Firbo amongst other chronic ilnesses

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Firbo amongst other chronic ilnesses

Postby tkent » Tue May 26, 2015 3:35 pm

Hello all,
I'm new to this group though I've been on a different forum for FM for a while. An introduction to me.......

It all started at 17, i'm now coming 23.
I was playing badminton at county and national level .... I was super health fit and generally a happy young person. I had an injury to my right knee, which discovered my oddly shaped knee cap, causing my knee to dislocate all the time, I had surgery to re shape and construct my knee, all went well Yay !!

This lead to another scan to check progress, this discovered osteoporosis, yuck !!!! I dealt with this moved on and went back to my badminton reaching county level again yay !!!

I noted pain and discomfort in my lower spine and left hip; I went for a scan on my hip and lower back as you do .. they discovered from my hip scan that I have what's call hypermobile joints I think that's what it is called anyway. They scored me 9 of 9 on this scale thing they use. I took this in my stride awaiting my spinal results.

my spinal results came back having discovered I had a prolapsed disc causing dame to my spinal cord and Sciatic nerve, I had quite a big operation which at the time I believed to have fixed the issue. I had my scan later that year to check all was ok, they discovered I was loosing another two discs to the same issue and decided I needed a full spinal scan.

this discovered I was loosing 3 at my lower and 2 at the top of my spine and later discovered I have a disease called degenerative disc disease basically meaning my discs are crumbling causing what's called bulges on my spine which was pressing on my spinal cord. I had another two operations to try and fix my spine both of which failed. my final surgery has left me able to manage the pain and be some what comfortable. safe to say my career in badminton had ended and I was no longer able to go back.

over time my spine got worse and I'm left facing the decision of having a spinal fusion when my spine finally gives up the fight.

Throughout this period I had been having blood tests due to another minor issue concerning my vitamin D I was severally deficient causing great discomfort to my bones. Anyway one of my results came back positive for rheumatoid arthritis, and so I was sent to a specialist for further investigations here I was diagnosed with RA of my spine, hands, ankles, left hip and knee's. Yuck !!

Here I was also later diagnosed with Fibro and CFS/ME. Yuck !!

At present Firbo is causing me debilitating pain as you will all know too well.
My spine is a major culprit because my discs are degenerating this means my muscles in and around the spine are working over time to help keep my back strong, however firbo is making it extremely hard for my muscles to cope, so as you can imagine my spine is not feeling great.

so to sum up, I have Firbo,CFS/ME, RA Osteoporosis and degenerative disc disease. having just one of these conditions is debilitating as you know but all these together is not a wonderful combination. however I'm alive, happy and have all the people I need to keep me strong.

So that's me anyway .... some what depressing, but as im new to the group I think its good to share my story and hear about yours.

medication: Morphine, Pregabalin, Co-codamol, Amitryiptaline, anti sickness, steroid injections (cant spell some of the meds ha ha)

it would be great to hear from you and hear your stories, I joined this and another group to share and hear stories, were in this together, sometimes those around us don't quite understand as loving as they are, but we understand and so I love to talk to people who understand how it feels and help each other through it.

Thank you, I hope to hear from some of you

Keep fighting and stay strong

Tanya xx
Keep Fighting, Stay Strong !!
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Re: Firbo amongst other chronic ilnesses

Postby Zia2014 » Tue May 26, 2015 5:15 pm

Hi Tanya,

Welcome to the group! That's quite a long post and I'm afraid my eyesight isn't great at the moment, but I didn't want to read and not post.

I did see you mention badminton, I used to love playing that until I got anterior knee pain and had to give it up!
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Re: Firbo amongst other chronic ilnesses

Postby bigmommas » Tue May 26, 2015 7:39 pm

hya Tanya I`m 60 years old and found I had fybro 2yrs ago I also have polymyalgia rheumatic,a problem with my spine called osteopenia.depression,pernissious anemia,rheumatoid artheritis,etc etc I`m on 17 tablets a day I went on the sick in January never been back to work doctor wrote not am I not to go back to my job but I`m not to work again,even though I`m on all these pills but still in constant pain.i hope you get the right medication because iv`e been told fybro never go`s away good luck x :-D
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Re: Firbo amongst other chronic ilnesses

Postby tkent » Tue May 26, 2015 8:06 pm

Thanks for your reply :)
I'm on 22 meds a day at the moment including morphine 4 times a day,
I am at a comfortable state at the moment (touch wood, don't want to jinx myself) and I am able to work, so I am one of the lucky few. i'm a teacher of children with special needs, and I run clubs and schemes for children with sever disabilities to enable them to peruse their dreams.

I adore my job and the children I work with, tbh I think its them, my family and my partner that give me the strength to fight!.

pain wise im in a good state at the moment and am having a good few months, but flare ups when they happen are beyond painful. once firbo flares up it usually causes all my other illnesses to flare up also so its horrible. 90% of the time during a flare up im bed ridden. but I do as much as I can to try and avoid flare ups, I know allot of my triggers and so I avoid these things such as being on my feet for too long, if I know im going out for example and im going to be on my feet all day I will take either my crutches or my wheel chair to help, this works.

i'm very lucky to know my triggers and to be in some what of a working state, and be some what comfortable at the moment. so I thank my lucky stars at the moment, however I really like to talk to people who are in the same boat as me because I think that sharing our thoughts and stories can help build those walls and fight back against fibro. its good to talk to people who understand.

so thank you so much for replying to me

Keep Fighting, Stay Strong !!
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