Curious about others

[rlsjanet]

Hi,
I'm new to this discussion board but not new to RLS. Some of my experience is similar to many others but some seems odd to me. I'd like to know if anyone else has these experiences?
What began as "jiggy legs" in pregnancy and then when I was tired (it actually went away when I went to bed,) became terrible symptoms that were worse after I went to bed. I saw a neurologist and got medication which worked for a couple years and then turned into vicious augmentation and rebound. These things are common for RLS as I've read. However, at one point someone suggested I massage my lower back and that seemed to help. But something strange happened. The RLS moved into my lower back and has stayed there since. It's not in my legs anymore. I can rub my back, even gently scratch my skin, and that relieves it (which is annoying to do in bed but...whatever, I have to do it.) When I returned to the neurologist, the nurse practitioner told me that was impossible and if it was in my back, it wasn't RLS. I really laid into her, I was so angry.
The other thing I'm curious about is, since entering menopause, my symptoms have subsided considerably. Has anyone else had this experience? My guess is the estrogen levels are involved.
Many thanks,
Janet

[Polar Bear]

Hi Janet, and welcome to the Discussion Board.

The neurologist's nurse practitioner is so wrong - RLS/WED can occur just about anywhere.
Having said that, I would have imagined that the symptoms would be in the legs also. However, upon reflection, sometimes my arms get going with symptoms and not my legs although they usually kick in later. So perhaps symptoms in the back and not the legs isn't so different. Tho I wouldn't have expected it to be only in your back. We are all so different that anything is possible and I can't stand the professionals who will only go by the book and discount anything that does not tick their check-list.

I understand that it is generally agreed that hormones will affect our RLS/WED symptoms although I believe that it usually gets worse following the menopause. Lucky you that has found things to have become easier.

Are you presently taking any medication or have your symptoms subsided to the point where you can manage without medication.

[badnights]

My sister got RLS/WED in all three pregnancies, but has none now. She had to get out of bed and do squats. I don't recall having it in pregnancy (not any more than I've always had it, which is mildly forever) but I had my kids in my twenties whereas she had hers in her 30's (and 40 for the last one I think. My symptoms got gradually worse with age and went into overdrive after a knee operation 4 or 5 years ago. One of our brothers gets up and paces at night; I think he may have a problem. The other brother seems to have it mildly but once had a bad night after taking too much Tylenol Cold. so we all have it differently.

My two sons have it as well. Not much of a problem for the older one but the younger suffers chronic insomnia, probably due to RLS/WED, and has since he was 18 or younger. He's 22 now. The RLS/WED has caused problems, but he doesn't realize yet where they're coming from; it's hard to make the connection between quality of sleep and stuff that happens in your life, choices you make, decisions you can't make because your brain is clogged with its need for rest and restoration.

You didn't really have any direct questions so I'm just rambling some thoughts here.

Once you've felt it, you know it. And if you feel it in your back,I believe you. I get it in even worse places. I still get is in my legs and arms too , though, so that part of your experience is unusual.

[ViewsAskew]

Shoot - I though I replied to this when it was posted - I hate when I forget!

The NP is terribly uninformed - RLS/WED can be in any body part. [edited to add] And it often moves to new body parts over time. As to it leaving one part it used to be in, it's not common, but others have noted it.

It's a really strange disease, isn't it?

[Polar Bear]

I used to have rls in my legs i.e. sometimes one leg, sometimes both legs, and sometimes it would start in my arm/arms as well.
Nowadays it can start in my arms before its in the legs, tho in a few minutes it will eventually appear in the legs as well.

[rlsjanet]

Thanks for your replies. Yes, it is a very strange disease.