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 11-03-2013, 12:52 AM #1
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Angry My skin hurts! Symptoms raging!!

My everything hurts! This damn disease is absolutely consuming me, and consequently my attitude sucks tonight.

I have managed to get the flu (so glad I went to the trouble of a flu shot ) I'm sure it couldn't be all the stress of the edit I am STILL trying to complete.

Worked on the edit all day, tossed laundry, and all I wanted to do was get in my bed. My torso involvement is crazy right now, AND of course the legs AND arms, AND every friggin where else Ahhhhh!!

I bought a new set of sheets recently. What a waste of money that was!! Almost $80 bucks to try and get a SOFT set (600 TC) to rotate with the only ones I love right now. Washed them, made the bed (w/ husband's help) and got in. It literally felt like I was covered up in SANDPAPER! Mad me cry. Had to remake the bed with the only set I can tolerate.

I'm having pain all in my torso, and spasms in my organs that I can feel profoundly. The muscles in my upper back are constantly at a near 10 level. Crap, and it's now attacking my hands, so I guess I'm done posting. I go see my PM mid Nov. Lord that seems light years away.

I miss you guys/gals and as soon as this damn edit is complete perhaps I can participate more. Take care!
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CRPS II Full Body via L5-S1 Discectomy Surgery in 2004
Symptoms started upon waking from surgery in right foot/leg, mirrored to left foot/leg and then EVERYWHERE else.

Vision without action is a daydream. Action without vision is a nightmare. Japanese proverb,
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Old 11-03-2013, 07:18 AM #2
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Oh Vrae girl, I'm so sorry you're still battling with so much....the edit, flu, the CRiPS, life, the universe, and everything... I'm incredibly proud of you tho (if you know what I mean lol) because you're still in the fight with this edit, and you haven't given up despite everything this disease is throwing at you. You'll get there if anyone can

Oh I get you on the sheets thing. What my body really needs is soft brushed finest quality Egyptian cotton......shame I can't afford them! I had a similar thing last week - changed my sheet and it was a bobbly one (as we call them in my house). I did shed a few frustrated tears as we remade the whole darn thing. My elder daughter had used my favourite one, and was already in bed. I couldn't wake her and yank it off the bed!!! I'll have to get another set. I find the same trouble with quilt covers - I find the cheaper ones irritate my skin far more. I'm convinced my skin has developed expensive taste in clothes, bed linen etc. it even objects to my nice leather sofas in the winter - I have to put a rug over the leather, or I just get completely chilled through.

Keep trucking on my friend. You are an amazing person and I really think you will complete this edit through sheer determination. Just take good care of yourself with this horrible flu, and I hope you feel better very soon.

Bram
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Coeliac since 2007.
Patella femoral arthritis both knees.

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Vrae (11-04-2013)
Old 11-03-2013, 12:21 PM #3
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Hi Vrae, I was almost going to log on at about 1am this morning because I was having alot of rsd pain mostly in my limbs and couldn't sleep either. The only problem is I don't have a laptop. I only have an old desktop computer that's located in our livingroom where my husband happended to be in because he fell asleep on the couch watching a movie. I didn't want to wake him up with the computer. He looked so peaceful. It got really cold last night and I think that made my rsd flare up. I wish I had logged on though so that I could have kept you company. I'm so sorry you were having such a bad night. When I have trouble putting sheets on my skin, I take an extra 100mg of neurontin that my pm dr prescribed for me and that seems to calm down the burning sensation a little. That's on top of the 1800mg I already take daily along with my percocet. He wanted me to try to take more neurontin, but I just can't seem to tolerate anymore. The side effects are too much for me to handle. I didn't take an extra perc though, even though my pm dr said I could, but I was up until 4am. I don't want to take extra percs unless I'm really bad off. I finally fell asleep watching the Hallmark Channels Holiday marathon. (No golden girls on last night). I also has a heating pad on and my sleepy time tea. I have cotton sheets but when I get bad burning flares like you had last night I can't have anything on my skin until pills take effect and the burning wears off. My cat Snickers kept me company while I was up and we watched holiday shows together. I hope you feel better today and that your pain subsides. Maybe satin sheets might help. They are nice and cool to the skin. I may have to try that myself! Take good care and my thoughts are with you.
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Old 11-03-2013, 12:52 PM #4
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Vrae, I wish I could bring you a full body size down pillow cushion filled with warm air, if such a thing existed. Please try to stay warm. I hope you at least recover from the flu soon.
For a cold I'm told to take extra vitamin C (I do anyway), Selenium and Zinc. Those are pretty much the ingredients of "Airborne".
I really feel for you.
Hope you're better soon!
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Old 11-03-2013, 06:39 PM #5
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Vrae - I am so sorry you are having such a rough time. I sure hope you will get over the flu soon and get some relief from your CRPS. My post is short, struggling myself.

Take care,
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Old 11-04-2013, 01:32 AM #6
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I started to write a response to each of you but my forearms just aren't cooperating at all. Man oh man, my symptoms have been relentless. Thanks so much to each you. I mean that. You all are such a ray of sunshine! I can feel how much you care and I am so grateful!! I hope we all get some relief soon. Such a hard time of year with weather and such. Ouch, Ouch, Ouch... okay, okay ... that's all folks. Thanks again!!
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CRPS II Full Body via L5-S1 Discectomy Surgery in 2004
Symptoms started upon waking from surgery in right foot/leg, mirrored to left foot/leg and then EVERYWHERE else.

Vision without action is a daydream. Action without vision is a nightmare. Japanese proverb,
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Old 11-04-2013, 01:49 AM #7
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Oh, Vrae, that just stinks - flu on top of everything else?!?! I'm so sorry

Prayers and gentle ihugs, and know that people understand and care. I'm so sorry to hear about this awful rough patch

See if someone in your family can get you a beautiful little bright bunch of flowers that you can look at and thumb your nose at all the bad stuff because it can't take away beauty and love.

So sorry ... hope you are better soon!
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Old 11-04-2013, 02:02 AM #8
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Quote:
Originally Posted by SloRian View Post
Oh, Vrae, that just stinks - flu on top of everything else?!?! I'm so sorry

Prayers and gentle ihugs, and know that people understand and care. I'm so sorry to hear about this awful rough patch

See if someone in your family can get you a beautiful little bright bunch of flowers that you can look at and thumb your nose at all the bad stuff because it can't take away beauty and love.

So sorry ... hope you are better soon!
awe ... thanks hon!
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CRPS II Full Body via L5-S1 Discectomy Surgery in 2004
Symptoms started upon waking from surgery in right foot/leg, mirrored to left foot/leg and then EVERYWHERE else.

Vision without action is a daydream. Action without vision is a nightmare. Japanese proverb,
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Old 11-04-2013, 10:59 AM #9
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Quote:
Originally Posted by Vrae View Post
My everything hurts! This damn disease is absolutely consuming me, and consequently my attitude sucks tonight.

I have managed to get the flu (so glad I went to the trouble of a flu shot ) I'm sure it couldn't be all the stress of the edit I am STILL trying to complete.

Worked on the edit all day, tossed laundry, and all I wanted to do was get in my bed. My torso involvement is crazy right now, AND of course the legs AND arms, AND every friggin where else Ahhhhh!!

I bought a new set of sheets recently. What a waste of money that was!! Almost $80 bucks to try and get a SOFT set (600 TC) to rotate with the only ones I love right now. Washed them, made the bed (w/ husband's help) and got in. It literally felt like I was covered up in SANDPAPER! Mad me cry. Had to remake the bed with the only set I can tolerate.

I'm having pain all in my torso, and spasms in my organs that I can feel profoundly. The muscles in my upper back are constantly at a near 10 level. Crap, and it's now attacking my hands, so I guess I'm done posting. I go see my PM mid Nov. Lord that seems light years away.

I miss you guys/gals and as soon as this damn edit is complete perhaps I can participate more. Take care!

Gosh Vrae I am so sorry to hear you are hurting so badly and are also fighting the flu.. I hope and pray your pain subsides and the flu runs its course quickly. Where is that magic wand.. ??? lol..

Ugh.. the sheets.. like many others I completely understand this never ending dilemma! Just when I think I found the right ones.. after running them through the laundry they turn out just like you say.. sandpaper with the roughest grit! I've taken back 3 sets of expensive sheets in the past month.. nightmare that only those affected by this understands. I have always liked sleeping in a cool room with the weight of cozy blankets on me, now with the burning/sensitivity in all four limbs I've had to lay under a frame my husband built for me which is wonderful in that it helps some but, totally sucks also!! Grrr so frustrating. My heart goes out to you..

I do hope you get your project done soon.. you are a true fighter and I admire that

Laundry.. haha I "tossed" it too.. funny they didn't fold themselves! Sheesh

I hope your upcoming appointment proves fruitful!

Wishing you a productive and less painful day,
Tessa
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Old 11-04-2013, 11:09 AM #10
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Maybe that's why I'm extra sore! I've been battling a cold over the past few days and my body is killing me in areas it's not supposed to.

I just end up with both of my feet outside the covers! We need a new bed badly, and when we get to the point we can buy one I'm getting two twin sets on top so I can wrap the covers around me how I want them and DH can be nice and flat, and we don't have to fight over how I want the covers.

If there is a brand of sheets that everybody likes, oh, please name them!
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