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 04-13-2011, 09:48 PM #1
debbiehub debbiehub is offline
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Default Judt wasting away

My muscles from basically head to toe are wasting away...I have no padding left in my arms or left leg...I really don't know what to do anymore...In such a state of despair.. Can't stop the tears...My arms are so fatigued. I think I have a tumor on one of my parathyroid glands..we r looking into it but I seem to have all the signs- in my blood work. Just at the end of my rope with nothing left to hold onto.

Thanks for letting me vent.

Debbie
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Old 04-13-2011, 10:59 PM #2
Imahotep Imahotep is offline
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I exercise to keep the muscles up but the exercise causes pain and too much causes terrible fatigue.

It's a careful balance. Keep working and best of luck.
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Old 04-13-2011, 11:12 PM #3
lovefamilypets lovefamilypets is offline
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Quote:
Originally Posted by debbiehub View Post
My muscles from basically head to toe are wasting away...I have no padding left in my arms or left leg...I really don't know what to do anymore...In such a state of despair.. Can't stop the tears...My arms are so fatigued. I think I have a tumor on one of my parathyroid glands..we r looking into it but I seem to have all the signs- in my blood work. Just at the end of my rope with nothing left to hold onto.

Thanks for letting me vent.

Debbie
Debbie,
I wish I could help you, but alas I have also watched as my muscles waste away. I don't know if you've already tried it, but I recently started doing a little bit of water therapy and while I sometimes flare up from it just the freedom of being able to move in the water is so liberating that it is worth it. I hope this helps. I definitely feel your pain. Life seems like a never ending battle with RSD, and I can't imagine having to deal with RSD and a possible tumor. My heart really goes out to you. I hope that things turn around for you.
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Old 04-14-2011, 08:08 AM #4
debbiehub debbiehub is offline
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Default TY

thanks for your replies..I have been swimming for a long time now but lately can hardly do one lap...just so tired of this,,,feel like quitting.

Debbie
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Old 04-14-2011, 08:25 AM #5
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Quote:
Originally Posted by debbiehub View Post
thanks for your replies..I have been swimming for a long time now but lately can hardly do one lap...just so tired of this,,,feel like quitting.

Debbie
So sorry Deb. Please hang in there.

I truly wish you the best. XOXO Sandy
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Old 04-14-2011, 09:36 AM #6
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Default Hi Debbie,

Exercise is the key but I know it's hard. I just bought me a ball kit from WalMart. It has a big ball in it and two small ones and my therapist is showing me how to use them in a safe way. I already figured out that there is one I can't do due to the TOS though.

Try to do some exercises at home. I cannot go to gyms. There is just too much at them that I can't do.

I hope you start feeling better soon.

Ada
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Old 04-15-2011, 05:16 PM #7
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Dear Debbie

i am so sorry for you and everyone here that replied that they too feel a wasting away feeling. I wish i had a blanket like Linus on Charlie Brown to give to everyone that would work like magic and make you feel great and loved! I hear your frustration. I truly do. Im falling apart too. some days more obvious then others. I dont exercise because I hurt but others say you have to it will help in the long run. I have a little weight kit that i am going to try to make a plan to use this weekend and start a small routine. i also am losing my ability to walk...i have to work on getting up each hour and taking some steps. i know how bad it hurts. but please dont anyone give up. we have to keep going for our family and friends. they really need u so much more than we can understand. its so frustrating to go to the doctor and get these blank stares like i want to help you, but i have used all the tools in my box for you...i dont have any more.
BUT NIH is working on more clinical trials everyday. we have to have hope that they will come up with something diffeent that can really help us.
keep hanging in best as you can and post here on your good days and bad.
you never know who your going to help!
blessings
Lori


Quote:
Originally Posted by debbiehub View Post
My muscles from basically head to toe are wasting away...I have no padding left in my arms or left leg...I really don't know what to do anymore...In such a state of despair.. Can't stop the tears...My arms are so fatigued. I think I have a tumor on one of my parathyroid glands..we r looking into it but I seem to have all the signs- in my blood work. Just at the end of my rope with nothing left to hold onto.

Thanks for letting me vent.

Debbie
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Wishing you a day of pain free movement that turns into forever!
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debbiehub (04-15-2011)
Old 04-15-2011, 06:41 PM #8
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Default You are so worth it!

Hi Debbie

I'm so sorry to hear about your sadness and the additional problems mounting up on you. Nothing I can say other than I'm here for you to talk to. All of us on this site with RSD are going through the same things you are, including the feelings of sadness and just plain tired of everything. I guess that makes us good people to talk to.

As you have mentioned, the muscles in my body are wasting away also. The RSD is in both my legs, spine and down my right shoulder/arm. The worst is my feet though. It all started there and continued to spread. Up until last fall I was able to do a little stretching exercises every day. Now if I do them I'm sent into a tailspin and end up in the hospital. I'm trying not to be gloomy about it all but it seems it's a fact of life with RSD. It depends upon how long you've had RSD but sooner or later it might be there for all of us to sort through.

As for now, take only what the moment has to give you. Don't look ahead even for an hour. There is always hope even if the cards are stacking up on the wrong side of the table. Take out something that you love -- be it music, a movie, or pictures. Focus on only that for now. Despair is always ready to pounce--don't let it. Don't let this dragon fire take you. It may take your muscles but you are much more than that. Your soul is still singing. Hold on to it.

Hoping that as time moves along tonight the sadness will leave you.

Teresa Marie

Quote:
Originally Posted by debbiehub View Post
My muscles from basically head to toe are wasting away...I have no padding left in my arms or left leg...I really don't know what to do anymore...In such a state of despair.. Can't stop the tears...My arms are so fatigued. I think I have a tumor on one of my parathyroid glands..we r looking into it but I seem to have all the signs- in my blood work. Just at the end of my rope with nothing left to hold onto.

Thanks for letting me vent.

Debbie
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Old 04-17-2011, 11:19 AM #9
Breezy55 Breezy55 is offline
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Default Just wasting away

Deb, I also feel the same way that you are feeling right now. Just to take a shower is like a painfull balancing act! The bottom's of my feet are so numb.I can't even count how many times that I have slipped or fallen while doing this everyday thing. I even have a chair in my shower,however that does not even help me now. Maybe when you find out the result's of your parathyroid test's it might explain many of your sx,including fatigue and your emotional feeling's right now. Untill then just remember we are all here for you Deb! Hang in there,tommorrow might be a better day! Love Alway's-Breezy55
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debbiehub (04-17-2011)
Old 04-18-2011, 06:16 AM #10
daniella daniella is offline
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Deb I am so sorry for all your pain and struggles. I don't have the right words to say but you are in my thoughts.
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