False hope

[Whymelord]

Hi,I'm always waiting and praying that some medical people will find a cure for this horrible rls. I watched a programme on television last year,it was called restless legs the cure or something like that, we watched with bated breath to find out at last what the treatment was that would cure me. Never been so disappointed,couldn't believe that it was even allowed to air,all it showed was how the rls affects a person, no help whatsoever, I feel it was just made to fill airtime, I along with a lot of rls sufferers complained, I would hope next time someone puts a programme on air that they will research properly before saying there's a cure., that's my rant for the day.

[Hidden]

Sorry Whymelord, there will be no cure any time soon - it's something we need to accept and then move on to find OUR cure.

You will find relief here, you will feel better and you will be supported - that is a guarantee. As far as I can see this place is one of the best, if not the best repositories of RLS information and it has some good skins on here that are very willing to give of themselves to help others.

Let us know what you are currently doing to help yourself, including ALL drugs you are taking and before long I can promise you, IF you are determined to get symptom free, we can help (I say IF as I see people on here given good advice time and time again that they continue to ignore and continue to suffer).

Take care and don't give up.

[Whymelord in reply to Hidden]

Hi, thank you for your reply, you are perfectly right about this forum,I've only been on here for a short time and already I've been given some good advice which I intend to use, as I said I've had more help on this forum than I've had from my gp,i realise they don't know enough about the syndrome. I'm on Pramipexole for soo long without success so I'll try the Pregablin or Gababentin, hopefully my gp can prescribe one or the other, I've also got advice about Iron treatment, I'd never heard of Gentle iron so I will start using it in the hope that it will help, that's again.

[BENGAL1000 in reply to Hidden]

Hey there mate, I have sent you a p.m. That I don't think youve found yet.

[Whymelord in reply to BENGAL1000]

Hi, I'm new here so where do I find the pm you sent me?

[Hidden in reply to BENGAL1000]

If that's me you are referring too, nope, you've not sent me one. If it's sent to Whymelord - you will find it highlighted at the top of your HU page.

[Whymelord in reply to Hidden]

No it's not me either

[Hidden]

I'm sorry I missed some of your responses to my earlier replies.

I note you are trying to reduce pramipexole by only taking a tablet every other night.

I wonder how you're getting on with that.

It's not a very good way of doing it. I would have found it impossible if I had tried it. If ever I missed a dose, the consequences were horrendous!

Even if that were not the case it seems you are dropping the dose and increasing it again on a 2 day cycle

It's better to take the same dose EVERY day, but reduce it. As I previously suggested reducing it in steps of 0.044mg is probably better. Reduce the dose every 3 - 4 weeks.

Even then, you may experience withdrawal effects.

I wonder also if you have planned on taking a replacement for the dopamine agonist in the short term. Iron therapy is a longer term treatment.

Sadly, I doubt if there's ever going to be a cure for "RLS" . This is mainly because it is a syndrome rather than a single condition. The syndrome appears to have many causative factors, so it depends on which particular factors are present in anybody's particular case.

Not all causes can be readily eliminated.

It certainly seems if by "a cure for RLS" is mean't one single treatment, then that's unrealistic. I have recently read a couple of "bloggers" ( for want of a better term), claiming they cured their own RLS. They both seemed to claim a single (different) "cause" and claim a single cure for all cases of RLS.

Great that it worked for them!

There was, at least some, scientific basis for what they claimed. Alhough there is some "bad" science, there are some, "out there" who appear to shun science and prefer remedies that work by some unknown, hence occult, mechanism as if things haven't improved since the middle ages!

Overall, raffs seems correct in saying you have to find YOUR cure.

[Whymelord in reply to Hidden]

Hi I did try a tablet every other night but it doesn't work I ended up having to take the tablet in the middle of the night my legs were crazy. I'm on 18gm now, I was taking 0.88gm but wasn't any good so gp uped the strength.i don't know how to cut the dosage, do I half the actual tablet, I am intending to get my gp to give me either Gababentin or the other one you mentioned. Thanks for the help and advice.

[Hidden in reply to Whymelord]

Your legs will go crazy if you don't take something every night.

Incidentally, you are missing out a zero. I hope. The doses are 0.18mg and 0.088mg Plus this is mg (miiligrams) not gm (grams). A gram is 1000mg.

You can reduce the dose, as you say, by cutting the 0.088mg tablets in halves. or even in quarters. This will enable you to reduce the dose by either 0.044mg or 0.022mg. Try 0.044mg LESS. This would mean one 0.088mg tab plus one half a tab. If your legs go crazy try cutting by 0.022mg instead. The smaller to reduction the less the withdrawal effects will be.

Stay on that dose for 2 - 4 weeks before cutting again.

It's a common response for doctors to increase the dose when the drug starts to fail, but really this just increases the risk of augmentation which often occurs after increasing the dose.

[Hidden]

I think alot of us know which programme you watched, which was a while ago when it was broadcast, those of us who watched it were also disappointed in it, altho we did think if this programme was saying they was a cure , i am sure we would have all heard about it from a medical source not a tv programme first. This was the second porgramme that has been on the tv about RLS which was also rubbish. This forum has many experienced members who have so much more RLS knowledge to pass on to other members who need help and support.

[Whymelord in reply to Hidden]

Yes, I agree with you, I did see both programmes, rubbish, seems they just took advantage of the rls sufferers who appeared on the programmes to make the show.

[Rubicon99]

Has anyone tried strong compression leggings? I’m trying that next. And acupuncture. I had to get off my beloved requip cuz I’m trying to get pregnant and I’m dyingggg. I can’t sleep ever

[Whymelord in reply to Rubicon99]

Hi, I've never tried compression leggings in fact I've read somewhere that tight fitting garments may exaggerate rls, I tried Accupuncture and found it no use at all but that's just me everyone is different and respond to different treatments, good luck.

[oldfidgetlegs in reply to Whymelord]

I can't even wear tight leggings if they've got much lycra in them, I end up ripping them off. I found some cheap mostly cotton ones in Primark were much more comfortable even if I ended up with wrinkly knees!

[YodaDog in reply to Rubicon99]

I got compression sleeves (i also suffer with mild peripheral neuropathy in my toes and the idea of having tight socks over my toes filled me with dread, but then I found there are sleeves as well as socks. I don't use them all the time, just when I have a breakthrough of RLS whilst on my meds in the late afternoon and evening or if I'm travelling somewhere. When I do use them I find they work really well.

Additionally, my mum, who also has RLS and hates tight clothes, also got some (after my recommendation) and she finds they work well for her as well.