Who Else? Severe Bone Pain
 

Hi everyone, this am like many, I awoke with severe bone pain in my left shin, tibia. to the point that any weight on the bone could make me feel like i might black out. I am curious if anyone else experiences episodes of extreme bone pain, not continuous aching, not muscular, but deep dull bone pain, mine become sharp only if I go to bare weitht on it.

This same type of pain is why when during the first year when i was undiagnosised -i thought it must be bone cancer. this today was in my left leg, orginally it started in my original injury leg the right.

Im not sure i have this severe of bone pain any where else except perhaps my spine and that is hard to distinguish as I also have such severe buring in my back as well.

If you do have the bone pain, pleaes describe best you can,, what you do for it, other than wait it out, and how severe it becomes please.

The frequency of my bone pain attacks is increasing each year.
Does anyone know any medical reason for the escalation?

thanks so much cz

I have severe deep bone aching pain... feels like my bones are being twisted, the pressure is so intense it feels as though my bones are being stabbed by some large hot fire poker.

I often describe it as my bones feel like they are going to explode at any minute.

This is a terrible to pain to have... I don't know what causes this..I'm sure my doctors have told me but I can not remember.

I told my doctor that it's true that RSD hurts completely to the bone... 100% from skin through muscle, tendons, ligaments, blood vessels, and bone.

How much more pain can we take??? What is going to hurt next??
(This is a constant thought for me...)

I hope and pray your pain eases soon.
:hug:
Abbie

What you're describing is exactly it. Definitely!
Then again, nerves go all over your body and are attached to practically everything, blood vessels, muscles, bone, ...

That's me.

The intensity of my pain varies. But I basically always hurt. If I use my arms for anything too strenuous (heavy lifting, pulling, digging in my garden, raking, etc) my head hurts. When I start to build a tolerance for my meds my pain increases dramatically until the strength of my meds is increased accordingly. Or when my PT massages my head (he only did that once, thank God!) or tries to desensitize it it hurts a lot more also. I am also very weather sensitive. Other parts of my body are extremely painful, but I feel its the pain in my head that really disables me.

Sandy

Hi CZ
Im sorry to hear this,,I had a a THR 4/13 of this year,ive had severe bone pain in the hip joint ever since,,it has to be coming from behind the acetabular[cup] because the hip is ceramic,,i dont know or my dr,if its rsd or the cup is loose[has failed] the exray shows it in place but that doesnt mean its not loose[its a pressed fit and not glued],,,but ever since the day of the operation,im still on crutches because of debilatating pain [in the bone],,,we keep postponing the revision ,waiting for God to heal me,,,and another opeartion could be catrostorphic even with a continous block,,so im stuck in between a catch 22....what sandy just said makes since,, my body will grow a tolerance level of the pain meds and acually increase my pain,,if i lay off the meds for 4 or more days ,the pain levels come back down,,,,,,,,,,and abasaki,,im so sorry for the pain for which you are induring,,[we have spoke before],,,i wish you and all a miracle of healing from jesus our lord,,,,,,,,,,,,,,,,,much love and concern,,,,,,,,,,,,,,,bobber

Lava running through my bones :(

Abbie, thank you
 

Abbie, thank you. When you wrote-"What is going to hurt next How much more pain can we take??" I have said this , feft this and cried this question so many times. This is the despair bone pain evokes.Thank you so much for sharing this, cz

Bobber
 

Bobber, yes we have spoken before - I am so so sorry for your continued pain you are truly suffering having this bone pain 27/7 in your hip, I feel so badly for you. Mine, thank God, has never lasted over 3-4 hours in one limb.

The combination of this posts really allows for the articulation of this pain for me, lava in my bones(from Sandel). is so expressive for my type of bone pain." the way that you feel you master controlling one area either with meds or mentally and just as you do it moves to a new area to torment.", this is so true.

And the ever present question of how much more pain can we take?? As Abbie wrote above, I have asked this of myself over and over again when i have this bone pain which I consider to be the most devastating pain form of rsd ,so far.
I hate to say as - as soon as I think I have faced the worst a new terror arrives.

God bless to all and thank you so much. CZ

shoulder & arms
 

that how my shoulders and arms hurt so bad the bones

so sorry for your pain
 

rsd31 so so sorry for your pain, does anything help you with the pain?God bless, cz

I gotz it...!!
 

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!!!:o

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

Thanks Mike, this is new to me.
 

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

Thank you smilelin
 

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

Hello cz..thank you for your blessings!!
 

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...:(

the hip bones connected to the...thigh bone...
 

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! :rolleyes: 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 :D 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. :Popcorn:

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

Pete I know exactly what you are talking about, especially the freezer blast with the fire inside, also I see the glazed look on many peoples faces when I am trying to explain my pain, im not sure if that is what you were saying, but have you ever noticed that, they just kind of go away. thank you for sharing this, cz

Hi Stephanie, thank yoiu for posting, mine does not stay all the time either, you have described yours as so much like mine, and i am very sorry you have it. it s hard to bleivie rsd can have so many components but it is endless. it helps me to warm my leg as much as possilbe. I have a gel i can apply as well that helps some what. do you have a pain mangagement doctor? I would see what he thinks would help, my bone pain has escalated over the years. take care , cz

Hi Penquin, so many places, im so sorry, have you tried heat? that helps me a lot. And yes rest, when my is active i have no choice but to lie very very still absolutely can not put pressure on it, it definitely takes the pain to a place i can not stand. If I felt like I couild, which i usally dont ! I do think an epsom salt bath would help a great deal, especally for you as the area is so large. Let me know if you try that ok? and thank you for posting. sincerely cz