Kyphoscoliosis: Hello. I am new on here... - Bone Health and O...

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Kyphoscoliosis

5 years ago•6 Replies

Hello. I am new on here and this is my first post. I have been diagnosed with osteoporosis in my spine Now on a yearly infusion of Zoldronic acid Also I have had recent xrays of the spine and I have got kyphoscoliosis. I lost 3 inches in height and they thought I had compression fractures thankfully not. The kypho I new about from tests I had a few years ago and get bad migraines but in the last few months have been having terrific back pain hence the xrays. I am waiting to hear from osteoporosis nurse. I am trying to get my head around all this struggling to know how to cope and was wondering if anyone on here has the same problem. I also suffer from Chronic Fibromyalgia.

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prince19

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6 Replies

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G1nny5 years ago

I’m really sorry about all this; I hope docs can help please keep us informed.

Cally555 years ago

I sympathise I have kyphosis and lodosis and four compression fractures, only two of which give me pain. That is enough however! I had/have GCA PMR and the corticosteroids are assumed to have given me osteoporosis, can't be sure wasn't given a dexa scan until after the first two fractures. I have lost 4 inches in height. I have had a difficult time getting to terms with all this as it has completely changed my life. I found rheumatologists no help whatsoever and all GP could offer was codeine, and after nagging tramadol. The fracture nurse was nice but not a lot of help with the pain. One of the GPs referred me to the pain management clinic, which has a long wait, which is wonderful, a charming doctor who wasn't watching the clock prescribed 300mg pregabalin, slow release tramadol and a lidocaine patch. While these don't get rid of the pain completely they help. I also went to a pain management seminar which helped to focus my mind. She also spotted that I was mildly depressed, hence the pregabalin, and kindly pointed out that it wasn't surprising given the way all this had affected my life. The pain management doctor is an anaesthetist and definitely understood pain!

See if you can get a referral to the a pain management clinic, I found it well worth while.

Sunseaandsand5 years ago

Hi, Pain is the hardest thing, it stops us being able to live our lives as we would like to.

I speak from experience.

It's good to hear you are on Zoldronic Acid and not having any problems with it.

I find that the Osteoporosis clinic only want to deal with the treatment for the bones and there it ends.

I think it would be a good way forward to go to your GP and first get on something for the pain, ask to be referred to Orthorpedics they will more than likely do a scan of your spine to be able to tell you exactly what's going on.

I have multiple fractures and also many other issues in the back which were diagnosed in this way.

Unfortunately with the NHSyou have to push but in the end it does pay off.

Don't sit waiting for calls from nurses that either do not come or when they do they do not offer any help.

Read my posts it's not an easy road but fortunately you are fracture free.

Good luck and let us know how you progress.

Charlie505 years ago

Good luck with your treatment & I hope that it will help your situation. AS others have said please keep in touch with the NHS professionals, don't let referrals slip through the net, it is hard to have to keep chasing I find it so frustrating & I don't have Chronic Fibromyalgia. I do have OP of the spine but unfortunately due to awful reaction I am unable to have any infusions or treatment.... Yes lots to get your head around, I find talking to people & to set myself small goals & to keep notes of what professionals have said helps me to deal with my situation, also looking at what I can change to make things easier & not always take first suggestion of treatment but to ask questions & get the whole picture... This site will certainly help....

HeronNS5 years ago

My physiotherapist gives me various treatments to keep my back in line and for many years I've done exercises which I hope have been staving off the inevitable. A really good physiotherapist may be able to help you. What is needed of course is strong muscles to support the spine. If you can manage it, once you feel better, perhaps you could consider using walking poles for a few minutes about three times a week?

prince195 years ago

Thank you all of you for your replies. I have to admit I am struggling at the moment. I already take slow release tramadol for the fibro which helps. But I will get a GP appointment as soon as I can to find out more about physio etc. Will let you know.

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