I need help

[wslocum27]

I have suffered with RLS since childhood, I always thought it was just me, never imagined this could happen to others. I am so depressed with the lack of sleep. It is effecting my family, my relationship with my wife, everything. I have a lot of stress on my right now, and my episodes happen too frequently. I need help. What can I do. I want to cut my leg or arm off when this happens. Sometimes one area goes away, only to develop in another.

[SquirmingSusan]

It sounds like you need to see a doctor about this, and fast. They can help with medication treatment.

In the meantime there are lots of things you can do to help yourself. Look at the medications you take and the foods you eat. A lot of medications can make the RLS worse - antihistamines, OTC sleeping pills, especially the ones with Benedryl, most antidepressants, most antinauseants. Also, caffeine, alcohol, and smoking can worsen symptoms in many people. Certain foods, like ice cream, can make it worse.

When you do go to the doctor, make sure to get your ferritin level checked. Low ferritin (iron stores) is linked to worsened RLS in many people.

Seek out the RLS Rebel website (use Google). She has tons of great coping strategies to keep from spinning out of control with the RLS. When the RLS is already severe, get up and get moving, stretch your arms and legs, or massage the affected areas. Use anything you have to distract yourself - listen to music and really concentrate on it, suck on suckers, read a book, do puzzles, go on line. Don't be a victim of it. Take charge. She also has published a book about her strategies for coping with RLS.

And while you're at this site, get educated. In this part of the message board, there are sticky posts at the top. Those contain all kinds of good information about RLS. Learn about everything you can.

Best wishes with it.

[beth]

Hi
I have a severe form of RLS and have tried Many of the suggested meds.I see a sleep specialist in my area but everything he has tried has not worked and it is hard to call in and speak to him.My husband is great and attends every appt, but it is tuff going,I am in the livingroom almost every night walking etc and won't even lay in there to watch tv with him for fear the rls symptoms will start.I have 7 adult children who are frightened of the type and amounts of meds they try on you to control it.I get to the point where I am tired of defending myself.The best thing is you can go on this site and talk to people who understand and are there to pick you up on your worse days.You begin to count on them sometimes more than the Drs.I have just about every book written and on those really bad nights[Every night] I read and reread them and it helps.
Take Care Beth

[wslocum27]

I would like to thank you for your replys. Again I am up, I finished watching game one of the world series and went to bed. I actually slept for an hour and a half. I was actually happy and surprised. I got up to go pee and tried to go back to sleep. The rls jumped me as soon as I put my head on the pillow. I am up watching tv and thought that I would check my posts. I am looking to find a doctor for a check up. I am unemployed and using medicaid so I am limited. Is this a disease that I can get disabilty for??? Well back to reading and thanks for the replys and any more that come in.

[beth]

Its a sad situation to be up most or all of the night when you just want to sleep.We just bought a new home and all the bedrooms are upstairs so when I am up at night I don't have to worry about bothering people.We are also sadly switching to twin beds side by side because my husband runs his own buisness and can't afford to be up all night with my tossing and leg kicks. I guess you do what you have to to make it work. Beth

[ViewsAskew]

I guess you do what you have to to make it work. Beth

Indeed we do. It isn't fair, it's not fun, it's just how it is.

[SquirmingSusan]

I am unemployed and using medicaid so I am limited. Is this a disease that I can get disabilty for??? Well back to reading and thanks for the replys and any more that come in.

That's really terrible to not have money and not have good health insurance. I don't know what Medicaid covers, but sometimes doctors will bill things differently so that different insurance will cover it. I know before I had an HMO, my doctor would bill my annual physicals so that it looked like the visit was for a medical condition. It was still truthful, just doing things a bit differently to get coverage.

What about free clinics? Do those exist anymore? Seems like they must with so many people without coverage.

Disability - Yes, there are people who have gotten disability for RLS. There have been a couple people from the forum who have gotten approved and have posted about it. It's difficult, but it's possible. If you go that route, I know of someone who helps people with the process.

[Aiken]

The thing about disability is that you will have to show that you are truly disabled by RLS, and that you've exhausted all treatments available to you without enough success to allow you to work. I'm not sure how that works if RLS is keeping you from working, and you need to work to afford treatment. That's a catch-22, and catch-22's really suck when dealing with the government.

If it were me, I'd take Susan's suggestion to consult with someone experienced in these matters. I know someone who applied a year ago and it's definitely something you'll want help with if you're anything like most RLS people, insofar as you have no get-up-and-go thanks to sleep deprivation. It sounds like a difficult and tiring process even for healthy people. That's only fair, I guess--I don't want the government giving my taxes away without making really, really sure it's the right thing to do.

[jaccolley]

I too have suffered from RLS and PLM since childhood and did not "discover" this until a week ago. My husband has always told me that I slammed my legs in bed but I could tell lately that it was affecting his sleep. One night I "googled" jerking legs and RLS and PLM popped up on the screen. As I was reading the symptoms, I began to cry tears of joy because now I knew what was causing my insomnia. I had never stopped and paid attention to my leg aches. I always attributed it to either never getting enough exercise or too much.

Over the last 10 years I haved told numerous doctors that I felt like I could not sit still. Like me they thought I was going through depression or had adult ADD. The lack of sleep was driving me into a depression!

I called and made an appointment with the specialist that is in our small town. It will be 3 weeks before he could see a new patient! I almost cried on the phone. Instead of just waiting, I decided to be proactive. I completely cut out caffeine and am walking 2 times a day. The pain has gone from a 10 down to a 5. BUT I am still experiencing the leg movement that wakes me at night. Also I am completing a sleep diary to take when I go for my appointment. November 5th won't get here soon enough!

After talking with my mom and dad, I realized that I inherited these disorders from Dad's side. Both he and his oldest brother have had the same symptoms for years but they contributed to their backs. Both have had numberous back surgeries from degenerative discs. They just thought it was the nerves "gone bad" in their legs. Also, at the age of 8 I had severe "growning pains". My knees would lock and I was unable to get out of chairs, etc. I remember my mom thought I had some kind of muscular disorder but the doctor said I just was experiencing growing pains. For over a year, I would wake in the night crying because my legs were hurting.

I am so glad my husband made me aware that I moved my legs during the night. I just wish I had paid attention to him earlier and it had not gotten to this level of pain and insomnia.

[Sojourner]

j, Welcome to our rls family. Mixed blessing to find us but glad you did. It is unfortunate that you and other members of your family had to wait so long to find what seems to be and rls/plmd diagnosis. I hope your new doc. is familiar with rls and will be able to work with you on a treatment plan. It may be that you have read the Managing Your RLS sticky in the New to RLS forum. It contains lots of good information particularly about things that can worsen RLS such as caffeine, alcohol, certain medications and lots of other irritants. So, your eliminating caffeine and engaging in moderate exercise is really, really great. It seems that back problems and back surgeries also may be a factor in RLS. Have you had your ferritin level checked. If not, good thing to ask your doc about. The diary is also a good idea. The Non-Pharma Forum may also give you some info. on other things people have tried to help with their RLS. May be something there that may help you for 3 weeks.

Welcome again and keep us posted on the appt. and more.

Best wishes,

M.

[jaccolley]

Thanks, M. I will check out what others are doing to help relieve their symptoms until my appt gets here.

[Sojourner]

j, Just a couple other comments. Part of your post sounds a lot like Periodic Leg Movement Disorder (PLMD). Some people have RLS and PLMD while some have one or the other. A bit of a debate whether they are in fact different particularly if you have RLS. Anyway, sometime the treatment can be the same. A sleep study is the gold standard for PLMD and can give you some stats as to the severity. A sleep study has no bearing on an RLS diagnosis as this is done via history and clinical diagnosis.

The Non-Pharma sections, in my opinion, contains lots of "garbage" in addition to some my legitimate type suggestions. So, before you run out and buy something you may want to do a search on the name for other threads or posts that may give some additional information.

Best of luck,

M.