Hello, I am new to this Support Group and was diagnosed with Severe Osteoporosis (Spine -3.5, Femoral -2.7, Hip -2.1) 3 years ago. Every time my back starts aching, I freak out that I’ve fractured my spine. How do people deal with that stress? How do you tell if an ache in your back is a fracture, a muscle pull or something that needs to X-rayed and checked out?
How to Stop Stressing Out: Hello, I am... - Osteoporosis Support
How to Stop Stressing Out
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Have you had any fractures? A diagnosis of "severe" osteoporosis to my mind should only be made when fragility fractures provide evidence of poor bone strength. There's a big difference between your total hip and your spine score, which may mean an error has been made. You should have a FRAX, fracture risk score, which gives a better idea of bone health than t-scores alone. Bone density isn't the same as bone strength, which is why so many people fracture with osteopenia, while others with very poor t-scores never fracture. Having said all that, I can understand your concern about back-pain, having often had the same concerns myself. I've suffered from various back problems for many years, so logically any pain I get is far more likely to be related to these than to be due to a fracture, but it's very difficult not to worry, isn't it? I take the approach that if it's a fracture it will be unbearably painful. I was diagnosed 9 years ago and so far no fractures, so that in itself has given me more confidence. I've also had some REMS scans (much more reliable than DEXA), which give a fragility score too, a much better indication of bone strength, and my spine fragility score is very good.
No, I have not had any fractures that I am aware of. My Rheumatologist is the one who told me that based on my DEXA scores I had Severe Osteoporosis. Of course he is also the one pushing me to start an osteoporosis medication. I also wondered why my hip and spine ratings were so different and I suspected that my DEXA scan may have incorrect scores but no way to confirm that. I would love to get a REMS SCAN to see what those scores are but I cannot find anywhere near me in the U.S. that does this type of scan. I have a DEXA scan scheduled for 10/19. I am anxious to see if the scores change much in the last 14 months. I input my data into a online FRAX calculator myself using the T-Score of -2.7 for my Femoral Neck like it said to do and it showed I have a BMD of 19.8 with a 9.5% chance of a major osteoporotic fracture in the next 10 years and a 2.3% chance of a Hip Fracture in the next tens years. Those odds don’t sound too bad. I am glad you have not had any fractures in the 9 years after you were diagnosed with osteoporosis. Are your DEXA scores as bad as mine? Is your FRAX results better or worse than mine? I know I should not worry so much but it is terrifying to think that I worked for 38 years and am so close to retirement and I could have a major fracture that puts me in a wheelchair for the rest of my life or causes me contestant pain the rest of my life. That is not how I pictured my “Golden Years”. Thank you for your reply.
Here in the UK whether or not to offer meds is meant to be based on FRAX score, not t-scores. I thought it was the same in the US, but could be mistaken. I'd have thought that with a 10 year fracture risk of 9.5% you wouldn't need meds (after all, that's a 90.5% likelihood that you won't fracture, or put another way, more than 90 in 100 people with the same level of risk wouldn't fracture in the next 10 years.
I've had a couple of DEXA scans. The last one was in 2018 and gave a spine score of -3.6 and hip -2.5. 15 months later I had a REMS scan and my spine and hip scores were the same at -2.6, far more believable as they should be similar. Recently I've managed to get hold of the DEXA scan images and detailed report, which have shown a number of errors with the spine, plus they even got my weight wrong the second time! I took bisphosphonates for a year after diagnosis, after my GP used scare tactics ("if you don't, you could end up in a wheelchair or worse"), but stopped because of side effects and have taken nothing on prescription since. My last REMS scan showed my hip fragility score had worsened, so I need to get exercising more seriously! My hip t-score had hardly changed and my spine t-score and fragility score had improved, almost certainly because I'd been taking a half-dose of strontium citrate, which does more for the spine than the hips!
It's a shame you can't get a REMS scan. Something else you could look into instead would be a DEXA scan with trabecular bone score (TBS), which gives a better idea of bone strength, probably similar to the REMS fragility score (though different science/technology). However, you need to be aware that if you have a DEXA scan on a different machine, the results can't be compared with previous scans. That in itself makes me doubt the accuracy of DEXA - if two different machines give different results, how can you possibly know whether either is correct?!
Things are definitely different in the U.S. or at least for me. My doctors have been pushing me to start taking an osteoporosis drug for the last 6 years from when I was first diagnosed with only Osteopenia. I will look into seeing if I can get a DEXA scan with a Trabecular Bone Score (TBS). I’ve never heard of that type of scan but I’m very interested if it provides a better assessment of bone strength. Thank you for the suggestion. I will be sure to use the same DEXA machine if I can get my doctor to authorize this type of scan. My feeling is that technical equipment should be calibrated properly to give accurate readings no matter what machine you have a scan done on but that is sadly not reality.
It also depends on the operator of the machine and his training and how you are placed on the machine as much as I understand. Therefore it is not only the machine what is important and what could give you different results.
Seems like with all the variables, it is almost impossible to get an accurate reading from a DEXA machine. Thanks for the information.
You are so right. Last time I had a DEXA the operator misread my height 🙄 even though I questioned it and measured again she didn't read the scale properly. Plus it was a new machine. So to my mind it was a total waste of time. I'm having a REMS scan next month so hopefully will be a much more accurate result 🤞
DEXA scanners need additional software to give a TBS, so you'd have to have it in a different machine and quite likely have to travel. In the UK it seems to be only some of the university hospitals that have scanners with TBS software. It might be worth starting a new post to ask if anyone knows of one in your part of the country
I have the same scores at you and have had osteoporosis for 10 years. No fractures I am aware of and never broke a bone in my entire life. Like you, I get anxious over my scores and concerned whenever I get back pain. I began a program of weight training 2 x per week, yoga sessions 2 x per week, pilates 2 x per week. I walk/hike 6 days per week for 45 minutes. Since I started this, my back pain is minimal to non-existent and my balance/posture greatly improved. I focus more attention on balance, strength, good posture and keeping my home clear to avoid falls. I also eat a healthy Mediterranean diet and take a few supplements (no calcium for me). I can live with my scores and don't use T-scores but rather look more closely at Z scores since they reflect what folks my own age bone health is (accordingly to these scores that were devised under questionable corporate means). I don't get anxious as much anymore.
I hope after I retire and have less “work-related” stress that I can learn to not stress out as much over the fear of getting a fracture and just enjoy my “Golden Years”. Thanks for the reply.
Check out Dr.Doug Luas on YouTube.
Re your post that included your REM showing very good bone strength and you not fracturing- I could have written this myself. Every word is the same for me. Hugs.
Is there any medical or journal literature indicating higher reliability with REMS? I am aware of the consistency issues with DEXA. But I haven’t seen that REMS has been clearly shown to ameliorate that issue.
There have been some large-scale studies showing that REMS and DEXA give very similar results when both are done properly. There's also a lot of literature that highlights the potential for errors in DEXA. Obviously errors are also possible with REMS, but one of its strengths, compared to DEXA, is that it is much more fully automated. The automation doesn't allow a reading to be taken if the machine isn't lined up properly, whereas such misalignment is one of the known issues with DEXA.
One of the things that really concerns me about DEXA scans, apart from the number of errors that can occur, is that scans from different DEXA machines can't be compared. If that's the case, how can you possibly know whether or not a specific DEXA machine is giving reliable results? REMS results from different machines are comparable.
Proponents of REMS scans point out that osteoporosis is systemic, therefore you wouldn't normally expect more than 1 standard deviation difference between t-scores at different sites. I haven't found any literature to support this (although it's logical), but have found that adjacent vertebrae shouldn't be more than 1 standard deviation apart (see the International Society for Clinical Densitometry, iscd.org/learn/official-pos...
"Anatomically abnormal vertebrae may be excluded from analysis if:
- They are clearly abnormal and non-assessable within the resolution of the system; or
- There is more than a 1.0 T-score difference between the vertebra in question and adjacent vertebrae."
My own DEXA scans (I've had two) were suspect because of the large difference in t-scores between my hip and spine. When I had my first REMS scan, the scores were very similar, which seemed far more likely to be correct. The hip score was almost identical to DEXA, the REMS spine score the same as the REMS hip score. As I've written above, I recently got hold of my detailed DEXA reports and have identified errors in the spine results, not least that there was more than 1 standard deviation difference between adjacent vertebrae (L2 and L3), which should have sounded alarm bells.
This study, for example, demonstrates that L2 and L3 should be very similar and L4 denser: ncbi.nlm.nih.gov/pmc/articl.... My L3 was much less dense than L2, while L4 was even less dense than that, the complete reversal of what they should be. This would have rendered the spine scans totally unreliable, yet nobody picked this up on either occasion! REMS showed progressively increasing bone density from L1 to L4, as it should be. That in itself is enough proof for me!
Excellent. Thank you! This gives me more homework to do. My understanding was that although osteoporosis may be systemic, the development of bone in younger years may not be. So that the differential sustains through the later systemic deterioration. But I certainly wouldn’t expect that to extend to adjacent lumbar sites. Again, lots to dig into. It is frustrating how scattered info is for this disease.
Where did you get your REM scan? I just tried to get one in Sandford NC.We had an emergency trip to see our very dear friend who is dying of mad cow disease. I called and explained my situation and asked if there was any possible way to get a scan and was told that they were booked until after the first of the year.
Sorry, I'm in the UK, so can't help you with that one.
There are two locations in NC. One is at an ortho office the other a chiropractor (black mountain). The later is StrengthX.
Sorry about your friend
Thanks it was heartwrenching to see how quickly he has deteriorated. Horrible disease. I tried to get an appointment at Sanford, Nc, but they said they couldn't fit me. In until January.
Did you try StrengthX? The office is in black mountain.
Where is black mountain? The other place in NC is Ashville NC. It was another 21/2 hrs from where we were. Thanks
StrengthX moved from ashville to Black Mountain a few months ago. It’s about 20-30 min east (I think) of Ashville. (I know about StrengthX because I almost flew from Michigan to there for a REMS. Dr Mike is really helpful. When a clinic popped up in Windsor, I went there (closer and no airfare needed).
I have very similar scores to you. I don’t think the discord between lumbar and hip or femoral neck T-Score indicates an error in the DEXA scan. In fact, simple algorithms have been devised to adjust FRAX assessments for this exact situation:
pubmed.ncbi.nlm.nih.gov/209...
Also, I don’t know that FRAX or FRAXplus add value in clinical assessments when the T-Score broaches the severe osteoporosis threshold (which may be arbitrary, but I have seen -3 or -3.5). I am still searching for clear information in the literature along these lines. So I would be careful drawing any conclusions unless you can find a clear statement that FRAX has meaning and is clinically useful at that range. The same can be said of TBS. If any site has a severe osteoporosis T-Score, that seems sufficient to suggest very high clinical fracture risk. And thus treatment with an anabolic drug.
Read about the side of of the drugs and follow Dr.Doug Luas on you tube.
When I was first diagnosed I felt very stressed. I was diagnosed with osteoporosis in January 2020. I was prescribed bisphosphonates which I took for four months where I felt progressively more and more ill.
By the time I spoke with the osteoporosis nurse I felt like a really fragile elderly lady, I was frightened of everything and could barely walk without my husband to hold on to. It was at the time of the covid outbreak and after ‘the talk’ I felt as if death was all I had to look forward to. I would say I was traumatised.
I was absolutely shattered and the terrifying ‘gloom and doom’ talk from my osteoporosis nurse did absolutely nothing for me. I wear multifocal glasses and the guy even labelled me as ‘visually impaired’ for heavens sake - if he had asked I could have told him that my distance vision is of a good enough standard to drive without them, I mainly need them to read.
Eventually I stopped the alendronic acid. My husband had said something along the lines that I was still the same person as I had been before I had my DEXA and I wasn’t scared and feeble then and my body was still the same body as it was before the diagnosis.
I get backache but I always did - it’s caused because my lumbar spine is a mess - not because of osteoporosis. So basically I’ve stopped worrying about ‘what if’. I also figured I would be really cross if I suffered with the horrible side effects of bisphosphonates I was taking and then died from something completely different.
I keep moving - I do Pilates 3x a week and walk for about an hour every day. I’ve got Nordic poles that I use if I’m on very rough or muddy ground but again I had them before my diagnosis. I am extra careful about possible slippery surfaces, I’ve hopefully made my house trip proof, I eat a bone friendly diet and take the usual bone friendly vitamins and minerals. I do the very best I can for my body.
I think that if I have a spinal or any other fracture it will be painful enough for me to know I’ve fractured. In 2021 I flew through the air backwards and landed on my tailbone on ground that was like concrete - that was agony, eventually as I was getting nowhere with my doctor I paid for two private MRI scans - the first showed the mess my lumbar spine is in but that goes way back and the second scan showed I had fractured my sacrum when I landed on it but all I could do was take painkillers and a mixture of rest and gentle exercise. It didn’t cause cauda equina so doctors weren’t really interested and I think the fact I won’t play ball and take their drugs makes them even less interested.
So just decide you are still the same person you always were before diagnosis - worry and stress are bad for your bones and anyway worrying isn’t going to make your bones any stronger.
Thank you so much for your prospective. What your husband alluded to makes perfect sense. My husband has not come out and said anything similar yet, he is mostly worried like me that this will affect my qualify of life early in our Retirement, which starts in 5-6 months. He doesn’t want me to be in pain and unable to enjoy doing things with him. The Retirement Community we are moving too is very active which is one of the things that drew us to it. We both want to stay active in our retirement. Did your sacrum fracture heal well? How long did it take? My husband is so concerned with making our new retirement home that is being built safe for me that he is insisting that we purchase only furniture we will actually use, not a lot of furniture just for decoration, so that there are less objects for me to “run into”. When we were in the design center and had to decide on the flooring that will go in our house, we both had originally agreed to get tile flooring in the entire house but he insisted we get vinyl planking instead because it will be softer if I happen to slip and fall on it than tile would be. I’m also going to purchase non-slip slippers or socks as right now I just wear regular socks around the house and that is not safe for me. We opted to have a safety railing installed in our shower and it has a seated bench in it as well so I won’t have to stand to shave my legs. All the countertops in our bathrooms will be higher so I won't have to bend as much to brush my teeth, etc. Our house is all one level - thank god no more stairs and all the entrances are flush to the ground meaning a wheelchair can go right through them without a ridge to have to go over. Right now, I don’t need any of those things but I don’t know what the future holds for me with my osteoporosis and we I want our retirement home to have those things in case one of needs it later in life. I will try my best to stop worrying about fracturing a bone because I know that does no good. Thank h you for the advice.
You are very wise to future proof your new home. It’s the perfect opportunity to do that and how lovely to be able to furnish it with only what you actually need. We have lived in our present house since 1984 and I spend all my time trying to persuade my reluctant husband to de-junk so that when we are no longer here our poor sons don’t have to deal with our mess when we’ve gone.
I bought a pair of Sketchers shoes that I only wear in the house so that I am always wearing good quality shoes and I wear very supportive ECCO GoreTex lace ups when I’m outside the house although I do wear grippy socks when I do Pilates.
My sacrum took a while to heal, I can’t remember exactly how long it took, it was one of those things that happened gradually and I realised I could do things that I hadn’t been able to do for a while but months - at least six rather than weeks, I’ was 73 when I did it.
At one point I felt so awful I honestly thought I would end up with a mobility scooter but I kept plodding away gently with my daily walk and gradually my walks got longer and I could walk further without having to find a bench on which to rest, I average about 8000 steps a day nowadays but can do more if I do it in stages so I’m pretty much back to how I was before.
I also kept doing Pilates - I’m in a very small group with a wonderful teacher who is a physical therapist and who is experienced in dealing with osteoporosis patients although she always says not to do anything that hurts - even if it is something she has told us to do and even if it’s something we have done before. I think the more active you can keep the better it is for you. I think it is important not to be so frightened of something happening to you that you don’t move enough.
So, I get a lot of exercise but on the other hand I think my horse riding days are over and I haven’t been on my bicycle since I broke my wrist and discovered I had osteoporosis back in 2020 - I used to fall off my bike fairly regularly so I’m passing on cycling, my exercise is sensible exercise and I absolutely refuse to go out when there is snow or ice on the ground.
I fractured my sacrum when I was getting up off the ground in the garden, I had been photographing plants at ground level and gave an almighty push with my leg to get up, I pushed so hard that I flew backwards across the garden and landed on my tail so now if I am down on my knees or sitting on the ground I know I need to make sure I lean on something solid or get my husband to help me up. I also hold on to the kitchen counter when I’m holding anything heavy or getting up from looking in low cupboards so I’m much more careful in that respect.
It might be worth looking at Margaret Martin’s MelioGuide site for advice on safety and balance etc, I alway think she is very ‘sound’. melioguide.com
Your retirement community sounds amazing - so a happy and healthy retirement to both you and your husband 😊
I thought your numbers looked familiar - in 2020 mine were spine - 3, femoral neck - 2.7, hip -2.1 almost the same as yours.
I have been wearing sketchers for the last 10 years because they are so comfortable. Having a dedicated pair to wear in the house is a great idea. I will check out Margaret Martin’s MelioGuide site. Thank you.
Check out Dr.Doug Luas on YouTube. Alternative methods for osteoporosis and dangers of medication. Good info unfortunately very expensive. Also Kevin Ellis, bone coach has great information.
Sounds like you have a good plan. My husband and I are looking to go to 1 level.i also have Parkinson's so we need to carefully plan. Frustrated that all these Patio homes start around $465,000. We don't have that kind of money and would have to carry a mortgage. Our current house is paid off. Good luck to you!
I have similar DEXA scores as you. Began Prolia (thankfully no negative side effects for me) and regular bone scans after a fall which gave me a fracture in my lower back. Boy did I know something was wrong!! I couldn't sit without extreme pain, in fact I was in extreme pain no matter what I did. I got to the emergency department quickly, was put on pain meds, admitted to the hospital, continued meds, and had kyphoplasty. I certainly don't know if all fractures feel like mine, but I do know the pain is different from my normal backache pain. Hope this is helpful.
Thank you for your response. I’m glad to hear you have no negative side effects of taking Prolia. Did the Kyohoplasty greatly reduce your pain? Just curious as my research on this procedures says it is only usually recommended for severe pain due to a compression fracture that does not heal on its own in 4-8 weeks and the pain reduction is usually significant.
Where do you live? There are 5 REMS locations in the USA & more in Canada. I am in Michigan and drove to Windsor.
Where are the REM S located in USA? I was told only 2 both in NC.
2 in NC (Sanford & Black Mountain), Tampa, Texas, Maryland. The 2 in NC are not affiliated with each other. I drove to Windsor.
Where in Maryland? That is closer.
The info I received from ECHOLIGHT (company that developed REMS) stated Easton, MD “Rheumatology Associates of Delmarva”. You would need to call to confirm.
I have severe osteoporosis too (lumbar spine -4.6, hip/femoral head -3.3/-3.5) that was only diagnosed after repeated injuries to my back made my husband suspect they were at least partly due to OP.
I now know I've had several fractures, and this is what I've experienced:
1) You really might not know if you have had one.
2) If it's a vertebrae, it'll likely be deep, so when the doctor's pressing on your back to see where it hurts, you might not be able to isolate it.
3) It may give you a generalized backache. or it may not. When you'll feel it is when you move the "right" way, or when someone or something jostles you. In my case with the current one, I feel it when I lie on my back. With others, it was getting out of bed.
4) It may or may not affect your mobility.
5) There's a solid chance they won't find it on an x-ray, but I am finding that the physiatrist I've seen twice does better at asking for specific locations to be filmed. My upper back fractures were missed twice by urgent care.
6) Loss of height is probably your giveaway. Some height loss surely is discs flattening out, other things (poor posture?) but if you find you're shorter every time you get measured (which happened to me 4 times over the last 18 months, for 1 1/2 verified inches in that time frame, to top off the 1 1/2 inches I'd already lost ) you're probably fracturing.
7) I have no idea what my spine score would have been 4 years ago, but chances are they'd've been in the -3's? That was when I had my first "incident" that I now think could have been a fracture, but in that instance, I did put a great deal of stress on my lower back (at the gym, in s class.) The second was not for another two years, also happened at the gym, but much less stress. It seemed to become a cascade after that. All to say, if you can manage to not do stupid things, you might be fine.
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