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 :rolleyes:) 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! :hug:

Oh Vrae girl, I'm so sorry you're still battling with so much....the edit, flu, the CRiPS, life, the universe, and everything...:rolleyes: 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 :hug:

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 :hug:

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.

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!

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,
Nanc
:hug:

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!! :hug:

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!

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

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!

Honestly the best I have found so far is the Hotel Luxury Reserve Collection from Sams Club. I was shocked that they were better with only 600TC compared to some being sold at higher end stores with 1000TC or more. They are made with Egyptian Cotton and hold up well without pilling through many washes.

I use a bed frame too (or a pillow at the end of the bed:rolleyes:), but I can't stand draughts, and our quilt seemed a touch too small to go over the frame too.....so I use a blanket that tucks in under the mattress and around the frame, and then put the quilt in as near a 'normal' position as possible. It seems to work pretty well, and my feet don't feel colder than they have to!

Anyone in the UK know a good brand too? Sadly you can't return sheets for being 'a bit rough' :p so my kids have plenty to choose from!!

Good luck guys. This is a rough condition to deal with, and the little things really help if you can get them right...

Bram :grouphug:

lol.. I only purchase items like this from places that have an iron clad "100 % satisfaction guarantee" this means that you can return them even if they are a bit rough ;) otherwise I'd go broke trying to find sheets and clothing that will work for me.

Here Here on "the little things that help..."

LMAO .... ah. Oh it's good to laugh. thanks!

The only ones I have right now that I do absolutely love, that had I used my head I would have sought out again, is a brand called Park Avenue Collection and I bought mine at Kohl's. Not cheap though, like $60 bucks for King size.

I hear ya, this is normally my approach too. For instance, like with Kohl's it would be no problem to return them. I was definitely having a blonde moment when I bought these damn things I have now. I got them from Tuesday Morning (a discount store or so they say) and I don't think they'll take them back, and IF I can find the damn receipt (was just looking for that this morning) I will at least try. And if nothing else it would be great to get in-store credit or something.


Bram, you crack me up. "Lots to chose from" I guess I could do that but I am the only king size sheets in the house. So they're a little big... more to wrap up in... right? lol

Yo!
 

To those who first responded that I was unable to write back right away.

Bram, Yes… even the universe! lol This damn sinus infection is moving down into my chest.. joy! I’ve had to pause on the edit today. The weather is changing for the worse, body aching in every way and well, a pause was being demanded. I’m feeling SLIGHTLY better about the edit. I have 1.5 hours of completed edit, YAY!! That’s a lot in video land. I still have AT LEAST a few more weeks of editing ahead of me and then it will be all done. What a lifted weight that will be.

Renee, yeah my laptop on my bedside table (like a hospital bedside table), with this thing the laptop sets on to raise it up and tilts it at me is the only way I am able to be in bed and read/respond, or just spend time on a PC that isn’t work related. I feel pretty lucky to have it. I get tired of TV pretty easily, so the laptop is great in that regard. Neurontin/Gabapentin: I’m at max dose on that at 3600 mg p/day, so I can’t take any more of that. I see my pain doc soon and we are definitely going to have to discuss this drug and how it’s not working as well as it used to, and Baclofen was awful for me, so we’ll see what he says. But thanks for the suggestion hon. Satin sheets.. hum. I have some but it’s been years since I’ve used them. That might work in the summer, but Colorado is just too cold in the winter for those. It’s a good thought because they’re soft. Might just slip my broken butt right out da bed… lol.

Az-Di, “I wish I could bring you a full body size down pillow cushion filled with warm air” Warm air pillows, I think you’re on to something!! Yep, been amping up on Emergen-C I should look and see if it has the Selenium and Zinc in it too. If not I know I have some Zinc, but I’m not sure what Selenium is. I will have to check the vit store. I’ve added guaifenesin to my arsenal, but if this crap just keeps getting worse, I may have to head back to the doc. When I cough I have that lovely taste of … OMG it’s going to be bronchitis next! Ug!!!

Hey Nanc, No worries and I sure hope you’re feeling better soon too! Thanks for dropping me a line.

Thanks Vrae for the kind thoughts. I haven't used satin sheets in years either to be honest with you! And I didn't think of the slipperiness. Maybe you should nix that idea! My husband swears by the highest thread count all cotton sheets. They are comfy, but when my skin starts burning I take all the sheets off until the meds take effect and the burning subsides.
My dr wants me to take more neurontin, and I may consider it. I take 1800 to 1900 mg a day, but the side effects are hard on me, though combined with percs it does help ease the pain and burning. I'm sorry you are taking so much more. But hope you can find some other med that may help more. Maybe you've just built up a tolerance for the neurontin. I think I have and may need more because of that. I'll just have to deal with the side effects. I hope you get some relief soon and thanks again for your kind words.

I don't understand the whole sheet thing - you would think that thread count is everything, but it doesn't always work that way. Really frustrating!!! I like to get things at Ross (a discount chain) when I can, because the prices are so great and often on name-brand stuff, but for some reason, even the name-brand sheets with high thread count are very often NOT smooth! I've given up on sheets at Ross - I go with Kohls or Bed, Bath and Beyond, because they'll let you return them if you're not happy with them.

That is exactly what happened. I thought the thread count would equal softness... I was wrong.

Since I can't seem to find my receipt (I think it was in the bag I threw away, damn it) I think I read once that if you put salt in the wash that it will soften them, but I'll have to look that up again to be sure. For the money I spent, I guess I am willing to try.

Indeed, VERY frustrating!