New here! RLS sufferer since age 3!

[Ash1889]

Hi Everyone. I'm so glad I found this group. I never knew so many people suffer the way I do! Forgive me if this turns out to be long, but its just so good to have someone to talk to without telling me it's all in my head!

I'm 18 and I have had RLS since I was about 3. I remember my mom telling me that her grandmother was always shaking her legs, she couldnt stop. I asked her why and she said it was because she had something called RLS. Of course I didn't understand it back then but I then said to my mother, "Mom...the same thing happens to me! when I'm trying tofall asleep my legs start to tickle like there are bugs inside them. And then my legs move all by themselves!" She just chalked it up to my imagination from hearing the story about her Grandmother.

Fast forward to when I'm 16 years old. I had been living with this for 13 years. I never did well in school, because I never got any sleep and always called out sick because I was so tired. Finally, I went to the Dr. and brought up RLS. They ran some tests just to rule out other things, and Lo and behold...I was diagnosed with RLS.

I was put on sinimet. But stopped taking it because it made me EXTREMELY nasueous. This wouldnt work well for me because I also suffer from something called EMETOPHOBIA (The fear of Vomiting) Yes, It is a legitimate phobia, it's actually the 5th most common!

Now the only way I find I am able to sleep is by taking sleeping pills every single night. I have become addicted to those because of my stupid RLS. I just wish this would end!

[DARCYUK]

Hello Ash1889,
I was so sorry, to hear that you have RLS, however, I can assure you that you have come to the right place! I was diagnosed 'bout 3mths ago, and was having all sorts of probs with my meds, the people here are very kind and offer the most excellent advice, and give the support a lot of us need. I would however, in your case, see your Doc ASP if you think you have an reliance on the sleeping tablets, and then discuss with him/her the best medication to relieve your symptoms, I do hope it works out. Keep us posted, and try and keep smiling!!

[cmoore1958]

Hi Ash,

Sorry to hear of your problems with rls, but welcome you to our family. That's right, we are one big family and support is our first name!

I agree with DARCYUK that you need to call your doctor about the sleeping pills. Although I am not a doctor, there are a lot of treatments out there for rls. If you haven't been the Mayo Clinic Algorythm yet you need to go there and read it thoroughly to be educated on treatments, etc. for rls. Also most of us print it out and take it to our doctors so they have the information in front of them. This increases our chances of getting better rls care (although not always). Doctors tend to think more of it because it comes from the Mayo Clinic. Here is the direct link:

http://www.mayoclinicproceedings.com/in ... ef=7907crc

If your doctor is not educated about rls and the medications, and/or won't work with you to find relief you may need to find another rls doctor. Many of us have had to do just that. Most of us are more educated on rls than any doctor we have gone to.

You should also check out the stickies at the top of this forum for a lot more information and web site that can help you.

I do hope you find relief. Keep us posted on how you are doing.

Cyndi

[jumpy]

Hello, Ash

Please give everyone on the site more specific info.

What kind of sleeping pills are you taking? Many otc pills continue Benadryl or the equivalent. This can cause or increase the RLS. How much Sinemet were you taking? Sinemet is not the most recent RLS med. Although I have used it and it did not make me sick. I have read that it can cause the RLS symptoms to get worse. Check with your doctor about Requip or Mirapex. (These can also cause nasua.)

Read the site posts..Educate yourself..This is your best defence.

Print off the Mayo site. If necessary take it to your doctor.

I'll stop for now because I know there are people on this site that can give you more help and input.

Good luck, Pat

[lyndarae]

Hello Ash.......and Welcome to the family. I remember how good it felt when I found this group, just knowing I was not the only one with this rls and not crazy(well too crazy) help me find my way and get the help I needed. I also remember growing up with rls and missing alot of school of course it was all caulked up to growing pains back then.

There are some good docs and good meds out there but finding them is the task, and hard to do when you have no sleep and are at your wits end. But you can do it.........be sure to read and educate yourself and go in knowing your stuff. I had to go to a sleep doc who deals with rls, but it saved my butt.

Good luck to you and please keep us all posted. GOD BLESS~~~~~~Lyndarae

[ctravel12]

Hi Ash and welcome to this group. You got some great advise from these members. I am so sorry that you have rls (especially being so young) but am glad that you have found us.

Please never apologize for a long post. We learn from each other. I do agree that you should definitely see a dr who has knowledge of rls, willing to listen and above work with you which is very important.

Talk to your dr about the sleeping pills as he may suggest something else that may work. Alot of times we have to take a cocktail of meds to see what works. I know that does not sound too encouraging; however once you find the relief it will make a world of difference. You definitely need your quality of life back. One to thing to remember is what works for one may not work for another.

Also it is important to have your ferritin level check (iron defiency) and that you have to request this as it is not included in the normal bloodwork.

While talking to your dr see about getting a sleep study done. It diagnoses sleep apnea and PLMD (periiodic limb movement disorder) which you can have being asleep or even awake.

Please keep us posted and again welcome. Never hesitate to ask any questions. We are not drs but reading alot of the old and new posts is great.

The link that Cyndi Moore gave you please click on it and read it. It is excellent and if you are able please print it out for your dr.