ADvice for next GP appointment

Hi all. I am due to see my GP next week and will be going asking for him to do something - ANYTHING to help with the RLS.

I've tried Mirapexin with poor results - augmentation and terrible side-effects. I've tried several anti-depressants which made the RLS worse and I've tried Tramadol which worked for years but became less useful so I stopped it last year. I've also tried Lyrica and Gabapentin over the years.

Anyone any advice at what direction I should be taken with my GP. Any and all suggestions welcome.

Many thanks.

[Pippins2]

Raffs have you tried the Neupro parch as it has the lowest rate of augmentation,its very rare with it? It is expensive so depending on your GP you may have a fight on your hands to get it prescribed,If refused ask for Neuro referral they will normally prescribe it.Sometimes a combination of meds work at low dose,even with a med that has stopped working eg low dose patch (1mg) and low dose Tramadol combined.Yes antidepressants are not good in general for RLS.Trazadone is safe may help with sleep.Have you tried Clonazepan? It is an add on med so again used in combination may help but by itself probably won't work.Get doc to check your ferratin iron needs to be over 70 for RLS sufferers.Do you take any other meds for anything else? Good luck , let us know how you go on ...Pipps

[Pippins2]

Oh and sometimescafter a good break Tramadol starts working again so maybe worth another go it you stopped it last year or Codeine

[Hidden in reply to Pippins2]

HI Pippins2. I am currently taking about 7.5g of Kratom every night its a Gods send and if I skip a night things get quite bad, if I skip two nights I'm rolling on the floor in agony and life becomes unbearable. I take co-codamol 15/500 x2 four times a day. I'm also doing a audio binaural beats type thing for RLS.

I'm being investigated for CFS at present and the RLS just makes things worse. The GP is quite reluctant to prescribe anything despite the fact that I have disc problems and went and stopped Tramadol by myself. I don't think he realises the seriousness of the whole thing

All bloods are checked and back good, I take a vit D supplement and every now and then I take some galfer just to keep things on the up. I have started a dairy and gluten free diet at the recommendation of another Dr, (that's just insult to injury :D).

Thanks for the reply

[nightdancer]

You can have withdrawals from that just like any opiate. The country where the tree grows, Thailand, has even outlawed it. It is a leaf that acts like morphine, but it is totally not regulated, and not approved for an use legally. just wanted to comment on that. Side effects can be really awful, and there are a lot of web sites for "kratom addiction", I am glad it is helping you, I really am. But, hallucinations, convulsions, and psychosis are just the tip of the iceberg for side effects. the problem it is "all natural" so people think it is "all safe". Please research this before you take it for too long. If Thailand has outlawed it, that tells me something. IF you cannot buy it in the country where the tree grows, or in the US or the UK, as well as most countries, that I a big warning. Just looking out for your welfare. I am not being critical, but there are all kinds of red flags for that and watch your dosing of that.

[Hidden in reply to nightdancer]

If you check erowid there is little evidence of problems by Kratom. Please read here:

erowid.org/plants/kratom/kr...

you are right it works on the opiod receptors and like all drugs is open to abuse. You will find that it is much safer than many prescribed drugs! There are many sites that will argue the pros or cons of anything depending on what they are trying to sell you!

It is fully legal in the UK and in most states in the US. I appreciate your concern but your facts seem out. If I google Kratom the first site I get is a wiki page then a user guide then UK purchasing.

Like cannabis Kratom cannot be controlled by the Pharmaceutical companies so legislation is brought against it.

As with all drugs I use whether I purchase them or are prescribed them I research them. As an aside with all the drugs I have used I have only ever had negative effects from legal and prescribed ones!

[nightdancer]

I remember the first time I googled it, the first web site that pops up is for kratom addcition, so that sends a strong warning to me anyway. Just be careful. Pippin is right on the tramadol. After a while, your body will kind of reset, and the tramadol may work for you again. It is a synthetic opiate and does not have all the dangers of an unregulated coffee leaf from Thailand. just concerned, that's all. maybe you could alternate Tramadol and kratom, but NEVER take them at the same time.

[Hidden in reply to nightdancer]

You are implying here that Tramadol is safer than Kratom but I am afraid that is not correct - the chance of over dose is much greater with Tramadol and it can cause seizures and many other very nasty side effects.

I appreciate that quality control may be better with big Pharmaceutical company drugs but I had researched my supplier and the drug before using as I said before I ingest any substance whether I purchase them or are prescribed them I research them. I also am very aware of why I use drugs - to treat physical as opposed to emotional pain!

[Windwalker]

It is amusing and would be downright funny if it weren't so serious. Here we are instructing our doctors instead of them instructing us.

It is the same in the two most medically advanced major countries, in the world. (Israel is the most advanced but not a major country).

!0% of us are sufferers and our doctors pretend they never heard of it. They've heard, they just don't have an arrow in their quiver for it.

Periodically, I cannot get relief from RLS from Maripex, Requip, or any other dopamine agonist. I then go to opiates of one kind or another. Even a small dose helps me past the rough spots. I don't take them for long because I EITHER HAVE TO BEG A PRESCRIPTION FROM ONE OF MY DOCTORS OR GO ONTO THE OPEN STREET MARKET.

Anyway, when I have been on the opiates for a few days, the Dopamine drugs seem to work again for awhile.

Next week I am consulting an expert from mayo Clinic Arizona, hoping he is more literate than my Neurologist.

Wish I had and answer, but alas there isn't one yet.

[Hidden in reply to Windwalker]

Our Drs, I think, are here to keep us in a state of almost good health so we have to keep getting their legally prescribed drugs while they milk the money out of us!