Hi there guys;
Just wanted to confirm with you guys that RSD has a different type of pain than other issues..? I had a knee replacement 2 years ago and then came down with rsd in the same knee. My knee still has not healed - opened it up last year for excessive scar tissue but still will only flex around 35 degrees. I had around 5 lumbar blocks that only lasted about 6 hours each. I know RSD has a large portion of problem with my pain - but feel strongly something else is wrong and have been trying to find another dr to help me. I just had a bone scan done and my knee was glowing. The radiologist stated either infection or loosening of components highly suggestive. I went back to the new dr and he stated you just cant believe 100% the bone scan. I tried to tell him that I have my RSD pain on the inside portion of my knee and it is so different than the other pain I am feeling in my knee. He looked at me like I was halfway crazy. He kept stating that any opening of the knee could stir up the rsd. Like I don't know this? Last year they (another dr) opened my knee up and was very cautious regarding the RSd and it didn't flare at all. I realize that having rsd and surgery is a fairly cautious thing, but he is stating I might want to just "live as I am right now" the rest of my life because opening it up might stir up the rsd. If he could live in my shoes 1 day - he would rethink that thought! Just wanted to check to see how you guys distinguish between your RSD pain and other pain.
Well, gotta go. My youngest daughter (11) came down with the swine flu this weekend . Her temp went up to 104 - now down to 102 - but she is feeling really sick. I feel so bad for her - she missed halloween and now will miss 6th grade camp for 1 week. Watch out there for it and be careful! Thanks for listening.

My RSD started in my foot. It was only in my foot until I had a hip replacement. Then it spread thru out my body. I would really proceed very carefully before having any more surgery. The pain in my replaced hip is different from the RSD pain. The hip pain is more like stiffness and feeling the prosthetic. The RSD pain in more nervy - shooting - temp changes -muscle wasting etc....

Hope this helped

Debbie

Lindkaye,

You're completely right. RSD pain is like no other pain I have felt before.
I was T-boned by a semi tractor trailer, and had a passenger in my truck, next to me. So I was kind of crushed between them. (fortunately, I saw that the truck driver wasn't even looking, and I told my rider to hold on, he threw his arms up around our heads!! That probably saved our lives!) The last thing I saw was that Freightliner's headlight, and I'm fairly certain I took it out with my elbow / blocking.

I was a very hard working self employed master plumber. Digging, burning myself, cuts, bruises, migraines, were all normal to me.
The next day I woke up, I knew something was seriously wrong.
It felt like someone had wrenched my spine out of my tissue about an inch.
Just a tearing, ripping, burning pain!

If you haven't felt it, that's great, but even most doctors don't get it, they think 'pain is pain'. It's not, not when it comes to RSD!

Live with it?
You may hafto.
But, you will need a team of doctors, who will help you manage it.

Your Meds, your doctor. (Neuro) hopefully.

Your Mood, find a psychiatrist, personally, I don't trust PM doctors unless they're psychiatrists.
This will help you to "heal" that part of you, and get out of the 'woe is me' syndrome sometimes. (find one with a sense of humor).

Your body, excercise, if you can't get out because of the climate, find a warm pool. Use it or lose it..

I wish you the best, as always!

pete

Hi Lindkaye and welcome to NT,
I'm so glad you found this wonderful and comforting forum. So many great friends here that we can relate to and learn from each other. About 14 years ago I had surgery and immediately after my left should froze up. It was rsd, but wasn't diagnosed for 4 years. It took a lot of physical therapy to get range of motion back. And it went into remission, but the therapist warned me it might cross over to other shoulder- and after a year of remisssion, it did cross over to other shoulder. I now have full body and internally. In my opinion rsd is different pain from other kinds of pain.There is a great website rsdrx.com that is good from a retired dr. the puzzles list has 146 questions and his answers. very informative. rsdsa is the national sit for rsd.there is a place for your zip code and you'll receive a phone number and name of nearest rsd support group. It sounds like you need a rsd dr. with experience.
I, personally, would be very scared of surgery because spread. It's not a good thing to face.
I hope your little girl is recovering from the s flu. It's good you caught it early. Take care, loretta soft hugs

What a question.

There are so many different sorts and locations for the pain and they tend to move around especially over the long term. Arthritis pain morphs into RSD pain and slowly goes away only to come back as arthritis pain or something else. I've had polka dot pain so have come to believe almost anything is possible.

The RSD does have a couple components which might didtinguish it from other pain. The areas affected sometimes feel like dead meat. It usually doesn't hurt at this time but sometimes it feels like an anchor or a weigh depending from me. My pain is best described as a crushing/ hot pain like a bus with hot tires is parked on it. But this pain can become a small component of other less similar pain.

Everything just keeps changing and I'm so pessimistic when I hurt and sometimes revert to my natural optimism when I don't. Triggers keep changing but it seems I'm always doing less and less and this really hurts.

Wow someone I can talk to about R.S.D in the knee... I had a tatal knee replacement and I have R.S.D from sugery... I told my doctor in grinding in the knee was gone but the pain and swelling down the side of the knee and in the back of the knee is still there.... And now it moved to where a cyst is in my wrist, but they wont do surgery because of the R.S.D. Well now it is in my shoulders and this pain is close to the worst I can't sleep. lift, this hurts if the wind blows on me..... But if you need to talk let me know, Had all the nerve blocks and injection there is.... I hope your daughter feels better soon..............................