Rls

[Hoochybaby]

Hi I’m 82 years of age and can sympathise with you mother

My rls is so severe I’ve hardly slept for weeks now the uncontrollable urge to move my legs in bed keep me awake although I’m dog tired

I take 150 gm pregabalin and 60 gm codeine each night to no avail the only way I can get a bit of sleep is to take zopiclone which I take as a last resort I’m going to try to get a doctor appointment tomorrow if I’m lucky but as usual it will be a phone consultation they no longer do face to face

My appetite is good although putting on weight which I put down to pregabalin but I can’t take a larger dosage due to heart palpitations I get pretty desperate due to lack of sleep but not holding out of much hope with the GP it’s either lack of concern or knowledge? Not sure which

Any one else out there in a similar situation I would appreciate a reply I live in the uk and ivy the years iv tried almost anything to get relief

[Jelbea]

Hi Hoochybaby - so sorry to hear of the agony you are going through. I used to take codeine some years ago but then as RLS got worse it was no longer any good. After 2 years on 15 mg oxycodone daily I changed to Butec patches ”buprenorphine “ as oxy no longer as good. I also have spinal trouble with double sided sciatica so the patches treat this also. I do feel better on bup instead of oxy - clearer headed and fairly good sleep (about 5 hours which I can manage on quite well). I did have to fight for this.My point is that I will be 80 next spring and I am doing OK with the patches. I cannot take pregabalin and it seems like you might be better off it as well if it causes palpitations.

If you have another pain source such as arthritis, back trouble, etc you might be able to persuade your doctor to let you try patches. A good point is that the opioid goes through your skin and therefore not through your digestive system. I have to take oral chemotherapy daily for blood cancer and also a blood thinner and I am not bad considering all. At our age walking the floor is almost impossible and we really need our rest. I hope you can get help. Try to get someone close to you to speak up on your behalf

Sometimes I think when we have snow on top or are bald people stop treating us as sensible intelligent human beings. I send kind wishes for the help you so desperately need.

[cicek]

Hi. You have my sympathy. I am nearly 74 years old and had RLS for roughly 30 years now. I am presently weaning off Roprinorole and finding it very difficult. I am suffering every day without fail and like you, I find having to walk the floor for hours is becoming unbearable. I also contacted my doctor but they wouldn't entertain me other than to say they have a cancellation phone appointment on 15th November. I do have to complete the withdrawal now but hopefully will get something else to give me relief. What can we do. I am having a procedure called a Cardioversion on 24th November, an electric shock to my heart to try to get it back into rhythm, and I'm even wondering whether to go ahead with that as I don't know how I'll be able to rest afterwards. Only way is to speak to the hospital and ask for their advice. The older we get the harder it gets. At least we don't have to work but then we just naturally get more tired. Good luck and I hope you have more success with your GP than I did. As Jelbea says, try to get someone to speak up for you otherwise they will just consider you old unfortunately.

[Jumpey]

I'm so sorry you are suffering. Your story of meds becoming ineffective over time is a common one sadly.I have experienced the same tolerance on opioids- codeine and Tramadol. I am now on morphine which is giving me about 4- 5 hours sleep.I would ask your doctor for a low dose of a stronger opioid. Oxycodone is licensed in the UK for RLS. Others get relief from buprenorphine. You could try emailing Dr. Buchfuhrer for a recommendation and show his email to your doctor. Good luck.x

[Macsen]

Hi,I am a 70 year old woman,who has suffered with R.S.L for about 45 years….I thought that I had written that post,whilst half awake ,trying desperately to sleep!!!Sleep deprivation is a torture,but add to it the falls…I too am black and blue from falling,causing immense distress to my long suffering husband and daughtersIDREAD THE NIGHTS…..and have turned night into day,trying to “catch up”

Good Luck,everyone.Thinking of you Hoochybaby xx