Osteoporosis

[k_J53]

Osteoporosis for 14 years

Despite medication it has become more severe causing severe fractures

[Kaarina]

How are you getting on? I believe you fractured your pelvis a few months ago which must have been debilitating for you. I hope you are improving with that. I understand you are on Prolia at the moment and that you are you OK with the injections. I hope you are able to get out a little now from the exercise point of view and that you are on a good diet and perhaps taking some supplements to strengthen your bones. Look after yourself.

[k_J53 in reply to Kaarina]

Hi Kaarina

I had the screw inserted into my left pelvis 26/1/18 I’m not allowed any weight bearing on that leg until I see the Dr 15th of this month. I’m totally house bound using crutches and on 1 leg . It’s very difficult and painful. Pain in left fracture with screw appears to have improved but I still have the fracture on right hip . I’m unsure of my.next step. My diet is very healthy. I have been using CBD cream to rub on fractured area with some help . It’s very difficult as I have been 7 months like this so hopefully I’ll see an end to this thank you for asking

[Kaarina in reply to k_J53]

You poor love, you must be going round the twist, being totally housebound and getting around with crutches and on one leg too. I am very sorry. I so hope you have a positive appointment on the 15th March. How do you pass the time? Do you like to knit or crochet? Do let us know how you get on. Gentle hugs to you.

[k_J53 in reply to Kaarina]

Thank you I’m slowly going insane , but I keep positive by laughing as much as I can with a very supportive husband . I use to read but lost concentration , I do daily mediation that is keeping me sane . I will let u know how I get on Thursday

Thank you 🙏🏼

[Kaarina in reply to k_J53]

Makes a difference if one can laugh and having a very supportive husband is definitely a huge, huge bonus. Please do keep in touch and let us know how it goes on Thursday. I bet that day cannot arrive quickly enough for you.

[k_J53 in reply to Kaarina]

Hi Kaarina I saw my Consultant, he is very happy with progress following surgery I can now walk on 2 feet with crutches for 3-4 months with gradually getting rid of them. Baby steps he said. And hopefully in 6 months be back to normal life .he will decide what to do if the other fracture is still a problem in 6 months. He said continue taking supplements. Don’t do any form of exercise for 6 months . I will see him again in 4 months thank you all for advice. I feel more positive now but still another bit to go .

[Kaarina in reply to k_J53]

Thank you so much for giving us an update. Must be lovely for you to now be able to walk on both feet with the crutches. You have a goal. In three to four months you will hopefully be able to discard the crutches. A positive appointment. I am pleased you are being looked after by the consultant. I hope that when you see the consultant again in four months you can put the crutches away in a cupboard. Yep, baby steps. You are going in the right direction. Do keep in touch.

[k_J53 in reply to Kaarina]

Thank you now to do more . Research on this OP to see what’s new and what’s helpful and of course what to avoid . I have not been in a place where I could investigate this until now we also Iv discovered we have an OP charity group here too it’s veru badly funded by government so I’m not sure yet how much they do Iv just joined to become a member . We need so much more prevention and education on this . Thank you for your support

Kay

[Kaarina in reply to k_J53]

Hi Kay,

You know you can always phone the NOS helplines and I know those that do are greatly helped by them. In case you do not have the number it is FREEPHONE 0808 800 0035. Lines open 9 am - 5 pm, weekdays. They do have their busy times generally 10 - 12 and 2 - 4 so best to call out of those hours if possible or just keep trying the number.

I belong to my fairly local OP branch group, if that is what you mean and I really enjoy meeting up once a month. Not all the talks are OP related, just for a change. At our last meeting an NOS OP specialist nurse from the helpline came to see us. It is amazing the good work they do. At the moment there are five full time and four part time plus a nurse consultant in the team. I wish you well.

[annelii in reply to k_J53]

So sorry to hear this. Have you tried audio books? If it is pain coupled with anxiety that is stopping your concentration, sometimes lying back and listening can help. Very good luck with your next appointment, and I agree with veriterc below about physio resources - very underfunded.

[k_J53 in reply to annelii]

Thank you it’s just 7 months of been housebound and totally dependent on people to do everything for me .i have read many books in the beginning but just lost interest , audio is a very good idea . I do listen to the radio. I also get tired watching TV .My friends and family are very kind and visit me . Thank you for your suggestions I’m a person that was so active driving, traveling back and forth to my grand children in London, caring for my 90 year old mother, organizing events etc to been totally or almost bed ridden and unable to go out unless it’s in a wheelchair. But now I’m feeling positive that I will get back to normal soon

Thank you 🙏🏼

[k_J53 in reply to Kaarina]

Thank you so much I will do that

Kay

[veriterc]

Isn't it about time we all got together and started to campaign for better care? In many countries you would have had regular weekly visits from a physio to help you keep mobile, whilst you are not able to bear weight. In the states, Estee Lauder got the pink ribbon campaign going - and Breast Cancer care improved dramatically. Now the Duchess of Cornwall is involved with NOS - so why can't she front an awareness campaign and get us activated for better care?

[k_J53 in reply to veriterc]

I agree it is such an necessity and a life saver for people trying to get back to normal living. It’s a service not offered here and to get any help there is a 5 months waiting list you also have to have a medical card to qualify for services.

[veriterc]

I agree - but the NHS doesn't seem to think preventative medicine is necessary. I worked abroad a lot where you have to take much more command of your health, and get ticked off if you don't. But it would be good if we could collar Jeremy Hunt and tell him to pull his finger out and become pro-active - but don't suppose there is a photo-opportunity in it for him!

[k_J53 in reply to veriterc]

Hi Veriterc

I live in Dublin Ireland and our service is not offering much in the way of prevention. I’m on the waiting list for Fall Prevention for nearly 7 months . To get an OT assessment is a 5 months waiting list and then I don’t qualify as it’s means tested iv been on to the services but I’m not entitled to anything inspte if the fact that my husband has a serious arthritis and has to care for me . It’s not very satisfactory.

[TommyJohn in reply to k_J53]

I'm in Dublin also, and was private for a few years until I ran out of money. I highly recommend St James Hosp MISA service Bone Health & Osteoporosis Tel: [phone]. The staff are unbelievably helpful and everything in there runs like clockwork (and I am not easily impressed)

Cheers

Tommy

[k_J53 in reply to TommyJohn]

Thank you for that information I didn’t know it existed

[k_J53 in reply to TommyJohn]

Tommy do I need a referral as I attend Tallaght Hosp just wondering. But thank you so much for that information

Kay

[Hidden in reply to veriterc]

Maybe we should all sit on him, that would make a good photo. I think The Duchess of Cornwall is involved because her mother had Osteoporosis.

[Fran57]

Here’s hoping you get good news on Thursday. Keep being brave- I too had a fractured pelvis and although it wasn’t great I think I was much more fortunate than you. I really feel for you. Take care.

Fran 😉