osteoporosis pain.

[Mavary]

Hi guys. I’ve had seven spinal fractures from my waist up. The T12 being the worse and most severe. I just wondered if anyone has the same and can they do much? I went shopping a couple of days ago for Christmas cards. I thought I’ll get them all because I don’t want to keep going out. After about five cars the familiar aching came on but being the stubborn person I am I got nearly all of them and my back was killing me. I Just couldn’t get another card. The assistant came round and asked if she could help and I got her to get the last few. She also packed some Christmas paper and bows and ribbon for me. I had to walk across the road and back to the car. I could barely make my legs work. I walked into the pet shop and paid for some no mess seed for the birds. A lovely young man took the bird seed and my trolley to the car. He put the trolley in the car. I was so pleased.

Anything I do with my arms is really painful on my back. Washing myself, cleaning my teeth, washing up anything at all. I had a shower earlier and when I got out I couldn’t even hold my head up. I put my dressing gown on and went to sit in the lounge till it wore off.

what I’d like to know is does anyone else get like this?

[Hidden]

I have the severe pain in my back that you're talking about as I broke T10 through T12 and have severe osteoporosis due to 27 years of having anorexia. My parents are severely osteoporotic and I am currently taking evenity. My vertebral fractures T10 through T12 happened in 2011 and I really technically need to get a spinal fusion but my bones are too bad right now for them to even be able to do the surgery. They don't even know if they'll ever be able to do the surgery so right now I have severe kyphosis and have lost 3 inches in height and in bent over like a upside down L. I have tried back braces in the past and they were helpful in keeping me more upright and relieving some of the pain but currently I am going through such bad hot flashes due to lack of estrogen that I'm not able to stand wearing a brace as I know that I would just sweat right through it. The back doctor that I gave to really wants me to get the spinal fusion but since I can't he says well then you at least need to wear a back brace so that the curve doesn't continue to get any worse and hopefully that would help keep you more upright and help to not make your pain get worse but like I said I'm stalling because right now these hot flashes are so bad that I can't get them under control even with being on HRT for 3 weeks it's not working. I'm in so much pain that I can't stand it and I'm so hot that I can't stand it so my life is limited to sitting all day and other than laying in bed at night and having a hard time sleeping. I can't get out and do anything that I need to do and I'm only 39 years old but I have the body of a 95 year old.

[Mavary in reply to Hidden]

I think maybe see the Dr for them to maybe put you on HRT. I took HRT for twenty something years . I had to come off it because of terrific migraines that knocked me off my feet. It took a long time after but I don’t suffer them any more. That was 2006. I got my first fracture in 2013 which went unrecognised. The Dr gave me pain killers and sent me away. I had six more fractures after. Had I stayed on the HRT I would have been spared any fractures. They didn’t think at the time it was good for you and caused more harm than good. They’ve now changed their way of thinking and recommend HRT if you bones are not good. It’s worth a try if you haven’t already questioned it. I can’t have it because of the migraines. I wish I could. My Sister stayed on it and it must be at least 30 years she’s been on it. Maybe more.

[Hidden in reply to Mavary]

Now are you just telling me to go on the HRT for the bones? Or also for the hot flash relief? Because like I said the doctor did put me on HRT and I currently am taking it I've been taking it for 3 weeks now on the 0.075 mg patches although I'm not taking it for the osteoporosis I'm taking it for relief of my hot flashes due to severely low estrogen. See I'm getting evenity treatment for my bones so I'm getting the osteoporosis treatment. I know that HRT does help your bones but I wasn't going on for that reason I was going on it to try to relieve my hot flashes however it's not giving me any relief and I'm angry because I asked the doctor about if we could increase my dose and she's like oh you know this should kick in in hopefully another week or so meaning like that I should be on it at least a month and I'm angry because I see her in a couple weeks and she already refilled my prescription for me to take the same 0.075 mg next month which means she's going to want me to take it at least 2 months at that dose and I think that's stupid because we already know that that this isn't giving me relief so I don't see why she can't just move it to 1mg. I mean the way I look at it, I know that I'm not even making estrogen at this point because that's what my blood test said so I know that I'm going to need more estrogen than the normal person so I don't know why she can't either put me on the 1 mg patch and if that doesn't kick in then give me like the birth control pill or something that would have more estrogen in it because right now this isn't enough estrogen to turn my hot flashes off... From others I've talked to you on these websites it doesn't take anybody longer than 2 weeks for the HRT to kick in unless it wasn't a high enough dose....

[Southerngirl2787 in reply to Hidden]

Are you on estrogen or estradiol? I have found estradiol to the the best option, I take bioidentical ones, these are tablets, I have stepped up to 4 mg per morning, as I was on too low of a dose to do anything to help the OP. I am starting to feel better, but it took a few months, about 3 months, no more night sweats and overheating all the time. Feeling stronger and muscles are responding to exercises as well. I had to move myself to a hormone specialist to get the correct doses of hormones, as the doctor, Gyn was basically clueless. I now see a ANP, she's great.

[Hidden in reply to Southerngirl2787]

I'm on estradiol 0.075mg patch which I've been on for 3 weeks and it's not helping my hot flashes at all. Because she is a doctor in a week but she is still wanting me to stay on this for another month at this dose which I think is stupid because it's not helping at this dose and most people say if it's going to work it would've kicked in already at this dose. She told me bc I'm making NO estrogen at all that my body might need a month for it to kick in but it's almost been a month and no relief at all and I'm just worried not going to work😭. Are you saying it took 3 months for the HRT to kick in and take away your hot flashes and feeling hot all the time???That would make me feel better if I knew it was eventually going to work buy right time severely depressed that it's not working...

[Southerngirl2787 in reply to Hidden]

It did take 3 months, but, we were increasing the dose along the way...to find the right dose for me, and blood testing monitored the levels. I settled in at 4mg tablets. Mine said we may need to go to 5mg tablets, but are staying here for another 3 months. That puts me at one year from the increase in my dose. I tried patches, they didn't work for me, neither did creams. I have skin that is offended by everything, and all I got was horrible rashes, no relief from symptoms.

[Hidden in reply to Southerngirl2787]

I wonder if that's what they may have to do with me is test different strengths although I've only got one more strength to go up to so I don't know if she just wants to keep me at the 0.75 strength for 3 months and if I get no relief then move me up to 1 mg? Or I don't know if I would get better relief if I did like the Estradiol oral tablets rather than doing patches? as I've heard that sometimes people can't absorb the patches as well?

[Mavary in reply to Hidden]

I think I’d prefer the patches because it then goes where it’s needed.

[Hidden in reply to Southerngirl2787]

I wish I just knew what the right dose was for me or if it was even going to work at all or what type of HRT would be best to give me symptomatic relief as right now I feel like I'm not understanding why the 0.75 isn't giving me relief and if it just needs to be given longer time I just want some relief and I want some answers to make me feel better. The doctors have never had anybody like me who has low estrogen due to anorexia so they're not exactly sure if this is going to work or not but I guess it's different and takes longer than people who are just on it for regular menopause. But I would think symptomatically it would be the same like if I'm making no estrogen I would think that they would just put me on a higher dosage although they can only go up one more strength. Also I wonder if it makes any difference that I'm using the generic brand of estrogen patches? as my insurance will only cover the generic Estradiol 0.075 mg patch

[Southerngirl2787 in reply to Hidden]

Low estrogen due to low body weight is common...fat, especially belly fat produces estrogen. I am not anorexic, but my weight was too low for healthy bones, and low belly fat, thus my first labs showed nearly zero estrogen. Have you gained weight to tell your body you are getting healthy? It's hard to build bones if you don't eat enough protein and fat. Carbs are not essential to humans, so I don't bother with those. I can only consume small meals, issue related to fractures, so it's only protein fat combo. Gradually weight came up, add in hormone replacement, and protein shakes as I can, and my body decided it would start healing. If you have no relief from the patches, it makes senes you could have issues with absorption, they did not work for me. Seems a higher dose is warranted as well.

[Hidden in reply to Southerngirl2787]

Well no obviously I'm still underweight which is the whole reason that I have the problem with the pituitary not producing the estrogen. And I've not been trying to gain weight because obviously I'm anorexic and I'm terrified of that and since I'm terrified that the patch is going to make me gain even more weight because of it being a hormone replacement therapy in any form and I've always heard that that can cause weight gain then I've been even more restrictive. She thought that the patches would give me the estrogen to give me the symptomatic relief of hot flashes even though my body weight is still low but it seems like I'm either not absorbing it or maybe it's not been enough long time but I'm getting the side effects like the sore boobs in the discharge and I don't know if it's affected my weight because I've been too afraid to weigh myself but I have been eating even less since I've been on them because I've been terrified that they're going to cause weight gain. Do people get more absorption from the pills or the patch? Those are my only two options as my insurance won't cover the gel or the spray so I just wondered

[Mavary in reply to Hidden]

You should try to eat a little and make it full of goodness. You don’t need to put on weight to eat well. But dont cut down what you are already having because in the end you will make yourself very ill. but you already know that don’t you? You take care of yourself because nobody else can do it for you. I know you’ve got some strength somewhere. You’ve just got to find it. I’m sure you’ve got the backing of lots of people. Accept any help you can get. Xx

[Southerngirl2787 in reply to Hidden]

The pituitary is important, vital to our lives with some hormones, but estrogen/estradiol comes from ovaries, our fat, the adrenal glands...the ovaries being the top producer during reproductive years. I'm so sorry you are terrified of gaining weight...which is what your body must have to get your bones strong again. Each of us is different on what absorbs best in our body. I have not gained weight at all taking hormone replacements, and I've been on them about 11 years now. I found the tablets to work the best for me. I do understand the issue with weight gain...my mother had me convinced I was unworthly of everything in life if I wasn't slim...took years to get over that mindset.

[Hidden in reply to Southerngirl2787]

Well then you're saying that you didn't get any relief from the HRT patches until you started gaining weight?Or was it that you were still underweight when they gave you the patches and you did get relief of the hot flashes? And if so how long did it take for you to get relief from the hot flashes with the estrogen patch and what dose were you on?

[Mavary in reply to Hidden]

I was on the tablets for years because I had a hysterectomy in my early thirties. Yes they did help with hot flushes but I had to stop them because of migraines. I haven’t taken anything since 2006. I still get hot flushes but I don’t think I get as many.

[Southerngirl2787 in reply to Hidden]

The patches didn't work for me at all, my skin is very sensitive to adhesives, and quickly turned into a rashy mess, red with blisters. I stuck out a month, my labs showed no absorption from them. My doctor was the one explaining the connect with needed weight gain, to give the body more strength, and provide weight to build more bone. Some folks add weight vests, backpacks with weights to walking to give more weight to build more muscle. I can't do that, have to wait until all thoracic and lumbar fractures have healed. I was told that 127 lbs was the "line in the sand" for me, my original height was 5'5"...now about 5'3". I was to get there and stay there or go higher. So I did, and it was difficult, one I wasn't hungry at all, so eating when not hungry is not fun. But I'm there now, and work to keep it at 127. I was still underweight on the patches, but I don't think that's the reason they didn't work.

[Hidden in reply to Southerngirl2787]

Okay thank you for your help. I will talk to my doctor and see what to do next. I just hope this works out for me

[Mavary in reply to Hidden]

I would think you need to give it some more time. Trust your Drs. They know what’s best. You can always have a word with them.

[Hidden in reply to Mavary]

Thanks I will. I just feel like they don't understand because they're not in my body so they just keep saying give it more time without increasing the dose and they don't know how miserable I am. I just wonder if maybe I would absorb the oral better as I can't get any other brand of patches and the spray and gel are out as my insurance will not cover this and I'm on a very limited fixed income due to social security so I can't pay for anything other than either this patch which is the generic of vivell./dotti and or estrogen pills. Those are my only two options so I always heard that you get better absorption through the patch but it sounding to me like and it would make more sense to me that wouldn't you get more absorption through the pills if the patch isn't working? I don't know I'm not a doctor

[Mavary in reply to Hidden]

I can’t take HRT because of Migraines. Really bad ones.it was coming off HRT that caused my fractures.. I was ok till about seven years after I came off it. I get hot flushes even now. I came off HRT in 2006.

[Hidden in reply to Mavary]

That sucks. So what do you do for the hot flashes now? I'm on HRT but it's been 3 weeks and no relief so I'm scared it's not going to work if it hasn't worked yet. I'm on estradiol 0.075mg patch

[Mavary in reply to Hidden]

I’m not on anything as such. I have been given Vagiruk for urine infections.nit has 10 microgams of estradiol. But you put them inside. Not take by mouth. I haven’t had any migraines with them so I’m hoping I won’t get them any more. I don’t think it affects the hot flushes. Maybe I don’t get as many. I’m not sure.

[Mavary in reply to Mavary]

Vagirux.

[Mavary in reply to Mavary]

It’s 10 microgams of Estradiol. So same as you but used differently and a different dose.

[Hidden in reply to Mavary]

Well I'm glad at least that you're hot flashes don't bother you but mine are severe and I feel hot 24/7 so for me this is a huge deal that I'm not getting any relief it's like oh my gosh I need something really soon or I'm going to break out of my skin!

[Mavary in reply to Hidden]

I’ve had my hot flushes since 2006 which is when I had my hysterectomy. you never get used to them you just learn to sit quiet and relax when you get them. If you try to fight it they get worse.

[Hidden in reply to Mavary]

I'm dying from The Hot flashes right now and feeling hot all the time. Like I said I'm on the s radio 0.075 mg patches but it's been 3 weeks and I'm getting no relief. What how long did it take you to get relief from your hrt? And since you can't take HRT now.l, what do you do for the hot flashes??? I'm in severe need of relief and I've tried black cohosh at 80 mg a day and that didn't do anything but maybe I wasn't at a high enough dosage? See mine are severe hot flashes and feeling hot all the time so maybe it works for some people but for me I think I might need more...?

[Mavary in reply to Hidden]

I think it takes a few months rather than weeks to help with the flushes. I had a hysterectomy in my thirties and I had dreadful hot flushes. I used to go and clean for my Mum and Dad. I had to get it all done quite early. The sweat used to roll down my face. Before hot flushes I didn’t know what it was to sweat. Boy oh boy did I know after. I woke up a few days ago and my pillow was wet. Where I had a hot flush and I think it must have woken me up. It’s a horrible thing to have.

[Hidden in reply to Mavary]

Are you saying that it does take a few months to kick in and take away the hot flashes? How long did the HRT take to take away your hot flashes when you were taking it?I don't sweat as much as just feeling hot flashes all the time and then feeling hot all the time too but then also worsening into hot flashes as well. Today makes 24 days of being on HRT estradiol 0.075 mg patch so I've finished the first box so Thurs will make 4 weeks on it and Sunday will make one whole month on it. I go to see the gyno next Monday so by then I will have been on it 32 days. I was hoping that it would be right when she said give it a month to kick in but this thing about it being almost a month and it not kicking in is really worrying me plus the fact that she's keeping me on this whole dose for yet another month I feel like what the heck? I mean if I'm not getting any relief shouldn't we at least move me up to the 1 mg? I've always heard that if you're not getting relief that means you're not on high enough dose? I hope it's just a matter of that it just needs another month to kick in and that this is normal because I don't even know at this point if my body is absorbing it like I wonder if they can tell on blood test to see if I'm even absorbing any to see if my estrogen has gone up any? I just wish I knew if this was the right treatment and if this was normal for it to be taking this long?

Are you saying you do think that it takes this long at least if not maybe another couple months for it to kick in to take away the hot flashes?

[Mavary in reply to Hidden]

I was on HRT for over twenty years. It’s been pretty bad since I came off them but better to have hot flushes than to have the migraines I had.

[Hidden in reply to Mavary]

I'm so sorry to hear about all of your back fractures as I can relate in having three broken bones in my back and then I also broke my right foot in 2007 so I know how that pain feels and I'm so sorry that it got undiagnosed and that you were just sent away. How did they ever heal the fractures in your back? Are you wearing a brace or are you kyphosis hunchback like me?

Now when you are on the HRT did it give you relief from your hot flashes? And how long did it take to kick in? Because I've been on mine for 3 weeks now and I've had absolutely no relief.

[Mavary in reply to Hidden]

I was in my early thirties when I had a hysterectomy and they gave me HRT. I don’t remhaving any hot flushes while on them. Maybe you are on a low dosage.

[Hidden in reply to Mavary]

Well I'm on 0.075 mg which should be a good enough dose but with me producing no estrogen maybe that's why it's not affecting me any. I've been on it for three and a half weeks now and I'm not gotten not 1% relief in hot flashes and I have an appointment with her in 2 weeks and she already has refilled my prescription for the same exact days and just says give it more time. I'm very frustrated as I feel like she should at least move me up to 1 mg and see if I can get any sort of relief or even switch me over to a birth control pill which I think has more estrogen than HRT because it's clear that I need more estrogen to be able to turn off these hot flashes in my opinion

[MayGodBlessYou]

my Mum has had similar, i wonder if you or your specialist have to consider a new treatment.

my Mum mentioned pains, difficulty walking, back spasm, back feeling heavy,

seemed to me to be in the 5th or 6th month of a prolia dose.

i think its to do with low or nil levels of the drug at that time, as well as in the 5th/ 6th month of the previous dose(s).

[Mavary in reply to MayGodBlessYou]

I don’t get spasms or anything it’s just a horrible nagging pain that doesn’t stop till I sit in my recliner or bed. I get it when I do anything. Even washing up and preparing meals give me a lot of pain.

[Hidden in reply to Mavary]

I get the same thing that you're talking about mavery. I think it's from the terrible osteoporosis and of course with me I have kyphosis which I don't know if you have but being hunched over really makes it unbearable to do anything at all especially anything where you're having to stand up or even if you're sitting down just sitting up hard enough. Like if I go to a grocery store I have a hard time driving first of all and then when I get there I have to hold on to a cart or I can't stand on my feet for longer than a minute. I'm completely dependent on my parents to do everything for me as far as cleaning carrying things as I'm not allowed to lift anything that's over 5 lbs. So they basically do all of my grocery shopping for me and my dad drives me to doctor's appointments that are longer than 10 minutes away because it's just too painful for me to drive very much. But they can't live for me and so unfortunately I have pain when doing anything like you said taking care of myself taking a shower trying to cook even just standing there in the shower washing myself is hard because it's just so painful..

[Mavary in reply to Hidden]

I do, and the big tummy. I hate my shape now. It’s quite depressing. I can’t carry my handbag any more for more than a few minutes and like you I can’t walk too far.

I’ve got a cleaner now and an ironing lady. I claimed Attendance allowance and that pays for them. My son does my shopping on line. I’ll go and buy a loaf of bread or a couple of things but I don’t do a main shop. I’m ok driving. I’ve never liked washing up and now it just kills me. It’s just so cruel that we have to suffer like this isn’t it. X

[Hidden in reply to Mavary]

Yes I'm in the exact same position except my parents do what your son does and I don't have a cleaning lady I have my parents do it and they're in their eighties and eventually they're going to have to stop doing it and then I don't know what I'll do.

[Mavary in reply to Hidden]

You would have to get attendance allowance that would allow you to pay for a cleaning person.

[Hidden in reply to Mavary]

I don't know if you live in the UK or the us but I live in the USA and there is no such thing as that

[Mavary in reply to Hidden]

Do you not get payments if you are declared sick.

[Mavary in reply to MayGodBlessYou]

I’m just left to it now. In the Drs hands.

[Southerngirl2787]

Your pain sounds so familiar! Likely to most of us who have had thoracic fractures. My first was T7, then T6, 8, 9, 11, 12, L1, L3, L4 and T11 re-fractured! Fourteen months of constant, unrelenting pain. Yes, doing the simple tasks in life hurts. In my early weeks with fractures, I'd take a shower, then barely have the strength to hold myself up for drying my hair. My wrists and arms were so sore from holding me up. T11 is the worst pain when it re-fractured, it hit a nerve and caused muscle spasms constantly, seizing my entire back and driving my BP up too high. I've had nearly all of them kypho'd as the damage a parathyroid tumor did a few years back has nearly destroyed the discs in my back. Through daily exercises and walking, the strength is coming back, but these devil fractures are the worst thing I've ever dealt with, and I'm many surgeries down the road at 62.

[Mavary in reply to Southerngirl2787]

Yes same here. It helps being able to talk about it. Nobody wants to know really. If I have a pj day I get told off by my Son. He doesn’t get away with it mind. I give as good as I get. 🤣

[Hidden in reply to Mavary]

Do you wear any sort of back brace? My doctor wants me to wear one but right now I'm so hot with these hot flashes and feeling hot all the time that I don't think I can bear the thought of wearing it for fear that I'll be too hot but yet I need it because I'm having such a hard time standing and walking... It scares me to think that if I continue on this way I fear that I'll end up in a wheelchair but I can't do anything to stop it.

[Hidden in reply to Southerngirl2787]

I'm glad you're at least able to walk and exercise as I am not able to exercise at all and I can only walk and stand for a couple minutes at a time. Do you wear a back brace? My doctor says that I need one but right now I'm suffering so bad with these hot flashes that I don't think that I can manage to wear a back brace because I'll be too hot but yet my pain is so bad and I'm having such a hard time standing or walking that I know that I need to get one. I'm so afraid of maybe ending up in a wheelchair if this continues.

[Southerngirl2787 in reply to Hidden]

I was there with you, it's tough when you have to walk, hold up, brace on something. But sitting is not my friend either, I have AS as well. I have a back brace, full thoracic/lumbar. It's good, neurosurgeon doesn't like braces post surgery 6 weeks or more, but with having so many fractures, in a short time, I needed it to keep me safe in cars, on bumpy roads, and to walk, get some exercise in. Right now, with L2, L3 fractured, the brace hits on that area, and it's unpleasant to say the least. Yes, getting overheated in the brace is rough, especially when Texas temps get to the 108 mark! I wore it, knowing the walking was important, and it provides pain relief when I wear it as tight as I can get it. After my estradiol was increased, the overheating was greatly reduced, and it was easier to wear.

[Hidden in reply to Southerngirl2787]

I'm sorry to hear you go through so much as I have several pain conditions and health problems too. I am only on 3 weeks of Estradiol patch 0.075mg but I'm not getting any relief of my severe hot flashes and feeling hot all the time 24/7. I'm so upset that it hasn't kicked in at all. I have no estrogen at all due to being anorexic for 27 years now. I'm burning up all the time and my doctor thought that this would help to take away the hotline and she said that it might take a month or so but I just feel like if I'm not getting relief by now I'm scared I'm not going to get relief. I see her in a week but she's not going to increase the dose. I just wish it would work. How long did it take for your HRT estrogen patch to kick in? Should it take this long or longer? I really need it to be able to stand wearing a brace since they make you even hotter...

[Mavary in reply to Southerngirl2787]

I had a back brace with my T12. I remember wearing it one day . It must have been Summer because I didn’t wear a coat. I was walking with my Niece. I was wearing glasses that changed as soon as you went out. I was carrying a walking stick too. I still have to smile about it but as I walked along people were stepping aside to let me through. We went in for a coffee and there was a slope going up into the cafe. People waited at the top to let me go. It was so funny. I’ve had six more spinal factors since and I’ve tried the brace on since but it presses on my higher up fractures so there’s no way I could wear it. They must cost a fortune to make and it’s such a shame I can’t use it any more.

[Southerngirl2787 in reply to Mavary]

It does change the way people treat you. I get to walk on the airplanes first, and no one cares, they just part the way and ask if you need help. I guess it's nice that folks still care. I use the hiking poles as well, usually just when walking outside, helps build the upper back muscles, and keep me safe. It does feel different each fracture, odd how you can feel the kypho cement at first, then it seems to settle in. I think I am feeling my discs in the lumbar and lower thoracic now, they are partially ruptured, so it doesn't go on currently. Maybe it can be useful at another time.

[Mavary in reply to Southerngirl2787]

My physio noticed some white marks in the bottom of my spine. He said ooh I wonder what that is. I do get a little bit of problems in that area but it’s not fractured. I’d like to know what it was he saw though. They’ve never suggested any cement for my fractures. I think they would be afraid to touch them as my bone score is so bad. It’s funny but people don’t get out of your way for a scooter. They must know you are disabled. They walk straight towards me as if to say you can move. The trouble is I’m more polite than them and I will move. I very often say I’m going to put my brace back on and my sunglasses. 🤣😹. Not really. I’m just joking.

[Hidden in reply to Mavary]

Exactly! It's like they make these braces but it's really hard to be able to wear them because either one they're too painful to wear or two even if you get them custom-made they seem to be really really hot and I can't seem to Bear the heat of it even though it does help with the pain or at least my old one did because they got it custom made. I used to love being in that place because back then I wasn't having the feeling hot and it really helped with the pain and now that I don't wear it anymore I've my curve has gotten aggressively worse but I can't bear the thought of having to put one on again did you feeling so hot although I'm in so much pain that I'm probably going to have to try to bear it because it's getting harder and harder for me to be able to walk and stand up because of the pain being so bad and my back being so hunched over now.

[Mavary in reply to Hidden]

Mine was designed for when my T12 went first. As I had my other fractures it became impossible to wear.

[Mavary in reply to Southerngirl2787]

That sounds horrendous. After I’d come out of hospital y ribs decided to go into spasm. It was awful. Luckily it only happened the once. It did scare me really. I live alone so I did the only thing I could think of. I pressed my emergency button. I couldn’t even talk to the call handler. She only called an ambulance and my Son. The ambulance men stayed with me for ages and said if it doesn’t stop soon we are going to have to take her in. He then spotted some medicine that the hospital had given me but I hadn’t used. He asked me if I had taken it and I said no. So they gave me that and told me to take a whole temazepam as well. I never take a whole one. The spasms finally settled and I had the best night ever. 🤣

[Southerngirl2787 in reply to Mavary]

Those muscle spasms are truly the worst thing. When they seize you, you cannot move, you can't rub it out, stop it. Mine would keep on for hours when they started. Thank goodness you had help immediately!

[Mavary in reply to Southerngirl2787]

Mine took a long time to stop.mit was horrible. I didn’t know what to do because it was my ribs that were going into spasms, it must have been my back causing it because I’d only been out of hospital with my back a week or two before. Luckily it only happened once. I wouldn’t want it again.

[Southerngirl2787 in reply to Mavary]

Likely the nerves in the back hitting the muscles. I'm glad after my second kypho on T11, the spasms stopped, What a blessing!

[Mavary in reply to Southerngirl2787]

Nobody knows or understands what we are going through. It has been a horrendous journey hasnt it.

[Southerngirl2787 in reply to Mavary]

Yes, I would have never thought this type of pain to be possible in my life! Never realized so many of us suffered alone, at home, a rare person understanding the pain. I guess that's why we are here together.

[Mavary in reply to Southerngirl2787]

I think you are right. At least we get some u derstanding. Although there’s nothing we can do about it. Have you noticed how many are added everyday too. It’s really bad.

[Kimm4 in reply to Southerngirl2787]

What is "kypho'd"

[Mavary in reply to Kimm4]

Kyphos means a humped back.

[Southerngirl2787 in reply to Kimm4]

Sorry...it means that vertebrae has undergone the procedure called kyphoplasty. I've had 10 done so far, one twice. They go into the vertebrae (bone) and insert medical cement, to hold it all together again. It reduces the pain significantly.

[Kimm4 in reply to Southerngirl2787]

Thanks for that information 👍

[fraid]

Wow! I think it's remarkable you can drive and go shopping. My # s are from T13 down all lumbars and I can only stand/ walk a few minutes before too much agony takes over. No chance of even getting in a car, have had to eschew hosp appointments as not worth risk of another # which could paralyse me. I do stuff but very quickly then have to sit and so on, so takes me all day to scratch my bum! 😁 I am not a patient person either 🤯so kyphosis annoys, just wish I could straighten up, prob wouldn't put so much strain on my back if I could. I too have been left to my own devices, but have taken up writing and 2 nd book out Jan 5, so sumat to occupy and look forward to. I have just had to accept and adapt, hope you can too. 🤗

[Hidden in reply to fraid]

I can only barely drive 10 minutes and can't shop for more than 5 minutes while holding a cart to help me stand up so I'm not able to do much. But it scares me so bad that I feel like I can hardly stand as I fear if I'll one day be in a wheelchair. My back Dr wants me to wear a custom back brace to help me stand up and be able to hold me up as a temporary solution but I am so hot with these darn hot flashes that I don't think I can stand to wear it for fear I'll break out in sweat and be so overheated that I can't stand it. But yet I'm in so much pain with my back and having such a hard time standing that I might try to wear it. Do you wear any sort of back brace?

[fraid in reply to Hidden]

My comment was actually for Mavary.

[Mavary in reply to Hidden]

Have you got a scooter. I bought one and I love it. The first time I went out in it I went all around the Town. I was so chuffed with myself. I hadn't done that for a few years.

[Hidden in reply to Mavary]

I was thinking about getting a scooter and I don't know what kind to get or how to get one? I'm on social security disability and so I don't have very much money at all and I live alone although my parents basically take care of me they come over and pick me up and spend the day at their house and then they take me back home before my dinner so I spend the night at my heart apartment but they basically take care of all the house cleaning and grocery shopping etc, driving me places etc. what kind of scooter do you have and is it the kind where you just sit on it and it's motorized and you just push a button what do you use it for? Do you do that instead of walking and standing or do you try to walk and stand as much as possible and then for everything else he's the skater? Do you also have any kind of like a walker or a wheelchair or a king or is the scooter the only thing that takes care of everything for you? What brand do you have what kind you have and how did you get it and how much was it?

[Mavary in reply to fraid]

Hi My fractures are from the waist up. My disability is I can’t do things with my arms. My legs are affected if I walk too far. I can walk quite well but not for long. I believe it’s the L fractures that can stop or make things more difficult to walk. My friend has two fractures in the L region and she walks with great difficulty. My Cousin has not long found she has a fracture in the Lumber region. She is on a high dose of pain killers as she couldn’t even get to the loo. My T12 stopped me walking for two weeks. I was in hospital for twelve days with that one. Unable to walk at all. I am walking now and have been for a few years now but I couldn’t walk down the High Street and go shopping like I used to. I’ve accepted I will never be the same. But I’m still here and I find talking to the group and the ROS it helps me to cope with things. Yes I’d like to do more but it’s a case of accepting who I am now. I’m still the same person with some disabilities, but it doesn’t have to change who I am.

[Mavary in reply to fraid]

I only get a couple of things when I go shopping. My Son gets most of it on line. I cant exercise only walk a little way. As I said to someone else t. The Lumbers are the ones that affect your legs and walking. The Ts which is all mine affect your arms mostly. I can’t do anything with my arms for very long. Washing up kills me, sometimes I can’t hold my head up after a shower.

[Hidden in reply to Mavary]

Well my fractures are teaching through T12 so none in the lumbar region but I can tell you that they definitely affect all of my doing anything with my arms as I said but also they affect my walking and it's hard for me to even stand up for longer than a minute so it does affect but you would consider your walking in things just like you said the lumbar does all that for me it's the thoracic region because that's like the part of your body that holds up everything according to the doctors. I'm thinking I'm probably going to have to get a back brace because even though I'm so hot from the lack of estrogen I don't know if I can make it much longer going just by myself without a brace trying to walk on my own or stand up as the pain is so bad. You can just sitting the pain is so bad. I'd be okay with wearing your brace if I could just get these darn hot flashes to go away but the HRT isn't working yet.

[Mavary in reply to Hidden]

I think it can take a while for HRT to work. I would give it another month and if they aren’t gone by then I would have another word with your Dr.

[Hidden in reply to Mavary]

I hope you're right as I'm dying for this to work since everyone said this should be the thing that should work if anything but if it doesn't in a couple in another month then I'm really going to feel like what's the point of staying on it? Unless maybe they would decide to either increase my dose or switch me from a patch to a tablet as the gel and sprayer out as my insurance would not cover either one of those and I can't get another type of patch as my insurance only covers the generic of all the brand names which is only one manufacturer and I've heard that other people have had problems with not getting very much relief from this particular brand so I feel like I'm in a fix.

[Mavary in reply to Hidden]

Well I hope things get sorted out for you.

[Hidden in reply to Mavary]

Thank you. Me took

[Mavary in reply to fraid]

I think there’s less chance of you walking if you have L fractures.