which worked really well, but I experienced irregular heart rhythm and a low pulse, so I had to get off of it.

I hope you can be proactive with your doc and try different meds. I know for a fact that cannabis also quickly relieves spasticity.

Keep us up to date, and maybe you should also try to see a therapist that uses biofeedback. It trains your body to deal with pain. Again, we are praying for you and sending you (gentle) hugs...

I dont qualify for medicare until February, so I am waiting patiently as I can for February to roll around and I had planned on asking my neuro about that then. Thanks for the reminder.

[QUOTE=Debbie D;990765] I'm on baclofen and clonazipam /QUOTE]

My neuro has tried several different meds with me for my spasms. I too was on baclofen and clonazipam and it didnt work at all. Im back to the baclofen and tizanadine, its doing alittle but not enough, but at least its better than baclofen and clonazipam. I never wanted to try cannabis, or watever, but Im telling you, if they legalized it, I might be tempted right about now.

kitty,
i'm so sorry for what you're going thru.
please concentrate on what you can live for.
i think your post here is so well spoken.

i'd like to see you copy it and send it to your drs. maybe they can find it in their medical knowledge and hearts to re-examine your case and try to help ramp up your medical tx.

please don't give up. we're here for you. i'm glad you have your dh to hold onto.

Dear Kitty, I have a very serious suggestion for possible help, one that a neuro at Scripps gave me about 27 years ago. I could not take Baclofen or the other common drug for spasm. Serious side effects. He told me to get some form of magnesium at the drug store or health store, getting one which caused the least diarrhea. I went on 800 mg a day and my foot spasm stopped. I had already been on calcium but it wasn't working any more.

In later years my spasms have spread, and jerking (myoclonus) entered the mix. Now I must take at least 1000 mg of magnesium a day to stop spasm and jerking of my back and legs. My feet don't spasm now because the magnesium works completely for them.
I do take a couple of other things to potentiate the magnesium, but the mag is the main event.
Please do not write this off as another "health nut". It has been the ONLY help I had and it has helped a lot.

Thank you Mariel, I didnt realize that the jerking was different from spasms. I thought it was the muscles spasming that made my legs and arms jump. I can be sitting at the computer and working the mouse and suddenly throw the mouse across the room from what I thought was a spasm. This magnesium, do I find it in the supplements area like by the vitamins? Im willing to try almost anything to get my body to calm down. My entire body does like a whole body tremor all day. Its horribly painful.