What helps most with bone pain. My thigh bone on the rsd leg is killing me and I feel like I have tissue changes going on in my leg....Help!

Deb

Deb,

What type of pain medications are you currently on? Are you consulting with a pain management doctor? I've found them (by far) to understand CRPS pain better than most other professionals.

You may need a different medication, or a switch in medications.

HI Debbie, I had a very good orthopedic surgeon tell me that bone pain is actually some of the worst pain you can have. I have found heat to help, and also trying to stretch the limb. You may need to increase your pain meds too. Try to think if maybe you have twisted your leg or ankle in an awkward way that may be causing your pain. Also if you are wearing a new or different pair of shoes might do it. Lisa

Thanks for your suggestions...Nothing has changed- I only wear sneakers. The rsd is causing the bone pain and I was just wondering what meds help with that pain...

Deb

When I had RSD I had really awful bone pain--I think that deep, cold bone ache was about the worst sensation I had. I remember that heat seemed to help for me--either heating pads or submersing in a nice warm bath with Epsom salt. I don't really remember any meds that worked extremely well for that type of pain but biofeedback may have helped a little, as well as the TENS unit. When I would get really awful pain I would also try to concentrate more on the limb that didn't hurt instead, or another part of my body that felt "normal." I'm sorry you're feeling that kind of pain.

Dear Debbie -

The worst of my pain used to be the sensation that my feet were participating in a crucifixion: that spikes were being driven through the front of my feet, breaking apart the ankle joints. The Zometa (zoledronic acid) infusions, a "3rd generation" biphosphonate, entered my life and that all went away.

There have already been a few threads in this forum on biphosphonates in the treatment of CRPS. See, Biphosphonate infusion for RSD? (the FDA approved U.S. prescribing information sheet for Zometa is attached to my post # 4) http://neurotalk.psychcentral.com/sh...eta#post663177 and concern noted re long-term use of bisphosphonates, unclear what patients at risk http://neurotalk.psychcentral.com/sh...ghlight=Zometa
I will not repeat here a recitation of the studies on biphosphonates and CRPS that were included in the prior posts.

The whole class of biphosphonates was initially developed to treat multiple myeloma, by inhibiting the uptake of bone material into the blood stream that, if left unchecked, would contribute to kidney failure in short order. But what I really hadn’t focused on until now was the specific mechanism of action, which is interesting.

Essentially, our bone mass is kept in balance by two types of cells. Osteoblasts, which are responsible for bone formation http://en.wikipedia.org/wiki/Osteoblast and osteoclasts, that removes bone tissue by attacking its mineralized matrix and breaking up the organic bone, a process that is known as bone resorption. http://en.wikipedia.org/wiki/Osteoclast As the osteoclasts “digest” the mineralized portion of the matrix, calcium and phosphate ions are absorbed into the cells and eventually are released into the extracellular fluid, and from there into the blood.

While the mechanism of biphosphonates is not entirely known, Zometa is thought to inhibit osteoclastic activity in two ways. First, through a process called apoptosis, aka programmed cell death, it actually kills osteoclasts through the fragmentation of its nuclear DNA. Secondly, it appears that Zometa also blocks bone resorption by binding directly to the bone surface.

Two quick observations. Biphosphonates entered the world of RSD patients the same way as (since discontinued for our purposes) Thalidomide: they were being given as treatments to multiple myeloma (MM) patients who happened to also have RSD, when it was anecdotally noted that a number of these patients saw their RSD suddenly improve. Now, at a personal level, a careful review of my blood work – beginning about 2 years into my CRPS/RSD – revealed an abnormal protein spike that was later diagnosed as Monoclonal Gammopathy of Uncertain Significance (MGUS), a necessary but not necessarily a sufficient condition for subsequently developing MM, with an average annual risk of “progressing” of 1%. With that background, I couldn't help but wonder if it was purely a coincidence that there was something of a stock of “co-morbid” RSD/MM patients, in whom doctors could see the effects of their MM medications. That said, in discussing this with my hematologist, it's clear that a basic understanding of some of this stuff is going to be beyond me, and the best I can do is hope that someone can clearly show whether we can in fact connect the dots, and then is able to get the results published, especially if the question of any relationship between the two conditions is answered in the negative.

Second point, as soon as the osteoporosis community – and those concerned about acquiring osteoporosis - heard about biphosphonates, they ran with it, and in large numbers. Hence when some unexplained thigh fractures started showing up, it concerned a great many people, leading to the most carefully couched “black box” warning I have ever seen. http://www.nlm.nih.gov/medlineplus/d...s/a605023.html

Now, the stuff has some known toxicity issues, but its pretty clear that much of the fear, especially that it would lead to thigh bone fractures has not been supported by recent studies. But one thing is clear, PEOPLE IN NEED OF SIGNIFICANT DENTAL WORK, E.G. TOOTH EXTRACTIONS, ROOT CANAL, ETC., OR WITH ANY RENAL (KIDNEY) IMPAIRMENT CANNOT USE ZOMETA. By example, the first time I got an infusion, my pain mgt. doctor required a "dental clearance" letter from my dentist, that I was in overall good dental health: the downside being a charming condition called "jaw necrosis," which is just what it sounds like. Similarly, unless your kidneys are in good shape, it can cause some real damage. As such, for each and every infusion - which I now need only once a year or so - I have to have a metabolic panel drawn not more than 10 days before the scheduled infusion, and if there would be any significant elevation in my creatinine level, there would be no infusion.

And as far as the risk of fractures is concerned, that may be best answered by a recent epidemiological study out of Australia, which showed that as the number of prescriptions for biphosphonates in the Australian Capital Territory (Canberra) dropped by 14% between 2007 and 2008, in response to concerns about fractures, the level of hip fractures rose significantly! Bisphosphonate use and hip fracture epidemiology: ecologic proof from the contrary, Alex Fisher, Jodie Martin, Wichat Srikusalanukul, Michael Davis, Clinical Interventions in Aging, November 2010 , Volume 2010:5 Pages 355 - 362, ONLINE TEXT @ https://www.dovepress.com/getfile.php?fileID=8159

Bottom line: unless you know you would be excluded due to dental or renal issues, I think it’s certainly worth discussing Zometa infusions with your physicians.

Mike