Hi Cindi,

It sounds like you have some great news too! A new Grandbaby, how wonderful. Your birthday is a wonderful celebration as well. Focus on the beautiful things while this is happening. I am sorry you are hurting and I will also lift you up in prayer.

Stay warm and take some epsom salt baths .Have you tried some yoga stretches. There is a dvd out there called am/pm yoga, It is just small stretches nothing tremendous that will hurt you. I love the one with the Asian man. It is very gentle stretches. The other one is a more advanced stretching it has a lady I can't remember if it is the am/pm one. You can buy it at Target or Barnes and Nobles bookstore.


My prayers are with you,

Sandy

So nice to hear back from you both..Yes,.. My RSD has never ever stopped or lessened in the 3 years I have had it..Of course, I gotx the SCS unit and now it has spread... Yes, my Blood pressure just today was 134/84.. it does travel as low as 50 on the bottom also.... I too have whole body sweats then turn cold instantly...and I have had 4 out of 5 nerve blocks.. medications..two arms length which I had to stop taking and now I am on nothing cold turkey as I is just too hard to be sick too.. I had accupuncture.. I was told I am too far advanced for the oxygen chamber...(HBOT)and now off to Drexel with a "rush" stamped on my forehead...in March the 15th.. This is only a consult to see Dr. S and what is possible for me...honestly..I am having lots of trouble wrapping my heart around this step..maybe I am getting tired of the whole RSD game..or possibly the travel and $$$ it is going to take, I don't know... Anyway... I say the I am okay..and Iam okay.....I hurt, as everyone does...I just get up and try again each day... Oh and I never cry...some reason..I just can't do it...

Kim, how long have you had your constant symptoms?? Sandy, I am so happy you go in and out of flares....

Much love to you, my special friends!!! And thank you for allowing me to spew!!!

Kathy

HI CINDI, That describes pretty much me during a flare. I may get a couple lesions-which last year got infected, takes a long time to heal and hurt -I can't even describe the pain of cleaning them. Last year I said if I get another one I'll go to the hospital. Do you have full body or generalized? I was diagnosed that 6 years ago. I've had this 15 years. I also have the intense heat from the inside out ,lots of sweating. I can't even think about a heating pad during the pelvic heat which is really everywhere. I'm going to address this next visit to my neuro and gyn and internist.
Are you on any anti-anxiety meds? I take Lorazepam 4 1mg a day. they help a lot. You know hot tubs are not good for us. too hot. How long have you had this? How did it get started etc?
I used to have the jolts,jerks, electric shocks go thru the body thru my brain. Would scare me to death. During sleep my head would jump right off the pillow. He put me on 3200 mg of neurotin. I hated it but they stopped. If you are on that watch your weight gain. I did change to Lyrica 400 mg. it seem to work better with the pain. I slowly went off and don't have the jerks any more.
Do you have a foot tub with jets? that with warm water and epson salts helps the bones! So does the Warm Waxing of the hands and feet. you put the plastic sacks over the hand and feet and then in the soft towel gloves and when it cools it peels right off. That helps the bones too. You can get both at Wallmart or Discount cosmetic stores.
I forgot to look where you live. I'm in Arizona, so the winters are nice, but the summers are terrible, especially since I went internal pelvic region. That's why they changed the name from RSD to CRPS. The word Regional applys to the burning pelvic region.
Well, I hope you are knee deep in snow. My son in low left this morning for Chicago for his 4 day shift of flying in the north northeast or Dallas. He had a lot of flights he couldn't do last week. Really cold in Chicago.
Take care, your AZ buddy, loretta with soft hugs

Dear Cindi1965,
It sounds like you are having a meltdown for sure which we all have all the time so you are not alone. When I get like this I go into my bedroom and close the door and turn out the lights and cry. I call it my time out. Sometimes I may not cry but just being in the dark and having it quiet is calming for me. I stay there for as long as I need to and then come out and I feel like a new person. Sometimes I will lie there and pray and it does relieve some stress. I will keep you in my prayers tonight.
Take care,
kathy d

I can so relate to all the symptom descriptions and mental strain. Keep smilin I can really relate about the traveling and $$$ for docs. I am so drained and may be doing it again. At this point I don't even know how to feel or think.
Kim could you call your doc who rx your meds that you will run out of and ask if he can call you in even a few till you get it in?
Cindi congrats on being a grandma. I wish I had more answers and relief for you. I know how life factors increase our pain. So many natural things that cause of us pain. I hope you get through in the best possible way and better times come ahead asap.
Sending warm and pain free thoughts to all

Yes, I do take Xanax for anxiety meds and they do help...I thank you all for the support. I have been pushing through and doing my PT and then I found the last.fm station, listening to it with the lights off. I refuse to let RSD take me down. One good thing is that my kids have been at their dad's and my hubby does a good job taking care of me.....so far on my Wii Fit Plus I have lost 7.5 lbs by just doing the balance and concentration games...my favorite is the ski jump. I am feeling better to day so I am getting on the board and do some concentration games, later

Also, I got great news about my SSDI....I got in touch with Senator Jay Rockefeller's office through my local state Delegate and it looks really good that I am going to get my case through.....people don't think of getting in touch with politicians to help them with WC or SSDI...don't give up

Hi Cindy,

Sorry to hear that you have been in a flare! I hope you are feeling better now and that the pain has lowered. I do understand what you are going through, I fell last Saturday and tore all the ligaments in my knee (had to go to hospital yesterday because of it) so it has been extremely painful lately!

Thinking about you and keeping you in my prayers,

Alison

Miss Allison, where have you been? Your positive little spirit is what drew me to this board...I am soooo sorry about your ligament, I hope that you feel better soon.