Riding the Big One (RLS 24/7, Hanging Ten)

[ViewsAskew]

I figure the best any of us can do (with severe symptoms) is get to about 80% of our prior functioning. And, that is good considering at times we were at zero!

[EeFall]

I figure the best any of us can do (with severe symptoms) is get to about 80% of our prior functioning. And, that is good considering at times we were at zero!

So true. Zero is wondering if one will ever sleep again, or ever sit down. Still it would be nice for a cure so we could get back the other 20%. I suppose many of us would have to be tethered to the ground if we were at 100% again.

[debbluebird]

When I was still working, it used to make me so mad, because I couldn't relax on the couch on Sunday afternoons. It would have felt so good just to take a nap, and watch some TV. I was so tired back then.
Now, I can take a nap once in awhile. Sometimes I can't. I'm back to sleeping more too. Less trouble with my legs.

[EeFall]

I went to bed and read until 10:30pm then decided to go to sleep, after 30 minutes of lying there I began to have restlessness so bad I had to get up. I went and sat on my couch recliner and within a 1/2 hour I had to get up. I took an extra gabapentin in the hope that it would help but it didn't. By 3am it occurred to me that I should have taken more Suboxone, it is for my RLS, not the gabapentin. By then it was too late, I don't want to mess up when I sleep and besides it may not have worked.

I paced for awhile last night and then remembered dancing so plugged in my ear buds into my iPhone and danced until about 5am. I was finally able to sit down and drifted off a few times until I got up at 7am and made coffee, my wife came out of the bedroom about the same time. She hadn't realized that I had gotten up. I cancelled a physical therapy appointment for today, I just don't feel like doing it today, I'm exhausted and feel almost sick from lack of sleep.

I don't believe I have done anything differently. I just don't understand how the meds can work for 4 or 5 days and then it is like I didn't even take them. I did take them though. It is frustrating. This is what happens when I work, I just never know. I think that everything will be okay and I will be able to work for a long while and then this happens. It could even be that Suboxone is starting to not work. I'm at 4mg now and it makes me very itchy. I can take an extra 2mg once in awhile but I don't think I could take it continually at 6mg or above. Besides the doc won't give me anymore than 4mg.

I'm thinking he may give up on me too. I'm not taking morphine. The hydromorphone didn't work except to really make me groggy. Beyond groggy, it made me a zombie. I would rather retire and not take anything than take morphine. I'm just tired. It will be okay.

[EeFall]

Does anyone know if Celebrex and/or Tylenol could be messing up my RLS?

I didn't sleep again last night even though I took 5mg of Suboxone instead of 4mg. I even took an extra gabapentin when I got up and it didn't help at all. The night before I slept about 5 hours but it was pretty restless. Last night I couldn't lay in bed but I didn't have to pace either I just sat on the couch all night. Those drugs are the only thing that is different and they started me taking them after surgery.

I'm turning into a zombie again.

[Polar Bear]

I would have thought that they would not affect our symptoms....
But yet again, we know how it goes...... we're not all the same, nothing seems consistent, things change from day to day.

Sorry to hear you're being zombiefied

[EeFall]

I would have thought that they would not affect our symptoms....
But yet again, we know how it goes...... we're not all the same, nothing seems consistent, things change from day to day.

Sorry to hear you're being zombiefied

I removed all the Tylenol and Celebrex from my medication. I'm not taking them anymore. It may be a little more painful but I gotta sleep. I hope it helps. I forced myself to go with my wife grocery shopping (4 stores, I'm not much of a shopper ) it really wore me out but I didn't want to do the zombie.

[EeFall]

I would have thought that they would not affect our symptoms....
But yet again, we know how it goes...... we're not all the same, nothing seems consistent, things change from day to day.

Sorry to hear you're being zombiefied

I removed all the Tylenol and Celebrex from my medication. I'm not taking them anymore. It may be a little more painful but I gotta sleep. I hope it helps. I forced myself to go with my wife grocery shopping (4 stores, I'm not much of a shopper ) it really wore me out but I didn't want to do the zombie.

[EeFall]

I was so exhausted last night when the RLS symptoms started after going to bed I just laid there moving my arms and legs. That went on most the night until I couldn't take it anymore and got up at 5am. I doubt if it was the Tylenol and/or Celebrex now. I have a very bad feeling about this, I think I'm in trouble. Yesterday the Suboxone wasn't totally helping either. It is beginning to not work. The gabapentin made me very tired (since I was exhausted anyways) last night but being tired doesn't help if one is also having RLS symptoms.

I can't increase the Suboxone because it makes me too itchy in the first place and secondly the doc won't give me more of it. I go back to work Tuesday from being out from the shoulder surgery. I am out of options once again. I suppose that the RLS may have gotten worse yet again, I am always amazed when that happens but I don't know why it has been getting progressively worse every since I was diagnosed in 2000 and I had it probably my entire life. I'm bummed out and tired.

[debbluebird]

I did find that Tylenol was on the list of possibly making WED worse. Celebrex can cause muscle cramps. Whenever I find a drug that affects the muscles, it usually affects my WED. Maybe in a couple more days it will get better. Do you still have pain pills left over from the surgery? Sorry this is happening again.

[debbluebird]

Do you think it's possible that caffeine might be contributing to your WED ? I know you said that it didn't bother you before, but for me things that didn't bother me before now bother me. I used to drink caffeine drinks, I used to take benedryl, I used to take cold medicine, I used to use artificial sweeteners. Now I can't use any of these. We all know that WED is constantly changing. I'm out of my flare up and I'm back to sleeping. Maybe you are just having a flare up? I would eliminate anything on the WED list. You have nothing to loose.

I put my list in another thread under General Topics. If the moderators need to move this to another category, that's ok. I just wanted you to be able to find it.

[EeFall]

Do you think it's possible that caffeine might be contributing to your WED ? I know you said that it didn't bother you before, but for me things that didn't bother me before now bother me. I used to drink caffeine drinks, I used to take benedryl, I used to take cold medicine, I used to use artificial sweeteners. Now I can't use any of these. We all know that WED is constantly changing. I'm out of my flare up and I'm back to sleeping. Maybe you are just having a flare up? I would eliminate anything on the WED list. You have nothing to loose.

I put my list in another thread under General Topics. If the moderators need to move this to another category, that's ok. I just wanted you to be able to find it.

I do drink 2 cups of coffee in the morning (sometimes 3) but I noticed from your list that I also take the Costco Kirkland brand of Claritin. I take it every single day. I wonder if it could have started to bother me. I will stop both for a few days and see what happens. Thanks for pointing out the list you made!

[debbluebird]

You might have to wait a week.

[Polar Bear]

Good luck - wouldn't it be nice if the absence of claritin made a difference.

[EeFall]

You might have to wait a week.

I took the Claritin out of my meds until September 9th.