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Author Topic: RSD/CRPS/OSTEOPENIA...INFO ANYONE  (Read 6397 times)

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Offline Jo

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RSD/CRPS/OSTEOPENIA...INFO ANYONE
« on: October 04, 2002, 09:42:43 PM »
Hi Guys...

Been to the pain clinic this week..and I've finally got to the bottom of my pain..it would seem I have RSD/CRPS and Osteopenia?? Has anyone got any info at all on either of these conditions..I'm a little concerned with the RSD aspect of things as it's taken them 10 months to decide that's what's up and I'm told the longer it is left untreated the harder it is to bring it under control!!!  Would be very grateful for any info...   ???

Thanks in advance

Jo
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Jo-UK

TTT right knee October 01  RSD diagnosed October 02, Arthroscopy left knee Oct 04

Offline Heather M.

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Re: RSD/CRPS/OSTEOPENIA...INFO ANYONE
« Reply #1 on: October 04, 2002, 09:53:42 PM »
Jo,

Try going to www.rsdhope.org to get started on your research.

Don't know what the CRPS stands for, but osteopenia is slight thinning of the bone.  Basically, a precursor to osteoporosis.  I've got the same....it shows up in x-rays and is a hint that there's some early arthritic changes going on.

Hope this helps.  Also, check out the other RSD posts in this section, there were a lot of web links.

Heather
Scope #1: LR, part. menisectomy w/cyst, chondroplasty
#2-#5: Lysis of adhesions/scar tissue, AIR, patellar tendon debridement, infections, MUA, insufflation
#6: IT band release / Z-Plasty, synovectomy, LOA/AIR, chondroplasty
2006 Arthrofibrosis, patella baja
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Offline Helen

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Re: RSD/CRPS/OSTEOPENIA...INFO ANYONE
« Reply #2 on: October 04, 2002, 10:23:38 PM »
Hi Jo

Im in the process of being diagnosed with rsd and have found http://www.rsd-crps.co.uk/support.htm really useful for info. They also have an email group and a chat room thats usually occupied in the evening.

CRPS is chronic regional pain syndrome (I think) and seems to be a new name for RSD. If you do a search for RSD in google you will get loads of links back.

Hope this helps
H
04/07/02 RL - patella tendon realignment, LR and meniscus trimmed. RSD set up home shortly afterwards....typical.

Offline Cari

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Re: RSD/CRPS/OSTEOPENIA...INFO ANYONE
« Reply #3 on: October 05, 2002, 01:12:16 AM »
Jo,

I also have RSD as a result of a TTT..I had my screws out 7 months post-op but the pain never went away..I then had surgery on my tibia to fix the bone 2/01 and In June 2001 I was diagnosed with RSD.

I have many websites with tons of info on my pc at home !!!

If you send me a message with your email I would be more then happy to send you it all!!!

Take Care

Cari
open lateral release 10/85, various scopes 1994-1998 for debridement, medial release 11/98,  TTT(Fulkerson)& lateral release 11/30/99, screw removal 6/27/00, tibial repair 2/13/01, dx RSD 6/25/01

Offline LoriS.

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Re: RSD/CRPS/OSTEOPENIA...INFO ANYONE
« Reply #4 on: October 05, 2002, 02:21:42 AM »
Hi Jo!  I too have been diagnosed with RSD and that is following a TTT surgery. Now I have to say I'm finding this all a little too coincidental that there are many of us that have had the Fulkerson realignment and developed RSD as a result. I can only hope that this will mean that someone will get to the bottom of what from that surgery could be causing the disease. Anyway, I just wanted to say that I'm truly sorry to hear that you have RSD. Although it's great to finally be able to put a name and diagnosis to the problem, it takes on a whole other issue!  You are correct that the longer you wait to be treated and get help the worse it can become. If caught early enough they can actually put it into remission in many cases.  How did you get your diagnosis if you don't mind my asking?  What treatments have they started you on?   One of the best things you can do for yourself and your health in this is to get as many answers to questions you can and learn all you can!!!  If you have any questions please feel free to e-mail through the board here or post to me and I'll help you as best I can!!  Take care!
Lori S.
partial menisectomy 11/99; Fulkerson 8/2000; screw removal 4/01;  diagnosed RSD 3/02

Offline Shazinoz

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Re: RSD/CRPS/OSTEOPENIA...INFO ANYONE
« Reply #5 on: October 05, 2002, 04:56:12 AM »
Rsd and CRPS (Complex Regional pain syndrome) are the ame thing just different names. Osteopenia is mild loss of bone mass/density (not as bad as osteoporosis but still not good) osteopenia can be and is  in a lot of people part of RSD/Crps. I to have RSD (now known as CRPS type 1 or 2 can't remember , one is causalgia the other is RSD). But RSD is still the most common name for it but there are about 50 names to cover RSD :).
2 ACL 'reco's', 3 'scopes', Pain, JRA, EDS, RSD, CMP, osetochondral defect & #, synovitis, adhesions, nerve damage, foot drop, MCL damage, tendonitis, fibrosis, ligament damage AGAIN, dislocations +++

Offline LoriS.

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Re: RSD/CRPS/OSTEOPENIA...INFO ANYONE
« Reply #6 on: October 05, 2002, 08:42:10 AM »
I think this site would be helpful to all those on here with a number of questions about RSD!!!! This has been a tremendous help for me while dealing with all this and know it can help you as well. It  has A LOT of information on to sift through and by one of the leading authorities on RSD!!!!  www.rsdrx.com I apologize if I didn't hyperlink that right but it's short to type in and does an excellent job!! I think it is VITAL to be sure and have accurate and up to date information on everything so that you can learn as much as you can to better help yourself in all the decision making that goes along with having this.  Take Care - Lori S.
partial menisectomy 11/99; Fulkerson 8/2000; screw removal 4/01;  diagnosed RSD 3/02

Offline Jo

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Re: RSD/CRPS/OSTEOPENIA...INFO ANYONE
« Reply #7 on: October 05, 2002, 09:28:51 PM »
Hi all,

thanks to you all for your replies..I'll check out the web sites and see what they come up with..

thanks again

Jo
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Jo-UK

TTT right knee October 01  RSD diagnosed October 02, Arthroscopy left knee Oct 04

Offline Netty

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Re: RSD/CRPS/OSTEOPENIA...INFO ANYONE
« Reply #8 on: October 08, 2002, 07:12:47 PM »
Wholly smokes,
Sharinoz sounds like a professional doctor. That was great shaz. The knee guru might need an offsider. Sounds like you did a bit of research there, I never heard of any of it before.
By the way Jo, I see you like Garfield too :-), but I had him first  ;D. Good luck guys.
Broke the cruciate and damaged the medial and lateral ligs playing softball.Hammy ACl recon Feb 2000(failed).Hammy ACL recon Aug 01(failed).Medial repair and Lateral loop Dec 01(failed).Still unstable

Offline Shazinoz

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Re: RSD/CRPS/OSTEOPENIA...INFO ANYONE
« Reply #9 on: October 09, 2002, 09:28:30 AM »
Netty,
I have learnt to research by myself as I tend to get little or no help from my doctors. RSD is something I have done a lot of research on as I have had it for about 9 years now. By the way I did do some biochemistry, microbiology and nursing anatomy and physiology at college, and was a fully certified First Aider and Surf Life Saver. So I have a grounding in some things and am learning more by necissity every day (Especially on hypermobility and HMS/EDS at present)
2 ACL 'reco's', 3 'scopes', Pain, JRA, EDS, RSD, CMP, osetochondral defect & #, synovitis, adhesions, nerve damage, foot drop, MCL damage, tendonitis, fibrosis, ligament damage AGAIN, dislocations +++

Offline Netty

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Re: RSD/CRPS/OSTEOPENIA...INFO ANYONE
« Reply #10 on: October 09, 2002, 07:37:30 PM »
Sharinoz,
I hope you took my comments as a compliment.
You really help a lot of people out here. I have learned a fair bit since I busted my knee too, but only about ACL's and grafts etc. I had no idea about all this other dtuff until I found this site. So keep up the good work because I know theres gunna be lots more new people coming to this site in the future. See ya. Does the OZ in your name mean your from Australia too, I am, go Aussie
Broke the cruciate and damaged the medial and lateral ligs playing softball.Hammy ACl recon Feb 2000(failed).Hammy ACL recon Aug 01(failed).Medial repair and Lateral loop Dec 01(failed).Still unstable

Offline Shazinoz

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Re: RSD/CRPS/OSTEOPENIA...INFO ANYONE
« Reply #11 on: October 10, 2002, 04:17:36 AM »
Yes netty. I did take it as a compliment. And yes the Oz means Australia. I live in Canberra but am originally from Country Victoria. Nice to meet other Aussies on the Board. I have had joint problems since birth (AHHHH) just took me 31 years to get a kind of diagnosis (I am sure it is one thing but I can't get anyone who knows this side of the disorder to diagnose me so I live with the diagnosise of HMS instead of the EDSH that I am about 80% sure I have, most Overseas docs think they are they same thing, but not Aussie docs). It is sad to hear you have had ACL problems too, boy they suck my left knee has been done twice (1st patella in 1994, then hamstring in 1998) and now my GP thinks I have restretched it and fractured both ends part way out of the bone. I am to see the OS AGAIN in about 2 weeks, so I guess I will wait and see, I have been in a ROM brace or immobiliser since JUNE when I reinjured it (drying myself after a bath of all things, certainly a high risk extreme activity  ;D ).
Anyway netty nice to meet you and feel free to email or IM me anytime, so nice to meet other aussies (where in OZ are you? and does netty stant for Annette or Janette? If you are willing to say) I am Sharon by the way in case you hadn't guesses by the Shaz bit (all Aussies get that but most internationals don't (LOL  ;D )
2 ACL 'reco's', 3 'scopes', Pain, JRA, EDS, RSD, CMP, osetochondral defect & #, synovitis, adhesions, nerve damage, foot drop, MCL damage, tendonitis, fibrosis, ligament damage AGAIN, dislocations +++

Offline Netty

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Re: RSD/CRPS/OSTEOPENIA...INFO ANYONE
« Reply #12 on: October 10, 2002, 06:42:03 PM »
Hi Shaz,
I figured you were Sharn and an Aussie, not too hard to guess. Netty is for Annette but everyone just says Netty.My Gran was Janette and she got Netty too. Im 38
I just moved to WA down the south but lived all my life in country NSW, Hunter Valley. I've been really lonely since I left all my family and friends, so this has been a great site for me to meet all you nice people with dicky knees like me.
You said you had a hamstring and a patella graft done, what would you say was the better or worse of them. Ive had the 2 hammy ones done but the new OS in Perth thinks I need a patella one done and all Ive read about patella grafts, says they are a lot more painful to recover from. Im holding off on getting it done for a while because I don't have a lot of pain at all, just the unstableness. My mind tells me if they take the patella graft from me I could end up with all this maltracking that people here talk about. I have no trouble with my knee cap at all ans I think if they start cutting it up I could have worse trouble. In a way I was lucky, I never had any knee problems until I had the fall, so apart from ripping all my ligaments, the knee itself is in pretty good shape. So far, until this instability ruins my cartlidge.
Anyway, have a great day mate. Netty
Broke the cruciate and damaged the medial and lateral ligs playing softball.Hammy ACl recon Feb 2000(failed).Hammy ACL recon Aug 01(failed).Medial repair and Lateral loop Dec 01(failed).Still unstable

Offline Netty

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Re: RSD/CRPS/OSTEOPENIA...INFO ANYONE
« Reply #13 on: October 10, 2002, 06:48:02 PM »
Just a short note, I meant to say Sharon and when you get to the part where it says "thingy y", I must have written a no no word there as they put thingy in instead. What I put was a word for a little bird . D*cky with an "eye" for the *. So I had a D*cky knee. LOL, thats what I used to call my little chihuahua :-)
Broke the cruciate and damaged the medial and lateral ligs playing softball.Hammy ACl recon Feb 2000(failed).Hammy ACL recon Aug 01(failed).Medial repair and Lateral loop Dec 01(failed).Still unstable















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