Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 04-25-2008, 02:52 PM #1
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Confused Please say it isn't so!!

I started noticing my left foot, ankle swell up and my Dr. was concerned, did an EKG right in the office. That came back normal. ok, he then wanted me to see a specialist.(Which was today) Now, my right foot ankle are swollen, but not as much as the left one. He felt my left leg and said, your entire leg, foot ankle is swollen, does it hurt to walk? Friends, It is PAINFUL to walk.THIS ALL HAPPENED TOO FAST!! Ok, I then get blood tests and xrays done(Had them both done this afternoon)My one dr. thinks it could be arthritis. I asked both Dr.'s why did it get this way so fast?? my family dr. said that is why he did the ex-rays and blood tests, as there are several types of arthritis. When I mentioned if this rsd is spreading, as it hurts in both knees, my hands swell, fingers too. It hurts(My hands so much also) they both acted like they didn't hear me!! Ok, he put me on some good support hose. Please, if anyone knows if the spread of RSD is gradual or fast, please let me know.Also, is arthritis a fast growing disease(Seems like in 1 week) I got all of this!! Help!! I am hoping it's arthritis, not RSD spread TIA (Thanks in advance) ~Love, Desi
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Old 04-25-2008, 03:37 PM #2
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I don't know your age but I will tell you about my mother and her acute arthritis, so you can compare.
It started off with a feeling of flue and slight fever, plus a lot of slime/coughing that would not clear up. It took time (about a year) before she was diagnosed with the onset of acute arthritis because she was 63 at the time and the acute form of arthritis generally affects young people, while the slower form generally affects older people.
The pain and swelling started in a hand, I believe, but did spread witin a matter of months to her feet, wrists and ankles. The rest would be like other stories about arthritis which would be in other places on this board, I guess. Did you look around?
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Old 04-25-2008, 04:01 PM #3
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Default Mine spread fast

Good thing is that the doctors aren't immediately chalking it up to RSD. It's well worth all the tests to rule out something else, especially if it's treatable.
I got RSD in both hands after Carpal tunnel release 2 years ago this July. The following January, after my second SGB, I literally went to bed with a slight burning on the soles of my feet and woke up with the pain increased.
I knew instinctively and by the way it felt it was the spread of my RSD but was sent back to neurologist by my PM for further tests.
They also thought arthritis, lyme disease, even tested for rare poisoning but nothing showed up...it's the RSD.
I tried the SCS about a month ago, it didn't work for me so I got a puppy He's the best medicine for distracting me from my pain
Good luck Desi...hope you get some answers soon
Jeanne
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Old 04-26-2008, 09:47 AM #4
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Hi Minymo!
Thank you for replying back to me. I am 53. I never had no symptoms like your mom had. none. No I didn't look around, I will now. Thanks again!!~Love, Desi.. aka.. Diane
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Old 04-26-2008, 10:09 AM #5
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Hi ya Jeanie!! How ya doing there, my friend? I swear, doctors, shrinks, nurses are very un educated about RSD. My shrienk thought it involved the jaw?? HA! HA! HA! I asked him, if he didn't mind if I left some pamplets with him, he said "yes" please do. So, I believe it should start with every single one of us, be it pamplets, things written out, typed out.. Let's ALL spread the word about RSD. When I got my blood work yesterday, the nurse started putting the needle in my RSD arm and I said wait!! I have to have blood drawn from my left arm!! I have RSD. She said, what's that?? I am sick of explaining, I believe we need to shell out pamplets to nurses too!! sorry Jeanne for rambling on here. LOL
Ya know, Jeanne.. Your so right on about the tests to rule out something else!! thanks!

Ok, so your the one who had the carpal tunnal release surgery(Like me) I sure hope and pray this is not going to my left hand as well, as this hand is swelled, hurts too!! I had the surgery Jan. 9,2007 So, it's been about a year since I got the RSD from it. My surgeon caught this fast!! I was in denial about RSD(At first, I did not know what RSD was) and then when I did, like I said, I went into denial mode. It took five docs and a specialist that only deals with hands and wrists to tell me it was indeed 100% RSD
I had 8 SGB and my PMD said.. no more!! As they did nothing!! Towards the end, it made my RSD flair so bad. The pain was awful!!
I will know about the tests on Monday, I guess since I had the ex-rays done and blood drawn late afternoon.
Awwwwwwww. So ya got yourself a puppy!! So, do tell.. what is his/her name?? I have three cats, all males. Frisky is 16 yrs. old (Poor baby, moves so slow these days, but my vet said he is doing well for a old cat) Then there is Sammy, he is 2 yrs. old and I have the baby, Andy.. he will be a yr. old July 4th. And just petting them, listening to them purr beside you is medicine. I still hurt though!! LOL Love ya ~Desi
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Old 04-26-2008, 03:24 PM #6
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Red face Please Say It Isn't So/ Reply

Hi: We haven't met yet. I just joined this group a few days ago. I have had RSD for several years now abd one thing I can tell you is it is unpredictable! It can move that fast or slow. It all depends on the person. My original site was my right hand from surgery.I have totally lost any use of it now plus 90% use of the left hand too.

My feet were fine, until I woke one morning after about 2yrs after being dx'd and I couldn't walk! Not 1 step without screaming in pain and falling down. Overnight;go figure. They did every test in the book. I went to a neurologist,orthopedist,several types of arthritis/bone specialists, oncologist and still nothing. MRI's, 20+ vials of blood (taken over several days), x-rays, everything. I hope your doctors do better than mine. I can walk a little now some days, with medicine additions and changes. But now it has spread to my jaw and other places.

Anyway, I hope you find a definitive answer. A diagnosis of arthritis isn't good either because there isn't a cure for that either. I have been getting treated for that. The drugs are dangerous. It seems like once you get a diagnosis of RSD, their is also a diagnosis of arthritis, back issues, neuropathy, and chronic pain syndrome. I saw my pain management doctors billing ICD codes and that's what he has on mine.

So, good luck and I'll be watching your conversation to see how it went.
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Old 04-27-2008, 01:33 AM #7
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Hi ya.. "new Kid On the block"! LOL thank you so very much for "The Good Luck's" That means so much!! Wow!! You sure have had and still are going through a lot! Wishing you all the best Matrix! Oh, and a HUGE welcome!!~Diane.. or.. Desi
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Old 04-27-2008, 03:50 AM #8
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Hey Desi,

I am so sorry that you are going through this. As if you haven't got enough to deal with.
I am thinking of you as always.
Love Tayla
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Old 04-27-2008, 04:16 AM #9
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Tayla!! My good friend, THANK YOU SO MUCH!! Your always there for me, I shall always be forever greatful for your nice and thoughtful reply!Thank you!! Love, Desi
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Old 04-27-2008, 08:21 AM #10
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Desi,

You really do deserve a break. Usually with arthritis, the onslaught is a little slower. IMO. There are blood test for arthritis. Most of the time it is the sed rate. I hope that it isn't the spread of rsd or arthritis. Wish there was something I could do to help. I'll be here for you tho.

((((gentle hugs))))))

Mary
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