Newbie here, possibly with RLS?

[Yellman]

Hi all,

Glad I found what could be a very valuable resource. Basically I (25, male) have had a problem with my knee for a few years now and despite visits to doctors, chiropractors, physios and various scans - xrays and MRI nobody can tell me what is wrong.

I just get the incredible urge to move my knee especially at bed time, its like I have got something living at the back of knee cap and it is so bloody frustrating! It started years ago that it was just occasional in bed, then progressed to almost every night to a stage now where it is every night and now if I sit for any time. The only way I can cure it is with codeine and that is not really something I want to get dependent on, as you can imagine.

I believe that RLS would explain a lot but have not been diagnosed with it, I just which I could relax at night. I can just about cope with it during the day if I am doing something else - such as typing this. But come time to get to sleep I just can't block it out.

Anyway just thought I would say hi and now will have a look around the forum.

[ctravel12]

Hi Yellman and welcome to this site. On the forum you are now on New to RLS look at the sticky post "Managing RLS" as there is a fountain of information and may answer some of your questions.

There two other good sites to read www.rlshelp.org and www.wemove.org

These are really worth reading. Reading alot of info is so important.

Please keep us posted on how you are doing.

I hope this of some help to you.

[Aiken]

Yellman--

Well, to me, that sure sounds like a classic RLS description. It's not impossible for it to be something else, but you could easily put most of our names on your post. I think you'll see what I mean as you read more of the forums.

If it's RLS, and if it's begun to ruin your quality of life, it's time to start taking action. You'll find some common advice for all people on these forums: consult a neurologist who bills himself as a sleep and/or movement disorder specialist and who keeps current on RLS, and take the Maya clinic treatment algorithm with you; check and improve ferritin levels to 100+; make some dietary adjustments (e.g. caffiene, sugar, dairy) at certain times of day; etc. There's way more than I can summarize here.

Good luck, and keep us posted on the details. The more we hear about what you try, the more we may be able to offer you, or even learn from you.

[Sojourner]

Hi Y, Welcome. Lots of good reading and info here. Hope it is helpful. Keep us informed of the "plan."

M.

[mackjergens]

hello yellman and welcome to the group. The very best advise you can recieve is to read and educate yourself on all he pros/cons of RLS, before you see a Dr. RLS is just becoming known in the medical world and sooo many Drs, still know so very little about it.

You will find a list of meds known to make RLS worse, such as antihistimines, cough syrups, allergery meds and OTC sleep meds such as Tylenol PM and others, all have antihistimines in them, Benadryl can also make rls worse all tho many Drs will recommended it to help in the sleep dept. without knowing it can and will ,make rls worse for MoSt(not all).

Certain foods also will increase rls in many RLSer's such as ice cream, yes I know how strange that sounds, but for many of us, ice cream in a no-no.

The more you read and educate yourself about RLS the better treatment you will be able to get for yourself, that also might mean having to try several Drs and meds before you find the right one for you.

There is so much great rls info on the web, starting right here on the sight with the "Sticky notes" you can find the info about drugs used to treat and drugs/foods to stay away from on www.rlshelp.org I suggest you print out these list and keep them with you at all times, so when a Dr prescribes a med for you, for even the flu you can check to see if its one that can increase your rls.

Good luck and keep up posted. Lots of reading ahead of you.

[Yellman]

Thank you all for your kind welcome.

Yes I do have a lot of reading to do!! I see most of you stay in the US however I reside in the UK but I'm sure that ain't going to matter - the same principles apply but meds and docs may be different.

The first thing I am going to try and do is get into a regular pattern around bed time to see if that can help any. And try the idea of doing something to occupy my mind when I feel the onset, i.e. playing game on mobile phone.

[Polar Bear]

Hi Yellman, I live in the UK. My doc was unfamiliar with rls. I took the Mayo Algorithm with me and he took heed of it. He is very willing to work with me. I was referred to a neuro consultant who said he knew very little about it, and just told me and gp to work using the mayo algorithm. An agreeable gp is most important.

Good luck.

[Yellman]

just a quick update.

Have been prescribed ropinirole from the doctors and it does seem to have led to an improvement. I am now able to sleep through the night, although I still get the sensation but to nowhere near the stage as it was at before.

[Polar Bear]

Hi Yellman, glad you are getting some relief, and some sleepl

I have rls 24/7 and also take ropinerole.

[DARCYUK]

Hi Yellman, I also am in UK, and have been diagnosed with severe RLS just over 6 mths ago, sounds as if your doc is familiar with the symptoms, as he has prescribed ropinirole (which I also take), and has eased your symptoms from the sound of it. Half the battle with RLS is finding a GP who has knowledge of the condition and is sympathetic to the effects it can have on your life. A belated welcome to 'The Family', we all know what you have been through to a greater extent, and offer all the help and understanding we can give, keep us posted my friend!