RLS in my upper body

[christmas1955]

I'm in spokane washington. I have RLS in my arms, shoulders and back. its unbearable. I am on methadone and flexarial. My Dr. tells me there is nothing else. From reading some of your posts, I will be seeking the help of a nuroligest from here on out. I'm so happy I fell across this foram.

[Hidden]

Hi, methadone usually works well for RLS. Altho i have no experience of it as its not available in the UK. But i do know from other RLS groups i belong to that you can become tolerant of it and some people have to come off it. I see you are taking a muscle relaxant. Muscle relaxants do not usually help with RLS and can actually make things worse. So, i am wondering if you can drop the muscle relaxant and maybe the methadone will work better.

[frances1 in reply to Hidden]

Hi I am on diazapam can this make RSL worse

[Hidden in reply to frances1]

No Diazapam is safe to take.

If you look at this website rlshelp.org and at the treatment page, you will see the list of what is used for RLS and lists of what to avoid which can make RLS worse for most of us.

[nightdancer in reply to frances1]

Diazepam/Valium usually is a big help, but it alone may not stop your RLS, usually used in combination with other meds. it is rare a person can take ONE med for RLS, usually has to be a cocktail, as in more than one med, for about 80% of us.

[frances1 in reply to nightdancer]

I take co codomal zopiclone diaazpam not all together I mix and match them them depending on the pain.

[Benzanax in reply to frances1]

It should help some

[Hidden]

Hi christmas1955 I too have it in my arms, shoulders and back and it is terrible - I always thought RLS in the legs was bad never knowing it would take over my whole body.

There is treatment advice on:

rlshelp.org

check treatment link on left side. You can also contacted the Dr on that site Doctor Buchfuhrer, he's big into correct grammar and no abbreviations so compose your email well!! I contacted him late Friday night and had a reply this morning and no cost!!! God bless him.

I am using a mix of the Neupro patch and Targinact, (oxycodone) with mostly good results but I do have bad nights and there is always that lingering restlessness in my body.

Can I ask what dos of methadone you are taking? I can't see it being prescribed in the UK or Ireland but I could see how it would work.

You could also look into Iron levels as low Iron can cause problems.

Take care.

[swede71535]

Have your iron checked. I needed. Infusions of iron.i take 1 mg of required in am and 2 at night. Sometimes I take .5 of klonopin at bedtime. No more rls. Iron was key

[nightdancer in reply to swede71535]

And, what you need to have checked is your ferritin level, not only an iron serum test. Ferritin levels show how your body STORES the iron. For ME and my experience, iron has not helped me at all, and I have had iron infusions, etc. We got my ferrtin level up to 142, and nothing. So, it did not work for me. And, as has been said you need to get the blood tests first, do not just run out and buy iron because someone says so..

[nightdancer]

have you tried everything else, so is that why your doctor is saying there is nothing else? Because there sure is! I also noticed that you are taking flexeril. Muscle relaxers will usually make RLS worse, RLS is not muscular, it is neurological. If your doc is giving Flexeril to you for RLS, he is not paying attention.

[Evalina1]

Good luck, I have the same problem and take ropenerole. Neurologist did nothing. My family Dr put me on meds

[SLMCP]

HI there, I get it in my arms sometimes, not as much as my legs, but it is worrying. My (great!) neurologist has said 'it's nothing to worry about'................. great! Welcome, and I hope you get some help on line.

[RennyP in reply to SLMCP]

Your neurologist said 'its nothing to worry about'? He's obviously never had to suffer from it then!! If I were you I would dump your neurologist ASAP, it must be one of the worst things to have to suffer from that I can think of, it's horrible! I am a type 1 diabetic and have only had the RLS since I got diabetes so it obviously has come as a 'bonus' with the diabetes (like I need one!). Just wondering is there are any other diabetics who have got RLS since being dignosed?

[RennyP]

Only just saw that this post is two years old....I think I'm a bit late here! My apologies.

[ziggypiggy]

I just came across this post when googling RLS Spokane. I too am in Spokane and was looking into starting a local support group. I know its been 8 years since this post. Hope tour RLS is well treated now.