Anyone with constant back pain

[cmoc]

I am struggling to work out what is causing the pain now. I have been on Forteo for 2 and half months. Getting lumbar type pain across the back, but worse,

lot of pain on sacro iliac bone on left side (where I had trouble before Forteo) it sometimes extends to the hip. Trying to work out if this bone pain from the Forteo or a slight disc bulge I have got at L5/S1 although I was told from MRI that this wasnt pressing on anything.

Is anyone else still getting back pain after fractures (I have at least 3, two at lumbar) or this muscle type pain (which lasts the whole time) which is on and around the left bone at the side of the spine in the lumbar region. When I get up and walk it feels like its going into spasm which is forcing me to just sit.

[Fruitandnutcase]

I haven’t had any fractures thank goodness but I am getting some pain in the sacroiliac region.

Years ago I had an amazing physio who diagnosed a displaced pelvis and did a bit of very gentle manipulation to get things back that normal. She recommended Pilates which I have done ever since and massage which I stopped when my masseuse moved house and it’s only now about 25 years later that I am feeling twinges in that area again.

It might be worth finding a good physiotherapist who is experienced in dealing with both osteoporosis and lower back problems and see if they can help or even give you some gentle massage to help your muscles but I think you would need to be careful that whoever who you choose is experienced and very careful with you.

[cmoc in reply to Fruitandnutcase]

I am having the pain in the sacroiliac region on the bone on the left, the pain varies but sometimes extends to the hip, in the buttock and under the buttock on that side, it feels like its going to go into spasm if I continue to stand up or walk etc. Is this what you get?

I keep getting physios who try to get me to do exercises, it was a physio, unfortunately, who set this last episode off, she gave me exercises of sitting and standing without using arms,

sliding arms up the wall etc. but something set off 9 months of pain which I cant get out of.

Now I am too worried to do anything but try and walk.

[Fruitandnutcase in reply to cmoc]

My pain comes and goes. I’m sure it’s a repetition of my pelvis being out of alignment. It’s not there all the time but when it is bad it feels like someone has whacked me across the sacrum with a big stick. The muscles down through my buttocks ache too. Sometimes when it happens I find it difficult to walk up stairs and can feel it when I walk even though I wouldn’t normally. Then it will pass without me doing anything and I’m back to normal. I’m sure it’s how I lie in bed or perhaps my pillow height.

I think you have the be careful about your physiotherapy. I remember reading on the Bonesmart website when my other half was about to have a hip replacement that people need to be careful as some physios will give you exercises that cause pain.

My Pilates teacher is a physiotherapist and she apis always saying we should do nothing that will cause any sort of pain. Effort may ‘hurt’ in the sense that it is hard work but it should never cause pain.

Think if I was in you place I would stick to gentle walking

[MollyStark]

Hello, I started Forsteo almost 3 weeks ago, reallychoping above everything it makes a difference.

My first fracture (T8) was in July last year and the pain never went, in fact, using my arms brings the pain on and it quickly get a worse. I have to support my arms with cushions when I sit. I can't use a computer keyboard for long and my husband does all the cooking and cleaning etc. I've had further spinal fractures since July this year and have even more pain throughout my spine and muscles so it's hard to know if I'm continuing to fracture or not. I've just started getting a pain in my left hip and wondered if it was the treatment. I'd put up with it if I knew it was doing my bones some benefit.

I hope you have some relief from pain soon.

[cmoc in reply to MollyStark]

Hi, I have one fracture that I know about T12 and that one took about a year to settle but it was never really painful (I didnt know about it until a scan showed it up), it was like a muscle pain that got worse and worse the more I moved and did things, then I HAD to rest as it got unbearable but then it went off after an hour (I guess that was the muscle around the fracture settling down) a year on, it doesnt bother me too much so hopefully yours might go soon, although I know we are all different depending on what else is going on. My two lumbar fractures have caused the most pain and trouble, and maybe, the disc bulge, I dont know. Do you know where your other fractures are?

[cmoc in reply to cmoc]

To Molly, what treatment are you on?

[MollyStark in reply to cmoc]

That's interesting to hear about your T12 fracture not being too painful. My recent confirmed fractures (and the reason for starting a new treatment) are T9 and T11. The T9 fracture was by far the worst pain, excruciating and took my breath away at times, but I definitely had less pain with the lower fracture. However, some years ago (before osteoporosis was diagnosed) I hurt my lower back lifting a 25kg bag of coal. The pain was awful for weeks, with horrible spasms. A couple of years later, I fell down stone stairs and impacted on my left buttock and shoulder. I had such pain for months (I found out a few years after that, I'd scarred my left kidney with the impact!) But I never had an x-ray to check for broken bones.

The recent spinal fractures were sustained by doing no more than moving in bed so things are pretty serious now.

I'm on teraparatide (Forsteo) for the full 24 months.

[walk21]

I have exactly the pain you describe and fear it may never go. It is 9 months since my fracture. I take mild painkillers and walk with poles, which helps. It is a horrible illness

[cmoc]

Yes it is a horrible illness, its frightening as in the end, you get scared to move or do anything.

I have had so many relapses of pain that lasts for months, from doing the most simple of things, bending slightly to get into a low drawer, walking on uneven ground, walking too much etc.

The pain that you have is that the same as the bone, hip and buttock area trouble that I get?

The other place it moves to is at the bottom of the coccyx, feels like sitting on a golf ball,

I had trouble in this are, before I started fracturing.

Where is your fracture?

[walk21 in reply to cmoc]

I have had several fractures, over 20 years. Nine months ago I had one lower thoracic, and one lumbar. It is that which doesn't seem to heal and I still have pain in my buttock on one side only. I declined to go for an Xray as we were already worried about Covid, I was in too much pain to want to travel and an Xray doesn't help anyway. I do hope it will improve but have doubts. I take strontium ranelate but had a long gap when it wasn't available, and I think that caused those recent breaks

[cmoc]

Yes, I remember that pain that shoots through, when stepping off a curb unexpectedly or reaching for the bannister and missing (miserable) we have to be sooo careful all the time.

[Sunseaandsand]

Hi,

I was on Forsteo for 2 years but did not have pain like you describe.

I did have bone pain which was mainly in my shin bones.

I also had terrible nausea that lasted the whoe of the 2 years. Knowing my bone density was very low and already having 2 spinal fractures I did stick it out to the end though.

It can be difficult to know the cause of pain when there is more than one thing going on at the same time.

When did your fractures occur and will they have now healed.

I doubt your pain has been brought on by the Forsteo especially as you say, you were having the pain before starting the course of Forsteo.

It does sound more like nerve pain, and in my personel experience things do not always get reported on correctly with scans and x rays.

I now have 8 fractures in my spine ( I usually refer to it as having 7) because the first was spotted years ago when I was first diagnosed with Osteoporosis, the pain from that fracture had been passed of as a bulging disc at the time.

In answer to your question is anyone still getting pain after having fractures my answer is a big YES.

The more fractures I have had the more pain I am left with once they are healed.

Have you been offered anything in the way of medication to help manage the pain?

You have also said that you have at least 3 fractures, do you know where they all are, and is it possible you have had another?

Something I would point out about the Forsteo is that when you finish the 2 year course make sure that you go straight on a different type of treatment.

I was so sick when I was on it that once it ended I requested a drug holiday, they advised against this but I felt I really needed the break as the rest of my health had suffered by being so sick.

I had the drug holiday and it was a huge mistake.

Not only did I lose what I had gained from the treatment I lost more as well.

In total my bone density went down by 14%.

I do believe the way the bone treatments work best, is by having continued treatment.

When one treatment ends another should take its place immediately.

[Pop63]

Back spasms are a side effect of Forsteo. I’m also on teripatide injections. They make me feel a bit odd; low mood, fatigue and woolly headed and strange. Does anyone else have this?

[angie26]

Hi yes I have chronic back pain due to a fracture low back, I cannot stand for long and walking is very painful. I have had injections and nerve ablation, pain clinic for me was next to useless, they have no idea what I’m going through and don’t even try to understand, I’m on ambulatory oxygen too and they suggested I walk through water!! I’m also not good with pain killers and have so many reactions!