New to Forum...not sure if I have RLS and advice would be great.

[pumpkinmum]

I am wondering if anyone on this forum can help as I am not sure whether I have RLS. I initially thought it was something like Benign Fasiculation Syndrome but am not sure. I've had pains in my right leg that have come and gone since I was a child (am now mid-forties) and was told they were growing pains. However, about 5 years ago the twitching in my calf muscles and pins and needles in my leg was non-stop. The twitching is constant and less noticeable during the day when I am moving but at night I feel my leg is being wound up like a coil then it suddenly springs, then that slow winding feeling starts again (I don't get this during the day). The next day my leg is left with a constant dull ache and what I can only describe as a buzzing feeling. I have tried Gabapentin and Amitriptyline, neither of which agreed with me, and I then went on to Clonazepam for a long period of time which really screwed with my head. I successfully ditched them eventually and am now just taking co-codamol at night which although does help with the pain, can't take away the sensations that keep me awake. My doc prescribed Quinine to me but after doing some research I decided not to take it. I have now pestered him to put me back into the system again, although he said there wasn't any point, and have an appointment in Jan at Neurology. Although docs do hate when you 'self-diagnose' I feel I have to do a lot of the research myself as no-one seems to take this seriously. I realise there are a lot of life-threatening illnesses out there to deal with before me but I'm finding it hard to maintain a normal lifestyle and stay awake to pick up kids from school etc and am awake for long periods at night. Sorry for the length of message - I'd appreciate any feedback as to whether I'm either completely wrong in thinking it may be something like RLS or whether these are the kind of symptoms that can be experienced. Thank you

[peterk]

Hi Pumpkinmum

I just answered this and lost my long reply. Yes you could have RLS. Look at WWW.rls-uk.org and ww.rls.help.org. Meds you seem not to have tried include ropinerole, pramipexole, the longer acting versions of these, rotigotine. I can't take these meds. If you have pain there is tramadol and oxycontin. I take these. You can have faciculations with RLS as I have and mine was confused with Benign fasciculation syndrome. However RLS is worse. Have a look at the criteria. Hope I have been of help. You will find support on here. I have RLS so badly it interferes with my life as it does many. You may need to push hard with your neurologist as many wrongly dismiss it. It's a nasty debilitating illness. You will find support on here.

[pumpkinmum in reply to peterk]

Thanks peterk, that is useful and I will look at those websites. Interesting to hear you also have the twitching. I will also have a look at those other drugs so that I can go with full knowledge to the Neurologist. Am sorry to hear it is affecting you so badly - I have read some of the blogs here and realise how awful it can be. I find mine difficult, painful and frustrating but I'm not at the intense level others are suffering. It's just good to be able to discuss with someone who understands what I am experiencing! Appreciate it.

[nightdancer]

Hi! Nice sharing, peterk!

It definitely sounds as if you have RLS. "buzzing", "coiled up like a spring", sounds very familiar. Definitely check out the treatment page on rlshelp.org, and see the list of meds to avoid and to use. Avoid- Quinine and Amitriptyline, for starters. The AMI is a tricyclic antidepressant that can actually cause RLS and/or make it worse. When I was on that, I had the worst RLS of my life, and it got ugly. 99% of people with rLS cannot take that class of meds, and you will see a lot more on that web site. Quinine is only to be used for malaria in the US, so you are smart to not go on that. Besides , it is for muscle cramps, which are muscular. RLS is neurological. You really have to question everything when it comes to RLS, and do your own research, because obviously from many posts here, the doctors are not going do it, at least a sorry % of them.