I would appreciate a little help in deciding what to do next.
In summary, I must have had RLS for at least 30 years but it wasn't really a problem until about 12 years ago when I wasn't able to get to sleep, every night.
My GP referred me to a neurologist. I had a choice, a long wait for one with a good reputation or a shorter one for one with a poor reputation.
Desperate, I chose the shorter wait. The reputation was deserved! I was quickly examined, confirmed diagnosis of idiopathic RLS, no explanation, no advice. No mention of iron levels etc. I was prescribed Pramipexole, which was brilliant because I vaguely had believed there was no treatment for RLS. I was told to start on 0.088mg tablets, one to start, but could go up to 6 tablets. How's your maths?
Pramipexole for me was a miracle, at first, you can guess what happened as time went by.
Symptoms at one point got bad enough, (not sleeping), to seek another neurology consultation. I saw a more pleasant one who suggested a short course of Clonazepam. Which although not dramatic in its effect did help.
Time passed. There is probably a difference between passively giving up and "acceptance", I think I've experienced both. Certainly, I've only really got desperate with RLS when I'm REALLY not sleeping well. I accept some chronic insomnia and life, in the last 9 years has been somewhat bumpy anyway.
This has included marital breakdown, acrimonious divorce, financial concerns, a cancer diagnosis and treatment, relationship problems, recognition of 80% probability of suffering autistic spectrum disorder, (Aspergers), developed spinal nerve problems and so on, - life!
Things are good now, found new romance and celebrated third wedding anniversary last week.
I can't remember now how long the pattern has been, that I can get to sleep most nights, (unless forget to take the Prami), but wake up very early. If I try to have a catch up nap during the day, forget it, instant twitching! Nonetheless. on the whole felt no great desperation and accepted chronic insomnia and daily bouts of twitching in legs arms, shoulders etc, at any time of day (except after taking Prami). In a way, the twitching is exercise without effort.
I use ALL my waking time constructively, sleeplessness can give you time to get things done as long as they don't disturb others.
In 2017 an MRI showed my neuropathy symptoms were due to a compressed nerve in my spine, ( not the metastases it could have been). My GP prescribed Amitriptyline.
In 2018, the neuropathic pain got terrible, GP stopped Amitriptyline and prescribed Gabapentin, a short course of Naproxen and Codeine Phosphate for acute pain. The Naproxen and Gabapentin worked and got the neuropathy back under control. The codeine didn't do anything, so only took it twice. Was reluctant to take higher dose of Gabapentin after reading about side effects.
It was at this point that I first heard about a) augmentation b) exacerbation of RLS by Amitriptylne and c) Gabapentin helps RLS.
Mistakenly believing or not, that Gabapentin could help me reduce the Pramipexole, I did that very very slowly between September and November from 3 X 0.18 to 2 X 0.18 with no really noticeable difference.
However in November started REALLY bad insomnia, Eventually, a visit to GP in January resulted in a prescription of 10 tablets of Zopiclone. I asked her for help reducing the Prami, was advised to seek a private neurologist and wax told no GP was going to prescribe any opiate for RLS. She did say she'd look up augmentation as she'd never heard of it.
Luckily, the insomnia improved, Getting 5 to 6 hours average sleep, and don't have to get up when it's dark. Never taken the Zopiclone. Looked for a private neurologist, but the only one I could find, guess who? He still has a bad reputation, but still practising!
Despite lack of any reasonable accessible medical support I have now further reduced Prami from 2 X 0.18 tabs to ONE X 0.18 tab.n
RLS symptoms are now not as bad as they have been. I'd say mild symptons, daily, still can't cat nap, but thanks to free bus pass, can fall asleep on the bus. (I'm not moving, but the bus is!).
Get very irritable, but not sure if this is sleep deprivation or the Aspergers. More likely the latter.
Long story, my story and I hope youre still with me.
I have been a student, and teacher, of psychology since my late teens, with a career in health care and think the psychological aspects of health, illness and well being are often neglected or underestimated, by a significant number of people, a significant amount of the time. After all, you can't see something psychological, you can't do a blood test and despite medical research the pharmacopeia remains crude. It's more (psychologically) comfortable to think there's something purely physically wrong with you rather than consider that there might he something psychologically "wrong", although "wrongness" shouldn't come into it. It's easier, (less expensive), for Dr and patient to prescribe/take a magic medication than it is to undergo self development.
(PLEASE NOTE, i am NOT saying RLS is all in the mind and I am NOT saying it can be "treated" purely psychologically. Like many physical conditions, the psychological element is how you cope with it.)
I do believe that I might suffer a lot more from my RLS symptoms if I wasn't so accepting if them and haven't "struggled" with them.
After all there is no ideal magic medication.
So what next? Should I go for completely stopping Prami knowing it's such an uphill struggle and difficult to get medical support, or should I just accept where i am? At least for now.