How where you diagnosed and what was the initial treatment?

From the information we can gather, my wife suffers from moderate/severe RLS, which has recently spread into her arms and does not allow her much (if any) sleep.

I say, from the information we can gather, as we have not yet received an official diagnosis nor advice on how to treat/alleviate the symptoms from our doctor. So far, her present discomfort is being investigated as despression but it has been associated to arthritis, curved spine, funny feet development, bad posture and a couple of others i cant remember. It seems has though the doctors haven't really got a clue.

I was wondering if anyone else had a similar experience and what they did in order to get a diagnosis and what treatment did they start on? If anyone has any advice in what we should do in order to help our current doctor out or suggestions as to how to help my wife, that would be great too.

Thanks for your time

14 Replies

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  • I was diagnosed and treated thanks to my wife. She had had enough of my very loud snoring and insisted that I see my GP. He was excellent and immediately referred me to the Sleep Clinic nearest me. After a night's sleep being wired up to all sorts of sensors, they were able to diagnose sleep apnoea (treated by a CPAP machine) and RLS (which I've had since boyhood but didn't know it had a bame). The latter condition was treated by Mirapexine which worked for me. Read the entries on this site and the RLS-help one lfor more info as you wife does not seem alone in having a doctor ignorant of RLS and its treatment, My best advice is demand a referral to a sleep disorder clinic: they are experts in the field. Best wishes, Tpebop.

  • I went to my doctor and told them I had restless leg syndrome. The doctor I saw just accepted it. She asked me a few questions but at no time did she question my diagnosis. I knew what it was because my mum has it. Maybe I was just lucky with my GP. I know from reading this that many are not.

    Good luck.

  • I also told my doctor i had RLS, i knew that the symptoms i had was RLS.

    RLS can cause depression, not depression causes RLS.

    I dont know if your wifes other ailments could be causing RLS.

    A sleep study is a good idea to ask for, it will show if any other sleep issues are going on, but a sleep study does not diagnose RLS, There is no test for RLS, only by telling your doctor the symptoms and how they are disturbing sleep at night can a doctor know you have RLS.

    Find out information on RLS, and if you can print it off to take to the doctor.

    Some people find they have to educate their doctor on RLS, even in this day and age.

    As regards medication for RLS, the first ones most doctor give to try as they have been approved for the condtion, are Ropinerole, Pramipexole and depending which country you live in the Neupro Patch.

    Also check that if she is taking any meds. for her other conditions that might be actually causing the RLS.. Some medication can actually start RLS off...

    A good website to check that out and also you can e-mail the doctor on that site and ask about her medication (if she is taking any) causing RLS.

    rlshelp.org

  • same here really, my mum had rls, so as soon as mine started, we know what it was, i put up with it for a few years, then went to my doctor when it got to much,i printed of a load of stuff from internet, on the advice of 2 good friends i met on here, and my doctor agreed and we took it from there really. I hope you get some help and support from you doctor,

    jean

  • Hello and sorry your wife is struggling.

    I knew I had rls because both my parents have it and luckily I have a GP who is quite "switched on" about such things. My understanding is that a lot of the meds available for rls have to be prescribed by a neurologist - certainly my GP told me he wasn't allowed to prescribe Clonezepam (which works for my Mum) because, in the UK it is not licenced for rls. But when I went to him in desperation recently, he prescribed Oromorph solution which I can take as and when needed and for me it has been brilliant. I was a bit nervous about it at first and waited until my legs and arms started before I took it, but now I take it early evening and again at bedtime and it gives me good relief. It may only be a short term solution but something like this might help to tide your wife over until she can get some specialist help. I also found that codeine 30 mg tabs helped - I was taking them for pain associated with another condition but realised when I stopped them, how much they had been helping the rls. But codeine is very addictive and caused me horrible stomach pains so I wouldn't choose to used it again.

    Really hope your wife gets some help soon.

    Tillyx

  • I'm in the UK and clonazepam was my GPs first suggestion for RLS. In fact I recall her exact words were "this is the only medication that works for RLS". This was before Requip came on the scene but it didn't work for me anyway. I can't understand your doctor saying this. Maybe you're just unlucky. Perhaps you should try another GP. I can't understand them not being willing to give you clonazepam but happily giving you morphine. It doesn't sound right to me.

  • I was giving Oramorph for my RLS, along time ago now, i cant remember whether it worked for me, all i do know is it made me extremely sleepy the next day and i came off it.

  • I also went to my GP and told him I had RLS. He was quite willing to admit that he knew little about it and that I was much more RLS aware than he was. I had taken with me information printed off from the RLS Foundation Homesite. rlshelp.org as previously mentioned above. I highlighted the relevant parts so that he didn't have to wade through everything. Remember also, that your wife's ferritin level is important, espectially if she is prescribed with a DA such as requip/ropinerole. This is not done with routine blood work and needs to be requested. A lab may say that a level of 20 is ok, but this is not so for a sufferer of RLS. Ferritin should be up around 100 if you wish to use a DA medication.

    I have also found codeine 30mg to be very useful to cover any 'breakthrough' symptoms.

  • Also does your wife's symptoms fit the criteria required for the diagnosis of rls. Symptoms start at night, or get worse at night, movement helps the symptoms, and also the urge to move cannot be ignored.

  • So many of us have been through the same exact situation. I "fired" many doctors" because I knew I had RLS, whether they did or not. Now, I have a good sleep doctor and a neurologist, plus my GP is on top of things. It took over 10 yrs to get a team like that together, after finding what RLS was in 1997 by getting my frst computer. Tramadol was the first med I was tried on, and that worked great for a while. rlshelp.org is one of the best web sites if you go to the treatment page. You will find all kinds of help there, for sure.

  • Hi Nightdancer.

    I hope you don't mind my asking this but you seem so clued up on all the treatments and symptoms but what country do you live in. I'm in the UK and certain drugs you suggest I've never heard of or are under a different name. Also many drugs that I read about on this site are only available in the US.

    Thanks

  • Hi Maggzzz, I know nightdancer as i belong to some of her other support groups that she manages and moderates. Yes, she is from the US. and yes she is clued up on meds, and RLS.

    I am also in the UK, can i help with what meds you find are not used here in the UK...

  • What are her other support groups. I would very much like to join. I only came across this site a few weeks ago when I was bored at work(!!) and it's been a big help already. It's less about the drugs and more about not feeling so alone in this.

  • If she doesnt look on here and see your post, i will contact her for you...

    Yes, this group is helpful in all ways.

    I have found by belonging to other groups, there are many many people who suffer and dont know which way to turn. I try to give my support on all the groups i belong to.

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