I have had enough

[TEAH35]

Hello all. this is my first post and I am fairly sure that I suffer from RLS. it keeps me awake every night but all the doctors say that it is not that important and I should just try to relax more. sometimes I feel I am going mad especially tonight when I feel like I just want to end it all

[Hoffie]

Hello Grany, you need to make an appointment with a neurologist. There are many ways they can help you. There are medications, supplements and various other treatments. There are websites rls.org is one, that can help you. You don't have to suffer endlessly with this condition

[Hidden]

If you are feeling that bad, then please phone the Samaritans. Or talk to a family member on how you are feeling , a friend , anyone. Have your doctors actually said you have RLS. ? They should take it seriously, and help you. There are medications which they can give you to try.

[Bajatom]

I know how u fell. I've had many night I wish it was all over, but some how I get thru. For 20 years doctors told me it was my imagination. I was just too uptight. There are lots of meds to start with. But first eliminate triggers such as alcohol, caffeine, some medicines, lack of or too much exercise, sugar for some people. Kloonopin, very small doses only 3-4 nights a week worked for many years; Requip and mirapex, longtime standards made things worse; then only 300 mg gabapentin gave me relief for two years. Next I started Tramadol and it was awful. Dizzy, could not sleep at night or stay awake during day, and lost my appetite and got weaker and weaker. Now I am back to Relax vibrating pad and seems to be working. AXIM Corp has started trials in Israel using chewing gum with CBD oil and Gabapentin. A good neurologist or sleep doc should find something to help I. There will still be bad days/weeks/months. One such put me on hospital. Read read read. Treatment page at rlshelp.org.

[anthonyts3]

I too suffer from this and I mean suffer ! I am taking 1 mg of ropinirole. It does give me some relief . I can sleep most nights.i have taken gabapentin,pregablin, painpills, duloxetine. Taking b12 and vitamin D. The pain began to come back every night and worse after about 6 months. Then I tried something new.I must say I have never done drugs in my life , and I was talking to someone about canibis. At first I was against it. But I now use medical cannabis oil, I am turning 50 this yr and it's only because of the pain I went this route. But the difference is incredible. Trust me , It's worth trying. I realize people will be quick to criticize or be negative. Who cares ? The pain is real !! I don't know where you reside but it is legal for me here.

[FLAME43]

What a cruel response. He should read these forums to keep his mind open. Lack of knowledge is a big problem. see someone who listens and acts with empathy

[Graham3196]

To suggest that you just have to relax shows no attempt to understand what you are going through. Perhaps you are being too "brave" and you need to complain a lot more loudly!

I will send a personal Message with a list of some ideas for helping your RLS. You need to make sure that your problem really is RLS so you can be sure that the treatment is appropriate. The best website for information about this is on the list.

Cheers

Graham

[Bossy50]

Actually if you're in the UK then you can't just get an appt with a neurologist, your GP has to refer you. Secondly your GP is able to give you a diagnosis. If you have a GP who isn't knowledgeable about RLS then either change practice and find a sympathetic Doc or print off the leaflet for professionals from the RLS website and give it to your Doc and demand treatment. My GP didn't know much about it but he was open to learning and took the info in the leaflet on board and prescribed to me accordingly. In the meantime bathe in Epsom Salts before bed and if you can get over the counter Solpadeine (Codeine/paracetamol) that may help a lot. You must be very assertive with any Doctor who just dismisses you because as you now this condition is serious in terms of the effect it has on our lives. You could have relief immediately if you get a decent Doctor...good luck

[Barbara-Halverson74]

How about trying Co Q 10. No prescription needed. Recommended to me for leg cramps by a doctor when I started cholesterol med. I took 800 mg in the morning. It worked.

[Bossy50 in reply to Barbara-Halverson74]

Now that is so helpful..I just looked back on my letter from the Neurologist and he recommended Co Q 10 but I overlooked it and then last night I was at the chemist and nearly bought it. So 800mgs eh? Can you tell me how bad and frequent you got RLS before please ?

[Barbara-Halverson74 in reply to Bossy50]

I used to have it every night but I eventually decided to see if I still needed to take anything for it. I was able to stop with no problem.

[Bossy50 in reply to Barbara-Halverson74]

It is very expensive here in the UK...so you dont take it anymore and your RLS has gone !!!????

[Barbara-Halverson74 in reply to Bossy50]

It might have had something to do with the fact that I had to stop the cholesterol med due to effect on my liver.

[Twiggster]

I have been suffering with RLS for several years along with numbness and tingling in my feet. I recently read a study that was published July 6th of this year online by NIH that suggested that of 42 patients in the study all of them stated significant relief from symptoms after surgical decompression of the common and superficial fibular nerves. I know this does not apply to all who suffer but for anyone with neuropathy and RLS it is worth seeing a spinal specialist.

[sookie53]

I know how you feel believe me, please go see your Dr. and tell him don't ask tell him you would like to try pramipexole, I tell you it will be a miracle worker, wish you lots of luck and let me know how it goes

[involuntarydancer]

Rls is a pure torture - so difficult to live with and made more so because it is so poorly understood by the medical profession and the general public.

It can be tricky to treat but it is entirely possible for most people who suffer from it to live a relatively normal life.

You need to inform yourself very fully of the various treatment options, lifestyle choices, exacerbates (both pharmaceutical and non-pharmaceutical) etc. Then consult your doctor. Most doctors know very little about it and it can be difficult to get them to inform themselves or accept information from you - this is yet another hurdle for the unfortunate Rls sufferer. If nothing else you should get your GP to check your serum ferritin (get the actual figure - RLS sufferers should be looking to be over 100). Raising iron levels very often results in an improvement of symptoms. In the US Rls experts sometimes give intra venous iron as a form of treatment.

If all else fails, you can try Kratom. This is strictly for the desperate - it is illegal in the UK but can be ordered from Holland (if you are UK based - if you are in the states you can just go out and buy it). Most people who try it find it very effective when the awful crawlies strike and it has the great merit of not requiring a prescription. If you can access it you could also try cannabis. Some people find it effective.