Anyone else have symptoms this severe?

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lynncomb
Posts: 9
Joined: Tue Mar 29, 2011 5:55 am

Re: Anyone else have symptoms this severe?

Postby lynncomb » Thu Jun 23, 2016 8:26 pm

To Rustsmith, Well, I have not yet told you all the thngs I have. The list is very long. But, I think I could handle it if I could sleep. My PLMS index is 36, my arousal index is 24/hr. This means out of a 6 hour sleep study, I slept 40 actually minutes. I thought I was asleep, but they said that above a certain point you are considered awake. So I call it "not sleep". I usually don't hit below phase 2 sleep. So I can look asleep, think I am asleep, but I am not getting any restful sleep, more tired when I wake up. As far as treatment, there are no doctors here who really treat RLS/PLMS. Since I am very sensitive to all dopamine, and I have phsycotic reactions, they wanted me to take gargentin with seconal. Which I could not do. The neuerologist I saw, said she would cure me (LOL), but I had to stop all other medications. My psychiatrist said no and I have very sever depression and am suicidual. So she called me an uncooperative patient. There is not a Quality Care Clinic closer to me than California and it is just not possible for me to go there. I accept what I have, all of it and am now developing some diabetic towards the end symptoms. The main reason I came here is because, I think sometimes I am going mad, and I have never had anyone who had RLS/PLMS to talk to. If anything, reading all the posts and answers is helping me to retain my sanity. I do have a good pain management doctor who "kind of" understands and is willing to treat the Fibro pain. I have had doctors who simply refuse to take me. Probably because I research and know more about my illness' than they do. Thanks so much. Peace and hope to you.

ViewsAskew
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Posts: 14650
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: Anyone else have symptoms this severe?

Postby ViewsAskew » Fri Jun 24, 2016 2:35 am

lynncomb - so sorry for your situation. To be called an uncooperative patient (I've been in a similar situation) when you won't hurt yourself in other ways is unconscionable. Truly.

We may not be able to help you find ways to make your situation better. But, we do understand.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Polar Bear
Moderator
Posts: 6704
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Anyone else have symptoms this severe?

Postby Polar Bear » Fri Jun 24, 2016 5:03 pm

This week I had to go to my GP practice after two weeks of treating insect bites got on a long haul holiday. They had appeared to be clearing up and then flared up again only to be much bigger, really maddening itch/scratch/itch. Over 30 of them. Using over the counter treatments didn't help.

GP (not my regular wonderful GP) prescribed stronger cortisone cream, a daily antihistimine and a nightly (drowsy) antihistimine. I mentioned that I hoped the antihistimines wouldn't have a negative effect on my rls symptoms.

His response was that antihistimines will have no ill effect on my rls whatsoever, that they are one of the medications always very 'cooperative' which is why they are so freely available over the counter.

My response - it is known that antihistimines can have an ill effect on the symptoms of a % of rls sufferers.

GP - I doubt that very much - don't think so.

My response - My information would differ etc. etc.

Thank goodness I rarely see this guy. He's the same dr who many years ago asked was my Ropinerole prescribed for arthritis !!

Fortunately I appear to have had no ill effect from the antihistimines but felt totally frustrated at his blase attitude and indeed lack of interest.

lynncomb - there is no doubt that my frustration at his attitude and lack of knowledge is but a drop in the ocean compared to what you are coping with at present. You are not going mad, you are coping as best you can with several horrible conditions and I wish you well as you deal with this.

We are hear to listen and we do understand your exceptional frustration.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

ViewsAskew
Moderator
Posts: 14650
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: Anyone else have symptoms this severe?

Postby ViewsAskew » Fri Jun 24, 2016 6:17 pm

SMH

(shaking my head)
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

lynncomb
Posts: 9
Joined: Tue Mar 29, 2011 5:55 am

Re: Anyone else have symptoms this severe?

Postby lynncomb » Sat Jun 25, 2016 12:47 am

Thank you everyone,
I have had people say they understand, but they don't. But, I know that all of you do and it helps. It really does.
We could do a big post on uniformed doctors but it wouldn't accomplish anything. I have a favorite quote from Ann Landers, "Always remember that 50% of doctors graduated at the bottom of their class." Worth remembering and I think I have met a lot of them. LOL.
Peace and hope to all of you.

Polar Bear
Moderator
Posts: 6704
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Anyone else have symptoms this severe?

Postby Polar Bear » Sat Jun 25, 2016 2:17 am

Brilliant quote :)
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

leggo_my_legs
Posts: 133
Joined: Sun Oct 16, 2016 12:29 am

Re: Anyone else have symptoms this severe?

Postby leggo_my_legs » Wed Oct 26, 2016 7:32 am

Yes! #1 and #7. PMLS here, with probably a rare bout of RLS. I am 44, diagnosed with PMLS a few weeks ago.

I remember at 6 years old sharing a hotel bed with my sister, my father haranguing me in the morning saying, "Do we need to get you a crib?! Only babies kick like that!" Because shaming is helpful for neirological issues, right?! Thanks dad.

And a few years ago, sharing a bed with a friend in a hotel, she didn't sleep a wink as I was moving and kicking and snoring and forgetting to breathe so much. After awhile she just gave up waking me up bc I'd just do it again. And it was her 40th birthday party.

And I've had the severe restless legs after anesthesia symptom too.

On the positive side, since it srarted young, I can probably say it isn't a lifestyle issue!!! :lol:


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