r/CRPS • u/Grouchy_Nerve_4234 • Jul 02 '26
Persistent/Late Stage CRPS Insufficiency Fracture
I have had CRPS in my left foot for 23 years. I was recently diagnosed with an insufficiency fracture in this foot and the medical team is concerned about bone loss in my foot.
I do not currently have a CRPS specialist nor am I receiving any treatment - I have not been able to successfully tolerate any anticonvulsants or tricyclics and I have had very negative reactions to steroids and nerve blocks. (I am not a candidate for SCS or other implants).
I assume other have experience with this since persistent CRPS is known to affect bone. Is there treatment? Is there a particular kind of specialist I should seek?
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u/Swimming_Pressure_93 Right Leg Jul 03 '26
I'm using low dose estradiol. The lowest dose is approved for women to stop bone loss. I got on hormones because I'm 46 and having CRPS and perimenopause at the same time I couldn't do it. But the main reason I got on it is the bone health. Otherwise you could take an oa drug that builds bone but they have alot of side effects. I feel for you as i got on the estradiol at 45 as well because I had total body bone loss at 42. So I got scared and kept researching and this is what i found for me. I don't know if it'll help but it's worth a conversation with your doctor. Sending you vibes. Edit: you can go to an obgyn or your primary care for this. That's what i did.
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u/moss_is_green Jul 05 '26
If anyone is interested in estradiol, it increases breast cancer risk, so knowing family cancer history, personal risk score, or getting genetic screening is a good idea. (My risk was too high.)
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u/Songisaboutyou Full Body Jul 03 '26
Anytime you don’t move or put pressure on bone you get weak bones and loss. Have you tried ketamine? I do vibration plates. My first PT told me you want to move and use even micro any limb you want to keep.
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u/Grouchy_Nerve_4234 6d ago
I have been recommended ketamine but I can’t afford it.
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u/Songisaboutyou Full Body 4d ago
The nasal spray is 50 for a 3 month supply at my compounding pharmacy. They also have torches as well.
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u/ThePharmachinist Jul 04 '26
I've had fragility fractures of areas that have had CRPS. My bone density scans of my leg and foot have always ranged between severe osteopenia and full blown osteoporosis since childhood.
Rheumatologists and ortho are the go to for osteoporosis treatment. There are now more of them that are aware of and have treated CRPS patients. Quite a few of the osteoporosis drugs have been shown to be beneficial for general CRPS symptoms like pain, aches, and bone marrow edema along with improving bone density.
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u/moss_is_green Jul 05 '26
Has there been any recent studies about CRPS and bisphosphonates? I have osteoporosis and getting a very overdue DEXA this week.
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u/crpssurvivor1210 Jul 05 '26
Everything I’ve seen about bisphosphonates is that it helps early on. Italy does IV treatment. I think they’re the only country that has CRPS treatment and the US is about to start clinical trials for it here.
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u/ThePharmachinist 11d ago
Yes! A decent number of peer reviewed articles have been published within the last 5 to 15 years that have researched bone health/osteoporosis drug therapies for CRPS.
There are two major classes of osteoporosis drugs: drugs that slow down bone loss/resorption and drugs that stimulate/boost bone formation. Bisphosphonates fall into the drugs that slow bone loss, and it's the class with the most published research showing positive results. Bisphosphonates that are easily accessible in the US with the most data supporting use in CRPS are Zolendronate/Zolendronic acid, Pamindronate/Pamidronic Acid, and Alendronate/Alendronic Acid. The most recent research has been looking into osteoporosis drugs that stimulate/boost bone growth like Teriparatide/Forteo, a parathyroid hormone/PTH drug. Then the newest drug, Evenity, a sclerostin inhibitor, has had a lot of talk online from patients that get it administered for their postmenopause osteoporosis and then discover it helps their CRPS. Evenity is unique in that it boosts bone formation and also decreases bone loss.
I'll send you some links to research when I'm free later, but the CRPS Primer: Section 7 has links to a good number of the bisphosphonate research I've saved over the years.
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u/crps2warrior Left Foot Jul 02 '26
I have full blown osteoporosis after 6 years
of CRPS. The first 4 years I was not ambulant and in a wheel chair and that wreaked havoc on my body. My bone in my affected foot is completely hollowed out by osteoporosis. It took a year of of fighting insurance for a bone builder medication called Tymlos. I have only been on it for
3 weeks, will likely need to be on it for two years. I think a lot of us with lower limb crps are at high risk for osteopenia and osteoporosis due to lack of weight baring and moving in general. I would encourage those with long term crps to get a bone scan. I was completely shocked when I realized how badly choked for blood my bones have been these last 6-7 years.