My GP has tried Citalapram for my RLS (I've previously had amytriptyline for neuropathy) both make me shake He hasn't tried anything else??

[evianfan]

He doesn't want to try my on the Parkinsons drugs as he says the side effects can be bad and he thinks I'm too young - what should I do?

[jumpylegs]

Doc obviously knows nothing about rls. Antidepressants generally are bad news for rls (but not always) and can make it worse.

If you go to the RLS Foundation web page www/rls.org they have an RLS MEDICAL BULLETIN which you can print off and take to your dr. There is also a leaflet on medications which you could print out. Your Dr needs educated in RLS.

[nightdancer]

I agree with the comments above. Amitriptyline (tricyclic antidepressant) and Celexa (SSRI antidepressant) are about the two worst classes of drugs that a doctor could give a person with RLS.

RLS is NOT to be treated wit antidepressants. he thinks the side effects of approved RLS meds are too much after giving you those two meds????? some people do have a hard time with their doctors getting the right meds prescribed, and it can be all trial and error finding the right one for you, but of he will not even prescribe meds for rLS that are approved for it, he has no idea what it is or how to treat it. 99% of the peole who take SSRI's or tricyclics will have a definite worsening of RLS symptoms. This is a fact. rlshelp.org-go to the treatment page. Under meds to use, there is a list of FOODS and DRUGS to AVOID. Your doctor really needs to read this stuff, and of he is not willing to look at the right things to treat you with, then you need a referral to a neurologist, or someone who may have a clue. You mentioned neuropathy. Why would he not try and treat that with Gabapentin, since that is what it is approved for-nerve pain and anticonvulsant that is use to treat RLS in some people. That med really helps a lot of people with nerve pain AND RLS, so you could kill 2 birds with one stone , if that med works for you. You need a different doctor.

You also said your doctor thinks you are too young for what? too young to take those meds, or too young to have RLS? The RLS meds should not be taken by kids under 16, usually. Many people have told me the same thing over the years, that the doctor said they are too young to have RLS. that is total BS. I have people in my groups with kids who are 12 and under that have RLS. My niece's kids are 5 and 8, and they have RLS. Mine started when I was 14. If one has Primary or inherited RLS, it means that someone passed the gene down to you. Other people could have low iron levels (Ferritin-how your body stores iron) has your doctor ever run a Ferritin blood test on you?

It is different from a regular iron serum test. Low Ferritin does NOT mean you are anemic, it means your body is not storing it correctly. NO ONE is to young to have RLS. I have had a couple of doctors like that, and they got "fired". I know in the UK , it is harder to swtch around, but there is no reason your doctor cannot send you to neurologist or a sleep doctor.

[evianfan in reply to nightdancer]

I am on Gabapentin for the diabetic neuropathy now - via amytriptyline & pregabalin - along with codeine & tramadol. He hasn't said I'm too young to have RLS as even my enocrinologist has said that I have it - related to the DN, he just doesn't want to start the Parkinsons drugs YET

[nightdancer in reply to evianfan]

I have to ask how old you are, Then I can find some studies and things to show your doctor, depending on yor age group. Parkinson's meds are not good to be used for people under 16, but that is the only age limitation I know, and there are exceptions to that. the Amitryptiline is doing you no favors for your RLS.

[nightdancer]

We are not ALL on Parkinson's drugs here. there are other classes of drugs to take also. I cannot take them at all, but we do not know unless we try them. But, don't say we are "all" on PD drugs, because it just is not so. :o) They, like any other med, are tolerated differently by different people.

[Hidden]

There are other meds, that can be used for RLS, not everyone is suited to the PD meds. Like nightdancer has said, gabapentin can be used for RLS. Alot of people get good results from that med. Then there are the pain killers, such as codeine or Tramadol, i wish i could take Tramadol, as alot of people get relief from that med. It probably has less side effects than the PD meds.

I agree with all that nightdancer has said...Listen to her, she is someone who has been helping sufferers of RLS for many years. Except the "firing" of doctors...lol. we cant do that here in the UK..

[evianfan in reply to Hidden]

In addition to my comment about the list of meds I'm already on - none of them provide very good relief for either the RLS or the DN - I'm still having symptoms & pain, despite being on maximum dosages of all 3. I'm even getting the RLS in my arms now.....

[nightdancer in reply to evianfan]

I have to say that the Amitryptiline is your problem, or part of it. The class of drugs that is in can be tracked to worsening RLS in many many people. I get it in my arms now, too, as do a lot of others, but if your are taking a med that is so well known to make RLS worse, that is my best advice to you, is to get off of that, after you talk to your doctor again. Your meds are working against each other, literally.

[Hidden]

It ok, we all have to learn about this condition as we go along and the meds which can be used...

Irene...

[Willow62]

After another period of struggling to get the pain under control & sitting in the dr's sobbing we came up with a plan. Carry on wiv sinemet go back to df118 s/r 60mg- 90mg & upping my amitriptyline to 50mg @ night also taking reg parcetamol & brufe. 3 week on & my amitriptyline is up to 45mg I only now take 60mg of df118 plus sinemet, have dropped the paracetamol & brufen & now SLEEP all night from 10pm to 8am or on if I don't have to get up. I use to wake in the night in pain haveing to top everything up also taking more sinemet around 6am. Upping the amitiprityling was the best thing for me as I'm now having the best night sleep in so many year.

[jumpylegs in reply to Willow62]

It's wonderful that you are now sleeping - just a couple of points to bear in mind.

Sinemet has a high augmentation record if you take it more than a couple of times each week. Also amitriptyline is noted for aggravating rls although it is also wonderful for sleep. If the amitriptyline is not annoying you ... then well done.

Personally paracaetamol and brufen would not help me with rls.

[nightdancer in reply to Willow62]

then you are very lucky to be able to take the Amitripyline. That is so rare that it does make things worse. Like we all say, we are all different, but I still have to advise evianfan against using it when his/her RLS is so bad right now and worsening. That would be the first thing Dr. B would say is to get off the tricyclic antidepressant.

[nightdancer in reply to nightdancer]

I meant it is so rare when it DOESN'T make RLS worse. :o)

[evianfan]

just for clarification - I was first given amytriptyline about 18 months ago for diabetic neuropathy - which made my whole bady shake - terrible drug. So, doc knows this is not an option for me....the citalopram was given 2 months ago - I've stopped that too...going to see GP on Wednesday - I'm going to tell him he has to prescribe a different class of drug

[belisinski]

This is my first time I have put anything in writing but I thought I would tell you about my medications. I was prescribed Amitriptyline many years ago, not for depression, but because it worked with some people who had sciatc pain. and it did help me.. However a few years later, I was prescribed Madopar (which is a Parkinsons drug) for RLS and so have been taking this drug also at night for possibly 15 years. I was never warned about side effects and cant say I have experienced any.

[nightdancer]

First of all there is no such thing as too young unless you are under 12! I agree with the idea of Parkinson's meds, but at LOW doses, they do help some people. But the anti-d's he is putting you on is only going to make it worse! see the treatment page on rlshelp.org