I am completely over my TO now...during my bout and the follow-up later, my doctor and I were closely watching my T (testosterone) levels. They were very low-normal...though "normal" is a very subjective range for male T levels. I am now getting hormone supplement (gel once a day) and it has made a huge difference in my health. Because this illness tends to affect men in their 40s and 50s and women in their 3rd trimester I have always strongly suspected a hormonal factor (some side-effect of andropause in men). Anyone who has this condition, please report if you have lowish testosterone or estrogen levels as this may be factor.
I won't go so far as to say it is the cause of TO, but I now strongly suspect that it is a major factor in the development of my TO. Looking back on the 5 years prior to developing symptoms I had chronic symptoms of low T.
I also want to mention that the blood test "normal" T range includes normal levels for men 85 years old. My results consistently matched the mean for men 65 and older...since I'm 48, I would think that is NOT normal...but blood tests are not calibrated by age...there is just a wide net under which the results are interpreted.
I was just diagnosed with TMO with subchondral insufficiency fractures in knee then hip, left side. Would like to know the progress of the posters here as your stories are much the same as what I experienced. DaveCat-great detail and advise. Alexa-very similar with severity of pain and osteogenesis imperfecta (mild form) as a possibility.
This disease and I have been around. In 1988, my right hip began to ache and grew progressively worse over a period of several months. One theory was that it might be related to the graft for my back fusion done in 1982, which was taken from the right hip bone. After trying a chiropractor (which was not useful), I wound up at an orthopedic surgeon. They did x-rays, bone scans, and MRIs and were totally stumped. Then the pain resolved on its own after about 4 months.
In 1992, the same thing happened to my left hip, with the same progression and resolution. They were finally able to find that it was transient osteoporosis. In 1996, my left ankle went through a period of similar pain, and then in 2004, my left knee. In 2007, it was the right ankle, and now, in 2012, it's my right knee.
I also have the mild form of osteogenesis imperfecta, and a scoliosis fusion, but there doesn't seem to be any real cause of this; it just shows up and hurts like heck for a few months and then goes away. Davecat's summary is a good one, so I'll just add a few thoughts on dealing with this.
1. It WILL GET BETTER. This can be hard to believe when you are going through it, because you're dealing with deep bone pain and there's very little that hurts like that (in my case, this is worse than the kidney stone I had, but I suspect I'm unusual there). When I had TO in my hips I was working 40-hour weeks and had to be on my feet a lot, and for me the workout of my joints did help, even if it wasn't pleasant. You need to gently remind your bones that they have a job to do. But take the opportunity to be nice to yourself, too. BE CAREFUL, though, since fractures are a risk and so are falls, which can hurt you in other, more serious ways.
2. Take painkillers as needed. I used ibuprofen for my hips and was given Vioxx for my left knee. The Vioxx worked pretty well, but had annoying side effects, and is not longer available in any case. Since NSAIDs may slow bone healing, I'd avoid them now. I take fish oil supplements for osteoarthritis, as well as 500mg twice a day of Limbrel, but I've needed something more for the TO and now have a prescription of Vicadin, which helps. A quick note of caution: MAKE SURE there are no drug interaction issues before you start on a regimen of any drugs.
3. Remember your good leg. One of the biggest dangers of TO is that you are putting a lot of stress on the unaffected leg, particularly the knee. I have a brace on both knees, and I'm careful to nurse the good knee as much as the painful one.
4. Humor. Look, it's going to hurt like the dickens anyway. Joke about it,and remember that it's going to go away and then you'll have something to tell your kids about. Watch sitcoms or whatever your medicine of humor is. Laughter has seen me through five episodes of this and is currently part of my treatment program for the sixth.
Thanks for the suggestion...it may help...but probably not much. The condition is caused by bone marrow swelling...it's not really osteoporosis. The osteoporosis is a temporary result of the damage the bone marrow swelling does.
Frink: Your comments are right on. I also have scoliosis and possibly mild OI...another woman my have mild OI too...this is the first time I've seen a possible causal link.
Last edited by moderator2; 04-24-2012 at 06:13 PM.
I had x-rays done of my hips and right knee on Monday, and got the radiologist's report today when I went to my pain management doctor.
No fractures. Both hips are normal and healthy. The right knee has "speckled calcifications in the distal femoral shaft most consistent with enchondroma." This would be consistent with cartilage activity and bone marrow edema.
The right knee pain started April 9 and progressed to a limp by April 14. I've been on a cane since April 22. Based on my experience with the left knee, I hope to see some improvement by mid-late May.
Davecat, you mentioned in an earlier post that studies show this condition does not recur in the same joint twice. This has been my experience, and it looks like I've had it in every leg joint now. I'd be interested in the study you mentioned, since hopefully this will be my last bout and I can then go back to my usual mischief.
I'm sorry to hear you're going through this all over again. Yes, I read that it only hits each joint once but I also read that it resolves in 18-24 months. My attack was much more acute than yours...coming in rapid succession. I was done at around 18 months (or so I hope). I didn't read anything about this spanning multiple years. I hope this resolves quickly.
What does your exercise look like? I am starting jogging again. I can do about 1.5 miles now but have to give it a rest for a few days between jogs. My joints wind up aching too much...but they don't hurt with normal day-to-day movement and activity.
So far the TO is following about the same pattern it did in 2004. This past week I've been able to put more weight on the right leg, which is a good sign, though I'm still using the cane. There has been some pain on the inner side of the knee, which wasn't there before.
As to exercise, I usually try to swim twice a week, but this has been curtailed by the knee. I don't run because it's too hard on my back, what with the arthritis and fusion and all. Getting around these days is quite a workout by itself, and I think I've probably lost about 10 pounds since this began. It's not a method of dieting I recommend, however.
I read that sometimes this disease hits quickly in multiple joints, and sometimes it takes years between outbreaks. Hopefully this is my last vulnerable joint, and I won't see this again once it passes.
Just got DXA results (last test two years ago). Lumbar spine was stable at -1.6. Left hip is down 5% at -2. I'm being referred to an endocrinologist who specializes in osteoporosis. More later. I've read hypogonadism can bring on osteoporosis in men and I've been receiving treatment for that since December.
Hi, I was just diagnosed today, May 17, 2013, with "regional migratory osteoporosis, also known as transient regional osteoporosis." I had sudden onset of pain in my left ankle last September. My ankle swells. The pain is worst when I stand, bad when I walk, best with my leg elevated. I take aspirin 1-2 times a week (usually if I can't sleep from pain). I am glad to see it goes away! Strange thing is I'm a 60-year-old woman and everything I've read says it occurs mostly in middle-aged males or 3rd trimester pregnant women. After reading what is available here, I will cut out (or drastically reduce) my meat consumption and start Greek yogurt. I already eat lots of fruits and vegetables. I'm a certified health coach trained in over 100 dietary theories, so I can certainly keep myself healthy regarding my diet. Any suggestions, though, I'm all ears! Thanks!
__________________ As we cultivate peace and happiness in ourselves, we also nourish peace and happiness in those we love.
--- Thich Nhat Hanh
Last edited by MyLeftAnkle; 05-17-2013 at 06:21 PM.
Reason: Right vs. left ankle