[Karen67]

Hello everyone, does anyone out there have CRPS in both feet? I had knee surgeries on both knees @ the first of this year and found myself with this horrible disease. It now trying to spread to my right hand. I have my first sympathetic nerve block on sept. 16th and I'm wanting to talk to others who understand what I am going through. Pain, depression, feeling like a burden to my family and husband....has anyone out there had these feelings? Thanks for listening!

[Rrae]

I just wanted to welcome you to this wonderful forum!
I'm sorry the reason for being here tho
The good thing is that we all understand what you are going thru and everyone here is so supportive and caring.

I see you've been posting in the RSD/CRPS forum, so you are probably getting to know some of the wonderful folks there.
NT is like one big family and everyone is very down to earth.
Make yourself at home - you've got FRIENDS!

Caring
Rae

[Karen67]

Everyone that I have talked with has been so kind and super understanding. RSD is such a strange disease to have...most people I know have never even heard of it. For that matter my own doctor had not heard of it!!!! My diagnosis was at least 6 months in because I had to figure out what I had on my own. Do you know of anyone else who had the the same problem with their doctor?? My ortho surgeon blew me off several times after my knee surgeries when I tried to tell him something was VERY wrong with my feet. Then, my PCP just shrugged her shoulders and told me to go back and talk to my ortho surgeon again. Sheesh...thank God I found all of you!! Thanks for your reply and listening to me whine.

[nyt2]

My massage therapist told me he thought I had CRPS/RSD in my right leg because it was colder than my left and from my complaints to him. I went to my PCP and showed him both of my bluish/molted/reddish legs that occurs when I stand and described all my symptoms. The PCP measured my right thigh and said it was about 3/4 inch smaller than the left but felt that was within normal range of differences between sides. He told me that he didn't think I had RSD. So almost another 6 months goes by with a couple more times me mentioning to my PCP about my legs. Finally, I decided to show my pelvic pain specialist my legs and as soon as he looked at them he said to me, "You have CRPS in your legs. How long have you've been having these symptoms?" Then he said to me, I've got to get you into someone who can treat your legs this is not my area of expertise. So I don't think it is uncommon for it to take a while to get a diagnosis.

[Karen67]

Originally Posted by nyt2

My massage therapist told me he thought I had CRPS/RSD in my right leg because it was colder than my left and from my complaints to him. I went to my PCP and showed him both of my bluish/molted/reddish legs that occurs when I stand and described all my symptoms. The PCP measured my right thigh and said it was about 3/4 inch smaller than the left but felt that was within normal range of differences between sides. He told me that he didn't think I had RSD. So almost another 6 months goes by with a couple more times me mentioning to my PCP about my legs. Finally, I decided to show my pelvic pain specialist my legs and as soon as he looked at them he said to me, "You have CRPS in your legs. How long have you've been having these symptoms?" Then he said to me, I've got to get you into someone who can treat your legs this is not my area of expertise. So I don't think it is uncommon for it to take a while to get a diagnosis.

I'm starting to think that RSD is not something that doctors think to look for after a trauma, surgery, etc. Oh well, we just have to try to have a positive outlook and pray that at some point our lives can be somewhat "normal". What type of treatment have you had so far? Did your PCP send you to a Neurologist or a pain clinic? My neurologist gave up trying to "make me better" and sent me to get sympathetic nerve blocks and stronger medication. Hope you are having a good Saturday morning!

[Rrae]

I know what you mean, Karen. I had the same problem. No one wanted to pay me the time of day - either because they didn't know about CRPS or perhaps your surgeon may be put on the defensive a bit because if we complain something is still wrong, then that some how reflects on him as a 'failed' surgery. As was the case with me. It's very frustrating and sometimes we have to weed thru several Dr's. Eventually, someone will come along and see this for what it is.

Has anyone mentioned anything about the SCS (spinal cord stimulator) ?
Just wondering. Alot of Dr's do these. I have one in my lumbar for the burning neuropathy pain in both legs. It sounds freaky I know. When all other treatments fail, this is sometimes considered, depending on whether or not Dr thinks you are a candidate

I hope you can start getting answers soon.
Let us know how the SNB injections go

Rae

[Karen67]

Originally Posted by Rrae

I know what you mean, Karen. I had the same problem. No one wanted to pay me the time of day - either because they didn't know about CRPS or perhaps your surgeon may be put on the defensive a bit because if we complain something is still wrong, then that some how reflects on him as a 'failed' surgery. As was the case with me. It's very frustrating and sometimes we have to weed thru several Dr's. Eventually, someone will come along and see this for what it is.

Has anyone mentioned anything about the SCS (spinal cord stimulator) ?
Just wondering. Alot of Dr's do these. I have one in my lumbar for the burning neuropathy pain in both legs. It sounds freaky I know. When all other treatments fail, this is sometimes considered, depending on whether or not Dr thinks you are a candidate

I hope you can start getting answers soon.
Let us know how the SNB injections go

Rae

Thanks for the ongoing kind words! And yes, my doc gave me dvd to watch about the spinal cord stimulator. It sounds wonderful. My only problem is cost. My insurance pays 80% but that would leave me with a $20,000 bill in the end. We just can't swing that. Not sure why this is so expensive here, but it is. Hope you have a wonderful day! Karen

[keep smilin]

Originally Posted by Karen67

Thanks for the ongoing kind words! And yes, my doc gave me dvd to watch about the spinal cord stimulator. It sounds wonderful. My only problem is cost. My insurance pays 80% but that would leave me with a $20,000 bill in the end. We just can't swing that. Not sure why this is so expensive here, but it is. Hope you have a wonderful day! Karen

Hello Karen....

I just want to welcome you here and it is great that you have gotten such wonderful support from Rae and our family here....One thing we all feel is RSD/CRPS is such a debilitating illness...and I'm sorry we had to meet under these terms...I have had RSD for 5 years now...beginning after rt. Knee surgery...now it has become internal and an ugly pain!! Rae is so right, in that we have to weed thru Dr.s until we find one who cares...enuf to take interest in our troubles, pain, future and what the heck is this illness really about..the blue, red mottled skin along with a glisten, shiny look to your skin...so classic!

I'm so sorry you are having to experience this pain..it is relentless and our homework is never ending! I do have a SCS... Many have success with pain relief to some degree with it .. Honestly, I did not get such good results with mine...I still have it and don't care to remove..mostly not wanting to encourage more spread of my RSD with the surgery it will take to remove it...but as with RSD... Nothing is consistent with us all...ugly disease, I tell ya...

let us know how ever we can help....weeze family here...

Hi Rae!!


hugs, Kathy

Hey there, Karen! I can see that you've met up with some great folks already. I'm so glad to see that you're getting the same terrific support that I got a few months back when I popped up with questions, questions, questions .... & a whole lot of scared.

Just keep on coming back, asking questions, & put that pain pump on the back burner but not out of the picture. Do you have any connections--vet, anything?--that might give you even 1 time access to additional coverage? I just like to keep "impossible things" close enough for my guardian angel to ponder...

I'm so glad to meet you. Ask for any support you need, including a friendly, non-judging ear should you need toa bit. (I get such of kick out of that emoticon...wish I could set one out on my desk..hee-hee.)

Hope next week is a fine one for you.

C.G.

[310Girl]

I just got diagnosed with CRPS too. I know exactly how you feel.