How can I get my doctor to understand just how severe my RLS IS?

[Twitch1972]

I am currently seeing a pain management doctor. I was referred to him by my family doctor because of the high dose of Tramadol I need in order to find relief. (I take 2 50 mg tablets 3 to 4 times daily). He is great about prescribing it to me and listens to me about what my symptoms are but then he asks about my back (My job requires me to lift very heavy items for most of my 8-12 hour workdays and I have some lower back issues). But my back isn't why I see him. I see him because of the severe, 24/7, full body RLS. I would like to feel as if he is a concerned about the RLS as his is about my back. I know why I have back pain. I don't know why I have RLS and why it's progressively is getting worse and I don't know what I'm going to do when the Tramadol stops working. I am getting less and less relief from it and it really scares me. Sorry about the rant and if you made it this far, thanks I'm just very nervous about what I'm supposed to do and I need advise on what to say to get him to understand that. And changing doctors isn't an option at this point. Plus, I really do like him. Just not his lack of communication with me about this.

[Hidden]

Its hard to get through to some doctors on how you are feeling and how RLS really affects your life. Do, you really tell him exactly how RLS is impacting your life, rather than just telling him what your symptoms are. And rant away, we do understand.

[spike28 in reply to Hidden]

Try making a sleep dairy aswell i found that help me a lot with my doctor

[Goodfairy in reply to Hidden]

Hi.goodfairy here.

My husband fed up trying to get Dr.to understand the impact that RLShas on his life.

They havent a clue and getting impatient with him.

He needs to come off ropinirole but doesnt know what to use as a substitute?he.s tried lots of things.

[Annieapple]

You have to be very pro -active & when he asks about your back thank him for his interest but say "My RLS is my main concern & it is getting progressively worse & affecting my every day life. Please may I be referred to a Neurologist"

There is a lot of helpful treatment out there besides Tramadol & with RLS we sometimes need to have a holiday from one drug for a while & switch to another. However a Neurologist will rule out any other associated problems & treat you correctly.

[Mundesley]

Yes, I only got better treatment and relief after I saw a neurologist although a locum doctor did request a blood test as low iron is often a contributory cause. I now take iron and ropinorole patches

[Rubylane25]

I agree I went to our sleep disorder clinic which is run by our top neurologist. Because most of his patients suffer from RLS and Parkinson disease and he has heard story after story of people suffering severely with RLS he totally understood and treated my condition very seriously. I too have it all over my body.

[Walnut32]

Explaining RLS problems to doctors and people geneally I tell them it is not RLS itself that is the problem--that kicking of limbs is, yes, unpleasant--but that the real problem is sleep deprivation, and that I am not so sick with RLS but am tortured by its effects. For several weeks the most sleep I got was four hours on a Saturday afternoon, but now with change of meds I am doing better. Twitch 1972, you don't say in your posting what your signs, effects of RLS are. In my case I emphasize RLS is nothing but being seriously sleep-deprived is torture. Maybe you need to drill your doctor on how RLS ruins your life.

[Hidden]

I also had big big problems to make my pain doctor understanding.

I gave him papers after papers with information.

Finally I recorded a video with my iPhone one night when my body was like a windmill both arms and legs jerking. It is just 46 sec. He saw it and became very qiuet for a while, then he said that he just could not imagine that it could be THAT terrible!

Last Friday I got the internal morphine pump, now we just have some dose adjustments to do, probably OK in the end of january.

[Twitch1972]

I've never been much of a sleeper anyway so it affects me physically more than sleep wise.

But my symptoms in my legs are the restlessness that feels like I have to walk, stomp, and stretch them. My calves and the front of my thighs get really weak. Then I start having stabbing pain in my feet and throughout my legs. My legs shake from the weakness. I also get a really heavy, uncomfortable feeling in my left leg. The best way to describe it is it feels like my leg is opened at my hip and someone is steadily pouring hot sand into it. I also get a heavy (not the same as my leg) feeling in the backs of bith of my upper arms along with the restlessness. And the restlessness in my chest and chin.

I've gone to my doctor in the middle of a bad episode but I'm so used to it that I can pretty much not show outward symptoms other than shaking my legs and arms. He noticed but the only additional comments he had was that I could have some nerve damage in my lower spine and that when we need to I can go to a stronger medicine.

I guess I'm frustrated because I want options other than medicine and I want him to find those options. Although I know there really aren't any other options for me at this point.

And the reason I'm on tramadol is because I have had severe reactions/side effects to a lot of the other medicines used to treat this.

Things like Valium and Xanax and any sleeping pills make it so much worse and also negates the tramadol from working. And I've tried gabbapentin, Lyrica, Baclofen, Cymbalta and several others with absolutely no relief whatsoever. I've tried mirapex and requip and they both make me vomit all night and feel like my skin is on fire.

[solticeart in reply to Twitch1972]

Have you read anything about methadone? I was on it for 18 years and got the rls bad after going off it almost a year ago but one of the treatments for rls is methadone if you can find a doctor to give it to you. You might ask him to look into that, I also couldn’t take the rls drugs as they make it worse so my doctor gave up and sent me to a neurologist. Ufortunately I couldn’t even get in to see him for 3 more months and I’d already gone 3 months with no sleep ( and hour or two a night is it)I could t work was in great pain, then I found kratom. It’s saved my life. It stops the rls but only last 4 hours so I still wake up at times and have to take more. When I did get in to see the neurologist he said he couldn’t really give me anything either but had heard good things about kratom and if that was working keep taking it! What kind of doctor does this? Says sorry nothing I can do suffer? Thank god I think my rls is better than it was. I don’t get it in my boday anymore just my right foot or mostly right leg, I do get it in both feet at times but rally both legs now. I also get that sand feeling! I described it as my leg filling up so it feels really heavy and stiff and I now get a bad ache sometimes in my leg or legs and feet sometimes too. It’s weird how it’s changed since I first got it. It went from classic rls type to weird sensations and pain and that filling feeling. I’m hoping it goes away eventually but I’d be happy if it was just intermittent, but a good pain pill to stop it that would last 8 hours would be great so I could really sleep a good night. I’m tired a lot and if not for the kratom I’d have no energy. ( the white vein kratom gives you energy and helps with depression and the red vein is for pain and relaxation) if you are in the US it’s legsl in some states and I buy it online. If you want to read more about it go to reddit and type in kratom then go to the kratom boards. They have a lot of info there and can help you. I buy it online from online sellers. It’s a cousin of the coffee plant and is dried and made into a powder and you drink it in a tea, put it in capsules or some take it by mouth straight and wash it down with water ..yuk. Good luck though. I can’t imagine Haiti g it all over like you do. I got it in my arms and torso for the first 3 months and it was pure torture.

[Hopeless100]

I often wonder what doctors think of us patients and RLS suffers. The get paid over a hundred thousand pounds a year as a salary, but often much much, more, of our taxes, so my view is that I own them, I am seeing a neurologist tomorrow after no luck with several RSL medications. I wonder what they think when on a drug works on one person and not on another, do they think people are not telling the truth to them and are cynical. I think if you make careful notes and don't allow yourself to get fobbed off, however I think their main interest is mainting their status and budget as they zip off to private clinics. On average a doctor gets paid about £800 pounds for a consultation, that often lasts about five minutes, so, if you are/were a taxpayer, take your time and get you moneys worth. Allways had RLS as did mum and dad, very mild, until a few years a go for me. Also have back pain, perhaps they go together.

PS Tramadol made me throw up right away.

[BevyAnn]

I had attacks so bad I could eventually only sleep maybe 2 hours, I was falling alseep driving home from work I was so tired. I had a sleep study and they said it was painful to watch me try to sleep the Dr. said I do not have sleep apnea but diagnosed restlessness and recommended a seizure control medicine

[Adamjohn]

My doctor blew it off. He said that I don't want to get messed up with drugs.

I told him to buzz off and I'm seeing another doctor. Do you just ask for the

drugs?