Hello all.. I am new here but boy have I learned alot...My most recent concern is a deep sharp..hot pain in my hip when I sit just right.. it jabs me and burns when putting weight on it.. just right.. I find sitting down to be a bit of a challenge as my RSD is worse in my rt. leg but now this is my lft. hip... it makes me strighten my body out with a quick sreatch...but the soreness is always there. It is so hot that I feel the outside of my pants immediately and it is on fire.. Does this sound familar to anyone? My PM/RSD Dr. has recently confirmed that it is RSD... I was told by my PM/RSD Dr.that I have the most aggressive form of RSD he has ever treated.. I am sorry cz that you are experiencing this.. I know it's scary..just rememeber.. you are not alone!!!

Dear CZ -

I found that the best thing for "deep bone crushing pain" in my ankles has been periodic infusions of Zometa, which has made it go to 40% (or less) of what it once was. That said, it hasn't done anything to speak of for the constricting pain in my ankles, the burning pain and tightness in my feet, the sense that my toes have been worked over by hammers or crampping thought my legs and, sometimes, body. But, the deep bone crushing pain was the worst thing I had going, bar none.

Zometa (zoledronic acid) http://www.nlm.nih.gov/medlineplus/d...s/a605023.html is an improved version of the Pamidromate which has been shown for some time to provide relief from CRPS. See, "Efficacy of Pamidronate in Complex Regional Pain Syndrome Type I," Robinson JN, Sandorn J, Chapman PT, Pain Med. 2004; 5:276-280, full text at http://www.rsds.org/2/library/articl...e_Robinson.pdf The big difference between Zometa and Pamidromate, so far as I understand it, is that the Zometa can be infused through an iv line in 15 minutes as opposed to Pamidromate's 4 hours. [Note: Zometa should never be used be anyone in need of "significant" dental work where it may lead to "jaw necrosis." Accordingly, most good pm docs require pre-clearance from a dentist.]

Unfortunately, in it's FDA approved use, to prevent the uptake of bone material into the bloodstream, primarily associated with multiple meloma, it's dosed at approx. 5 ml. On the other hand, for CRPS it's given at I believe 60 ml. This has been used of late as the basis for my insurance co. to deny reeimbusement for it's use (at approx. $900 every six months) after three years of no questions asked coverage. The matter is currently on appeal, so we shall see what happens.

Finally, for a recent "review" article on the use of Biphosphonates - the broad chemical name for the group of drugs - which has the feel of a "work for hire" (and because it's published in Europe there are no manditory disclosures of "competing interests") see, "Biphosphonates for the therapy of complex regional pain syndrome I—Systematic review," Brunner F, Schmid A, Kissling R, Held U, Bachmann LM, Eur J Pain 2009;13:17-21, full text at http://www.rsds.org/2/library/articl...d_Kissling.pdf. The article goes so far as to question the use of this therapy because it's not in the "current" (1998) guide to consensus practice that predates all but one of the four studies that have found this class of drugs useful, and then suggests that one should never rely on a "mono-therapy" in the treatment of CRPS when the Robinson article - above - makes just that same point!

I hope this is useful.

Mike

Mike, thank you so much for this, I have never heard of this treatment and wil activly research this with the sites you have provided. My pm is very familar with rsd and offers many types of infusions in his office. WE just discussed the ability for him to provide manitol for me via iv for edema in his office, so I know he would provide this for me if he feels I am a canidate. I do have a great deal of trouble with pain in my teeth, the trimengal(sorry about my spellling) nerve, so i do not know if that will be a factor. thank you again Mike. I will post the out come. I see my pm again in 2.5 weeks. Sincerely, cz

Hi, I am so sorry about your hip pain, and thank you for your kind thoughts. I amnot sure what your PM means by and agressive form of rsd but he must mean yours is spreading quickly and I am very sorry to hear that. May I ask how long you have had rsd and where your orginal injury was. thank you an d God bless, cz

cz -

Here's the link to the current FDA approved prescribing infirmation sheet for Zometa: http://www.pharma.us.novartis.com/pr...pdf/Zometa.pdf
The discussion of "Osteonecrosis of the Jaw" appears at Section 5.4.

Also, please bear in mind that because of a risk of renal toxicity, as measured by increases in serum creatinine (Section 6.1) periodic and very basic metabolic blood panels are required while you're using the drug. Good luck!

Mike

Hope you are doing well today..another RSD day behind us!! I would love to share with you in saying that my original injury/surgery was with my rt. knee..it was always a problem knee and finally needed a laterial release done to my knee cap... The date was June 2007 when it was operated on..the 8th and I was diagnosied RSD on the 26th (my 45th birthday).. so I have had RSD for two yrs + now..aggressive term to justify the rapid movement of my condition..originally began in the rt. knee.. rt leg/foot in 2008.. left leg/knee in 2009.. left. hip and jaw, the jaw is painful with a "halo", 'shadow" around the root of my tooth... go figure!

Bless you too.. I understand your deep bone.. I am really sorry that you are enduring that also..it really makes you stand up and take notice...

Hi CZZ74. I too have deep bone pain, it is probably my most constent and worse pain, at times it is worse than the burning. Mine is in my femur and hip mainly, but at times it decides to affect my knee and tibia....Oh joy! Anyway. The best way I know how to decribe it is like my bones are in a vice while many tiny electrical currents are "zooming" up and down my leg. That's when it is acting up...but for the most part it's a dull, achy, annoying pain. I haven't found too much that makes it feel better other than rest....but I have to sit in a recliner with my feet up and it reclined. If i sit for too long my whole thigh and groin begin to burn while my foot processeds to falling asleep and going ice cold. It's kinda wierd...having the top half of my leg on fire while the bottom half is frozen....bet a physicist would have a field trying to explain that one I just try to manage the best I can and keep moving when I can't sit and relax...I also try humor, it tends to help me cope with things. Hope all goes well.

Hi Keep Smiling'

I have had excruciating hip pain in both left and right hips..it seems to rotate from one side to the other...I have been limping for a long time now.. ankle/foot injury 2006..surgery 2008 and it's taken it's toll on my lower back and hip..
I visit my chiropractor at least once a month for other back issues and she said I have a huge problem with the sacro-iliac joint due to lack of excercise and (very) irregular gait.
Also the periformis muscles contract, and, as a result, constrict the sciatica nerve causing havoc in the lower hip and all the way down the leg (terrible burning feeling)

Not sure if you are an advocate of chiropractic, but you might want to give it a try.. After her adjustments I feel a vast improvement in the hip area and welcomed relief!!
Take good care,
Hope4thebest

I often simply tell people, (or ask, if I suspect someone has, and is trying to describe RSD, and they're not yet diagnosed), that my bones feel as if they're on fire, while my skin feels as if it's in a blast freezer.

Being around so much of the public as I have, I've sent at least a dozen people to doctors, and given them RSD info. It solved their "searching for an answer", which so many of us know so well....

I got to know that "look on the face", and when they mentioned pain all over, or one spot, I was able to zero in. The thanks I've gotten are sweet, but sad....

Pete

Hi guys..
I've never posted here before but I googled some symptoms and this site came up!.

I'm 20 years old, female, I've been having SEVERE bone pain in my right calf, it's been happening for years and I've always thought it was too minor to see a dr about.

It's not constant.. I get it about once a week and it never goes away on its own, I usually take codeine to help it... I'm positive it's not muscle pain as its all located in the front of my calf (the boney part)

It sounds like whats been happening to some of you.. I always in the back of my head assumed it was bone cancer but thought that was silly and never saw the dr about it.

maybe you can offer me some advice. does this sound like what some of you have? How often do you get it?

thanks for any help!
Stephanie