New on forum

[fraid]

Just replied to 2 posts of 2 yrs old,learning how this works! I have at least 6 fractured vertebrae from Osteoporosis,am on Fentanyl 25 mg patches,though hope to go down to 12.5 soonbjt pain getting worse again.I have turned down Prolia due to side effects,I also have M.E, & now Kyphosis.Can anything be done about the latter or am I stuck in this shape now?Advice please.

Thanks.☹️

[walk21]

So

[walk21 in reply to walk21]

So sad for you having to cope with all that. You could ask the Royal Osteoporosis Society for advice about medication. I am no expert but a lot of us have to live with bent backs. Once the breaks have settled and healed the pain is not so bad and we can stand a bit better

[fraid in reply to walk21]

Thanks for that.Do you need pain meds all the time or not with OP?

[walk21 in reply to fraid]

No. I took them for about 6 months after the breaks but now only the occasional paracetamol. I would say I have discomfort rather than pain

[Sunseaandsand]

Hi Fraid,Nothing can be done about the changes in shape.

My spine has worsened with each fracture I have had.

I was referred to pain managment clinic and it was they who prescribed pain relief.

When I fracture it takes 3 months for them to fully heal.

I am also left with more chronic pain with each new fracture.

The Kyphosis does add to the pain and I now that where I could once lay on my back the kyphosis makes this difgicult too.

You say that you turned Prolia down but not that you were offered any alternative.

Have you tried the other treatments? because they do not cause problems for everyone.

[fraid in reply to Sunseaandsand]

Thanks all for your replies.

[fraid]

M.E is Myalgic Encephalopathy,aka Chronic Fatigue syndrome- it’s much like Long Covid!I’ve had it for 28 years,when it was called Yuppie flu.Only recently have some GPs accepted it as a neurological disease as listed by WHO,even the government now,& DWP have had to accept it is not depression or all in the mind!It’s like having painful flu all the time,exhaustion,gut problems & myriad other things all at the same time.It ‘s like my body hates me & now I have OP fractures- I’m just not lucky!!🥴

[Jennymary in reply to fraid]

That's you and me both, I've lived with CFS since 1994, osteoporosis in spine diagnosed 2 yrs ago, just recovering from first compression fracture and awaiting clinic appt

[fraid in reply to Jennymary]

Doesn't seem fair does it?Are you on Action for M.E forum,I find it invaluable for chatting,cheering me up & support,advice.Do join.🤗

[Jennymary in reply to fraid]

No it's not fair, especially if, like me, you were born with glaucoma, had successful cataract surgery December 2015, due to problems that the hospital didn't resolve I now have no vision in that eye and was registered blind in October 2017, all this left me with high blood pressure, I've also got lymphodema ☹️

I haven't joined the Action for M. E forum but maybe I will now

[fraid in reply to Jennymary]

Hi Jenny, yes I think you’d like it,we talk about allsorts not just our illnesses but daily life ,do games etc,it bucks you up.Sorry you have all that to put up with,sounds a lot! 😬

[Pte82 in reply to fraid]

fraid, it is my hope that this information will offer you some relief. Thiamine and magnesium may help with your Chronic Fatigue syndrome. Thiamine needs magnesium to become bioactive and together are needed to create ATP. Search on "stuttering anti thiamine factors" for a comprehensive list that impacts thiamine. Likewise, krispin magnesium has a list of causes for loss of magnesium. A deficiency of bioactive thiamine has effects on brain function in addition to being linked to anxiety, depression and cognitive issues and IBS in the gut. Boron and Delta Tocotrienol are good bone builders especially for the spine. Search on "Jorge Flechas, MD - Boron and Oral Health" for his youtube video for a comprehensive review of boron's amazing attributes. Delta Tocotrienol is also a bone builder and anti-inflammatory. Always consult your health care provider before using any supplement.

[fraid in reply to Pte82]

Thanks Pte,but have been down every route & spent a fortune on every suggestion,inc.quackery & a lot of it is or we’d all be cured by now!to no avail.Magnesium did nothing,Boron proved to be ineffective.Only thing that helps is Vit B12, helped my sis M.S & MSM for general stiffness & anti inflammatory.Not wasting any more time or money on experimenting,just accept & adapt,work round it.Thanks for the thought tho.X

[mollysuki]

I too have been left with Kyphosis after several spinal fractures. I find yoga helps with my posture which makes Kyphosis less noticeable. My yoga teacher, she’s a nurse, has CFS and ME. She’s also done a degree in back care so gives modifications to the movements. I find remembering to adjust my posture all day exhausting but worth it. My family have noticed the difference in my posture. Hope that helps.

[fraid]

Thanks for that,where did you find such a person?I’ve been thinking of getting private physio,would have to come to my home though.Is it painful?