I have to quit running...

BadBones wrote:

Avocado's Number - absolutely recall and am extremely thankful for the recommendation!

Glad to hear you did so well with Forteo, and best of luck with the year off drugs.

:)

You guys are cracking me up. My roomie used garage sale weights, pullies, rope, and jump ropes and built one of these for college training, just like everyone did forever until someone overcharged for this Best Machine Ever Invented.

Same deal as how we all ran faster in the 70s and 80s in Jayhawks and Eagles than you wahoos have in 4% and all that other BS.

I guess you do look cool on the Insta', so there's that.

Sorry to read this. Can you run just dial it down? 3 x a week, etc? Then add some

Lower impact stuff. (walking/biking/swimming).

You’ll find a way to cope... we all do. Whether that’s a new form of exercise. I was a legit runner for years and then one day just walked away from years of burnout and injuries and guess what? I was fine. I went on with my life for a good couple years without running much if at all. I started up again for general health but when I think I may not be able to do this forever it reminds me there was a time I was fine not doing it ever again...

Hang in there, it’s just a bump

In the road and at the end of the day you’ll find a way to cope.

I've been told that I COULD NEVER RUN AGAIN... by a doctor at the Mayo Clinic. I asked for a second opinion. Same answer.

Since then, I've run over 15,000 miles and set three age-group world records. My message to you is "DO NOT GIVE UP!" If traditional medicine cannot fix what's wrong with you, look into alternative approaches. 9 out of 1 will be worthless, but you only need to find one to fix your problem.

I have Epstein Barr Syndrome. I was told it was incurable. I searched and found a cure that worked for me. YOU NEED TO KEEP LOOKING. DO NOT GIVE UP.

Another poster recommended The Whole Body Approach to Osteoporosis by R. Keith McCormick. I have no idea it if would help you, but it's only $13.88, for goodness sakes. Buy it. Read it. Maybe you're missing just one thing in your diet. Maybe it's in the book.

I had an inoperable ankle injury. I went to PT for weeks, but it still flared up every few months for... 15 YEARS...! Finally, I was talking with another PT and mentioned it. He said, "Sure, we can treat that." The results were immediate and amazing. DO NOT GIVE UP.

I had serious sinus problems and earaches. They would come and go. I saw doctors and specialists to no avail. I asked around and someone mentioned an out of town doctor. I went to him. He cured my problem in ONE VISIT!

Meanwhile, I'd suggest you find a gym with Expresso bikes or some other bikes where you can race against other riders' best times or even race against a friend on the bike beside you. I HATE spin classes, but I love to race against the ghost of my previous best time on the Expresso bike.

tl;dr

Don't give up. Find a cure for your condition that works for you.

fisky wrote:

9 out of 1 will be worthless, but you only need to find one to fix your problem.

I really don't like those odds. :)

But I agree that the original poster should not give up. I understand very well the shock of being told that you have "idiopathic osteoporosis." For a while, I felt that I was walking around on eggshells. But I've gotten through it -- and quite a number of other sudden and highly intrusive reminders of life's fragility -- pretty well so far.

BadBones:

I'm glad to hear your appointment went so well. Those tests will rule out a large number of things for you. I've had all of them minus the bone scan.

To the posters who asked about z-scores:

I'm at -3.1 for my spine and hips, which is where I've had all 7 of my stress fractures.

To the posters who have told me not to give up running:

This was my exact frame of mind when I first got my diagnosis. But two things changed my mind. The first was that my doctors were in agreement that if I continue to run, I risk a compression fracture of my spine, which could basically cripple me for life. The second was when I emailed my college coach, told him about the diagnosis, and told him that I want to give myself time to heal, do more research, see more doctors, and push through this to run again. He is old-school, the type who always encouraged me and other former runners to keep at it when we faced injuries or burnout. His response this time: "You've spent the last seven years doing that. You fought the good fight. It's time to walk away."

Steven --

Just to play devil's advocate (driven by wishful thinking that I'll get back out there one day...), I'm going to push on the two things that changed your mind.

I've had two compression fractures in my spine, and while not fun, they haven't been crippling and I don't expect them to give me problems long-term. My experience has been fairly bad pain for a few weeks that gradually gets better over the next month or so - reading the literature online, that appears to be a common course of progression. For more serious compression fractures, kyphoplasty is a minimally invasive procedure that restores vertebral height and often leads to instant relief of symptoms.

Regarding your coach: he is giving good advice, but YOU can still decide that it's worth it to you and keep fighting. I mentioned Dr. Keith McCormick earlier in the thread - his story should be motivational to people like you and me. He was an Olympic Pentathlete, ended up suffering multiple fractures from Osteoporosis, and has come back to regularly compete in Ironman triathlons. While I'd recommend a remote consultation with him, you should at minimum read his book, or at the very least read his blog series on his experiences:

https://www.osteonaturals.com/2018/04/06/dx-severe-osteoporosis-part-xiv-the-final-chapter-time-to-move-on/

I don't know that either of us will ever get back to running, but you should know that people have come back from worse (Dr. McCormick had scores

Avocado's Number wrote:

fisky wrote:

9 out of 1 will be worthless, but you only need to find one to fix your problem.

I really don't like those odds. :)

But I agree that the original poster should not give up. I understand very well the shock of being told that you have "idiopathic osteoporosis." For a while, I felt that I was walking around on eggshells. But I've gotten through it -- and quite a number of other sudden and highly intrusive reminders of life's fragility -- pretty well so far.

Statistically, those are pretty good odds if you avoid the crazy expensive (or just crazy) alternative therapies and you're patient. The OP has had this problem for 6 years so patience shouldn't be an issue.

Look at the odds of failure with a 90% failure rate with each successive attempt.

1st attempt failure odds: 90%

2nd: 81%

3rd: 73%

4th: 66%

5th: 59%

6th: 53%

7th: 48%

In short, after 7 alternative approaches, the odds of finding one of the 7 that works is better than 50/50.

You can improve the odds even more by trying two approaches at once. After only 3 attempts (at a 81% failure rate) the odds of finding one that works is 53%... nearly 50/50.

In my experience, I've seldom had to go more than 4 attempts into alternative therapies to find something that works. Here are my experiences with alternative therapies/medicines. Note that I have had 2 complete failures so there's no guarantee you'll find something that works.

Severe (on crutches) plantar fasciitis: 5 attempts (90% recovery). Cost

fisky wrote:

In my experience, I've seldom had to go more than 4 attempts into alternative therapies to find something that works. Here are my experiences with alternative therapies/medicines. Note that I have had 2 complete failures so there's no guarantee you'll find something that works.

Severe (on crutches) plantar fasciitis: 5 attempts (90% recovery). Cost

For some reason, my post got truncated. Here are the other times I've tried alternative therapies and my success/failures.

Severe (on crutches) PF: 5 attempts. Time 4 months. Cost: ~$1,000 (90% recovery)

Grade II Gastroc tear: 6 attempts (no significant benefit, although I returned to training 1 month ahead of medical prognosis) Cost: ~$1,000

Severe IT Band: 3 attempts over three months. Cost: ~$300. Full success.

Epstein Barr Syndrome: 1 attempt. Full recovery. Cost: $21/month for supplement.

Earaches to the point that I could not fly: 4 attempts. Time: 3 years. Full recovery

Enlarged prostate: >10 alternative approaches. Cost:

I wonder if this mark "~" cuts off a post. Let me try

~ This comment is entered after a "~" and a space.

Not to derail the thread, but what alternative IT band treatment worked for you?

Along with PT and switching to cycling, I have tried: cryotherapy, muscle scraping, dry needling, deep tissue massage, foam roller, various forms of anti inflammatory products.

Would love any advice you have.

I had IT band issues on and off my last year of high school, eventually getting bad enough that I needed to stop running for about 6 weeks right at the start of track season (terrible timing). I tried various strengthening programs, foam rolling, massage, icing, and ibuprofen without much relief.

I ended up seeing an ART (active release technique) massage therapist, who found a few knots in my hip (pain was lateral knee) and had instant relief. Ran later that day and was back racing a few weeks later. Over the next few years, I'd occasionally get flashes of the dreaded knee pain, but self massage with a lacrosse ball to the muscles around the hip always put it to rest. Deep tissue massage of the IT band never did much for my issues.

If you can't get to an ART practitioner, you can google "trigger point IT band" and get diagrams showing you where there are likely issues contributing to IT band tightness / lateral knee pain.

May not work for your specific case, but worth a shot...

(realize you didn't direct the question to me, but hopefully this is helpful)

ITBandHelp wrote:

Not to derail the thread, but what alternative IT band treatment worked for you?

Along with PT and switching to cycling, I have tried: cryotherapy, muscle scraping, dry needling, deep tissue massage, foam roller, various forms of anti inflammatory products.

Would love any advice you have.

I bought a book in 1997 called power yoga by beryl bender birch. I found a pose that elicited the pain. I backed off and did the pose repeatedly to just before the point of pain. I was better in two days. I'll try to find the name of the pose and post it.

I'm so sorry to hear this.

FWIW, I have z-scores in the 1.5-2 range. 6 stress fractures. Was on Forteo for two years and not a single stress fracture during that time. Unfortunately when I came off of Forteo, the stress fractures started again. My Z-scores improved a smidge over those two years, but not by much. It's a great drug, but it sucks that it's only approved for 2 years. (and that you really have to fight insurance to get it covered).

I hope you find some answers - please keep us updated. Never knew how many of us were struggling with this.

fisky wrote:

Avocado's Number wrote:

[quote]fisky wrote:

9 out of 1 will be worthless, but you only need to find one to fix your problem.

I really don't like those odds. :)

Statistically, those are pretty good odds . . . .

[ /quote]

I was kidding. Check the bolded portion of your post excerpted above.

Actually, I believe I asked about your t-scores, not your z-scores. But in any event, I don't believe that your scores are dramatically different from mine about seven years ago. (I want to note that t-scores and z-scores reflect only relative bone density, which may be very different from relative bone strength.)

I'm not minimizing your concerns. Far from it. But what you've said, it sounds to me that you're closer to the beginning, not the end, of understanding the condition and obtaining effective treatment. And regardless of whether you give up running, you need to continue to educate yourself about osteoporosis and its treatment, because it's a complicated subject and a never-ending battle.

(By the way, don't assume that the two-year black-box warning on Forteo reflects any actual statistical evidence linking the drug with increased incidence of cancer in humans. I think a much bigger concern about Forteo is that its anabolic effects diminish with time, and are likely reversible down the road. But it can still be a very valuable part of your treatment in the upcoming years.)

fisky wrote:

I bought a book in 1997 called power yoga by beryl bender birch. I found a pose that elicited the pain. I backed off and did the pose repeatedly to just before the point of pain. I was better in two days. I'll try to find the name of the pose and post it.

I have that same book, and have used it quite a bit as a reference.

mybonesbreak wrote:

I'm so sorry to hear this.

FWIW, I have z-scores in the 1.5-2 range. 6 stress fractures. Was on Forteo for two years and not a single stress fracture during that time. Unfortunately when I came off of Forteo, the stress fractures started again. My Z-scores improved a smidge over those two years, but not by much. It's a great drug, but it sucks that it's only approved for 2 years. (and that you really have to fight insurance to get it covered).

I hope you find some answers - please keep us updated. Never knew how many of us were struggling with this.

Thanks for the post. Can you tell us your story? Did you continue to run through all this? How did you handle taking Forteo? Any side effects? Was it a pain in the a** to travel with it?

Steven - have you discussed Tymlos as an alternative to Forteo w/ your docs? It's newer, slightly cheaper, and doesn't need to be refrigerated. My understanding is that it uses a similar mechanism as Forteo to build bone, so might be worth considering if you travel a lot (I travel frequently, including long international flights, so keeping Forteo refrigerated seems like it would be a hassle).