From feeling suicidal after so many years of unremitting RLS I’m without pain or discomfort for many hours.
I have a wonderful team of consultants who understand and are so supportive brought me to tears
My life has improved beyond I would have ever thought it could be. It’s taken for a while so I’m up to Methadone 7.5ml, 10am & 10pm for the past 5 days. After all the meds have failed me I trust this will continue to work for me. It’s not easy to obtain here in South Wales, most chemists only Px for addicts but my daughter found one who was able to do so and did fill the prescription for me.
My daughter who’s an NHS hotline Nurse practitioner pressured my doctor for me to see an expert who may be able to help me as I was in so much pain and without sleep.
I was fast tracked and thank goodness it seems my life may be worth living at last.
I hope for the same for you all in the same boat, it’s hell for us all. God bless X
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Nightwalker999
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That is fantastic news. If only the medical profession would listen to the suffering & take note. Methadone is prescribed by the experts in the USA. Time for the UK to catch up!
As a US patient of Doc Buchfuhrer, I can echo so much of what you say. !0 mg per day of methadone has completely changed my life. I worry about the overly strict US rules that make it difficult to find a pharmacy to fill the prescription, and I have to travel over 500 miles every 6 months to maintain the in-person regulations for an out-of-state patient, but I don't know what I'd do without this medication.
I hear you DODah-if only we didn't have to stress about getting the prescription. It is one huge reason I resisted and tried to stay on kratom. I am now getting the runaround yet AGAIN from the local practice who was prescribing Suboxone (after seeing Dr. B in CA). One doctor said he would give it to me-no problem with him whatsoever. Then he retired. His replacement is a woman and she has treated me like a druggie-I have to take urine drug tests and she is going to make me come in all the time. (I have been doing ok with supply because the subscriptions last a long time.) She doesn't even believe that I only need a small amount of the film. Omg-i almost lost it with her a couple of different visits. I said-"next time can you at least read up on the latest research?! Why would your colleague of many years be totally fine with prescribing it? You can't abuse 2 mg's of Suboxone!! (I take only about 1/8th of that)."
Two huge mistakes I made were telling her about kratom and also not filling the FIVE prescriptions from Dr. B that had far more than I need-large boxes that would have lasted forever. Now I'm stuck as they have expired and I have to try to manage her. I just saw her and she gave me no prescription, after doing a drug test, and wants me to come back in two weeks. OMG-takes me back to some awful times I had these past 2 years.
Hello DoDah, I'm so pleased you have found relief.Initially I was helped as previously mentioned but I have needed to increase the Methadone I'm up to 7.5 am and 10mg 10pm. I have discomfort constantly but worse 7pm - 10pm.
I'm bed, after a half hour my legs increase and I have to walk or jig for a few hours. So now the methadone is no better than Tramadol which helped previously.
I have to wait until I see my consultant in a month to increase the am dose. She said the max is 10mg and there will be no increase.
My cancer is in the one kidney so far and may be elsewhere, I'm reluctant to have further invasive investigations. Apparently I'm stuffed.
My question is did your 10mg relieve your RL S completely? Or my condition may / or will not be helped by the increase.
Yes, the 10 mg/day does provide me with near-complete relief. By that I mean that although I always get a solid 8 hours of sleep, but occasionally get a bit of jeebie symptoms when awake, but hardly bothersome.
I always night-load my dosaging: most often I take 5 mg about 5 hours before sleep time, and the other 5 mg right at sleep time. But sometimes I will take 7.5 mg a couple of hours before sleep time and then the other 2.5 mg if I wake up before I've achieved my 8 hours of sleep. Or maybe 5 then 5 at those times.
But I never take any dose in the morning, figuring that the am hours are not when I'm likely to suffer symptoms that are bothersome. In other words, I'd rather be "drugged" at night time than day time. Why don't you see whether night-loading your doses might help?
Best of luck! Feel free to message back if you like.
Hi there, it’s good to read you’ve found relief, an answer to our constant continuing search.
Thank you so much for your reply I’ll do what you’ve suggested. So pleased I can reach out to you. Your help is so much appreciated. Bless you my friend.X
I am so happy for you! Narcotics are a good long term fix in small doses. Dopamine drugs typically just cause augmentation. Most doctors don’t realize that DA’s make RLS much worse and put you through HELL! !!
🤗❤️.I am so pleased for you. It really shouldn’t need to have been this desperate with pleading and searching for people with compassion and common sense to help you…. But I am so happy that you are at last getting relief and long may it last . There is a good chance with methadone that you can continue well on low dosage indefinitely 🤗👍🤞🏼
It warms my heart when I hear people with this terrible affliction have found a treatment option that works and provides relief. I’ve been living with it since childhood and unfortunately it has gotten worse.
But please stay upbeat and enjoy the short time we’re on this planet. Life can be wonderful if you set your mind to it !
Hello Nikos, I'm so sorry to read you are in the same situation. Please seek a consultant to help you.It was only after I told my GP that I was suicidal and had told her several times. The meds that were not help at all.
We all need consultants to take us seriously and help us. No one who has this can understand how we suffer constantly. Little sleep and pacing none stop, no one can appreciate the impact on our lives and those who love us.
Dr Mark B messaged me I needed to get Methadone, he is so supportive too. He responded within a few hours.
That is so good to hear Nightwalker. Why is this nightmare of a condition ignored or so poorly understood by so many health professionals? Do we, as sufferers, need to make more noise?
Out of interest and for future reference, which team were you referred to. I live in Somerset so not that far from South Wales.
Hi there Dires, thank you for your message. I was referred to Gwent NHS Sleep Team Consultants by my GP surgery. I could not believe how understanding they were. The chief consultant answered my daughters phone call personally and reassured her that help was available and did so. God bless them. X
I trust you will find someone will help you too Dires
Would you report all the side effects from Ropinirole via the UK Yellow Card reporting Scheme?Unless we report the hell of augmentation and withdrawal, the medical profession continues to treat RLS as a minor nuisance and our suffering as 'psychological'.
It is a pinned post at the top of the page.
We will never stop doctors prescribing Ropinirole and Pramipexole and the Patch until the authorities see the scale of severe suffering on these awful drugs.
If you or your daughter could fill out a report, it will really help. I completed it when I went through augmentation.
Enjoy the good night's sleep and pain free days you will get on methadone. It will help any other health conditions you have. Sleep is healing.
Same for me! Methadone has given me my life back. Sadly I even one of the top RLS neurologist in the states does not prescribe methadone. I finally asked a long time physician and he prescribed for me.
Yes, thank you I've followed your recommendations and have done all you have mentioned previously and less with no avail. The Methadone seems to be the way forward for me at least.
It's heartwarming to hear that you have found something that really helps you. You deserve it after all the suffering you have experienced. RLS is a complete nightmare for many people. Good luck and hope you enjoy sleeping and resting which will heal you. H
Good morning Nightwalker 999, and it certainly sounds very much like it is for you. What a wonderful and encouraging post, it gives us all hope during the dark hours of dopamine augmentation. Also good on your daughter who was able to fight your corner. It’s so wonderful to hear some good news on the forum as so much is written in desperation from the lack of understanding of what RLS and Augmentation does to us and a lack of desire and compassion to research it for their patients.
Best wishes and as they say, onwards and upwards 🥳
Thank you, HipHop, I sincerely hope you will find a sympathetic Dr / Consultant who will help you too. Bless you. We need physicians who are knowledgeable and understand this dreadful disease who can help us cope with this condition .I pray you can find help soon. God bless. X
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