Search found 71 matches

by squirmy
Thu Jun 02, 2005 2:59 am
Forum: General Topics: RLS/WED
Topic: Veinless Humans
Replies: 15
Views: 4512

Athena and Sara, the RLS after having blood drawn is probably just a coincidence. I don't have RLS everyday, but when I do, I always wonder if something I did triggered it. I know driving or resting triggers it for me. As for SLE I was just recently diagnosed, but my doc thinks it started in my teen...
by squirmy
Wed Jun 01, 2005 2:40 pm
Forum: General Topics: RLS/WED
Topic: Memphis progress report(New thyroid information)
Replies: 14
Views: 4766

hi doug, I have had some good luck with sinemet, but it wears off quickly. I take two at bedtime and another in the middle of the night, if I wake with those awful sensations. And sometimes during the day. If I don't have any feelings of that electricity buzzing or anything, I try not to take them a...
by squirmy
Wed Jun 01, 2005 2:14 pm
Forum: General Topics: RLS/WED
Topic: Veinless Humans
Replies: 15
Views: 4512

Interesting topic, I was in on the original vein discussion. Takes a good five tries and it usually triggers a daytime RLS episode, or it seems to, who knows. I think my veins roll, due to lack of arm muscle, because you can see them very easily. When my RLS kicked in big time, I was also having a l...
by squirmy
Tue May 31, 2005 8:00 pm
Forum: General Topics: RLS/WED
Topic: Disability: stories to help doctor writing the book
Replies: 15
Views: 4070

hi Ann, glad my story might help. One thing about all the SSD stuff is that they do seem more interested in the SLE. It is also a misunderstood disease, but they have heard of it, at least. If I just had SLE, I could work temporarily, maybe self-employment, but along with the RLS, I just don't get t...
by squirmy
Tue May 31, 2005 2:36 pm
Forum: General Topics: RLS/WED
Topic: Disability: stories to help doctor writing the book
Replies: 15
Views: 4070

I went ahead and posted my RLS story. LIVING WITH RLS By Tina Even during a bad RLS night, I try to describe the sensations to myself and still have trouble, but I will try. It occurs in both legs, but at the onset, I feel achiness in my right knee. I just get comfortable and on the verge of sleep a...
by squirmy
Tue May 31, 2005 2:28 pm
Forum: General Topics: RLS/WED
Topic: Disability: stories to help doctor writing the book
Replies: 15
Views: 4070

I just recently applied for SSD. I also have Lupus, but it's the RLS that is most debilatating for me. I think the lack of sleep I get at night and the lack of coordination and concentration is as important to them as the recurring illnesses I have. I have written out my story "Living with RLS" and ...
by squirmy
Thu May 19, 2005 4:06 pm
Forum: General Topics: RLS/WED
Topic: I'm Back....for the most part
Replies: 11
Views: 3193

Congratulations on the support group leader position. I am just getting to know you on this board, but I already admire your work and supportive nature. I hope your husband's recovery goes well and good luck in your new position. Tina
by squirmy
Wed May 18, 2005 5:01 pm
Forum: General Topics: RLS/WED
Topic: Whoo-hoo! Watch your Wall Street Journal
Replies: 17
Views: 3733

news article

I really really want to read this article. I think it is just wonderful what some of you people are doing to increase awareness. My dad let me know about Requip, but for now after doubling the Sinemet, I'm doing o.k. so I'll just stick with what's working. But it's nice to know we are getting more o...
by squirmy
Wed May 11, 2005 12:46 pm
Forum: Just Joined?
Topic: new to forum
Replies: 2
Views: 846

Welcome. You need to find a doctor that will prescribe some medicine for you. And yes, you must sleep during the day, it's the only time I feel like I really get any sleep. Read thru some past posts here, print stuff out for your family, you really need them to be more supportive. Keep a journal of ...
by squirmy
Wed May 04, 2005 5:09 pm
Forum: Just Joined?
Topic: Oh what a happy day it is for me!!!!!!!!!
Replies: 6
Views: 1577

So glad for you! I went thru several docs before someone put a name to it, I didn't know how to explain it. Then I found this helpful place. I have had some luck with some different medicines, not long term, but when one wears off, we start another. It has been wonderful to get some sleep. Welcome t...
by squirmy
Mon May 02, 2005 12:43 pm
Forum: General Topics: RLS/WED
Topic: Good Question?
Replies: 3
Views: 1371

that would be a very good idea, if they are interested enough. I think the Q of L statements are a great thing, because I think the interested ones will receive them and read them and hopefully motivate them to find more relief for their patients. Tina
by squirmy
Fri Apr 29, 2005 4:40 pm
Forum: General Topics: RLS/WED
Topic: sleep thief, LIFE THIEF!!!!
Replies: 373
Views: 97308

I goofed, my post above is a little outdated, I only read the first page of postings. I am new to message boarding. Glad you are doing better. Tina
by squirmy
Fri Apr 29, 2005 4:34 pm
Forum: General Topics: RLS/WED
Topic: sleep thief, LIFE THIEF!!!!
Replies: 373
Views: 97308

so sorry I missed you in chat. I just read all your posts. I hope you got some help this morning. And I am so glad you found someone who has some compassion for what you are going thru. I know it can't be soon enough for you to get the right meds. I'll be watching for your next posting, hang in ther...
by squirmy
Fri Apr 29, 2005 4:15 pm
Forum: General Topics: RLS/WED
Topic: Weird new symptom???
Replies: 4
Views: 1585

Weird new symptom???

o.k., I hope this was a one time deal, but last night, when trying to get to sleep, I had RLS sensations in my face?! And, when I closed my eyes they would roll up in my head and it was involuntary, but I was completely conscience of it. It reminded me of the discomfort I have in legs and arms. Have...
by squirmy
Fri Apr 29, 2005 1:29 pm
Forum: Prescription Medications
Topic: Neurontin Lawsuit
Replies: 8
Views: 4844

Neurontin was the first medicine my doc prescribed me for RLS. But it stopped working after a month and symptoms returned worse than before, well they lasted longer and during the day also. Now Sinemet has been very helpful, but is now wearing off also. What is the lawsuit really saying. Because Neu...

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