Any advice gladly welcome

[Poppip]

Good morning everyone. This is my first time posting on any group forum. I have had RLS since I was a teenager. (I am turning 50 this year) All my life I have managed it by getting up walking around or simply by going to bed. In the last 7 years that has all changed and it has become very difficult. Everything was a problem from long journeys to classroom settings, going out for dinner, cinema. It all had to stop. I was originally started on Tramadol which did work for a while but after about a year and a half it just stopped working. I wasn't overly keen being on it but I really wasn't getting much sleep. I was then prescribed Requip and this was life changing. I got 4 years of complete relief. I really thought I was never going to have to think about it again. Then augmentation kicked in and it had to be stopped. I tried juicing, fasting, extra vitamins, less vitamins, Iron, Vit B12. I exercised more, then less. Honestly nothing worked. I dont drink tea or coffee and take little alcohol. My very understanding GP tried Pregabalin, Gabapentin. I was referred for an Iron infusion. Nothing worked. For the past 6 months I have been on Neupro patch 2mg which has been working mostly but I know its coming to the end of its effectiveness. Where do I go from here? I live in Ireland and was referred to a Consultant with a special interest in RLS, he advised the Iron transfusion. I am willing to travel to the UK if there is someone there that may help me. Is there anyone out there with a similar story re medications. I would love to hear from anyone please. My husband is so supportive and understanding but I know its incredibly difficult for him too. Thank you for reading my post

[LotteM]

Hi Poppip, you've had a long and unfortunately very recognisable journey. Please do try the iron infusion if you can het it, it helps about half of the people, although it may take some time to become effective (for some almost immediately, for som only after 2-3 months). The next step then is opioids. Targinact (slow release oxycodon combined with naloxon) is officially licensed for treatment of RLS in the EU.

[Poppip in reply to LotteM]

Hi LotteM,

Thank you for your reply. I was really hoping to stay away from the opioids if at all possible . I did have 1 iron infusion that brought my ferritin from 108 to 558, but didn’t make any difference to be honest. Thank you

[Hidden in reply to Poppip]

Hi , I have to agree with Lotte, as regards medical treatment for your RLS, it appears your only remaining legitimate option currently is an opiate.

As well as Targinact, methadone and buprenorphine are also quite often m entioned in this forum.

I can understand your reluctance to use an opiate. However, I believe this is fairly safe for some people. Firstly relatively low doses are used for RLS. It does depend on the knowledge of the prescribing doctor, the availability of appropriate monitoring and strictly sticking to instructions.

I always say, if the benefits of a medicine outweigh the side effects and the risks, then it's worth trying.

There are some less legitimate options, which you might find mentioned on this site, which also have their own risks.

[Poppip in reply to Hidden]

Thank you 👍🏻

[Madlegs1]

Welcome- I am living in Ireland and have been on low dose opiates for about 3 years, very successfully.

I was able to be put on them because of recovery from back surgery, so technically they are for pain relief.

But my doctor recognises the rls aspect.

I am taking Oxycontin 10mg twice a day and need Oxynorm 5mg each day to make up for the lack of lasting in Oxycontin. But I cycle medications very fast, so that may not be an issue for you personally.

All opiates take a while to get used to-- insomnia, itching etc--- but I can assure you it is well worth while in the long run.

I can pm you any more information,if you wish.

Cheers.

They won't prescribe methodone or cannabis in the South. I've tried!🤪😎

[Poppip in reply to Madlegs1]

Thank you 👍🏻

[NellieK]

I just looked up whether kratom was legal in Ireland and it is. The relief I felt when I first started kratom was amazing -- 10 minutes after drinking a tea made from just 1/2 to 1 tsp of the kratom powder, I could feel a wave of calm come through my legs. I have been taking kratom for over 2 years now with the same results. I went up to 2 heaping tsp./night at one point just because I liked the feeling it gave me, a bit of a high I guess, but am now down to only 3/4 tsp. per night and it is still thoroughly controlling my rls. Occasionally, I have to take 1/2 tsp. or so during the day when I take a nap, but not often. Just keep your dosage low, do your research, and I hope it works as well for you as it does for me.

[Poppip in reply to NellieK]

Thank you , I will certainly look it up 👍🏻

[Inallfairness]

Morning poppip,I too use kratom and have done very effectively for almost 5 years now. I highly recommend it. Do your research and you Will get the results your after. Good luck and take care.

[Poppip in reply to Inallfairness]

Thank you 👍🏻

[Faithatthebeach]

Sorry for your situation. I have found the only thing that helps me are opioids, they seem to get to the root of the nerve and stop it.

[Poppip in reply to Faithatthebeach]

Thank you

[Poppip]

Thank you