RsD&bone loss?
 

I was curious as to others experiences with any type of bone loss associated with rsd. If anybody has this problem I'd like to know the time frame and extent of damage. I'm going on month 9 of my accident and my ortho has found bone loss on my x rays. So that sparked my curiosity.
Thank you and best wishes.

my doctor noticed bone loss from my xrays only a few months after onset. it was one of the first clues, as well as the pain of course, that eventually led to the diagnosis.

Hi Morgan!

I'm kinda glad you mentioned this, because I've been wondering the same thing. When I had my first bone scan, it was two months after my initial injury, and that's when they noticed I had bone and muscle loss.

p.s.- I was 1O then.

I couldn't imagine having this at 10. There is a lot to take in with rsd. I have an ortho, pain doc, physical therapist and psychiatrist. Aggressive treatment is what they told me. But I see pictures of others rsd and theyre swollen, my hand/wrist is scronny. Sometimes it swells. But i also have muscle loss. Best of luck to all and thank you.

Osteoporosis is an acknowleged result in RSD patients, As far as I know I don't have it yet but do have severe muscle atrophy, forearm has shrunk by an 1 1/4in bicep by 2ins.

I was diagnosed when I was 12 though, and I'm 15 now. It's tough, isn't it? And I'm the same way! I see all of these pictures where it looks like there's two limbs in one, but mine's simply teeny tiny. It's confusing. I never know what to think.

Best of luck! love &hugs. :hug:

RSD a multi system disorder.
 

Hello RSD friend, I am new here and scanning thru. God bless you for all you have been thru at what seems to be an early age.
Yes, your suspisions are well founded. RSD was originally called Sudeks Atrophy whereas post Civil War the wounded soilders were not healing and showing great signs of Atrophy. Dr. Sudek was the first to document this problem.
I am 21 years with RSD. I had one great doctor who educated me greatly on signs and problem early on in this new life. He would mesure me from head to toe every six months. My head included seeming so silly as I had a leg and foot injury. I have a 2.3/4 inch difference in the right leg or orininal site.

I was fighting a 16 year workers comp issue and needed all the help I could get to prove the RSD. I was in the dark ages and the system did not recognize RSD as a ligitament problem.
A foot doctor measuring your head? That surely confused the court system and had to recess that hearing till all the lawyers did their homework on the Atrophy issue. IT IS REAl.

:Ponder: Not only of the bone but muscle, and everything else that is in there. I have been Systemic for a long time.
My hat size has even gone down since.
I am getting older but this is not just age.
God bless n keep you strong.
Peace & LUV, Andrea. RSD from MARS with L.U.V. :cool:
Lending Unity for Victory.

Sudeks Atrophey and RSD.
 

Hello Friend, I am new here and want to say hi and best wishes. I am in year 21 of RSD. Mine was from a sprained ankle in 1991. By 92 I lost the use of my leg. But OH yes, it was all in my head. LOL.
The first US doctor to document this atrophey was post Civil War. HIs name was Sudek. (Might not have the spelling right) Re: rsdhope. American RSD.

Your concerns are founded, it does make a whole bunch of our body parts shrink, bone & muscle.
The old saying No Pain no Gain...not applicable for RSD.
I have worked at keeping my leg going with swimming and stretching. However the size continues to decrease. Just part oh the whole spectrum.

I wish you good days and please feel free to be in touch with any questions.
God keep you strong. Peace & LUV, Andrea :cool:
RSD from Mars with L.U.V. Lending Unity for Victory.

Atrophy
 

Hi kevscar,
It's so weird that this topic came up today.I was just telling my doctor that people are noticing how thin my legs are. The left leg is thinner than the right. I usually wear long skirts so nobody sees it. I have a triple phase bone scan scheduled to see where I stand (no pun intended). Iit's no fun to see yourself change is it? We just have to warrior up. Better days ahead. Hope your day gets better. I saw your mood was not the best today:hug:

Change, i've put on 4 /12 stone last time I checked can't do the simplest exercises, only go out for Hospital/Doctors appointments because evidently I'm ultra-hypersensitive aad I am one of the ones whose wounds may never heal.
I have been fighing the UK Government since 30/10/2010 to make them do something as based on US and Dutch figures we have at least 250,000 un/misdaignosed sufferers. The first e-mail that day went to the Prime Minister and deputy PM, finally got a reply from him yesterday passing the Buck.

hmmm.. I have atrophy as well despite the work outs I do to try and retain muscle. it is hard to see the atrophied muscles because of all of my swelling.
Now I have seen alot of pictures of edema in some other RSDers. and Mine is not the worst. my feet, legs, arms, and hands all look like they should (just much larger) the discoloration is in my feet (sometimes my legs, arms and hands get really red) but my feet are (mood feet) now when Im really swollen my feet are white, red, powder blue, blue, purple..etc but when swelling goes down they are black, brown, purple/darkblue. my toe nails RE BRITTLE, and rippled, and split if not constantly manicured. im sure you all know how much fun that is. but back to my point it is possible to not swell like others. I havent been xrayed in a long time but before I had my solid dx my orthopedic surgeon said I had a loss in bone density. then he sent me for first bone scan then neuro sent me for tri-phase nuclear bone scan and that is when they saw pooling deformation in the bone (in fact the closer you looked from hip to foot the less of the appendage showed up(almost like I had no bones in foot and ankle and part of shin.. I guess now they find it pointless to keep checking ..

I have atrophy and boneloss.you can see through my bones, despite extra calcium and vitamin d vitamins. My bone crumbled when theyimo,anted my scs. I really worry as I age how many breaks I'll have to deal with. I'm a giant klutz!! I've broken the first rsd foot (rt) 6 times!!!

wow.. have you mentioned this tendancy of klutzyness to your dr,s maybe you have an inner ear disturbance or something like that..6 times in the same foot . and it the RSD foot to boot. .As far as bone loss that is a lot. I think maybe its time I make sure I get another xray at the very least. I too am vitamin d deficiant as well as calcium. but all my others are good I wonder if it is RSD causing that. I have yet another question to ask my docs. good info to compare to thanks.

thanks for the giggle and new name for RSD
 

Yeah, you have the routine down pat!
I am new to this group and found your note of despair and humor. I am 21 years with rsd and have to say this is the perfect new name. I used to call it Real Sh---y Disease and after i lived past the first 12-17 years began to call it a Real Special Dsease. It is not a fun thing and adding government issues turns it into a true nightmare. Fought 16 years with work comp and 7 with SSD.
It was a time of nothing but doctors, lawyers and one Indian Cheif. He helped me by the way. Cheif Red Fox was his name. Good medicine.

I offer you my sincere sympathy in battleing these issues. I found I had to do most of the homework and stand my ground with my proof.
Best to you and remember---you deserve to get attention and help.
They deliberately try and wear us down knowing how sick we are waiting for us to throw in the towel.:mad:
Get mad if ya have to...but have your proof on hand to fight with...
What do you have to lose? We have already lost life as we knew it...:eek:
Hang in there and reach deep for inner strength.
I am a praying person and I am on my knees still giving thanks for strength and wisdom. An ear and shoulder are here for ya!

I lived in the commonwealth of Pa du:mad:ring my battle. I can feel for ya.
Hope to hear back. Peace & LUV, Andrea RSD reom Mars with LUV.
Lending Unity for Victory.:cool:

I have bone loss from RSD and it was one of the factors that led to my diagnosis...after nearly 6 years it was pretty evident to the doctor that finally decided to help me. What I am wondering is if anyone else with both RSD and bone loss experiences what I call 'lava bones' which really does feel like my bones are dipped in 'lava' or something similar to it. I relate this saying to the deep and intense bone pain on top of the usual hot and stabbing nerve pain which mostly feels skin deep. I take a certain kind of calcium that is supposed to absorb easier but the pain is still very intense and it's full body unlike my RSD. Should I be concerned about something else going on or is this kind of common after nearly a decade of living with RSD pain? I am not asking for any kind of concrete medical information just opinions or experiences that could possibly relate to this connection.