I'm 64, female, and have RLS which has gradually worsened. I first remember experiencing it when I was a very young child and was disciplined for not sitting still, yelled at by my sisters for not laying still in bed (we had 3 to a bed back then)... but no one ever thought it was a medical condition.
People look at each other funny when I am dumb enough to talk about RLS... they think I 'm nuts. It's nice to find a place where my illness is believed.
My question to you all is what can I do for it? I can cope with the RLS in the evenings... and I'm usually tired enough after working all day to fall asleep despite my squirming. But I'm not sure if it's the RLS or my weak bladder that awakens me about 2 a.m. and then I can't get back to sleep because of my RLS. I toss and turn so much my bed sheets are all tangled. It drives me nuts because I know my alarm will be going off at 5:30 and I'll be dragging myself to work unrefreshed.
When I asked my doctor of medication she said she didn't feel comfortable prescribing it because they hadn't been on the market long enough and she was afraid it may cause other problems. I went for a sleep study and they said I had sleep apnea too. But I wake up in the middle of the night even when I'm on the machine. I now use a mouthpiece for that. They mentioned my RLS only briefly on the medical report from the study like it wasn't really a problem.
Hi B and welcome to our rls family. One of our standard recommendations to new posters is to read the Managing you RLS sticky at the top of the New to RLS forum--that and reading the Mayo Clinic Algorithm. I'm sure you will find information there that may be helpful in answering your question about "what you can do for it." The Non-Pharma forum will also have many posts related to things such as herbs, acupuncture, compression stockings or other such "non-medicinal" things that people have tried--some with success others with not a lot of success. Happy reading.
Have you been formally diagnosed with rls or is that still an issue? If an issue, could you describe you "symptoms" a bit more. Sleep studies are not diagnostic with respect to RLS but have relevance to PLMD. RLS is typically diagnosed through history and clinical evaluation. So, not sure if it is meaningful or not to be in our out of the sleep study report other than if it is background/history. Another standard recommendation here is to make sure your ferritin levels are up to snuff. Always good to rule out other possible conditions that may be related to your rls and complicate things i.e. sleep apnea. Hopefully that is or getting sorted out.
Is you current doc knowledgeable about rls and treatments. What medications did you discuss with your doc? Mirapex and Requip have both been approved by the FDA for treatment of rls and are usually frontline medications which are prescribed for rls. So, depending on your faith in the FDA, both those medications do have research and testing behind them behind them. If your rls is manageable, and that is great, throughout the day and just "may be waking you up at night" then perhaps one of the sleep medications may be something to discuss with you doctor. They do not specifically help the rls but sometime make you sleepy enough to the extent that you can perhaps get some sleep through the night. All meds, even herbs and over the counter medicines, come with risks. You will have to decide what risks and what degree of risk, in your particular case, you are willing to accept. Often that has some direct relationship to the quality of life impact created by your rls.
Sleep deprivation is no fun and sure can put the kabosh on things like a job, caring for a family, and just enjoying life. Not much fun when others don't thing you have a "real" problems either. Shame on them.
I'm sure others will give you some feedback. Welcome and glad you found us.
Best wishes,
M.
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I have not been diagnosed officially. My doctor is not familiar with RLS.
I do not have pain... I see others here have pain. I do not. I just have to keep moving my legs. There is a feeling in them that just wants to move... hard to explain. I get a similar feeling when I am overly tired or bored. When I take a lot of medications I always get a bad case of RLS... especially allergy meds. Now, since the syndrome has accelerated I can't even take aspirin without a bad case of RLS.
I also have a lot of leg itching but there is never a rash. My doctor could not find a diagnosis for that at all. My legs were beat red but no rash... I get this every year around late June or early July. It may not be related.
B, Some of us have pain with our rls, some of us do not, some of us have the creepy crawlies, some of us do not.... rls expresses itself in lots of different ways and in lots of different places i.e. hands, arms, legs, ankles. Pretty much though... it occurs mostly as rest (I guess that is why the evening or bedtime is often focused up), gives us the desire to move, and it gets better when we do move. If that pretty much sounds like you then it's likely you have rls--particularly if there are no other possible considerations. For instance my arthritis cause me pain particularly if I am sitting. I know that if I get up and move around (get lubed up so to speak) that I probably will feel better at least for a bit. Anyway, lots of other conditions can typically be easy to rule out. So, if you meet those criteria, you--as so many others who visit here--probably will know you have rls before your doc! Of course the benefit of getting a formal diagnosis would be treatment. What you decide to do would be up to you--particularly with respect to prescription medications of which there are quite a few options and sequence as the Mayo Clinic Algorithm will list. A neurologist or sleep specialist who is familiar with rls is a good choice for diagnosis and treatment. However, the title of the person is not as important as their knowledge of rls and perhaps willingness to be flexible and open minded with respect to treatment options. My primary care (internist) is currently my treatment person for rls. However, in the past, I have been treated by a neurologist and sleep disorder specialist. If your doctor is not familiar ask if she can refer you to someone who is. If you tell us your general location, someone here may be able to pass a name on to you.
Aside from finding a good doc, the best thing you can do for yourself is education and "advocation." Ask, read, and learn as much as you can about rls. Then don't be afraid to advocate for yourself with you doc with respect to getting the best care and treatment you deserve.
Many allergy meds are KNOWN to make rls worse--again not in everyone but the tendency is for them to do that. Benedryl is a good example of one that often makes rls worse. Things like caffeine, alcohol, and lots of other medications can often make rls worse. So, if you have allergies and you take some type of allergy med, that could be making your rls worse. I cannot use Benedryl but am able to use Claritin. Your "redness" may not be related to rls but any medications you take for the redness may be related to your rls. Anyway, the Managing your RLS sticky will have information on some of those types of things.
What other medications do you take?
Once again,
Best wishes,
M.
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I'm from Buffalo NY. I'm taking Cartia for blood pressure, and Prilosec for GERD. That's it. Sometimes I have allergic sinusitis and get a violent fit of it that only Benydryl will help... I will then suffer terribly with RLS. But aspirin or Tylenol never made it worse until recently.
I have been on the Atkins diet because I have low blood sugar and am overweight.... I feel good on the diet because I'm not supposed to eat carbs anyway and feel better. It seems, however, to be making my RLS worse. Perhaps the iron thing. I'm going to call my doctor today and ask her to fax me an order for a blood test to see what my iron levels are. I eat a lot of red meat and veggies though.
I have suspected thyroid problems for years but my tests always are borderline normal.
B, If your rls get worse after taking the Benydryl then I would ask your doctor about possible alternatives to try in hopes of finding one which will nat make your rls flare. That may be a start. As I said, for me, Claritin does not make my rls worse. But, don't know if that will work for your condition. Thought I remember reading that Zyrtec also not bad for some. Try to develop a plan for yourself with respect to things you need to do and which are within your control and which are not. If you need a pain an otc pain reliever--have you tried ibuprofin (Aleve)? I think finding a doc versed in rls may be a good item to be in that plan.
Best wishes,
M.
This post simply reflects opinion. Quantities are limited while supplies last. Some assembly required.
I have little to add, because most of the good advice has been offered.
I got caught by the fact that your doc is uneducated.
If you and your doc have a good relationship and she is WILLING to learn then you could have a good chance with her. The materials are all here to help her, if she really cares to learn.
If not, do not feel bad to find another doctor.
Your not alone anymore, we have us!
Hope all is getting better or at least you feel better knowing there is help out there and certainly HOPE.
I tried to print the article; Mayo Clinic Algorithm for RLS but it would not print.
Is there a way to print it? I want to take to the doc's with me when I go in Oct.
I had a very bad night last night or I should say wee hours of this a.m.
It seems worse early a.m. than at night. The "Restful Legs" wouldn't even help. Sometimes I think it will drive me mad.
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.
Sometimes I think it will drive me mad.