General symptons-Is it really RLS???????

[GRNMOUNTGRL]

It has been along time since I have been here. Actually, haven't been able to sit still long enough to read anything. I have been on several different meds over the past several years since they first told me that I had RLS. I am now on Mirapex and while it appeared to stop working for a while, I went off it for a few and now that I am back on, with a slightly higher dosage, it appears to be helping once again.

I have recently moved back to my home state and in starting over with a new physician I found that he feels I might not have RLS, which would be good except that there is something going on. I described my RLS like this: My leg muscles will tighten hard like a rock, stay that why for several seconds and then just let go and spasm. To the point where anyone looking at my legs could actually see them moving and spasming. In the process my leg muscles have become tight, which is a good thing. My arms will also spasm. There is a strange sense of pain with this spasming.

There was a point when the tightening and spasms were so bad that I would literally cry and just walk around the house. There was nothing else I could do. Once I went off the Mirapex they went back to 24-7 tightening and spasming and it was horrible. I went back on and for the last four days I have had wonderful relief.

So, my question is. Is what I have really RLS, does RLS show itself in the form of muscle tightening and then spasming? Does anyone else have RLS show up in this manner? Could it be something beside RLS?

I am desperate because I don't know how long until the Mirapex stops working again and once it does I know what I am in for.

Thanks all.

Grnmountgrl (Rory)

[dogeyed]

I have the same RLS as you, I can see the muscles moving, I describe it as a grinding spasmodic grip, the pull is powerful, hurts awful, deep ache, at night sometimes feels like ants on my legs, I have it 24/7, and getting up and walking is the only thing that stops it (for as long as you walk) or medication. It is NOT the same as the sharp-pain foot cramp from too little iron, where your foot arches and the big toe goes up. If I could choose between the two, I'd take a foot cramp any day. Some meds "augment," that is their effectiveness dimishes and can even make the situation worse. Print out the following webpage and give it to your doctor, from this link to a government website (National Institutes of Health). It will help edubicate him. But he is a saint if he has any ideas about what else it could be, and we'd all like to know about it.

http://www.ninds.nih.gov/disorders/rest ... s_legs.htm

[GRNMOUNTGRL]

Thank you so much for the reply. I was beginning to think I was the only one with the tightening and spasming legs that someone had called RLS. You are right about those leg cramps, I would rather have those then whatever it is that I have. While they say it is RLS you are the only person who has responded to my post about my symptons that appear to be different then the symptoms most people have.

I don't have the ant's thing though. Just the muscle tightening then the spasms. I will print out your information to my doctor. Having just moved back into my home state, the task is now to find a doctor who understands RLS.

Thank you.

Grnmountgrl

[blryan]

I, too, have the muscle tightening and spasms. In fact, that was my very first symptom that drove me to the Dr. I couldn't figure out why my body was moving when I didn't want it to. I was actually surprised when he said RLS.
I used to have creepy crawly sensations too, but that is mostly gone. I am much worse when I'm under stress or I've had caffeine or sugar. I'm currently taking 1mg of Requip and that seems to help, but not completely take the spasms away. I also got worse when I quit exercising for awhile. I'm back going to the gym and hope to cut down the Requip to .5mg

Barb

[GRNMOUNTGRL]

I am so glad to have someone else have the same symptoms that I have. I iknow that probably sounds awful but I kept thinking I was crazy...

I am on Mirapex, having had to go off it for a while and lived in agony for several days, I take the larest dosage in the evening and a lower dosage in the morning. I have not had an eposide for 6 days now. Praise God.

I have been off the caffine for awhile and have noticed a change if I do decide to treat myself and have some caffine. The stress, I believe , is one of the biggest triggers for RLS. Before I left my old job I was spasming 24-7. Once I left the job the spasms got under control, to the point where the meds worked.

Thank you so much for your posting.

Grnmountgrl

[ctravel12]

Hey Rory it is good seeing you posting again. I am glad that you are doing better with your meds. I had some problem with mirapex but mainly because I was not taking the right mgs. I was only taking half of .125mg and woud wake up during the night with problems and also had some during the daytime.

Now I am taking half of .125mg around 4pm my time and the other half just at bedtime and it seems to be working fine.

Take care, and again, it's great to hear from you.