Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

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Old 01-02-2020, 11:05 AM #1
Hotfoot53 Hotfoot53 is offline
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Cool Anyone treat bone loss CRPS limb w/meds?

Iím going to a new pain doc because I moved and have a SCS that needs reprogramming.
While Iím there Iím going to ask about bone density in my foot but you are all more experienced than this pain doctor.
I know that Bisphosphonates are used for pain but when I was first diagnosed the doc said the foot X-ray showed significant bone loss already -like 3 months of being post surgery and off my foot. I have osteopenia from surgical menopause so idk if itís even possible to target a foot.
Did any of you test and treat your affected limb for low bone density?
If this is already on here just let me know and Iíll search harder.
Thank you so much!
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Old 01-03-2020, 08:49 AM #2
annabanana123 annabanana123 is offline
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I haven't but my mother has RA and has taken these to treat it. It's been highly effective in treating hers so I would definitely encourage you to give it a try. She had to adjust the timing of it because it initially made her nauseated.
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Hotfoot53 (01-07-2020)
Old 01-03-2020, 01:02 PM #3
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Originally Posted by Hotfoot53 View Post
Iím going to a new pain doc because I moved and have a SCS that needs reprogramming.
While Iím there Iím going to ask about bone density in my foot but you are all more experienced than this pain doctor.
I know that Bisphosphonates are used for pain but when I was first diagnosed the doc said the foot X-ray showed significant bone loss already -like 3 months of being post surgery and off my foot. I have osteopenia from surgical menopause so idk if itís even possible to target a foot.
Did any of you test and treat your affected limb for low bone density?
If this is already on here just let me know and Iíll search harder.
Thank you so much!
If you are post-menopause definitely ALSO see your gynaecologist, as that is how my mom got prescribed bisphosponates (osteoporosis).

I got my infusions through a rheumatologist who knew about CRPS/RSD very well. It is given for recalcitrant RSD, so not everyone just gets that medication.

HTH!
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All the best, Marleen
=====================
Work related (car) accident September 21, 1995, consequences:
- chondromalacia patellae both knees
- RSD both legs (late diagnosis, almost 3 years into RSD) & spread to arms/hands as of 2008
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Hotfoot53 (01-07-2020)
Old 01-07-2020, 01:51 PM #4
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Default Regional Osteopenia and CRPS

Hello, I have had CRPS since 2014 from a bunion surgery. I had serious osteopenia in my foot that developed sometime during my first year after surgery. I'm not sure when exactly because the surgeon who had performed my botched surgery never sent me to a pain doctor or told me about the osteopenia. He never diagnosed CRPS for fear of a law suit. I did have an EMG/NCV a year later and it showed a femoral nerve injury and an occlusion of an artery that happened during the surgery. I was not informed. I had such serious pain that I started to beg the surgeon to amputate my foot. Finally 10 months after my surgery he suggested that I get a second opinion. My hot/cold purple, swollen horribly painful foot was diagnosed within the first 2 weeks after seeking a second opinion. My guess is that I developed the osteopenia soon after surgery and that it continued until I had treatment in Italy in 2015. I owned a gym and was a jump rope coach so for me to have such bad bones in just my CRPS foot was very odd. I entered the first clinical trial for Neridronic acid and became almost completely better until a relapse at 9 weeks post infusions. I only received a half dose as I was in phase 1. My foot had been breaking. I had at least 5 stress fractures and wore a boot to protect my metatarsals. In Italy, I was at the hospital that the original Neridronic Acid clinical trial had been completed. I received 400 mgs over 4 days. That was in December and by March an X ray of my foot showed no signs, at all, of osteopenia. The first infusion helped my pain because it had been only 12 months since my surgery. By the time that I got to Italy it was 18 months post surgery and it didn't help my pain at all. However the fact that it made my foot bones whole again was a miracle and I never suffered a stress fracture again. I started getting Lidocaine Infusions a year ago. I get them about once every 3 weeks. My pain went from off the charts down to about a 1-4. I run 4-8 miles everyday. It has been a second miracle. You can get bisphosphonates in the US, but I don't think that Neridronic Acid has come here yet. You can find out about where to go in Italy by emailing the company that sells the drug. It was Grunenthal but may have changed. Or you can call one of the clinical study centers where the study was performed to ask about where to go in Italy. Don't pay the expensive tourism charges to get the medication. You can set it up yourself. In 2015, my entire treatment was $800 US. Plus your travel expenses. There are some bisphosphonates available in the US that if used correctly may help as well. This is very serious medication and can have some extremely bad side effects if used too much. Any questions? Please ask, Jules
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Old 01-07-2020, 10:12 PM #5
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Quote:
Originally Posted by Jules14 View Post
Hello, I have had CRPS since 2014 from a bunion surgery. I had serious osteopenia in my foot that developed sometime during my first year after surgery. I'm not sure when exactly because the surgeon who had performed my botched surgery never sent me to a pain doctor or told me about the osteopenia. He never diagnosed CRPS for fear of a law suit. I did have an EMG/NCV a year later and it showed a femoral nerve injury and an occlusion of an artery that happened during the surgery. I was not informed. I had such serious pain that I started to beg the surgeon to amputate my foot. Finally 10 months after my surgery he suggested that I get a second opinion. My hot/cold purple, swollen horribly painful foot was diagnosed within the first 2 weeks after seeking a second opinion. My guess is that I developed the osteopenia soon after surgery and that it continued until I had treatment in Italy in 2015. I owned a gym and was a jump rope coach so for me to have such bad bones in just my CRPS foot was very odd. I entered the first clinical trial for Neridronic acid and became almost completely better until a relapse at 9 weeks post infusions. I only received a half dose as I was in phase 1. My foot had been breaking. I had at least 5 stress fractures and wore a boot to protect my metatarsals. In Italy, I was at the hospital that the original Neridronic Acid clinical trial had been completed. I received 400 mgs over 4 days. That was in December and by March an X ray of my foot showed no signs, at all, of osteopenia. The first infusion helped my pain because it had been only 12 months since my surgery. By the time that I got to Italy it was 18 months post surgery and it didn't help my pain at all. However the fact that it made my foot bones whole again was a miracle and I never suffered a stress fracture again. I started getting Lidocaine Infusions a year ago. I get them about once every 3 weeks. My pain went from off the charts down to about a 1-4. I run 4-8 miles everyday. It has been a second miracle. You can get bisphosphonates in the US, but I don't think that Neridronic Acid has come here yet. You can find out about where to go in Italy by emailing the company that sells the drug. It was Grunenthal but may have changed. Or you can call one of the clinical study centers where the study was performed to ask about where to go in Italy. Don't pay the expensive tourism charges to get the medication. You can set it up yourself. In 2015, my entire treatment was $800 US. Plus your travel expenses. There are some bisphosphonates available in the US that if used correctly may help as well. This is very serious medication and can have some extremely bad side effects if used too much. Any questions? Please ask, Jules
Thank you Jules! This is exactly what I was wondering about. Did they X-ray your foot to see the osteopenia and repair of stress fractures after the study? Mine was also a botched bunion surgery. I never thought it would be a problem like this. The spinal cord stim saved my feet and has made it possible to do somethingís normal. But still I want to strengthen the fo also. Thank you for your Reponse.
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Old 01-13-2020, 02:29 PM #6
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Unhappy Update after new pain center- disappointing

Well I went to the new pain center and was stunned at how uninformed they were. Iíve read it here lots of times, but I guess I was lucky in my first pain doc. Idk.
They offered me pills, surgery to move the uncomfortable spinal cord stim battery up a little and a shot of toradol for my shoulder which was bothering me for just a few days.
I told them no thank you and (again) said I was just there as a formality to set up a meeting to have my spinal cord stim settings changed by Boston Scientific. They were astonished. And handed me the sales reps first name and number on a post it and told me to set it up for anytime theyíre open. Okay. Thanks.
I didnít bother discussing bone density I think itís not in their area of expertise (since they didnít seem so expert at pain).
Oh well. I will find another doctor for it. (Or maybe contact the original physician who diagnosed me)
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Old 01-16-2020, 09:05 AM #7
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Quote:
Originally Posted by Hotfoot53 View Post
Well I went to the new pain center and was stunned at how uninformed they were. Iíve read it here lots of times, but I guess I was lucky in my first pain doc. Idk.
They offered me pills, surgery to move the uncomfortable spinal cord stim battery up a little and a shot of toradol for my shoulder which was bothering me for just a few days.
I told them no thank you and (again) said I was just there as a formality to set up a meeting to have my spinal cord stim settings changed by Boston Scientific. They were astonished. And handed me the sales reps first name and number on a post it and told me to set it up for anytime theyíre open. Okay. Thanks.
I didnít bother discussing bone density I think itís not in their area of expertise (since they didnít seem so expert at pain).
Oh well. I will find another doctor for it. (Or maybe contact the original physician who diagnosed me)
What!?

That's terrible!
__________________
All the best, Marleen
=====================
Work related (car) accident September 21, 1995, consequences:
- chondromalacia patellae both knees
- RSD both legs (late diagnosis, almost 3 years into RSD) & spread to arms/hands as of 2008
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