10 replies to this topic

[racepace]

hi guys!
4 months post but oh my gaawd pretty much 24/7 spasms! i don't know if it is because my injury wasn't that long ago or im just prone to having them?

they seriously make me so tired and physically drained, from my leg kicking straight out to my arms shaking uncontrollably!

did anyone else have constant spasms first hurt and then they calmed down? i bloody hope they do!

[Tetracyclone]

Spasms let us know we are still alive. Seriously, have you tried medication? It can make a huge difference. Also move as much as you can. Things will get better.

[Smileyblue]

Spasms are THE WORST!

As Tetra said, medication can help when you find the right one in the right dosage.. Warmth (eg a hot shower/bath) also helps some.. Stretching is another method, but just be careful not to pull/tear the muscles/tendons..

There is hope though.. My spasms (for some unknown reason) along with my pain, disappeared recently after a scary bladder infection put me in hospital for some time.. My thoughts are that I had the bladder infection for a lot longer than we realised, and that's what kept the body spasming even after I had DREZ surgery.. (The bright side of spasms: they tell you when something's wrong in the areas you can't feel).. Now I just twitch a lot.. Lol.. Irritating but bearable, unlike the spasms were..

To leave you with a bit more hope, Mummy says my original Neurologist in Rehab said that they do tend to calm down in time, but no guarantees.. Hang in there.. ;-)

Edited by Smileyblue, 15 June 2011 - 01:25 PM.

[Edinburgh Colin]

Double edged sword for sure. They tell you if there is something out of the ordinary going on as they will invariably become worse as TC and Smiley pointed out but they also exercise the muscles and tendons and bits n bobs but sometimes it can be too strong and yep it is tiring and may hurt if you're incomplete.

Drugs can help to suppress them, Baclofen and Dantrolene is my present cocktail and it keeps them just below the surface, still active but manageable. The worst ones for me are when I'm dressing or getting into bed, going from sitting to sort of straight out and everything just goes rigid from my toes to my injury level at T3/4 including 3/4 of my diaphragm which is scary as I can only breathe with the little bit left I have full control of!

You will need to talk to your physicians and try some medication combinations to make them manageable but remember they are also a really good indicator of a problem so any change is a good pointer to check yourself out.

The other point specific to you is at 4 months it's really early on. I had almost no spasms until about 16 months post injury, and then as what seems to be neurological healing, (call that mostly pain not improved movement) things started to change for me. Been a tough 9 months but it's settling down a bit now.

Don't worry you'll get settled but it will take a little time, keep plugging away and try and make sure that you can get some quality sleep most of all as if you're fresh it's much easier to deal with these and everything else too.

Good Luck.

EC

[mcjane]

STRESS can cause spasms...and at 4 months you are so new to this! No doubt you are stressing about how you will ever learn to live with it. You will. And you might have to learn to live without people and things that stress you out. I had to eliminate a couple of people from my circle of friends because their toxic talk made my legs want to tie themselves in knots. Just the sound of their voices would make me spasm!

In August I will be 4 years in the chair. I don't take any drugs but I find that good Belgian beer really helps with spasms and nerve pain. Also keeps the kidneys flushed and bladder working! Haven't had a UTI in years. It seems that the FULL MOON also affects them. I know that sounds looney, pardon the pun, but they do act up more when it is bright at night.

Hope you find something that gives you comfort. Shalom

[tiya]

i agree with tetracyclone.try to move as much you can.

[Stand]

I'm not sure if it's because how many drugs I was on at the beginning or what, but I really didn't notice my spasms until a few months out. I'm coming up on my two year anniversary and they're still around, as would be expected. They really only intensify when I'm suffering from a UTI, then I just go to the Dr. and get on some antibiotics. You might also want to speak to someone about getting on baclofen. If you're not familiar you should definitely do some research. Best of luck!

Edited by Stand117711, 16 June 2011 - 05:25 AM.

[ZEN12many]

I had electric jolts run down my right leg for the first year after I was paralyzed. My physical therapist said it was the brain doing inventory to see if it could make a connection and to see what parts still work. The electric jolts almost always happened in the evening and were very regular (like every 11 seconds a new jolt down my leg).

After a year, it mostly went away. Now, 6.5 years later, I still feel the electricity every once in awhile but it is not nearly as intense. My right leg still does involuntary movement; when I lay on my side and my right leg is on top, sometimes it kicks itself so hard off the bed that it almost drags the rest of me off the bed also.

[pinkcloud]

Hi

I was having spasms in me back....now I didnt 'feel' spasms I just hurt realll bad. It wasnt until me pain management consultant looked at them, did i even know thats what the pain was. He gave me Botox.

Now Botox has worn off and I 'feel' me back 'moving' like big pulses under me skin...

Now...what I do for back spasm is me back actually 'locks' like it goes into temporary paralysis. I lie down...I put a bag of frozen peas on me back....(I cant feel hot/cold there so i am lucky) and go sleep. THEN when I wake up..I rotate me shoulders back and forth and..snap,crackle,pop...me back has movement again.

Please dont try this method on yaself without asking someone on here with medical knowledge..or..doctor. I found this by accident and it works for me, it may be its a wrong thing to do but its what i have to do

Are you getting enough sleep at night and laying on a surface thats comfortable for you..this makes a huge difference to me too.

I didnt get bad spaz attacks until about a year or so..by that i mean the legs moving at 100 times a minute...massage helps this i find.

[mellowgator]

i was put on valium 10mg 4x a day while still in rehab. 7 years later i got pregnant and had to go off the medicine and and at that point i discovered i could move my toes. so it's very possible that muscle relaxants will mask movement and during the first couple of years you will most likely will gain some return.

the best thing i've found for spasms is pot. it is by far the best way to control spasms and pain. i also have valium but rarely take it. i also tried baclofin which made me sleep for 12 hours straight which isn't practical if you have a life to lead.

spasms are super common and probably will always be present but they are controllable.

karen

[sh1wn]

I agree with mellow on the valium or pot. I have only used valium a few time's and it worked good but I have found pot works better for me. It only takes a small dose to control the spasm, less than what it takes to feel stoned.