why does this condition effect some more then others?

[uk2]

Hi

I've had this since Jan 2007 although my dr once i got dx this year says i've had it 10 years going on by my health records and that because of my car crash in Nov 2006 it has lead me into a chronic state.

I've tried all things to get me better, acupuncture,osteopath,chriopractor,physio, and recently hydrothearpy that sent me into a week long flare and agony and bedridden.

I've been on all sort of medication for it, lyrica,clonazapam,diazapam,temazapam,sertraline,quinne tablets,pramapexole (parkinson medication that sent me into a 2 month bed ridden state and pschotic episode), and recently a pain patch that i change every 72 hrs which releashes every hour a small amount of fentanal(opiod) stronger then morphine and it has made abit of a difference as i'm out of bed now and mobile now but i've gone up on it and am on 75 now and by the 2nd day i am getting pain again, i also take codein on top of that.

At the moment i am the clonazapam4 mg, sertraline 50 mg, fentanal patches 75,lyrica 300mg a day and codein tablets every 4 hrs.

This just keeps me out of bed and able to move around and on the very rare occusion go out in my wheelchair or mobilty scooter, i have 3 cares a day and live off benefit since my husband left me 3 weeks ago and i have 3 children under 10 to look after, i cant drive,cook,wash myself or do house work.

I used to work 30 hrs a week cared for my kids and house ansd husband was involved in the church jogged five miles with my dogs on my day off and dispite my bouts of unexplained health problems and womans problems and depression i coped so why can i not get back to how i was, anything i try just sends me into a flare.

does anybody know why some people are so disabled by it and others not and if like my rheumalogist thinks that i have had it for ten years why if it is not a degenitive condition do so many people get worse? and do you my car crash has made this too worst to come back from is this my life at 33 now being cared for when i used to be a carer myself!!

i dont know what else to try and where to turn too?

any ideas?

Sam

[uk2]

Hi Kit,

I'm from the UK i have a carer come in 3 times a day 5 days a week and once a day at the weekend for an hour. But they are not allowed to care for my kids and although the children have a support worker who pops in once a week and talks and sometimes takes them out since it's been school holidays over here they too do not provide a service for them cooking wise so the carers do the best they can untill they go back to school where they will get school meals again, and then it's just a matter of sandwihes when they get in.

I have degenertive disk disease in C 2 L4/5 and S1 and fibro.

when i was going through all the tests back in Jan 2007 as thats when things got really bad and then in may 2007 i had to stop work i joined this group for a while meet cheri on here and a few others then things got so bad for me i was bed ridden for monthes so stopped coming on here, now i do i dont recgonise anyone only on the MS forum as thats what they thought i had a t first so i went on there but as they could not find any lessions in the mri they said i had a chronic case of fibro and the car crash has caused the disk to bulge when they were wearing anyway as i have been a carer since i was 17 inbetweeen my children, seems ironic now that i am being cared for.

Are you this bad? is it that once you get this bad you cant go up?  

It's not like i've tried to get better i've tried it all as i listed up in my first post but nothing seems to work!!

Thanks for talking and your support, it's nice to chat to people who know how i feel agian.

Sam xx

[kitonthemoon]

Hello, Sam.

My heart goes out to ya.  It is dificult to manage a severe chronic condition on top of caring for 3 yound kids.  Have you checked with your local medicare/medicaid group and applied for a nurse to care for you daily?   When I lived in the South a gnetleman neighbor who did just that, and a nurse went there 3 x a day to help him.  Check around, you may find help out there you don't know of.

I don't recall reading what you're dx of having...........in any event, a bad car crash can certainly wrosen your condition.  

All that medications that you're taking.........they might even create even more havoc in your body (fighting each other)..  Some may have profound side effects and interact with each other.   I hope you are keeping tract of it.

You've come to a terrific support group.  You may not get all your questions answered, but you will know the you're never going to be alone.

Lots hugs,
Kit



I know, with ME/CFS, or FMS.......it affects different people differently symptom wise as well as severity.