I have been a member on health unlocked forums for many years due to other health conditions.
I joined this bone health forum last year 2022, following three fractures out of the blue. (The first whilst cleaning my teeth and coughing) this was last February 14, happy Valentine’s Day lol 😂
Last March I discovered I have osteoporosis, A very angry trauma and orthopaedic consultant broke this news. I had had dexa scans every year, due to having to take steroids and other medications that can cause bone density loss. The consultant told me that I should have been taking bone protection, why wasn’t I? Apparently my dexa scans had been showing osteopenia then osteoporosis since 2014! When I informed him that no one had told me or mentioned treatment he left extremely angry, leaving me in tears and having no idea how this was happening to me.
Eventually in April I had surgery to repair the three fractures and had a fairly good outcome, home from hospital for a few weeks, then a readmission to a different hospital still due to being sick because of morphine toxicity back in March. It was at this hospital in May where I had my first zoledronic acid infusion.
I had an mri in September which found a further fracture, but being unable to get an appointment with the surgeon until January 2023 it was to late to repair it and this continues to cause significant pain and muscle spasms.
Following an appointment last Thursday with the spinal surgeon he said he is unable to do anything to help, so I seem to be stuck in this limbo of struggling with pain, mobility and just generally not having a life.
I have been having physio, hydro, acupuncture, using heat pads etc, but nothing seems to help.
I am just so fed up, really struggling to know what exercises are safe, I’ve been told that bone density is worse in my hips than my spine. So I am very concerned about further spinal fractures or a hip fracture.
I guess what I am looking for is ways forward in dealing with the pain and gaining mobility. I can walk short distances, but would love to be able to do simple things like going for a walk and maybe going back to work. I run a pub and miss the banter of working on the bar.
I’m sorry I’ve droned on, I hope you may have some ideas I can try
Love and gentle hugs Sheena x 😀
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jessielou
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Goodness me - what a story. It’s beyond be belief that no one bothered to tell you you had osteopenia all that time when you could have tried to do something about it. I suppose that must have been what made your consultant angry! Hopefully he was angry on your behalf and not at you. How can you take action if no one mentions you have a problem?
You’ve basically done all the things I would have suggested to you - does whichever dept is dealing with you osteoporosis have a specialist physiotherapist who knows how to deal with osteoporotic patients? Or does your hospital have a specialist pain clinic? Hopefully someone like that could help you get the good pain relief you really need. It’s very hard not to be able to do the things you love because they are the things that make you feel *human*.
The best I can come up with and it’s probably not very good because bars are busy places - is would it be possible for you make yourself comfortable behind the bar - take the cash or something and enjoy the banter while not actually doing any of the heavy work? What about a blue badge for your car that might be useful or even a mobility scooter if you want to go longer distances. I use Nordic poles because I find they take the weight off my hips and knees but (so far🤞) I don’t have the spinal fractures you have. I have started lathering on Better You Magnesium Muscle Oil recently - no smell but sticky - and I think that has helped the painful and unpleasant muscle aches I’ve been getting through my buttocks recently so that might be worth a try.
Have you looked through the Royal Osteoporosis Society’s website for ideas, there is a massive amount of information on there and there is a number you can call to speak to one of their nurses royal osteoporosis society
your doctors don’t seem to have good enough suggestions for the pain.
Has gabenpentin been tried for the pain- that has many dosage levels. And I don’t know if that’s allowed with osteoporosis.
This might not help but ice packs helps me very temporarily and chelated magnesium and also certain exercises help to loosen the muscles.
Have you considered evenity monthly shots ? It’s supposed to be the fastest most highest level to building bone and bone density . I myself do daily Tymlos injections.
Oh that sounds dreadful and sadly familiar. After fighting with my doctor for xray and scans on my back for over a month ( He kept insisting the pain was due to my kidney stone removal) it was discovered I had 6 vertebral #s T13- L5 inclusive, neatly all in a row, they then said 'no wonder you're in so much pain'.🙄 Another fight to be referred to a specialist on book & choose, abs. useless, said wouldn't 'put cement in as would create more #s, like an avalanche '. Finally got a different gp who said ' first let's sort out pain meds', I tried morphine etc then finally got Fentanyl patches, down from 50 mcg to 12, just keeps the edge off, top up with Tramadol when too much.👍
Have been totally left to my own devices, physio(waited a year) useless, exercises he gave made pain worse. 🙄 I lost 3 stones re med side effects, now put on 1 and stable. I live on a recliner sofa, can only stand/ walk a few mins but have built this and my muscles back up so can do bits with rests in between. Got a rolator wobbled down the garden and back earlier, so pleased with little improvements.🤗
Sometimes they just cannot fix you so you have to adapt. I take Adcal D3, refused meds re side effects and I cope really well. Tis what it is but I wish someone had told me to take calcium sooner, who knows if it would have made a difference. 🤷♀️
Long post sorry but been there, am there and may well always be but I am determined to make the best of it. Now where's my sun? I want to improve my tan... Good luck with getting things better for you. 🤞
Sounds like you’re making the most of a horrible situation fraid. I’m glad you’re pretty much on top of the pain - that must make an huge difference and keeping going. What really gets me though is that if someone did all that damage to their spine etc in say a road accident would doctors just say ‘suck it up’ and write them off the way they seem to do for osteoporosis patients?
There’s a lot of things I wish someone had told me sooner - like serious weight bearing exercise, being hyperthyroid, having inflammatory arthritis, taking steroids, family history etc, etc. but nope - you seem to discover all that when it’s too late. Grrrr!
Hope the sun is out where you are - it’s 20C here, 0% rain but windy so it feels (to me - I’ve got no thermostat) very cold.
Indeed, it does seem like OP is just accepted as one of those age things that happens mostly to women post menopause. Hindsight being another wonderful thing always too late! Yes, got me shorts on coz sun was out, but wind very cold, my thermostat doesn't work either re M.E so I could be on fire and wouldn't know either. 🤷♀️ Have a good day. 🤗
Also I use heat vest, really helps, got pressure cushions from OT. Now I can just ask for whatever I need and it's granted maybe coz that's all they can do for me . 😕
I'm afraid I don't have many ideas for helping with pain but this podcast by Andrew Huberman, although not a quick fix, is very interesting on what pain is and ideas for dealing with it. podcastnotes.org/huberman-l....
Wish I had more suggestions and hope you get some relief soon. Sending some very gentle hugs right back.
I'm right with you...I started with one at T7 last Sept 18, 2022. A searing hot knife feeling in my thoracic. Now today, I'm at #8...my insurance authorized surgery for the first three, now they are making up confusing denial reasons, while time ticks by. The pain is real, and there's no where to go where it feels better this last one. Lying down, no...lying on sides, no...sitting for a short time, walking is painful. I do walk around the neighborhood, it's a 1 mile walk, I use hiking poles, helps to hold me up with less pain, keeps arms strong, and in case I were to fall, they may help. I do stretching exercises, mostly from PT from spinal fusions in the past, but I removed all yoga, as mine are in the thoracic and lumbar. It is most frustrating to need to do daily chores, and it's just too hard to stand up that long, sometimes even cooking a meal is nearly impossible. I'm on Tymlos injections, I had a parathyroid adenoma/tumor that started this mess of OP. I had a few doctors miss that thing, and then a few that messed up my hormones, and that is a problem as well. I also have autoimmune disease, but have not taken but a few short rounds of steroids. It's very hard to build back the bone with diet, it's a very popular topic, but it's a more difficult task to accomplish. You cannot exercise your way to it either, but that will keep you strong, and muscles must be considered vital in this mess. I recommend the book, Great Bones by R. Keith McCormick, DC.
Hi Jessielou,Your story is very similar to mine where I was misdiagnosed for 2.5yrs with a leg discrepancy.
But was walking around doing 3 jobs with a fractured spine and the pain indescribable, back and forth to the Dr's like I'm on an elastic band. Until I demaned to know what was wrong with my spine. I was sent to see a lady above a Physio, she stood at the back of the room as I stood with my back to her, I hear "oh my God!" I'm saying OMG what? "Your spine has moved!" I also have wear and tear to the Cervix of my neck.
There's nothing they can do to repair the damage as it has moved 2 inches from my lumber to the base of the spine being in my right buttock. I walked with sticks for 7years until it felt like my spine was being crushed, and now use an electric wheelchair (NHS provided) for when I go out, use sticks indoors.
My GP at the time asked if I ever go out! I was never in working going for long walks.
I don't know if you have been prescribed Adcal(vit d + calcium).
I have natural yoghurt and milk to boost my calcium aswell.
The Vitamin D some people don't absorb it very much as others and I recommend it to anyone of any age because of the climate we live in.
I'll get to the Morphine now, I am on 15mg patches which I change every 6th day which I find do the job, yes I get stiffness in my spine but use a heat cream rather than pads lasts longer, not everyday just as and when needed.
As a Physio won't touch me as they could do more damage than good. I was recommended to purchase a balance cushion on a dining chair and gently go side to side and back and forth to keep my core strength, I also exercise on my bed as I can't get on the floor and I am safe and cushioned.
Lie on your side arm stretched under your head and other arm straight down your down your side and lift your leg as high as you can (even if it's a few inches) say 10 times and turn over and do the same on your other side. I would recommend an exercise ball where you just lie front on it and go back and forth using your feet. It's all low impact which is what I would recommend. You can also ask your Physio for an exercise sheet for low impact exercise.
I apologise if I have given you a lot to take in, but it's just being the best you can with what you've got.
I have been 10yrs since proper diagnosis and live alone and am fiercely independent. I always say the biggest thing all this has taken away from me is walking I loved to walk for miles, but life has a way of throwing a curve ball and I honestly believe it's how you deal with these things as they don't define the person you are. I really hope this helps you, ask for help if you need Occupational Therapy, anything. There's no shame in that.
I wish you all the best, take each day as it comes, not everyday is a good day. It doesn't matter tomorrow will be better.
And (some?) doctors act like osteoporosis is no big deal. Maybe for some, even most, it's not. But for some people, cancer turns out to not be that big a deal either, doesn't mean you don't take it seriously. And from what I'm reading, for some people, osteoporosis might be worse than cancer. Progressive, potentially decades of pain, no chance of cure or even remission, lifelong dependence on drugs that could hutt more than hrlp, and no one cares. (Except fellow sufferers, but, relative to cancer? Say cancer and everyone knows, "that's bad." Say osteoporosis, meh.)I'm so sorry.
I'm evidently in great shape despite bad t-scores, past fractures, and near chronic, sometimes acute pain. I "look healthy", I can still move...relative to people with "real problems" I guess I am doing well. But it has still upended my life, I'm having to figure out if I can even still work (at my job as a hairdresser, which is an exercise in pain tolerance from my first haircut until the next morning,) I have to always be mindful that one wrong move could be enough to fracture another vertebrae or two. It's NOT nothing, even for me.
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