Bones Being "Eaten"
 

Yikes. I had a horrible appointment last week. I have been having joint pains so naturally went to see a rheumatologist. This Rheumatologist said right away in my appointment that I did not have RSD or Severe Small Nerve Fiber Neuropathy. Sorry Mr. Ego Man, past testing has verified both of these. He also said I do not have arthritis, Rheumatoid or otherwise.

I pointed him in the right direction of the records in my chart proving both of these and he agreed with me and then said I had a really bad case of RSD. (thanks). I'm not currently flared up so he was sort of rude about it in general. Okay, I wasn't flared that day, I am this week. So he pulled up a bone scan from 2008 and said "Well, there's your problem, your RSD is "eating" your bones". Right, that's not exactly accurate or relevant to what is going on now.

So I have a question after all of this. I had that bone scan done when I was significantly flared up. Does disease progression cause additional bone "wasting" and would a follow up scan be the right route to go? Obviously I need to find someone other than this guy to order it and no one currently follows my RSD or SSNFN.

I left with the diagnosis of "Diffuse Pain Syndrome caused by SSNFN and RSD" - I can't even tell what that is. Diffuse Pain Syndrome looks like Fibromyalgia. Is that what he is saying? If so, it's not accurate.

Do any of you have joint pain? Is it RSD? Is it something else? Mine is in my hips the worst, then my fingers, shoulders and metatarsal bones (in order of severity). What do you do for it? Is it something physically deteriorating or false pain signals? I'm so confused and angry at the dismal help.

Hi Theodora,

Sorry to hear about the crummy appointment. Sounds like he is not your man.

Do you have a GP or even ob/gyn who might be willing to take a look at your bones overall? Osteoporosis is a real and common concern with or without CRPS. This can be accomplished with a DEXA scan and is not an unreasonable thing for a woman with bone issues to get. This will screen for bone density and let your doc know if you might benefit from something like biphosphinates. I don't know if a triple phase scan at this point shows anything, I have read that is more accurate acutely. Info on skeletal issues and CRPS can be found in this article. I wish it were more upbeat...


http://rsds.org/wp-content/uploads/2...ns-of-CRPS.pdf


:hug:

Hi Theodora,
I am sorry also for the bad appointment. I have joint pain and swelling in several different joints too. Before I was diagnosed with RSD I was referred to a Rheumatologist at least 5 times. They threw around different arthritis diagnoses including RA, and then they turned toward diagnosing me with Lupus. The Rhumey appointments were always clear as mud. I am so interested in what they tell you. I have wondered since being diagnosed with RSD if there was a compounding problem in my joints. Please keep us informed if you continue to search this out. I hope you get answers soon!

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[QUOTE=Theodora "Well, there's your problem, your RSD is "eating" your bones".

I personally had my ankle fracture due to rsd/crps. The ortho I went to see, at first glance, said my ankle was sprained. After the xray, he was like yup yup it's broken. I mentioned no medical understands my pain. He was quick to say that he understood and recommended pain management. Guess what was in my records.....I fell......
So I understand you bone pain due to crps and the medical personal non agreement.
I had to find a neuro who gets it. I will see for sure at my follow up when I talk about fractures and dissolved teeth.:grouphug:

Thedora,
This is one complicated illness with so many different symptoms it's hard to tell what is CRPS and what is not. I do have joint pain in my ankle (possibly origional injury at least partially), knee pain (this is said to be CRPS) and hip/low back pain. I had a bone scan about two weeks ago and I have osteoperosis on the crps side. Is this because of the CRPS, age and other risk factors or all of the above? The bone scan that Little Paw was talking about can check for osteoperosis. I have received a referral to an endocrinologist and will start biphosphate treatment soon. I don't know if that answers your question or not. It's very hard to figure out and the confusion within the medical community does not help~mac:confused:

Bisphosphonates?
 

Because of my age and other factors I seriously considered taking a bisphosphonate, but after researching I decided to delay. My stomach has been a crazy mess since CRPS started, which is one of the reasons I want to eventually eliminate neurotin. The fewer drugs the better.

If anyone has a successful no drug bone building regimen, please share it.

Bio,

My GP that ordered the bone scan and is referring me to the endocrinologist has suggested iv bisphosphonates because I do have stomach issues that were present long before CRPS. She does not feel like I can tolerate the oral meds. Have not met w/ endo so I don't know how this will all play out. Just a thought.~mac

Mama mac,

Go for the IV. I could not find anyone willing to do this for me.

rsd can cause bone wasting. i have had rsd for almost five years and have suffered bone wasting in my hips (osteopenia) and in my teeth (lost five teeth) and in my initial rsd site which is my right wrist, hand, fingers, elbow and shoulder. rsd can also cause atrophy which i have in my original rsd site and right foot and toes. i take vit d to bring my level up to try to strengthen my bones. i am not a dr but if i were you i would ask them about ways to try to strengthen your bone. soft hugs.

Over the past several months, I have had several X-rays and CT scans that have revealed that I have a generalized osteopenia in the original site. All of my scans have been limited to my right ankle and foot so I do not know if it goes beyond the original site or not. My orthopedic surgeon does not think that it is related to CRPS and my current PM thinks it has to do with lower hormone levels. I am not sure if either are correct or not but from most of what I have read, including several older posts here, CRPS/RSD most certainly does cause bone wasting. I appreciate what everyone here has written on this, giving their experiences and knowledge with how they have gone about dealing with this.

Theodora, I am a little late at coming into this conversation as I have not been feeling all that great over the past several days. I am sorry that you have had such a bad experience with your recent visit to your doctor. I hope you are able to find one that you can agree with, actually does know how to read a chart and is willing to read it, and will listen to their patients. Everyone here has given very good information. I hope they have been able to give the answers to the questions that you have asked.
:hug:
Alaina

Thank you for the responses!

I just checked a Calcium and Vitamin D and have finally brought both of those up to where they should be. They had been kind of low.

I do break a lot of bones since the RSD started. I also dislocate or tear tendons a lot due to the hypermobile part of it. (My original RSD Doc says hypermobility caused my RSD).

I guess I never put these things together in my head to blame it on the RSD but I too find it difficult to say where it stops and something else starts.

There was one very good RSD Doc here when I was first diagnosed - he was neuro/pain. Everyone else now seems to think I'm some hypochondriac so I'm afraid to ever bring anything up. When I do I'm dismissed immediately and they treat me like I'm loony. I don't even visit the Doctor for broken bones anymore. They seem to think I'm a nut but I don't even complain about the pain very much. I don't seek meds - in fact, I never take them and say thank you, but no thanks. I don't know what else to do. Maybe being hooked up with a decent Doctor would solve a lot of my problems?

Sadly my experience was the same as yours....the medical profession can't answer our medical situation thus we don't have one ....:eek: Getting a decen doctor does help; especially to keep us sane after hearing we are crazy....but what you are doing...being your own advocate is very important too...continue to get informed and please continue to share your journey.....:grouphug: