Thursday, September 02, 2010

Fibromyalgia, CFS and me

I've had a few people PM me on Facebook and send me emails asking what this muscle condition I have is and I realised I've never really spoken about it in depth before. I really want to raise awareness of Fibromyalgia and Chronic Fatigue Syndrome as they are both evil, silent chronic illnesses that I hope you, or any of your loved ones never have to deal with.

Firstly, a little bit about fibromyalgia which I will refer to from now on as FMS. Fibro - fibrous tissues + myalgia - muscle = chronic muscle and connective tissue pain. However, FMS symptoms are not just restricted to pain, there is also the debilitating fatigue, bladder and bowel abnormalities, sleep disturbance, joint stiffness, myofacial pain, numbness and tingling and the dreaded 'fibro fog'. These are just a few of the symptoms people with FMS may suffer.
Although the muscles hurt everywhere, they are not the only cause of the pain. Symptoms are greatly magnified by malfunctions in the way the nervous system processes pain.

My story with FMS began about 12-13 years ago now THAT I CAN REMEMBER. In hindsight, I'd had symptoms way before that but around the 12-13 year mark I'd been to a few doctors complaining of aches and pains all over. Long story short but I was always told it was just stress and what did I expect having so many kids blah blah blah. At that stage, Josh being the eldest was around 10yrs old and Jack had only been born so we had 6 kids under 10yrs old. So I was kind of used to having kids and knew that no I wasn't stressed or under anymore undue strain or pressure that I hadn't normally been under I was just very sore and I knew that it wasn't normal. Believe me, back in those days when the kids were all that small I was much more organised and efficient than I am now...LOL

Almost 12 years ago we moved here and I remember chatting to my next door neighbour about it and she told me to go and see her doctor just around the corner. I remember the first time I ever met Brian, who is still my doctor to this day. This fabulous man changed my life and for a long while there he was my God. I don't see him as much now as he has moved to a busy medical centre and is a much sought after doctor.
I remember the first time I told him about these 'aches and pains' and how I couldn't really describe them. I remember saying it was my muscles and it was all over and how it felt like someone was sticking hot knives in me sometimes. Not the kind of pain you feel when you've been to the gym and had a hard session, it is a deep, deep muscle pain. After a few months of me whinging and whineing and researching on the Internet I came across an article on FMS, It was like a light bulb moment! So armed with this new information I went back to Brian who, before I could even show him what I had, he said I think you have a condition called fibromyalgia. I nearly fell off the chair! It was just bizarre. So I started looking into it even more and reading about different treatments and was really happy that now I had a diagnosis I could fix the problem and get on with life. How wrong was I??

Over time the symptoms got worse and worse to the point where I literally couldn't move. The FMS had manifested itself into Chronic Fatigue Syndrome and this, my friends, you wouldn't wish on your worst enemy. Day after day after day I would lie there unable to get up, unable to do anything that involved even the slightest bit of exertion. Josh was an apprentice chef at the time and didn't have his license so I used to have to drive him the 40min round trip to work at 1.30p.m and pick him up again in the night when the restaurant had shut which was mostly around midnight. I would have to save all my energy just to do that. When I dropped him off in the afternoon I'd head straight to the school to wait for the other kids. I was lucky my good fried was one of the lollipop ladies at the school as I would fall asleep as soon as I got there and she'd come and wake me up when the bell went.
I would drag myself off to watch Jye and Jack play footy on the weekends. Michael would set my chair up and within 10 minutes I'd be asleep. You know hard it would be to sleep on one of those canvas chairs right? Well I had it mastered!! I can look back now and laugh at the times Michael would gently push me and say 'You're dribbling' or 'You're snoring'. I'm sure people must have thought I was a junkie or something! I was determined not to let it rule my life though so I went off every weekend to watch my boys and never missed a game.
I was and am very lucky and very appreciative of Michael, my kids and my father who helped me through the 'three years I spent on the lounge' as I call it. I know it wasn't easy for them but they supported me and each other and we all got through it. Funny thing, I'd become very attached to this lounge. We had two 2 seaters and a 3 seater setting and the 3 seater was MINE. The lounge suite was quite old and the two 2 seaters were literally falling apart and Michael was at me to get a new lounge. There was no way I was giving my lounge up though! Long story short again, in the end we had to as the two 2 seaters were literally propped up with milk crates but like I said I'd grown so attached to my 3 seater I couldn't bear to part with it...heheheehe.. Finding a new lounge for me was a story in itself but I won't go into that now.

Over this time I was havng vitamin injections, acupuncture, massage, on special name it I did it. Nothing worked. It was one of the most depressing things I have ever been through. To lie there watching your family go about their business and not being able to do anything to help is heartbreaking. My mind said 'Get can do it' but my body said 'Don't bother'.
I read books on FMS and chronic fatigue (CFS)...when I could hold them, I surfed the Internet looking for information on them...when I could sit upright and I spoke to my doctor about different treatments...when I had the energy to go and see him. At my very worst and even now when I get stressed or have a lot on my plate or when there are a lot of changes in my life, I get 'fibro fog' which is freakin' horrific! The only way to describe it is like there is a beanie on my head and where that beanie sits on my head, it's a fog. You can't remember anything, you can't retain information, you do stupid things because you just can't think straight. It's like you have a numb brain.

Slowly but surely the chronic fatigue started to lift so that I could do more and over time it got to he point where I thought it was gone forever. Wrong again! However, as I'd spent so much time lying down I threw myself into anything and everything. I think just to prove to myself that I could do it. At one stage I was on three different committees as Secretary and for a while there everything was working out OK.
I even started to think 'Wow might even go back to work now'. So I did. Lucky for me I walked into a dream job and worked with the most beautiful girls you could ever wish to work for. The only thing I absolutely couldn't cope with was the travel. It took so much out of me. Then coming home and racing the boys off to cricket training....arghhh
As most of you know our boys are very involved in cricket and 9 times out of 10 on the weekends we are at games from 8.00a.m Saturday mornings till 6-7.00p.m Saturday nights and then from say 9.00a.m Sunday morning till 5.00p.m Sunday night so basically it's our whole weekend. This almost KILLS me! I literally crawl inside after cricket and lay back on my lounge until I have to go again the next morning, even now. Everyone is always commenting on how Michael is so organised as he packs the Eskys and gets the food ready for the day but the poor bugger has just had to learn to do it all himself over the years and now he just does it on auto pilot God love him.

There is so much more information available to people now about FMS and CFS than what there was say 10 years ago. Every now and again I'll trawl through the Internet to see what's new and if they've discovered some kind of cure for it or what new treatments are out there. Basically, I've just learnt to live with it. I have gotten much better over time... it's still there, my muscles are still always sore and I'm still always tired. Being just sore and tired though I can live with...being 'fatigued' is something I can't. There is a MASSIVE difference between being tired and being fatigued so much so that your muscles feel like dead weights and even lying on a bed or a lounge takes so much effort. Every now and again, like now, I'll have a bad flare up but it makes me appreciate the times when I'm just sore and tired.

Well I hope I've given you some insight into living with FMS and CFS and if you've read this far, you deserve a star. I hope I've explained it so you can understand it a bit better to the point where if you do know someone who has either of these illnesses or both, just give them a big hug and say 'Now I understand'.



Terri C said...

Hi Sharryn,

I never knew much about this condition until I moved here to the USA where every medical condition known under God is advertised along with the treatments. Also a friend of ours suffers with it. She is on a new medication called Lyrica and she has said it helps her immensely. I am not sure if it is available there in AUS but maybe you could ask your GP if it could work for you. My hat is off to you for raising such an amazing family with this horrible condition. xxx

Erica said...

Mmmm. Interesting. I have recently completed my second year 'on the couch'. And it's fucked. Painful. Shameful. Exhausting. Miserable. Pathetic.
I hated reading your post, mostly because I am still holding out for a magic pill. Or a diagnosis that is actually treatable.
Wish I could have spent some of these years on your spare couch... although we would both probably be too tired to talk :)
Thanks for sharing, I KNOW that it wasn't easy

t is for trackles said...

Oh Sharryn, I never are truly amazing to have the fantastic attitude that you do, you make me laugh almost every day with something you write on Facebook, and I love oohing and aahing over your creations all around the traps. To learn about what you went through, it has touched me beyond words. I hope that in your lifetime there are new treatments that can help you with the pain, and I hope the CFS NEVER comes back. But most of all I look forward to meeting and spending time with you one day IRL. Thanks for sharing your story and educating us about these dreadful nasties.
Lots of love,
Trace xxoo

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