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 12-27-2016, 11:39 PM #1
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Default Totally exhausted. Bone weary. Why?

OK, so I'm always tired. This I'm used to. Probably from all the meds. But lately I'm worse. I'm seriously exhausted. Bone weary. I took two naps yesterday and went to bed at 7:30 before my kids did. (In laws were here). I woke enough to direct them at bedtime and then passed back out again. AND then I slept in again this morning.

I have zero energy. My body aches. But no symptoms of illness, it is like a flu, like I got hit by a truck, only nothing. No sore throat or headache or anything like that.

Anyone have something like this happen?

I'm talking, so tired I fall asleep at the computer WHILE HOLDING A CUP OF COFFEE.
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Old 12-28-2016, 12:32 AM #2
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I've had so many issues with this over the past year and getting worse and worse as time goes on. They ran some blood tests and my B12 levels are very low...like around 250. So they started me on B12 shots, one every two weeks for 4 weeks and now one every 4 weeks. I need to have the levels checked again. The doctors all told me (neurologist and primary care) that these would make a HUGE difference for me. Nope...not at all. I don't know if it's just that my body has hit its limit and is telling me, "No more...you need to REST!" or what it is...but definitely something that we're looking into.

I'm also not sleep well...ironically. I fall asleep like super early...but then only get 3 hours of sleep and am up again even though I am SO tired. I don't nap...can't sleep...just sometimes just lay there for a while not moving because I am so tired. And then there are episodes where I LITERALLY can't move. I'm too weak and exhausted to move at all and those have lasted anywhere from 30 minutes to 3 hours long. It's scary because it has happened when I am alone with my toddler daughter (just a couple of time) and I am so scared something will happen to her and I won't be able to do anything. She's very good and the house is child proofed and everything but...well...toddlers find very innovative ways to get into trouble...

Hopefully you are able to find the answer...I don't know what it is for me yet...
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Old 12-29-2016, 08:04 AM #3
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Default Feel better

Becca and Catra

I hope you both start feeling better very soon!!!
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Old 12-30-2016, 06:05 PM #4
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Hi Becca,

Pain is exhausting. It really does wear the body out. Add in any mobility problems and every day activities like bathing or making breakfast can require 5 times the normal effort. You and Catra are superheroes doing what you need to each day for yourself and your family.

I think it easier for us to get under the weather when our bodies are already dealing with a lot. Changes in environmental conditions, stress, allergens, etc can take a toll. And people commonly feel stressed during this time of year which can contribute too. Extra activities, expenses, family visits, overnight guests, trying to make everything wonderful...that all takes a lot of work.

Fatigue is not unusual with a chronic condition. I hope that you are giving yourself credit for all you do and are able to build in extra rest time without guilting yourself for giving your body the rest it needs. I hope too that you're not doing too much and are asking for enough help when you need it. I am notorious for not asking for assistance, doing too much and then paying for it, so I am poorly qualified to give this particular advice but I'm certain it's a good idea.

If you don't feel more energized after the holidays wind down you might talk to your doctor. For all you know you could be nursing a low level infection, be anemic or something else. A couple of blood tests would let you know.

I hope you feel better soon,

what is going on with your foot btw? Did the stress fracture improve?
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Old 12-30-2016, 07:58 PM #5
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I feel tired and exhausted all the time too. The constant pain from having crps and fibromyalgia and osteoarthritis (amongst other things) wear me out. I think that has alot to do with being so tired. Pain is exhausting especially around the holidays. I find that trying to rest as much as I can when my pain level rises helps a little. Hope you all find some pain relief soon.
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Old 12-31-2016, 10:34 AM #6
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Maybe have a bloodcheck done. Some levels might not be OK. That's the first thing I'd have them look at.

Go to your doctor and ask to have some blood drawn, and tell him/her of what happened.

Yes, I am tired as well. I stay in bed in the morning, every morning, not to "sleep in" (I hate that because I'm wide awake staring at the TV most times) but to "rest", as my legs *need* it (or I feel it during the day).

And still I tend to fall asleep between 7PM and 10PM.

But if you feel more tired than normal, then something is up; if you haven't changed medications that is.
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Old 12-31-2016, 06:15 PM #7
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I think now at least some of it is medication related drowsiness. But there is a difference, you know, between being sleepy from medication, and that bone weary feeling.

Yes, I'm doing too much, but I don't have a choice. Kids and a disabled/ill husband who keeps getting hospitalized, not enough help. I've been more demanding of the in-laws, but even when I demand they come help, they show up at 4 pm. I don't know what they think I do all the rest of the day. MIL has fibro so she says "I can't do this two days in a row." Well, sweetie, I take care of your son every day and I have CRPS. So annoying. And at night the pain elevates so I sometimes I can't fall asleep early, PLUS that's my only "ME" time.
I do take naps when I can.

Surgery for the non-healed fracture is on hold waiting for the wisdom of Worker's Comp to catch up and decide that it is needed. But first they have to repeat all the steps already done. Of course. And not approve doing it with my doctor at Kaiser because he's "Not on the approved list" OH NO!!! can't go off of the list. Sheesh.
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Old 01-06-2017, 08:40 AM #8
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Quote:
Originally Posted by Becca71 View Post
I think now at least some of it is medication related drowsiness. But there is a difference, you know, between being sleepy from medication, and that bone weary feeling.

Yes, I'm doing too much, but I don't have a choice. Kids and a disabled/ill husband who keeps getting hospitalized, not enough help. I've been more demanding of the in-laws, but even when I demand they come help, they show up at 4 pm. I don't know what they think I do all the rest of the day. MIL has fibro so she says "I can't do this two days in a row." Well, sweetie, I take care of your son every day and I have CRPS. So annoying. And at night the pain elevates so I sometimes I can't fall asleep early, PLUS that's my only "ME" time.
I do take naps when I can.

Surgery for the non-healed fracture is on hold waiting for the wisdom of Worker's Comp to catch up and decide that it is needed. But first they have to repeat all the steps already done. Of course. And not approve doing it with my doctor at Kaiser because he's "Not on the approved list" OH NO!!! can't go off of the list. Sheesh.
You sure have a lot on your plate. No wonder you are exhausted! Just be sure to have it checked out. I was feeling this terrible exhaustion and my doctor ordered all the blood work.......nothing. That was a relief but it didn't solve the problem. I decided to see an allergist because I remembered feeling fatigued 30 years ago and allergy shots helped. My allergist told me that the extreme fatigue could be from the allergies. So after the testing and allergy shots, I finally started to feel better. My point is that not everything is pain, medication, or stress related. I was lucky. My extreme fatigue was a pretty simple fix. I hope you are feeling better, but if not, get those tests done and have your doctor(s) do some brainstorming. You don't want to miss anything.

You are in my thoughts and prayers.

Shay
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Old 01-06-2017, 11:48 PM #9
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I've been sleeping a TON lately. I think winter and I just don't get along anymore. The rain REALLY caused a lot of pain in my foot and leg, even more than just plain cold did. Yikes. CA needs rain but apparently I don't.

And now my worker's comp doc had to discharge me as a patient because the practice is changing and he's not really going to be working there, etc. etc. yada yada. Now I have to find a new pain doc. Have to call my lawyer and let him know.

I have my other pain doc (non worker's comp) on Monday so I'll try to remember to mention the exhaustion to him.
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