Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 06-04-2016, 11:01 PM #1
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Default Extreme Weakness

Today was not a very good day for me. It was a day where I was able to get some much needed rest...but at the same time it was one of the worst for a recent issue I have been having the last few weeks or so...which is EXTREME weakness to the point of not even feeling like I can move.

The first really bad episode happened a last week (though I have been feeling this sensation of weakness for about a month). I had gotten up with my daughter and let my boyfriend sleep in a little because I knew he was just exhausted and needed the rest. I got her up okay, and fed her breakfast, but when that was done and she wanted to play...I just laid down on the floor, face down, and could not get up...I was just feeling so incredibly weak that I couldn't make myself move and I laid there for an hour while my daughter played around me and on top of me...which was incredibly painful...but I still couldn't make myself get up for a whole hour. Then I finally was able to push myself up and scoot over to the couch where I just leaned against the couch on the floor until my boyfriend got up. I did feel better later on in the day. There have been several episodes like that since then.

Today was the worst though. I don't even know how I managed to get up and take my daughter to daycare...as before I felt so weak but I knew I had to do it because I couldn't watch her all day...especially not feeling like I was feeling. I got home and laid down on the couch. I picked up my Kindle and started to read but I couldn't even hold it propped up so I set it down and closed my eyes and just laid there. I didn't sleep and was very aware of my left arm feeling tingly and numb (that's where I have the shoulder and neck pain)...and by the time I finally forced myself to get up even though I still was feeling weak...it had been 3 HOURS!

I'm trying to decide if this is serious enough that I need to contact my doctor to try and get in ASAP or if I should just ride it out. I'm pretty sure it's the meds at this point...the Tizanidine lists weakness as a side effect. That med is the only reason I am getting any sleep though after 7 months of almost no sleep each night...so I'm not sure what to do.

It's a very strange sensation to just feel so WEAK. It's not fatigue or normal tiredness because I'm not sleepy. If I had just taken a nap this morning I don't think I would have thought anything about it...but to be awake and aware that I just don't feel like I can move is a little scary. It eventually passes each time...but today it lasted longer than normal...usually it doesn't last so long and usually it isn't so severe that I really don't feel like I can move...that has only happened a couple of times outside the two I mentioned (but never for as long as those two times). It also isn't always right after I get up either...and when I get up it's usually at least 8 hours after I take the Tizanidine. It takes about 45-60 minutes for it to kick in usually, then I get a good 5-6 hours of sleep, and the weakness usually happens a couple of hours after I get up.

I see the work comp doctor for my IME on Wednesday...but I know that doctor doesn't offer any sort of treatment and I doubt would be any help with this issue.

Do you think this is something I can wait on? I'm just not sure what to do at this point. I guess at the very least I should probably call the doctor's office Monday and see if I can talk to the nurse?
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Old 06-05-2016, 12:44 PM #2
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At the very least let the doctor know you are experiencing this side effect. Maybe they can mess with the dosing to help? Because this could be dangerous with your little daughter for you to care for. It seems scary to feel that weak, I can only imagine. But needing the sleep too, its a catch 22.
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Old 06-05-2016, 02:13 PM #3
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Catra sorry you are going through this extreme weakness. I would call the nurse and tell her what is going on. I hope you feel better.
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Old 06-05-2016, 04:27 PM #4
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I think I will call tomorrow. It doesn't happen every day...like so far today I have been totally fine...but when it does happen it is scary.
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Old 06-06-2016, 05:32 PM #5
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hi catra. i just wanted you to know i was thinking of you and that i hope you are having a better day today. i am not a dr but if i were you i would see one to check you out. i started feeling that kind of weakness a few years after being diagnosed with rsd. i found out that fibromyalgia was the reason. the combination of the two diseases just knocks me out sometimes. my child came to visit last night and i couldn't even get out of bed to say hi to him. he had to come upstairs to see me lying in bed in pain. i felt so bad but i just couldn't get up. my rsd pain levels were about as close to a 10 as they have ever been the past few days and i just couldn't move. i have suffered from rsd for many years but this was the first time i couldn't get up for a moment to say hi to my child. it broke my heart. i am so sorry you are going through this too. i have also had tingling at times in left side and had an ekg done just to be sure my heart was ok. it turned out to be ok and my dr said it was my rsd causing this sensation. you may want to get a complete physical done just to make sure your symptoms aren't from something other then your rsd and meds. i hope you start to feel better soon and will keep you in my thoughts and prayers.
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Old 06-08-2016, 08:01 AM #6
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I'm so sorry that happened to you...I can only imagine how that would feel to not be able to get out of bed to say hi to your child...but at least you got to see each other. I just had a full physical and blood work done in April and actually went back to my family doctor Monday to get some blood work redone because my CBC levels were high in April...results yesterday showed they were all normal normal so at least on that end I think I am okay. I haven't had another episode of that extreme weakness since Saturday...just the feeling of weakness in my left arm.
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Old 06-13-2016, 11:59 PM #7
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Hi Catra,

I hope the weakness not been a problem since you'd last posted.

I can identify with your description. I cannot always discern the cause.
I do have a similar sensation when a few conditions are flaring all at once.
I also have a similar sensation with some meds.
I can also have similar sensations in heat, especially humid heat.

I am very sensitive to most meds. I also take tizanidine off and on.
We are all different in how we metabolize meds; however, I can say a little tizanidine goes a long way with me. I do get a feeling much like you are describing with higher doses of tizanidine. Of course, we cannot safely conclude it's exactly the same with both of us.

You are very insightful. I believe you will know when to contact your doctor.

Sorry you have been having such challenges.

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