RLS???

Hello all. Just stumbled across this page while desperately once again surching the net to find some anwsers. I've had what I think is RLS for as long as I can remember, I'm now 36. I've had one GP years ago say it's this and recently another flatly refuse it's anything of the sort. What I experience is a tingling feeling, like a spider crawling under my left knee cap and left elbow, literally inside the joint . At its worse I feel like poking a needle inside or doing anything possible to get rid of the feeling ! The only way I can stop it is to continue to move my legs and arms and to make the knee joint "pop" over and over until it stops. Sometimes sleeping on my stomach helps. Does this sound like RLS? What ever it is its driving me crazy!! Really hope someone might experience this and know what it is as it's really effecting my sleep. Many thanks for reading.

10 Replies

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  • Sorry forgot to add ots only at night or if I sit down . Absolutely no odd feeling if I'm walking around.

  • Read ny ''rant'' and then tell me if you want more information.

  • Hi Dani,

    From what you say it sounds like you do suffer with RLS.

    Here is a link taken from the RLS-UK website. It is a Symptom Checker: rls-uk.org/#!diagnosis/c98c

    The following is also taken from the RLS-UK website:

    A SINGLE-QUESTION FOR RAPID SCREENING

    The European journal or neurology reported a new single question for the rapid screening of RLS in the neurological clinical practice - "When you try to relax in the evening or sleep at night, do you ever have unpleasant, restless feelings in your legs that can be relieved by walking or movement?“. This question has 100% sensitivity and 96.8% specificity for the diagnosis of RLS.

    It is recommended that patients with RLS are given the following tests by their medical practitioner, as a minimum:

    •Serum ferritin: RLS is frequently associated with iron deficiency.

    •Renal function: RLS may be associated with renal failure.

    •Other investigations for underlying possible cause include fasting blood glucose, magnesium, TSH, vitamin B12 and folate.

    •If the neurological examination suggests an associated peripheral neuropathy or radiculopathy, electromyography and nerve conduction studies should be undertaken.

    There is also a section on the website entitled For Professionals which you may like to mention to your GP if you make an appointment.

    Kaarina

  • I take magnesium -l supplements. My RLS is MUCH better since starting it. Also, if I have any kind if alcohol it's must worse. I go in my hot tub and relax for about 20 minutes which also takes the symptoms away. good luck.

  • Yes I agree with Kaarina it does sound like RLS and Kaarina has provided some good information and links It is the URGE to move that is the crucial point, an urge that cannot be ignored, Looks like you have come to the right place Dani! !!....Pipps x

  • What you describe sounds like me 14 years ago. I'd had a close friend for over 40 years at the time who was a former teacher at Northwestern School of Medicine. I confided to her that I was at the end of my rope, if you understand what I mean. I had not slept in 8 days for more than a few minutes. Mind you this is a woman who had taught and practice medicine for over 40 years and she didn't actually know what was wrong with me. She was ready to have me committed to the lppney bin to stop suicidal thoughts. She had a friend who was also a doctor who had said the same thing I said and who had found a neurologist who treats only ''sleep disorders''

    We don't have a sleep disorder. If the legs would permit it we'd sleep like anyoun else.

    She asked what that friend was taking. It was Maripex, a synthetic version of the extract of Ergot, a fungus that grows on wet grain as a mold. I took .25 mg and slept 8 hours . The med has terrible mental side effects but lets yo sleep unmolested for the first time in years. from there you'll progress thru the maximum dose of Maripex and probably end up on time released ropinirole until it stops working and from there on you will take one opiate or another, probably codine based which is where you should have been all along.

    If you want to know the origin of this disorder just ask and I will go on too long just as I did this time. YES YOU HAVE RLS>

    Windwalker

  • Plenty of help here. Unfortunately you will need to take charge and be better informed than your GP. He will need to refer you to a specialist. Read RLS by Buchfuhrer, Hening etc. Hopefully a deficiency (iron, magnesium) will be a cause. You may find a trigger to avoid (spicy food, big meals, eating late, alcohol, any anti-depressant). If not there are medications: Gabapentin, Dopamine agonists, opiates such as Tramadol. Most have nasty side effects but are better than RLS. Big journey, but you will find something! Good luck!

  • I have tried every herbal, OTC, magnesium, iron, and even standing on my head. I would do it if it got rid of my symptoms. Go to sleep MD who is familiar with RLS. There are many meds to treat this syndrome.

    I subscribe to The RLS Foundation online news letter. Unfortunately, most of the cases are idiopathic. Meaning no real cause known. A small percentage of people with RLS have low Ferritn (iron) levels. Sadly most don't have a treatable cause so we are left with just treating the. Symptoms.

    I am on a patch called Neupro that I wear 24 hours. Expensive but works well. I believe if you find a good sleep medicine MD HE/she will get you on good regime.

    Good luck.

  • I have just started the same patch ,started it last Wednesday and since then I have slept every night no probs

  • Hello all and a huge thank you for taking the time to reply. I have seen another GP today who was great and agreed RLS , big sence of relief to actually to listened. I've been given pramipexole to take at night. I guess we will see how it goes! And yes please I would love some more information. I have several other problems that I don't know of they are related or not. Again thankyou

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