I need help ☹️: Hi, I’m a new member... - Restless Legs Syn...

Restless Legs Syndrome
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I need help ☹️

Hi, I’m a new member and have been suffering with RLS since childhood, I’m now 42 and I honestly think it can’t get worse than this. My symptoms were only in my legs up until about two years ago and then it spread to my arms too. It affects every bloody inch of my life!! I have always tried to stay away from drugs for treatment but am now in such a desperate state that I know this is no longer an option. I feel lost, I have a new GP but as of yet haven’t visited as I’m afraid he/she will be unaware of the condition as my last GP was and this may tip me over the edge! My question is what are people’s experiences with synthetic dopamine and also is there a specialist in the uk who I could maybe contact for advice/treatment?

Thankyou in Advance

Amanda

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Welcome. The question is, what changed for you two years ago?

What medications are you on for other symptoms? Antihistamines and antidepressants can trigger rls.

Many foods and drinks can do the same.

You could look closely at your lifestyle and see if anything is affecting you.

Dopamines would be the first line medication, after addressing the above.

Before foing that, though, it would be worth getting your ferritin level checked- it should be over 75 and hopefully nearer 100. Get the actual number. Don't accept "normal"😁

I presume you have had other possibilities checked, such as peripheral neuropathy, and other issues I'd prefer not to mention.

Come back to us when you have looked at those.

Cheers.

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Hello and welcome

I would suggest trying to see a change of GP as a positive rather than a negative. It's unlikely they will know anything much about RLS (very rare a GP does unfortunately as is not part of GP training in the UK) but they make take a different approach. You say you have had RLS since childhood but have you had your diagnosis/symptoms reviewed by a neurologist or sleep specialist in recent years? If not, I would suggest you describe your symptoms to your GP and ask for a neurology referral. As Madlegs suggests, it could be PN, but you need to have that checked out and, if it is a worsening of RLS, you need to see a specialist. Finding someone good in the UK is another matter. I haven't come across any UK experts yet. But there are sleep clinics around the country.

I would say be wary of synthetic dopamine (ropinirole, pramipexole, neupro patch) - a search on this forum will make you are aware that although many people benefit initially, sooner or later they get augmentation (worsening of symptoms) and withdrawal is hell. They also have a risk of life changing side effects at higher doses. So certainly be wary if a GP who knows little about RLS tries to prescribe them.

As well as all the triggers Madlegs refers to, stress may also be a trigger. We can then get stuck in a vicious cycle of being stressed because we are unwell, and symptoms getting worse because we are stressed. It is hard to find a way out of that, and very hard to make changes to your diet etc when so exhausted by it all. Like you, I'd much prefer to be drug free but I don't think it's going to work.

Just looking at the supplements I have lined up in front of me I am trying for PLMS...calcium, magnesium, l-tyrosine, 5htp, glucosamine, vitamin B complex. Then there are the ones in the cupboard I tried with no effect...iron, vitamin C (btw I had an iron infusion because my ferritin levels were really low but it didn't fix my symptoms), potassium, vitamin D complex, melatonin, valerian, niacin, zinc, chromium, wild lettuce(?!). Which makes me question whether the supplement industry is not just as bad as big pharma!

Good luck.

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Hello Amanda, welcome.

No doctor is trained in RLS, not until they specialize. and often not then either - many neurologists are equally clueless, as many posts on this site will tell you.

But do not despair, and accept the fact that you will have to be the specialist yourself, and your own best advocate.

This means that you will have to read and read and study and study - until you understand as much as you possibly can about the condition.

I, like many RLS sufferers, was in complete despair until I decided to take matters into my own hands after the truths that I relate above became clear to me.

My GP is now my best ally. I take information to him in the form of scientific papers and articles - lots of them - and he reads them and acts upon them. Talking is insufficient for a medical doctor - he will not feel he can act unless he is given a proper scientific background, which is professionally correct.

As a result of this teamwork, we have corrected my iron levels with IV infusions and discovered, after trial and error, a drug regimen that works for me.

The best single thing I did was to become a member of the Restless Legs Syndrome Foundation, which contains many articles and lectures from the top RLS specialists on the planet. I suggest you consider doing the same.

Be assured that research continues and that the mysteries of RLS are slowly but surely being unravelled. There is hope, but you must not sit and wait - you have to become informed and it is hard work.

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A number of people have been finding recently that changing their diet helps. This is something which you could do without a doctor, and the biggest side effect is that your figure might improve. The diets that seem to work are ketogenic like 'low carb', 'paleo', 'fodmap'. You may be sensitive to a psrticular chemical like a food additive as well, but finding the culprit is difficult without first finding whether the ketogenic diet helps.

This has worked for me and I've only suffered mild symptoms a handful of times in the last few months, usually when I'e let the diet slip close to bedtime.

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I have had RLS for years and I have been on pramipexole small dose not very good I went back to the doctor's and she sent me to see a neurologist she checked me all over asked me what tablets and I told her pramipexole. her reply was not to take them just wastof time small dose now she has put me on 1 at 9 in morning 1 at 15 00 and 1 at 21 hrs very good at moment good night's sleep most of time all the best to you XX. Henshaw241241

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