Terror

[mully]

Hi looking for advice from people who are already physically dropping to bits haha My list of ailments is embarrassingly long MS with severe joint and muscle pain, Trigeminal neuralgia Gastritis, constipation, and now Osteoporosis If I was a dog they would shoot me I haven't started treatment for the osteoporosis yet Looking at the list of side effects I have half of them already and I'm so terrified of the osteoporosis treatment making it any worse than it is already but I am equally terrified of breaking a bone I have always been one for the dramatic 'If you think things can't get any worse they usually do' I imagine myself having everybody's bad experiences rolled into one, writhing around in a bed of pain Haha Not that I wish any of you to have multiple horrible conditions but if you do, What treatment did you have and what were your experiences? If you have got this far Thank you for reading

[Fran57]

Hi Mully.

I’m sorry to hear of your diagnosis. There are lots of people here with great advice and support.

I can only suggest you continue to do research about osteoporosis and drugs offered.

You must feel in a bit of shock at the moment. You have enough to contend with, without this.

I was diagnosed nearly 6 years ago and I’m still shocked and expect my bones to collapse at any minute!

So far, I have chosen not to take the medication offered, having done a fair bit of reading, but it’s very much a personal opinion and everyone’s experience is different.

I would really urge you to ask your GP to check your parathyroid (nothing at all to do with your thyroid) hormone levels, because for some (like me) it can be strongly linked with osteoporosis. It’s only a blood test and it’s important to know.

I hope that’s helped a little but, as I say, there are people who can offer you their gained knowledge.

As for the broken bones, as my husband says, “it’s not compulsory!”

Take care,

Fran 😉

[agingfeminist]

i have prolia injections every six months. Now about to have my fourth. No side effects (not even a sore arm). If you stop taking it you do have to take some other treatment. I hope I can carry on taking it for life. At present I don't think anyone ahs been on it for more than 10 years...10 years seems a long time. I am struggling with adrenal insufficiency at present so that colours my judgment...surviving each day seems a major challenge.

[Calamintha]

I have very similar issues (including the terror aspect). My main fear was the osteoporosis. Cutting a long story short, I had an utterly awful reaction to AA but so far perfectly fine with Risondrate. I decided not to accept the injections because if you stop you have to take Alendronic Acid (or similar) and I'm not going through that again. Also look up "rebound effect" with the injection. it's something that really put me off. There are many aspects you can help yourself with such as diet, supliments and exercise, and being pro-active can lift ones mood.

[fraid]

Kindred spirit here! I often say if I was a horse they'd have shot me long ago. I have M.E, OP with 6 # vertebra all in a row so my whole lower back is shot, kyphosis making me 6" shorter, arthritis, occ. ibs ( had colitis for 18 years) asthma. I can only stand/ walk for a few mins at a time, have to lie banana shaped (I already bruise like a ripe one ) sleep on a reclining sofa - and now I'm going bald! 🤷‍♀️ I know it's not a competition and others are worse but I do feel I have been greedy in the afflictions zone. And I don't deserve any of it, no fair! ☹️

My first line of treatment is humour which failed me for a few days as I'm sick of everybody atm, inc. myself but just writing this is making me laugh so I'm better already. I refused AA (I take milk thistle though coz I drink a lot of beer, which also makes me happy😂, just a pun,I mean of course Alendronic Acid) and Prolia due to side effects, just on Adcal D3. Physio useless. 🙄

I was warned if I # another vertebrae I could be paralysed so was afraid for some time , less so as realised I can't just sit still for the rest of my life and I got my strength back. You can't worry about what may or may not happen or when so just be careful and sensible- no more dancing on a table for me.😁 I have been housebound for years but bought a Rollator and have wobbled down the garden a few times, shall again if it ever stops bloody raining.🤭I like to sit in the sun too.☀️

I write( not sure if allowed to mention my book ANGER BROUGHT THE FIRE Stage 1 is out there) on fourth book atm, watch lots of tv esp. humour, films ( have Sky- I never go out so why not) and my shower in a minute will wipe me out for the rest of the day. Ooh, and Wimbly mens tennis on today, maybe bit of housework after rubbish cleaner came, so busy gal. I talk too much...🤭

Doubt if that helps atall but I find a positive attitude helps more than anything else. I also have to live with an uncaring unhelpful slob who I divorced last year and watch him go out with his girlfriend while I'm stuck on the sofa. I now have a temper I never had before borne of frustration and the injustice of it all but mostly I am content. Accept and adapt is my motto, don't forgive, never forget and never ever give in! 🤺 Keep going, keep smiling. 😊

Best wishes X🤗

[Raleigh59 in reply to fraid]

Hugs

[susie193 in reply to fraid]

Love your humour. I sound like you except I also have hypothyroidism as well. So I beat ya. 🤣😘

[Valerie0106]

I am posting a link with a decision making tool which can be used to show the likelihood of benefits from taking bisphosphonates. You will need to know your FRAX score to use it - you can ask your GP or hospital, whoever is prescribing, to tell you what it is. Good luck.

nice.org.uk/guidance/ta464/...

[Southerngirl2787]

Some of us are train wrecks, as I say! I'm Lupus, Raynaud's, Hashimoto's, AS on the autoimmune side. Then I had a parathyroid adenoma/tumor thrown in to destroy my wrists/hands/nerves/spine! I'm 11 surgeries since 2014 to try to stop/fix the damage done. I had severe OP, tumor removed, it improved to OSP and OP...then with the autoimmune going wild, my hormones dropped, and severe OP set in again. Now in the last 8 months, I've had 8 spinal fractures. I was the biggest advocate for all natural anything...including not taking OP meds, at all, not even after the parathyroid tumor. I still refuse to take any Bisphosphonates, no way, no reason. I am on Tymlos after my neurosurgeon sternly said we need to build bone fast....I have 3-4 disc that are on the verge of herniating, I've already had four spine fusions. So I agreed to take it for 3-6 months, as he said you get good results in that time frame, and 6 months is going to be where you have 90% of the benefit from it. Side effects were awful the first two weeks, then I stopped for two days, and when I started again, most of the side effects were gone or greatly reduced. Headaches, severe dizzy spells, nausea all day long, hit the wall fatigue. I had HBP the first week, then it settled back to normal. I also gained 8 lbs at the six week mark on Tymlos, overnight, literally, in one day. Now, I'll have to see what to do post Tymlos, but I cannot take anything that interferes with bone fusions, and bisphosphonates delay healing, delay bone fusing.

[fraid in reply to Southerngirl2787]

I think you are winning on the 'I'm one of life's victims' list so far, you poor thing! I do hope your body has run out of ways to injure you and things improve for you- for all of us too. 🤞X

[Southerngirl2787 in reply to fraid]

I needed a good laugh! I keep trying to outsmart my body and it seems to say, "oh yeah, well, I'm not done yet"! I was in healthcare 30+ years, it used to be drugs "did no harm"....now Big Pharma seems to have it backwards, and they push anything they can make a billion on, be damn the side effects and long term issues caused! Our US FDA is so corrupt too...who buys that they didn't understand the dangers of Prolia and Bisphosphonates?!

[Frodoles]

So sorry about all the things you are having to put up with at the moment. I detect a sense of humour in there 😀 I use it too and it's very valuable x I am actually very anti any chemicals like bisphosphonates etc etc. It's just me. So I have gone down the route of supplements. I researched and have a mixture of Now Foods Bone Strength. Vit C daily Vit D3 + Vit K2 mk7. So far, not sure if it's luck, I haven't broken a bone since about 2015. That was from a fall - my wrist. But I've had more falls - My balance is rubbish 😉 I haven't had another break since then. I fell a year ago in May and thought I had broken my hip again, right onto the hip I broke 20 years before. But no! Mind you just as painful and the tendons, muscles and ligaments I tore are still a work in progress 😀. I do strength and balance classes-at my level. Of course Covid stopped all that. But have started again now. Not sure if this will help but hope some of it does. Have you had any recent fractures? I also take glucosamine sulphate with chondroitin, plus MSM for my joints as also have arthritis. And yes I have a tendency to rattle 😂 x

[mully]

Hi Thank you all so mch for your kind comments Well I have made a decision not to make a decision I mean 3 months ago I didnt know I had this even though I have probably had it for ages I am going to deal with one problem at a time. Some treatment for my ulcer, followed by some pulsed steroids for an MS relapse Then an operation for the trigeminal neuralgia Then when I am over that lot, I will torture myself with treatment for my osteoporosis haha Had some great advice from family "What doesn't kill you makes you stronger" ( whoever came up with that useless piece of crap) Unless it does kill you, or you wish it would,Hahaha, and my personal favourite "Well no point worrying,you might get hit by a bus next week" to which I replied "good idea,I might just stand in front of one" Sorry my humour is very dark Haha Thanks again for your kind comments

[Verbena1]

Hi, I know the feeling! But just know that there are some things you can do to absolutely strengthen the bones and they’re not harmful to the body. Diatomaceous earth is one, boron is another…and there are more. These have in a short time been a game changer for me and many others. I’m no longer on any bone drugs - too risky long term. I was watching a video not too long ago where the man speaking was talking about being in his 70s or so and after proper supplementation with some of these things, being told by his doctor that he now has the skeleton of a 20 year old!

Feel free to msg me anytime~