I had a similar spasm-borne insomnia. I went 14 years without a decent night of sleep. My current neurologist gave me Zanaflex/Tizanidine (alternative or taken with baclofen), and though I hate it during the day, I now sleep at night for real sometimes and it makes all the difference.
I also take Provigil (modafanil) in the morning to help with the remaining fatigue, and now I have some good days or even weeks with real energy to do things.
As for progression, I am a bad person to judge by. I was having a nice, normal course of Hereditary Spastic Paraplegia with just a little hand involvement and jaw spasticity, when about 15 years later the disease suddenly decided I would look better as a quadriplegic! It then shot into overdrive mode and knocked me down from a very independent manual wheelchair outdoorsman to a power wheelchair user who can't swallow much or talk too long. But I feel less alone when I read about others, so I will share mine:
1994 - only noticed symptoms in retrospect, but couldn't kick properly in martials arts, only low kicks, or high jump, loved athletics but generally uncoordinated at them
1995 - had a car acccident, very mild, but over the weeks and months that followed, crushing back pain kicked in; was diagnosed with "spastic pain syndrome", and did PT and the whole lot. I don't think the accident gave me my UMND, but it certainly woke a mostly sleeping dragon! This is what I call my onset, at age 14.
1995-1999 - Lots of back pain, myoclonus, and the reverse of foot drop - couldn't push off ball of foot, used a cane on and off, progressive leg weakness and spasticity. I used a cane on bad days, traded my backpack for rolling luggage (not at all cool looking in highschool, if you're wondering!), etc. Spasm/pain brough on insomnia, as I said, and I abused aspirin like only a stupid teen can - 1 every 45 minutes, all day, to get through school. Ran straight A's and A+'s, but missed 3 months my freshman year, made just enough days for sophmore and junior, and only made 140ish days in my senior year. They threatened to deny me graduation for lack of attendance, but mom pointed out that I had already taken the majority of their college level classes, so what precisely would they do with me? They acceded and made an exception. I had my breasts surgically reduced from H-cup to C/D-cup to try and relieve back pain, but it didn't work.
At this point, I was on the verge of suicidal from the pain, the difficulty, and not being at all understood. It is hard to have severe pain taken seriously as a teen. My brain broke - mild disassociative fugue. I disappeared the week before I graduated high school and woke up the next March. I can't say with authority what happened during this time, but I apparently flunked a semester of college and made a lot of new friends. They were great, very accepting when my personality changed (back to me) overnight.
2000 (post March) - 2003 Insidious progression, only obvious in hindsight. My legs got weaker, hips go worse, etc. By 2003 I was on crutches full time, and unable to make the walk to the bus stop or from place to place at work most days. 2003 was my last year working at the IRS, they had already transferred me to a physically less demanding department, and that wasn't working.
2004-2005 (summmer) This was a bad time. I lost the ability to climb stairs at all, and then to stand with crutches even long enough to cook a quick meal or take a shower, even with more advance forearm crutches. I bought a shower chair, my first honest admission of being disabled, and sometime in the summer of 2005 a wheelchair for using outside the house.
2005 (summer) - 2009 (summer) Great years! After getting my wheelchair, I could feed myself again, go places, and get stuff done. Once I started using it full time, my back pain eased considerably, though I didn't know why at the time (it was caused by my poor walking). I consulted the internet and discovered a world of wheelchair tricks, and then proceeded to bust that wheelchair learning to do them. The wheelchair made other people take me more seriously, and they helped me with medical costs to get source hunted down. After establishing it was not a rheumatologist thing, but a neurologist thing, we had to prioritize between a new set of $200 appointments and new expensive tests, or a not busted wheelchair. The choice was obvious to me! I bought the cheapest rigid wheelchair, and two months later was sitting atop a mountain feeling like the the world was my oyster. (All that crutching was very good for my arm strength, heh.)
2006 was also the year my plateau (no meaningful progression) started. I plateaud from 2006 to 2008, and completely re-engaged life as a highly skilled paraplegic. I got married, cared for a newborn, learned to hike, etc. The only "progression" was some hand/arm trouble during the winter that faded in the early spring.
2009 Spring came, but this time my hands didn't get better.
In fact, by July when I was diagnosed with Hereditary Spastic Paraplegia, they still weren't better. I knew that might happen one day, I had done my research and was ready. I bought a slew of items, from grippy wheelchair rims to handles for my cookware. HSP as a diagnosis meant I must be almost done progressing, and we all celebrated.
Unfortunately, as I said, the disease felt I would make a lovely quadriplegic. Just a few months later, I started to sag when I sit up, and I couldn't hold my head up for long. That started in the end of October and I was bedridden by December. I was hoping it was temporary, but that wasn't how it went. My swallow started going that winter, and then my voice this past spring. I was stuck in bed until March, when the ALS Association was persuaded to loan me a wheelchair, and it has been quite a learning experience since! I am still progressing very actively, losing foods I can eat each week and a point or so of arm strength every month or two.
I am really, really hoping to plateau again soon. This is quite enough progression for a year!
