Wish to Learn More

[Abigail]

My daughter who is 32 years old was diagnosed over 10 years with RSD in her hands. She's in constant pain, though she's on many drugs. I need to understand her disease more than I do. I do know she takes dylaudid and neuronton, and effexor. I'm sure she's taking a few more med than that, I just don't remember them all. I'm also a chronic pain patient, so I do understand pain to a degree. I'm fortunate enough to have an inerthecal pump, which restored my life. I'd give anything for her to have one of these but it seems her doctor feels she's a little young for one knowing that every 5 - 7 years they have to be replaced. Anyway, if a few of you could explain to me about your disease and the amount of pain you suffer, I would appreciate it. I want to learn more about it so I can be a little more patient of her and her pain.
Thank you,
Abigail

[HopeLivesHere]

www.rsdhope.org/ShowPage.asp?page_id=116

I sure hope this comes up for you - as you will see on the McGill pain scale there is no other illness as painful as RSD (for some, not all)

It feels like someone has taken off your skin and is pouring acid on there.
Skin burns like fire, muscles feel like they are being pulled through a meat grinder, bones feel broken and also icy cold and hot rods in there at the same time. Sometimes the burn itches so deep you can scratch to the bone and it won't go away. Sorry to be so graphic but to me it feels like torture.
There is always
Hope

[Sandel]

:) Welcome to Brain Talk..

I find alot of the realy bad pain for me is the deep bone ache, and as Hope says RSD scores very high on the McGill pain scale.. so we use words like ache when actualy it feels more like my bones are going through a grinder or being rolled over by a pavement roller thingy.. realy indescribable but I try when anyone realy wants to know.. otherwise when they ask "how are you" I say "Ohh I have been better" and leave it at that.

We learn to cope by devising distraction strategys early on in the pain cycles, as I am sure you probibly have seen with yr daughter, I feel for her having this for 10 years already now, and I think you are doing a great thing by wanting to learn more about what is happening with your daughter and the daily challenges she is under.. bless you mom.

My Ma is like you very supportive, and my ma has also been living with chronic pain for years which I think has to help lots in the understanding department eh?

Ask us alot of questions, some times are better'n others for getting responses but just keep posting an we'll be here for ya.
hugs'
Sandra

Ps.. at the top right hand side of the page here is an area that says Welcome Abigail, its where you get and send private messages, I wasn't sure you were aware of this feature and I PM'ed you.
S

[rainbow422@aol.com]

Hi Abigail!

I am sorry to hear that your daughter is sick. RSD is one of the fun ones. Lotsa pain with no cure in site. There are a few things that she can do to lessen her pain. Avoid coffee, Tea and chocolate. These are stimulants because of the Caffine in them. Here is a site, that I passed to my husband. He said it helped him to understand. I hope it can do the same for you.

http://artzoo.com/health/print.htm

Gentle Hugs,

Rain :D