I was seeing if there are anyone on here or anyone who has experienced bone death or know of bones dieing and if RSD could be the cause. I have been diagnosed basically in all major joints along with my femurs and tibia that my bones are dieing because Iam not getting blood flow to them and I was just wondering since RSD causes blood flow issues if it could cause something like this. I have severe full body and internal RSD and I know how RSD affects blood flow a lot and wonder if it could cause blood flow to the bones to be impeded. the diagnoses I have is Avascular Necrosis, or Osteonecrosis which is how I described above I don't have blood flow to my bones and its just getting worse. First the doctors thought it was from the prednisone I had been on for my sarcoidosis but with it moving so fast and going throughout my body my doctor asked all the other orthos in the hospital and they all believe that prednisone cant be the primary cause that there must be something else going on that is making it to where I am not getting blood to my bones so they die. If anyone has had something like this or if anyone else has heard of this and whether RSD could or couldn't do this any info would be greatly appreciated. My bones are just falling my doctors already have broke the news with all my conditions my body is slowly killing me or dieing. Just has to be slow and painful right. Anyway any info would be great. Thanks

Samantha

My bones started to demineralize so much so that multiple radiologists could not see if I had a fracture. This is the primary reason I started to take LDN three weeks ago.

Prior to this I also took Dr.Christopher's bone and tissue capsules which obviously did something, because my last X-ray showed, before I took the LDN, that there was new bone. I was not weight bearing at all.

In between taking the capsules and the LDN, and after the xrays I started taking organic gelatin. I know it is doing something, because my nails are strong and my age spots have faded significantly.

IMO the LDN has done the most for me.

I know mine is not the same as your situation, but I thought you should have the information so you could research LDN and the Dr. Christopher's product.

In nearly 6 years of research I have never heard of RSD causing blood flow problems, in fact if you check any of the major sites AmericanRSDHope RSDSA NHS it is not on the list of symptoms. What can cause them is bad treatments, Ice or Hot and Cold Water Contrast Therapy

There have been many posts here on the RSDF/CRPS forum mentioning bone density , bone thinning etc- If you use the search tool they will come up for you.
http://neurotalk.psychcentral.com/search.php

Hi Samantha,

I am so sorry that you are having to deal with the bone issue in so many areas. I imagine that would feel frightening and out of control.

a quick search of AVN revealed that in half of patients it presents in multiple areas, so you are not alone in that. There were additional causes besides steroid use long term. Trauma, lupus, perhaps other autoimmune issues even can contribute.

I did not find any relation between CRPS and AVN, even in a rather thorough article by the famed Dr. Schwartzman from 2012 entitled "Systemic Complications of CRPS". There are however, obvious similarities between high levels of bone resorption in CRPS and the bone loss caused by AVN. It would probably be a real challenge in a patient with both to determine what was really happening.

CRPS does cause measurable blood flow changes to the skin because of faulty neuro vascular coordination. Since joints are innervates and have blood flow could that be affected too? That is a good and valid question.

Have your docs recommended any bisphospinates? These are indicated for both conditions, though they have an occasional adverse event of AVN in the jaw. Go figure!

I hope you rest well and find answers soon.
Sending hugs and healing love,

Thank you everyone for your comments BioBased I will look into the LDN product.
I will look more on the forum of other with problems with bones thinning.
My doctors before they do surgery want to find out what else could be causing it at the moment Iam looking at 5 surgeries 2 for the hips, shoulders, and putting a rod in my femur. My ankle already collapsed and that was repaired but they don't want to do any surgeries until they know if there is another cause because if there is and they did surgery not knowing it could be for nothing if they fix it and then bone under that dies too. I was told to find a hematologist but yet haven't found one that deals with bone issues, so Iam going to see if my rheumatologist could do all the tests that the other specialist would do to find the disease in blood that causes no blood flow to the bones. For some reason my left side is breaking down faster then the right which they cant explain as I am right sided and would think using that side would make it go faster. The surgeries are going to be tough but my RSD doctor has already gotten me through 5 other surgeries doing anything to keep me out of pain ketamine is always the must and then either block, epidurals, even ketamine comas if needed along with my main pain meds just given higher dose and more often. Iam thankful for him cause without him my bones would be dieing and I would have options for surgery with not having someone to help with the pain.
I just though I would ask the question of RSD causing blood flow issues to the bones as I know it does it to the skin and limbs like in the thermograph you can see where the blood flow is weak making them cold, so just wondered if it could go as far as the bones. Once we could figure out if there is another cause to my bones then we can work on starting surgery after surgery, starting with the hips.

Thank you again everyone all the help I can get to figure this out sure helps
Sam