Fiona Mary

[Deb189_ra-678candy]

Hello I haven’t posted on here before as I am trying to see if I have registered properly.

I have osteoporosis in a lot of pain.

I have shrunk in height and become stooped as I had back fractures, the dexa scan was unclear.

Currently waiting for dental treatment before the infusion.

[Maker-of-soup]

Hello Fiona Mary, sorry to hear that you have pain. Hope your GP can help with that.I can recommend the nurses at ROS who are very knowledgeable and supportive.

I had a molar removed and am waiting for that to heal fully before starting Romosozumab.

Hopefully there is a local osteoporosis group in your area. I have been to a couple of meetings and it is good to meet others on this journey. Keep on keeping on.

[Deb189_ra-678candy in reply to Maker-of-soup]

Thank you for your reply.

I do hope Romosozumab works. Is it for the pain?

There is not a group in this area so appreciate this online group.

Hope to hear how you are getting on.

It takes about 6 weeks for a tooth cavity to heal

Regards Fiona

[Maker-of-soup in reply to Deb189_ra-678candy]

Romo is to strengthen the bone.

[Deb189_ra-678candy in reply to Maker-of-soup]

I hope it helps and no side effects

[Rooruby]

Hi welcome sadly osteoporosis is a horrible disease. I have found this site as well as the ROS nurses a life saver. Waiting to see consultant etc is so l9ng winded after I had a fracture in 2023 I saw someone who just wanted to stick me on more meds didn't really explain about fractures etc but here and nurses have answered so many questions.Good luck in your journey

[Deb189_ra-678candy in reply to Rooruby]

Hi RoorRuby

Do hope those fractures heal up they are in my back. Need to be careful the medications are right for you.

A year ago I was hospitalised with a skin infection, bullous Pemphigoid and on steroids for that. It is very itchy but I wondered if anyone else on here has skin problems.

I find it hard coping with the two conditions.

I know steroids don’t help bones , but it is a lower dose.

Thanks for your reply

Best Fiona

[CinnamonRose]

Hello Fiona Mary, I'm sorry that you're in pain, I know how you feel, I don't want to depress you but I've had pain through fractures now for 5 years. You need to talk to your Dr, there's plenty of different painkillers you can try, I hated the way tramadol made me feel and morphine patches did nothing but Oxycodone suits me which is a form of morphine, the Pain Clinic also put me on Duloxetine, they had tried me on Gabapentin and Pregagamol- sorry spelling isn't my forte!!! Those didn't really help, or they did short term, I get shooting pains down my legs which is nerve damage. But thankfully the Duloxetine was a game changer and usually I get better nights, although not so good recently

So there's lots of choice that they can let you try, but you do have to tell them you're in pain, unless you contact them regularly about it, they'll think that your problem has resolved itself. Ask to be referred to the PainClinic as well, they can suggest different things for you as well as put you forward to physio.

It is hard to accept especially if you've been a busy person, I've gone from being on the go from 6 in the morning to 11 at night to a sofa slug. I hate getting up in the mornings as I know the minute I move it'll all come rushing in, so I rarely get up before 10 these days, I do a little, lie down, do a bit more on repeat all day every day.

Whenever I try and ignore the pain and do things I want to do it doesn't work and seems to put me back again.

Sorry this seems to be all about me and it's all a bit negative but I suppose I'm telling you so that you know that you're not alone in your struggles

Take care, sending a gentle hug

Xx

[Deb189_ra-678candy in reply to CinnamonRose]

Dear Cinnamon Rose,

You are suffering a lot . Gp told me to take the liquid morphine when it got bad.

Try lying flat .

I have a burden on me to pray for you if that’s ok?

As then things can improve.

I know people prayed for me it helped as I was sinking mentally also.

In time I am confident I’ll hear that you are improving.

Fiona xx

[emersee in reply to CinnamonRose]

Hello CinnamonRose,

Baclofen really helped me when I had those shooting pains. I began at 5 mg three times a day and am on 10 mg three times a day. It stopped them in their tracks and that was 3 years ago. It was a real help, and I have been on everything else you are on.

[CinnamonRose in reply to emersee]

I've not heard of that, I'm seeing the Dr (again😏) so I'll ask and see. Thank you, sometimes you feel so desperate you'd do anything to get a good night's sleep. It's annoying as when I first went on Duloxetine I slept for Britain for the first few weeks, bliss, but I suppose the body gets used to it so that effect wore off, great pity!!

[CinnamonRose]

That's sweet of you Deb, we certainly can't dismiss the power of prayer, I often think that if I didn't have faith I'd have gone mad by now!! And I'm not saying that lightly. Yes I lie fairly flat, with a couple of pillows under my thighs, I can't lie totally flat, often first time I lie down to begin with I'm rigid and have to force myself to relax, which helps going from my feet and working all the way up.

I really appreciate your kindness

Kind regards xxxx