Severe RLS/PLMD, nothing is working

[mom2]

My blood work for everything that you can think of came back all normal. My iron levels were normal, but with RLS they wanted it a little higher. I have a thyroid condition, depression and anxiety. I have tried everything from medication, to homeopathic medicine, to medication and everything to relieve the RLS. The only thing that works when I do get them really bad is a nice HOT bath. My problem is that in the past I have a substance abuse history in my chart. Now, I wish I would of never have done that, because now I could really use something for when it gets extremely bad. I am talking about my lower legs are so achy and they throb I can't get walk some times. There are days where I am up for 3-4 days because i can't sleep. Almost, got into 3 accidents in one day in the mornings, because i was so out of it from no sleep. the legs are so achy and throbbing I can't sleep at night. I am a mother of 2 and a stay at home mom. We have a high deductible so I am trying to stay away from doctors because I know the outcome. There is nothing else they can do. I have seen a rheumatologist thinking it was fibromyalgia, it wasn't. I have seen a ortho. doctor they ordered MRI's nothing came back normal. What do I do? I am now on Gabapentin the highest I can go and tramadol 100mg 2x a day. We are planning a long trip over seas and there's no bath tubs, what am i going to do? Please help! I am bringing my soap bar along as well.

[Rustsmith]

I have several suggestions for you to consider.

First, you said that your iron levels were normal, but that they wanted them higher. The one to look at is ferritin. Normal for the general population is anything over 20. For RLS, that should be at least 50 and preferably a little bit higher than 100. Some people can raise this by taking iron sulfate and vitamin C on an empty stomach. But it takes time (weeks) to see an increase and possibly some improvement.

Second, since hot baths are working, have you tried a hot shower where the water hits you on the back of the neck or the back of your head and then runs down your legs? I was in a hotel last week that did not have a tub. I was able to get help by turning the water so that it was too hot (even for me) if I was close, but then leaned against the far side of the shower so that the water was hitting my legs. This allowed me to stretch the muscles in the back of my legs while also getting them heated by the water. And if the shower has a hand held nozzle, you can use it to spray just your legs. When I do this, I turn the heat to just below scalding hot and then move it around (front to back, top to bottom) to keep from getting a burn.

[ViewsAskew]

You might also try a heating pad if you have not. Or try stockings - some people find that the surgical stockings help and if they can't get those, they use the most constricting pantyhose (both men and women) they can find.

I take it you have tried one of the dopamine agonists - do you mind sharing what happens when you use this class - such as pramipexole or ropinerole?

[mom2]

The dopamine agonists did nothing at all and then the pramipexole I was up to the full amount I believe and it just wasn't taking the achy and throbbing away. It did help with the urge to move my legs though at night. I am it was like my arms i had to move and then my head. It was pretty bad. There are times where I actually slept in the bathtub and ran hot water every few hours. It was a nightmare,I was crying,etc. The antidepressants medications were making my RLS extremely bad. That is when my doctor said there was nothing I can do for you because I was on antidepressant medication and I was suppose to be on them, but took myself off of them because it was making my RLS better, but now my anxiety and depression aren't under control. I have also tried the patches which worked for so long and then I couldn't go up any further because I got sick on them.

[ViewsAskew]

There are some doctors who believe that if the dopamine agonists do not work, that it is not RLS/WED - they feel that even if they are not tolerated, they work 100% of the time. Given that it helped the urge to move, but not the pain, it seems possible multiple things are going on - which is why your doctor likely did all those tests! When you walk or move around, does the urge to move goes away? If it stops, does the pain and throbbing also go away?

RLS is so hard for people who have pain - so many conditions can mimic RLS, but it seems to me that the painful type is more difficult to distinguish from other possible causes. Many doctors are not up to the task of figuring it out. have you written to Dr Buchfuhrer? somno@verizon.net. He usually replies relatively quickly and he might be able to help you figure it out.

Which patches did you try?

[sleepdancer2]

I cannot begin to know the extent of your depression and anxiety or your need for meds. I'd never suggest someone stop a med that was saving their life or their sense of well being. What I do want to say I've talked to countless people on forums (including myself) whose depression and anxiety decreased when their sleep improved. Seems circular - what if the thing that gives you RLS and wrecks your sleep may not be so necessary if your sleep wasn't wrecked?

Don't know if it would be of any benefit to you or not - the results are mixed on here - but once I was off a problematic med my RLS became negligible and my PLMD quite manageable. It was not immediate complete success, but over time has enabled me to get decent sleep and I haven't had a truly agonizing night in a few years. Not saying they're perfect, but so much better.

BTW, did your doctor do a sonogram to check your circulation? Some of what you describe is different from descriptions heard most often. Doesn't mean much, just wondering if all possibilities have been explored. Good luck with all this.

[mom2]

No, all the doctors that I have seen say it's RLS, that is the neurologist, rheumatologist, ortho, etc. The problem is that when I get the achy and throbbing really bad they say it's not a symptom of RLS, but no one can find anything wrong. It's like I have a high deductible and I am afraid if I go and see another doctor or specialist they are going to say the same thing and there goes another $400 down the drain. I even had one doctor say to have a drink or two to help sleep at night for the achy and throbbing. So sometimes I do that. I don't EVEN drink. I hate it.

Maybe I should get an EMG done, which is funny now that I think of it because my neurologist said nothing of it and that my neuro exam came out just fine and there's no reason to do one, now he says, "oh, if you are having pain which I don't call it pain it's more like extreme achy and throbbing in my lower legs, which he knew about, it will be a good idea to do an EMG, now is he doing it because he wants the money now or why didn't he do it last year when I had better insurance, i tell ya, doctors!

[ViewsAskew]

I understand about the deductibles! I just received new insurance and for the first time in years have a smaller deductible and I feel as if a weight has been lifted.

I honestly am not sure of the best way to figure it out, but as with sleepdancer2, I really wonder if there isn't something else going on. Do write to Dr. Buchfuhrer as mentioned above. He might be able to best direct you.