Restless Legs Syndrome (RLS) Discussion Board

Hi everyone,

I'm new to this wonderful group but have had RLS for as long back as I could remember. The pain I had in my legs as a child were not "growing pains" as my parents told me....but RLS. Having to sit through movies and in airline seats with the gnawing pain was unbearabl;e at times. Now RLS visits me at night at night. Had a bad one Monday night where all I could do was get out of bed and onto the livingroom couch and rocked back and forth. My cat thought I was crazy! The hardest part for me is that my boyfriend is among the non-believers and gives me a hard time about it. Whenever he sees the Requip commercial he laughs, I've told him that I am not a hypochondriac and that the pain and discomfort is real. I have forwarded him some articles from the RLS website in the hopes that he at least will keep an open mind about this.

Thanks for being here!

-Suz

S, Welcome and glad you found us. Whack your boyfriend on the head... shame on him. Anyway, hope some reading will help him understand that what we experience is real and that the condition is real.

Best wishes,

M.

Hi Suz. Welcome to the forum. I was going to tell you to beat up your boyfriend, but Mark beat me to it. Maybe stake him to an anthill and ask him if the crawling and biting sensations are real. But seriously, what else does he not believe that you tell him? Empathy and compassion are nice to have from a partner.

Be sure and read through the sticky posts at the top of this section. There is a wealth of information in there. One thing we like to point people to is the Mayo Clinic Algorithm for the Treatment of RLS. (I just pointed my neurologist to it yesterday!) It outlines treatment options beginning with having your ferritin checked (ask your doctor to do that) all the way through medication treatments.

Maybe you can tell your bf that the Mayo Clinic thinks that RLS is real...

Welcome Suz. I'm sorry your boyfriend is one of the non believers. I hope you find the forum and the rest of the site helpful to not only you but to your boyfriend as well.
By the way, I agree with Susan about staking the man to an anthill!

Thanks so much for your endearing words! I sent him a link about this and plan on talking to him about this tomorrow night (wish me luck). He's normally extremely empathetic but I'm not the world's healthiest person. I had a gastric bypass 13 yrs ago and became severely anemic, so much so that twice I had to go to the chemo ward for 6 weeks and have IV's of iron as I can't absorb vitamins, etc. the "normal" way. I recently had my ferritin levels checked and they said my Hemoglobin was low (12) but not as low as it was b4 treatment (6.7).

Thanks for your response! I may bat him over the head! Nah just kidding. He's a keeper. ; )

-Suz

Hi Suz and welcome to this site. I am sorry for what you are going through. I also have painful rls and have had it for over 20 yrs and can certainly relate to rocking back and forth. In fact when they are really bad I sit on the edge of my bed and swing my legs back forth as hard and fast as I can until I am totally exhausted and finally fall asleep.

I am sorry that your bf thinks that rls is a laughing matter. I have often said until someone walks in your shoes for a minute, day, week, month, etc. they have no idea what you are going through. Being sleep deprived is miserable as I know we all have been down that road and at times it is every lonely.

On this forum please read the sticky post "Managing RLS" as there is alot of good info and like Susan said the Mayo Clinic Algorithm has an excellent article. Please read it. Do not know if you are seeing a dr for your rls; however if you are please give him a copy too. If you are not seeing a dr and plan on please be sure to find one that has knowledge of rls. It is good to educate yourself as much as possible on rls. Also if you do have a dr that you see and have a good rapport with him/her that is so important. You can educate him/her regarding rls by giving him/her some of the articles to read.

There are two (2) good sites to read www.rlshelp.org and www.wemove.org

Have you had your ferritin level (iron deficieny) checked? It should be 50 or above. This bloodwork you have to request as it is not included in the normal bloodwork.

You may also look into to see if there is a support group in your area. If you do (they are free) please go and take your bf so he can see you are not alone.

Believe me, I am not picking on your bf as you said he usually has alot of empathy and is definitely a keeper. Most people do not have any idea of what we are going through if they have never had. I would not wish it on my worse enemy.

I hope that this has been of some help to you and again, welcome.

Hi again, Suz. I also had gastric bypass, about 5-1/2 years ago. I became anemic within 2 months and had to have 10 iron shots in the butt. Ouch. Last summer I had 4 infusions. I'll take the infusions any day over the shots. I wish my current neurologist would prescribe infusions now. My ferritin is a whopping 14. She says I have to at least try taking iron every day for a bit before she'll do that. I told her to look up the Mayo Clinic Algorithm and she said she would, so hopefully she'll change her tune on the infusions. I'm one who really responds well to iron, and I've tried taking it orally for months before with no results.

BTW, my gastric bypass surgeon recommends taking ferrous fumarate, and the band that he likes is called Vitron-C. It's iron with vitamin C.