Help for a new sufferer : Going to the... - Restless Legs Syn...

Restless Legs Syndrome

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Help for a new sufferer

Daniellemiller profile image
8 Replies

Going to the GPs tomorrow for first time about my RLS.

(I'm in the UK)

What's the best drug to stop it?

Medications I currently take are 60mg fluoxetine (just increased from 40mg)

Is my gp likely to give me something or refer me to somewhere else?

I have to move my legs about ever 4 seconds because the intense pain gets stronger and stronger until I do!!!!

Please help.

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Daniellemiller profile image
Daniellemiller
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8 Replies

Hi there.

Sorry to hear that you think you have RLS, it can be a very nasty condition.

The first thing to do is have it confirmed that you do have RLS. Certainly, it sounds is you have with the need to keep moving, but from what you say it's not definite.

Follow the link below to read the diagnostic criteria for RLS. Note that your symptoms must fit ALL the criteria. All other possible explanations for your symptoms must be eliminated for a RLS diagnosis. Your pain could well be something else.

irlssg.org/diagnostic-crite...

Assuming that your doctor thinks you have RLS he/she might try to manage it themself or refer you to a neurologist.

Hopefully the GP will do some blood tests to see if there is any underling condition causing the symptoms, this could include tests for iron deficiency anaemia or diabetes. A blood test for Ferritin is important.

If you do have RLS, then it may be that something is triggering it. One thing that makes RLS worse is some antidepressants. These include tricyclic and SSRI antidepressants. Fluoxetine is an SSRI, hence may be worsening RLS. If yiu do have LS you will have to consider stopping it.

I have to forewarn you that most GPs are quite ignorant about RLS and how to manage it. There are UK national guidelines on its management, none of the GPs I've discussed my RLS with have read the guidelines.

Below is a link to the guidelines. As you read down you will see a section identifying first line drugs. There are two main classes, dopamine agonists and alpha2delta ligands.

If your GP does think you have RLS and does prescribe something, then chances are they will prescribe a dopamine agonist. If so they may also fail to warn you about the long term consequences of taking a dopamine agonist. (DA). These are mentioned in the guidelines.

You will find many stories on this site from people who've taken a DA, including myself. I would advise you NOT to take Pramipexole, Ropinirole or Rotigotine (Neupro).

If it works for you Gabapentin or Pregabalin do not have the same, very nasty, consequences as a DA.

Here is the link

cks.nice.org.uk/restless-le...

I'm afraid there is no quick or ideal fix for RLS, if you have it. Doctors, even neurologists are not very knowledgeable about it. If you do have it, you need to find out as much as you can about it for yourself.

I keep writing "if" because from what you write, it may not be RLS.

Pain can make you want to move but athough some people experience it as pain, I never have.

I have neuropathic pain, but that's different. My urge to move has always simply been that.

Good luck with your GP. Hope you read this before you go.

Jelbea profile image
Jelbea

Hello Danielle - I see you are a new sufferer of this dreaded ailment. I am not as experienced as some on this forum who will give you more advice but I do know that fluoxetine can be the cause of restless legs. It is an SSRI antidepressant and most of these can cause RLS. When did your RLS start? Did it coincide with starting fluoxetine? If this is the case then you have an answer.

Others here will be able to advise you further. Take care

sgala profile image
sgala

Ayurvedic oil massage before going to bed, Acupressure also can give some relife

Heatherlss profile image
Heatherlss in reply tosgala

Name of the oil ? I read you got it from Gujarat ? I'm in New Delhi. Maybe I can get it too here.

sgala profile image
sgala in reply toHeatherlss

Sorry no name as someone come's and sell it to me as I am feeling better. I brought 6 months stock last month he said he is making from some plants in jungle as its making me feel better i dont care how he makes it as he will never tell his secreate

Heatherlss profile image
Heatherlss in reply tosgala

Did you ever take any med for your RLS ?

batesm0t3l profile image
batesm0t3l

Others on this forum will be able to give you recommendations on meds. I take Quetiapine an antipsychotic which causes my RLS. I use Coedine x6 30mg tablets a day and it stops my RLS, and my RLS was horrific. However, other people on here probably can recommend non addictive drugs to try first. If all else fails and your struggling to find a solution, try Coedine as a last resort.

BJamn profile image
BJamn

Don’t start Mirapex. Just don’t.

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