What Severe RLS is Like

[Polar Bear]

EeFall - I also have arthritis in feet/toes, fingers/hands. My podiatrist has just mentioned how I've had fallen arches for quite some years now, I didn't even know I had fallen arches !!! and would guess this explains the increased discomfort and why the killer heels got kicked into touch.

You mentioned that you were sorry you had messed with your meds, but sometimes we just feel we have to have another try.
I have done the same with much the same result only with different meds.

My sleep Clonazepam wasn't doing much good (also there's so much talk about Alzeimers) so my GP changed me over (back) to Amitryptiline. There was one decent night of 7 hours..... and that was it. The Amitri 20mg appears to be ineffective. I then alternated a bit, couple of nights on Clonazepam 500, then a couple of nights on Amitri. Can't see any difference between the two. Sleep is about 2 hours, up for an hour or so, sleep for a couple of hours etc. It's likely that both those meds could be increased but whoa...... then we have to get off them, which is a whole other story.

Good luck if you return to your dose of 4mg, possibly get back to a good pattern on that, and then as you say, slowly reduce to no lower than 2mg.
Your lifestyle is still better than it was.
I also am jealous of how my husband can sleep ... sooooo jealous !!

[badnights]

I think it's good you "messed with" your meds, and you're approaching it the right way, getting yourself stable again, then gradually reducing but this time not going past 2 mg. It cost you a bit of agony to find that out, but I don't see how else you could have known. If you were over-cautious, maybe you would have stopped at 3 and never known you could go down to 2. (assuming you can go down to 2 again - it might just be the roller coaster, as Deb says!)

I was plagued by severe pain in both feet while working this summer. I was sort of crippled by the end of the day on a few days, and it was devastating. I switched to boots with a more flexible sole, and that helped, but it made climbing harder. I felt the pain was due to inflammation of some tissue or other, because it went away overnight, and started building again as I started using the feet in the morning. It felt similar to a brief bout of plantar fascitis I had last winter, except this summer the pain affected almost the entire foot, not just the sole - it wrapped up around the outer ankle and onto the top of the foot. Since fascia covers all the muscles, maybe it was still a fascitis of some sort - kind of plantar-plus I guess. haha. Similarly to you eefall, I wonder if that was caused by the amount of standing I do - all day in the office and when I get home - eat, work, read, computer, everything.

[EeFall]

Polar Bear and badnights so once again I see I am not alone, we having perhaps related foot problems with RLS.

Last night my Fitbit says I slept 8 hours and 17 minutes! Although woke up at 2 am with RLS but took a large dose of suboxone and went back to sleep. Today I am starting over at 4 mg. Looks like I have to. A shame really but I will see if I can get back to 2mg. I feel so much like my normal self at 2mg.

[Polar Bear]

So you start again at 4mg. This time you know how to travel the journey to 2mg. Good luck.

[badnights]

Give it a bit of time before you start reducing again. Your body needs to settle down I think.

[debbluebird]

Every time that I ever tried to reduce my meds, when I was in a good period, it always back fired on me. Now I don't try anymore, I just enjoy the sleep. I do understand that you would like to reduce them. I think you probably can, now that you have less stress.

[debbluebird]

I should add that I'm in the hyper alert phase. I'm wide awake until 3 or 4 am, with no RLS/PLM. The other times, I sleep 10 to 12 hours a night. It's like my body wants me to take more drugs, just to get sleepy. Which some times I do and other times I don't. I'd rather be in the sleep a lot phase. It's always changing.

[legsbestill]

I feel your pain, Deb. I have had a period of that hyper-alertness recently. Nothing like so bad as being awake with RLS but normal life is ... difficult/impossible due to the exhaustion. I hope it settles down for you soon.

[EeFall]

Every time that I ever tried to reduce my meds, when I was in a good period, it always back fired on me. Now I don't try anymore, I just enjoy the sleep. I do understand that you would like to reduce them. I think you probably can, now that you have less stress.

There was two reasons to reduce meds and the first was to see if I still had RLS. Answer is: yes of course. The other was $278 a month for suboxone and going to fixed income with a lot less income. $139 a month is almost a necessity.

My wife talked me into going from 4 mg after a week or two then going down to 3 mg. It is a little tricky dividing one 2 mg sublingual sheet and halving the other sheet to take it 4 times a day but I guess I will do it. Then after another week or two I will do 2 mg and stop there!

It really is strange about the roller coaster ride we go through, not only it going from good to crazy bad but also thinking we can make it out of our RLS predicament. I guess hope keeps us going. I am thankful that suboxone has worked pretty well this past 5 years. At least now if it stops working I don't have to worry about being fired

I have found out after these two months leaving work that I can barely sit still, I am always getting up to fix something or work on something or whatever. I feel halfway guilty to not be working, although I really don't miss it. Maybe work ethic kind of thing but I think it also has to do with RLS. I am not sure what to do. I guess doing nothing sounds good while working and daydreaming about it but my reality is keeping busy. Years ago I read many books about transcendental meditation (TM) and also took a college class in it. I need something like that so I can relax my mind.

[debbluebird]

I'm wondering if it's time to add back meds you've used in the past, then alternate them so you don't get dependent or augment. Especially now that your RLS seems to have improved. Possible then be able to stop suboxone.
I'm using 3 now. One is main, the other two I add as néeded, never more than 3 days, alternating them.
I understand about cost. I would never be able to afford what you take.

[EeFall]

I'm wondering if it's time to add back meds you've used in the past, then alternate them so you don't get dependent or augment. Especially now that your RLS seems to have improved. Possible then be able to stop suboxone.
I'm using 3 now. One is main, the other two I add as néeded, never more than 3 days, alternating them.
I understand about cost. I would never be able to afford what you take.

I changed to 3 mg today as 4 mg was making me extremely itchy, especially at night and I felt really stoned (for lack of better word). I didn't realize how strong it was until now. I don't even know if I will have a doctor in a month at least any way to pay to go see him.

[debbluebird]

Some doctors have discount rates when you don't have insurance.

[Rustsmith]

I will reinforce what Deb has said. I saw a GP that was out of network a few years back. His normal rate with insurance was $135 per visit, without insurance the rate was $80. More recently, my wife had an MRI where the list price was $5K, the insured rate was $2.6K and the rate without insurance was $500, which was just a bit more than our co-insurance would have been if she had been covered. The cost of medical care is not like anything else in the economy. It isn't supply and demand, it is something else that is hidden from us.

[EeFall]

I hope so, we have pretty much always had insurance and don't know how this works yet.

[badnights]

have found out after these two months leaving work that I can barely sit still, I am always getting up to fix something or work on something or whatever. I feel halfway guilty to not be working, although I really don't miss it. Maybe work ethic kind of thing but I think it also has to do with RLS. I am not sure what to do. I guess doing nothing sounds good while working and daydreaming about it but my reality is keeping busy.

I find it hard to separate the need to move as a subconscious way to keep WED at bay, from the habit switching focus that I probably developed because when the symptoms are on , I can't focus at all. So, holding symptoms at bay or suffering from a bad habit that I re-enforce every time I have symptoms? I don't know. A bit of both, maybe.