Hi I am new to this group. I was wondering if anyone would have a suggestion for what I should do. About 4 years ago I started receiving a uncomfortable feeling in what seemed to be in my lower intestinal area. As time passed I realized that it was not a problem with my bowel movements or digestion but rather a muscle tightening in this area. When it started, it only occurred every other day then it changed to everyday. Now sensation has become intolerable to the point that it is hard for me to even no get into my chair. Finally about 6 months ago I finally found a doctor that was willing to approach my problems as a SCI issue and has decided that this was a form of spasicity. So the first thing I did was to take baclofen. I took it for 1 1/2 months which I took against my best judgment because it never gave me any sort of relieve, made the spasicity worse ( now I have it in the sides of my thighs and calves ), and it made me feel absolutely insane ! Then I was sent to physical therapy where they have tried an NEMS machine and an ultrasound machine which did relieve some of the tightness I had in my hamstrings and calves but not much for the deep tightness in my pelvic area except for moving the sensation from the lower intestinal area to the pelvic area. I went to see a a spasicity specialist and she straight out told me that this was a very unusual case and wants me to see an urologist and a gynecologist. Acupuncture and stretching have helped and I haven't been able to exercise for 2 years because ANY type of physical activity makes it much worse. My injury was in 1999 t-12 - L-1 area. This is the short version of everything I've been dealing with. I am extremely frustrated because I have worked very hard to be as independent as I can be and this condition has floored me and I feel that I am less independent now than I was when I first had my injury so any kind of suggestions anyone has would be greatly appreciated. Thanks !!!

Hi high Roller,

Welcome! Sorry you are having so many problems. Have you tried any other spasticity drugs? There are some others available that may help, also are you sure the baclofen actually made it worse or is it possible it was going to get worse anyway? It may seem an extreme measure but maybe consider going for the test do see if a baclofen pump may be of any benefit, if you read around the forum (and I suspect you have!) you will see that there are many people who go nowhere with oral drugs but had great relief with the pump, just a thought. Also I know you said that any sort of physical activity makes it worse but have you tried swimming or hydrotherapy? Personally I find water a great help, everything loosens up and calms down.
If these are all no go then I hope someone else has the answer for you!

Good luck!

Hi,

Normally, exercise reduces spasticity, not increases it. It could be that when you're exercising, something is being irritated, causing the spasticity.

This could be bladder related, or bowel related. It could even be related to your injury.

If it happens every other day, does it follow any pattern in relation to your bowel program, or bladder management?

Regards

Simon