Restless legs and periodic limb movements

My husband, a qualified master baker had to give up work a year or so after we got together due to having restless legs. It sounds like something that is just mildly annoying, I'll bet many of us have had that awful feeling of needing to move our legs, especially when over tired. It's not nice but probably not something you would expect to stop you from working. I can understand why people would feel outraged by it.
I first noticed Tim was different to other men as soon as we shared a bed *blushes* As we drifted off into a happy love drunk snooze, we were led in bed holding hands, all romantic. When he started to squeeze my hand, at first I thought it was reassuring and sweet but soon I realised (to my horror) that he had no idea he was doing it HMPH! When his body twitched I genuinely thought it was just Tim falling into a deep sleep (You know that feeling of falling when suddenly your body jumps?) When he started to move his legs around the bed, I thought he was trying to find the cool spot in the bed and a few times I thought 'Hurry up and get to sleep, it's not cute anymore!' (Ooops!) I thought he must find my bed VERY uncomfortable the way he was fidgeting but soon I noticed there was actually a rhythm to it, his legs rubbing along the bed a few time and then he would kick out and also lash out with his arms. 'Hmmm! he hasn't told me about this' I thought, a little worried and a tad annoyed (I like my sleep).
The next day we had a chat and he said an ex girlfriend had complained about his 'performance' in bed LOL! He certainly IS all action! He admitted he hadn't really believed her, he thought she was making excuses. When I convinced him it was a bit of a deal breaker for me (It really was and still is horrendously difficult for me to sleep next to him) he went to see the doctor and got given all sorts of things to try and help, as there is no cure. After quinine, early nights, baths, leg massages, creams, lotions and potions, some prescribed medicines that made him pass out (!), some that made him wet the bed (sorry Tim) and some that made everything feel groovy (for him anyway!) he finally got referred to a neurologist. He explained that he has restless legs with involuntary body movements/periodic movements. He also told him that sleeping with him is a bit like sleeping next to a washing machine on spin cycle. SO TRUE! Hooray!!! The irony is that whilst Tim is merrily twitching away at night, he IS asleep, very poor sleep I admit, but all the same, ASLEEP. He got some new tablets, pramipexole and was soon upped to over the recommended dose. The neurologist noted he was a bit of a special case because not only does he have restless legs, but restless arms too. Very severe as well.
When I got pregnant we had to have separate beds because we were worried he would lash out with his arms. You can imagine the stress this put on our relationship. He is often grumpy and tired and we can't do so many things that 'normal' couples enjoy (No, I don't mean that! That's very fine thank you :-D ) Silly little things like snuggling up together to watch telly or go to the cinema are out, he literally can't sit still for more than 10 minutes! He disguises it by nipping off to make cups of tea, which is nice but I would rather snuggle thanks! Theatre is out, visiting people is tricky. Anything that involves sitting or standing still for too long creates problems. He is very good at hiding it, he can subtly change position, people probably just think he is a fidget.
Behind Tim's mask there is heartbreak, guilt, self-blame, self-hate even. He feels he pushed himself too hard when he was younger, drank too much when he was younger and didn't go to see the doctor when he noticed it first. (I don't think it's his fault at all! ) He takes antidepressants. Even after his diagnosis we tried to get him in for a sleep assessment because we felt his new GP didn't take him seriously enough and not sure even the neurologist realised how sever it is. He got sent to see a psychiatrist by this new GP to find out if the problem was mental rather than physical. GRRR! We know it does affect him mentally but felt that is because of the illness, rather than the other way around but he went and she concluded it was as WE thought, the illness causing the depression. Even so, when he asked the question about being referred to a sleep clinic, the GP said he would be 'a laughing stock' for referring him. NOT very helpful. It does seem that not many people truly understand. He has been to a few benefit agency medicals and has been claiming incapacity benefit or whatever they call now since he was diagnosed. Tim feels they do this more on his mental health than the restless legs etc. I can understand his frustration, it does SOUND like something so trivial but I feel Tim has been robbed of 'normal' life. My fear is that now they are doing this overhaul of the benefits system, he will be expected to work again.
You would be forgiven for thinking Tim doesn't really WANT to work, that's not true at all. Tim is by nature 'a worker' he hates not working and it drives him crazy. He has tried going back to work but the tiredness he feels goes beyond normal tiredness. He gets angry and short tempered (not in a violent way, it's not aimed at us) he falls asleep as soon as he sits down and then he starts with the twitching of course. His body is never really at rest. The thing is he CAN keep going, he says himself he could run for miles, he could rush about all day, but you make him stop and then he suffers. He says the sensations are like ants crawling under his skin, unbearable, itchy, driving him to utter distraction. He can't take any more tablets than he does and after a while he has to wean himself off them because he builds up a resistance to them. The worst thing is there is NOTHING ELSE that helps like these tablets do with the sensations (movement is always there, no matter what) Recently he weaned off these and went on some others, I found him crying and desperate, It was HELL ON EARTH for him and we had to sleep separately (separate rooms) after years of having zip-link beds positioned about two inches apart.It helped us still feel 'together'. Very upsetting for us both. On the other hand I found I slept better than ever! No more swishing noises and being woken up every few minutes. When we shared a bed it was like someone shaking me awake, nudging me as if to say 'wake up!' It doesn't do much for either of our health. Since the weaning and going back on pramipexole tablets I haven't been able to face sharing a room with him again. I just sleep so much better *guilty*
I do wonder what the future holds. Will the boys have it? Tim's dad does get restless legs but not that severe. Will they not recognise how much this affects him and send him to work? If so. How will he cope? Could our marriage survive? I really don't know. Only thing I do know, is I love him and I want to be with him, in sickness and in health...