I was diagnosed with OP about 10 years ago due to an early menopause at 38 and was put on the weekly medication of Alendronic Acid along with calcichew. Everything was ok until 2021 when I had emergency abdominal surgery, I was in ICU for nine days and my family were told I only had a 30% chance of pulling through but I did but I was very frail.
For a good part of the year I needed to use a walker and unfortunately even with the walker I fell four times. Ended up in hospital twice for pain control for two fractures in my pelvis and a badly fractured sacrum. I also have a fractured vertebrae at t3 which I have no idea how it happened.
Last September I developed Kyphosis and I’ve recently had a DXA scan which has showed my OP has worsened and they wanted to start me on the daily injection for two years. They took blood tests at the time which showed there’s a lot of calcium in my blood which is not getting to my bones. They put a hold on the daily injection and to stop the calcichew for the moment until I have a bone scan, I don’t really know what to expect from this and Google is scary! I would also like to know if Kyphosis can be reversed somewhat? I’m very stooped at the moment and in a lot of pain. I should also add that I’ve had chronic pain for 26 years and having to deal with more pain is soul destroying.
Any suggestions or advice would be greatly appreciated. Thank you.
Written by
Kimm4
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so sorry to hear of your difficult time…. What is the chronic pain for 26 years due to? And what was the emergency abdominal surgery for?
I also have a fractured t3 (and 4) vertebrae and have no idea how it happened. I don’t think I have Kyphosis, although the rheumatologist did ask if I’d noticed a stoop. I also had an early (induced) hysterectomy- at 36 - due to endometriosis. Also had serious abdominal surgery….. so lots in common, though your journey sounds more horrific than mine.
I started with Teriparatide, but had to stop after 6 weeks because of side effects. Decades scan tomorrow. Then back to rheumatologist. I’m scared of all the side effects of the various injections, so still don’t know what I’ll do.
One day at a time. Just for today, I’ll get out of bed and meet the day. I do believe in mind over matter. Our mind has such a powerful influence on our body. Not easy though….
Please do keep in touch with us and share your progress.
Thanks for your reply. The start of my chronic pain was what my GP at the time called a muscle spasm. I had no decrease in the pain and my physio after months of work referred me to a pain specialist. He eventually ordered an MRI and it showed a prolapsed disc at c5/c6. I had an operation for this and the pain never decreased and I had been out of work for two years by this time. My Pension Company who were paying me while I was out sick sent me to their medical assessor and he told me I’d never touch a keyboard again. I was devastated at this because I just wanted to get better and return to work at a job I loved. Some months later I was also diagnosed with fibromyalgia and months later my boss phoned and asked would I be interested in coming back to work part time at 20 hours a week. I was delighted and at the beginning I managed ok but at two years I was finding it very difficult and resigned. I was heartbroken and then tried to find a pain consultant to help. I wasn’t hopeful with the original one. At that time pain consultants were thin on the ground but I did find one. He put me on opiates which caused a blockage in my bowel hence the emergency surgery. I can’t take any opiate meds now so my pain is not controlled. Pain also developed in my lumbar area and a recent MRI showed a few disc prolapses and issues which I had implanted into there a few years ago which needs to come out. My pain is classed as neuropathic or nerve pain. The medics don’t really know why some people have eg an op and the pain dissipates while the wound heals while in others the pain never stops. Opiates are the main treatment but there is now an issue especially in the US where Doctors won’t prescribe opioids and instead prescribe antidepressants which do have there place in pain management alongside opioids but people are in unrelenting pain because they won’t prescribe opioids. This attitude is spreading across the Atlantic too unfortunately.
I am so sorry you are in such pain...I understand 100%. I'm in Day 2 post another surgery, I think it's #16 since 2014. This was nerve impingement in lumbar, trapped by scar tissue, and four more decompressions on bone on bone L1-L4., bone spurs were on nerves as well. Waiting on bones to get better for the next fusions, had 4 now. Nerve pain is the worse, and Pain Doc has me on Norco, which does nothing to help...muscle relaxers, that sort of help. Before surgery, I was ready to ask for a "beam me up by Scottie" as I could not take it anymore. In recovery, the nerves were raw, angry, and no dose of morphine cut the pain. I was amazed. Yes, the rules on pain meds have really hurt in the USA. We pay a fortune to go to a pain doc, get tested, and then pay for the meds. My doc has never suggested an anti-depressants, but many are on them. Not willing to do that in the least bit. Getting the inflammation down is critical, but those meds aren't great either...I find plain ole Advil works better than anything...but it has it's problems too, so I don't take it often, my Rheumy doesn't like it as I have Lupus and AS as well. I've tested a spine stimulator implant, and it was good...I was to have it implanted yesterday, but the other surgery got in the way first. So in another month that goes in, if all gets better and calms down. I know your frustrations, some days seem so hard just to get through....much less enjoy them, take joy in your family. We are with you, praying for you as well. I take Tymlos injections daily, neurosurgeon can see a 50% difference, he put me on it, and says stay another year. I also do stretches, exercises, and walk as much as I can daily.
Just to add that there’s a group on FB called The Irish Menopause which you might find useful. I found the American groups totally against meds which I feel if you are on the correct one it can help to prevent OP or slow it down alongside diet.
I’m on paracetamol and Xanax at the moment which aren’t great for the bad pain. I use Solpadeine if the pain is very bad. I’ll be starting neurontin soon. Up to now I was on a large dose of Ketamine, it helped with the fibromyalgia pain but not the neuropathic pain and it made me feel very out of it.
I am sorry to hear about your extraordinary circumstances. You say you recently had a DEXA scan but then mention that a bone scan is pending. What sort of bone scan is pending? If you could also provide more detail as to how they know from bloodwork that the calcium specifically isn’t sufficiently entering your bone, that would be helpful. What combination of Parathyroid, Vit D, etc suggests as much?
I have been taking teriparatide for a year without any issues (knock on wood). Your mileage may vary.
Typing “Can kyphosis be reversed?” into an AI engine provides some thoughts, although not specifically vetted or vouched. Good luck to you.
Thank you. I’m linked with a hospital who monitors my op. Last year was the first time I attended them. They do a DXA scan every two years. I was due one this year because the last one was when I was in hospital for pain control after a fall which caused fractures, that was 2022. They left me on the Alendronic acid. The radiologist who performed this DXA scan called the nurse who I saw last year and she spoke to the head rheumatologist and they then decided I should be on the daily injection. The nurse then took bloods and phoned me two days later to say they wouldn’t bee going ahead with the daily injection until I had the bone scan. I was so shocked I never asked any pertinent questions. Haven’t had a date yet for the bone scan. Are there different types?
Hi Kim. You have my sympathy. I know the pain you are talking about. I’ve had seven fractures in my back and everything I do causes me pain. I don’t take pain killers because they just don’t touch it. So I’m left with I can’t do much. I had a shower this morning and that’s as much as I can do. Sometimes I can barely hold my head up. I had some physio and he said he’d given me all the exercises he has. He said the next thing is to put me forward for an op. I said no thank you. I would be afraid I won’t walk after because it’s fifty fifty that it will work and you can end up paralysed. Which would mean I couldn’t stay at home.
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