Open Page For Fibro Sufferers To Describe What They Think Causes Fibro

Hi its Georgie here :) My understanding of my illness is.

I have permanent damage to my central nervous system that means my nerves send pain signals to my brain, however these pain signals are defunct but my brain converts them into real pain meaning that I feel pain.  I think of it as my Central Nervous System misfiring.

I beleive that the tiredness and muscle fatigue come from my body not reaching REM sleep therefore never fully recovering from any activities that day, so the more I do one day the more sore I am the next day.

I beleive the insomnia is caused by the misfiring CNS 'Central Nervous System' which sends messages to my brain telling it I am not tired or that I have not expended enough energy throughout the day meaning that my brain does not shut down even if my body wants to desperately.

My brain misdirects messages sent from my CNS firing off all the wrong messages to my body - I beleive that I have FMS due to an Emergency C-Section which sent my body into shock also the trauma of the surgery and the trauma and shock emotionally from thinking my baby may die as he was 8weeks premature.

I didnt have FMS symptoms until my son was 8weeks old and the pain started in a solitary middle finger of my right hand and within 2yrs was widespread throughout my body.  I have however had CFS 'Chronic Fatigue Syndrome' since being 18yrs old, but do not beleive that this is what has caused the 'Fibro' as I can pinpoint exactly when I started with Fibro symptoms and how they started and where.

I beleive that much more studies should be done on the sleeping habits of people with Fibro as in 'Sleep Clinics' I am trying to get into a sleep clinic presently to find out why my body does what it does at night time and what depth of sleep I actually acheive as I beleive that sleep would be a key element to Spoonies feeling better with much improved symptoms especially depression.

Thats my THEORY anyway and until there is proof im wrong im sticking with it :P ;)) x

Elaine & Fibromyalgia

Elaine & Fibromyalgia
By Elaine Rush

I'm 33 and was diagnosed with fibromyalgia a few years ago but have had symptoms going back to early childhood.

I had sleeping problems as a baby/toddler and then various aches and pains that were explained to me as 'growing pains' or as a 'low pain threshold'. As I got older, I became increasingly frustrated with the limitations that my pain forced upon me. I have had to give up many things over the years. Driving lessons, guitar lessons, yoga and gardening to name but a few things . I missed time from school, college and university, and even my family began to think I was just a 'typical lazy teenager'.

As I got older, my condition got steadily worse. For me it's never really been a 'flare up and down' kind of thing. It's constant pain, fatigue, sleep problems and muscle/ligament injuries. And that's if I don't overdo it. If I do, I'm flat on my back with migraine-type headaches, total muscle spasms and unmanageable pain in my neck, arms, legs, back, hands and feet. When I say overdo it, I mean do something outside of my usual routine. I use the word 'routine' loosely as for me, my condition dictates my day, so plans and schedules are difficult. Although being spontaneous is impossible too as it takes me so long to get ready/get started with stuff.

After my diagnosis, I was so relieved to be able to put a name to what was wrong with me because by then even I was beginning to think I was going mad! I'd had endless tests and appointments and sometimes been treated like a hypochondriac/liar/complainer/drug seeker by limitless medical professionals and some other people in my life too. At least once I knew what it was, I could learn about my condition and at least try to help myself. A diagnosis doesn't get rid of all the doubters though. Far from it. Lots of people think that fibromyalgia is 'all in your head'. To those people I say "It's not. I have the physical swellings and muscle spasms to prove it".

Almost 4 years ago I was forced to give up work because of my fibromyalgia. I had worked at the same place for 12 years, enjoyed my job and was very good at it. But it had got to the point where my life was just work and sleep. And even then, I often had to leave work in the middle of a shift because I was too ill to carry on. Eventually I was so run-down and exhausted that my back gave in completely and I was flat on my back for about a month. After that, my condition deteriorated further and now I spend my days at home, not even able to do housework or proper cooking. I have hobbies like reading and drawing but can't do them often or for very long, so mostly I watch tv. Luckily, I have the most awesome husband in the world. He never complains about the household stuff that I am unable to do, and he is also very supportive. I get backrubs every day and he makes sure that I know I am still needed, valued and have a purpose.

This is so important to me because my 'usefulness' and part of my identity was lost when I was no longer able to work and support myself. It was soul destroying to have to give up the job I loved because until then, I had ALWAYS worked.

In addition to the guilt and the sadness of not being able to get up and go out to work, I struggle with keeping my sickness benefits because I have to convince their representatives that I'm telling the truth and not just choosing to stay at home for the fun of it. I absolutely don't mind going to medicals and sharing medical info with these people because I understand and agree that they need to check on those of us who claim sickness benefits. However, it's not easy to explain a complicated condition and the extent of how it affects my every day life in a 30min appointment. I can't for the life of me understand why anyone would choose to stay home instead of going to work, but unfortunately I'm often seen as one of these lazy scrounging types simply because those who don't live with it find it so hard to believe that a young person who looks outwardly healthy has a debilitating medical condition like fibromyalgia.

Sadly, it's not just these people who don't 'get it'. I've lost friends because they can't or don't want to understand that most days I can't go out, so they always have to come to me. I'd say that only my husband truly knows what it's like because he sees it everyday. My parents are supportive but there are many others who don't understand. This is upsetting and it hurts me to know that people either don't believe there's much wrong with me, or think that fibromyalgia is just 'hurting a bit'. Alternatively there are those who believe totally and therefore see only my fibromyalgia when they look at me and then they feel sorry for me, which I don't want. I'm still the same on the inside as everyone else. When it snows I want to go outside and have snowball fights, when it's sunny I want to go and do the gardening, when there's a party I want to be there and I want to dance. But I can't. That's difficult to accept for someone as strong minded and independent as I am.

You may notice that the part of my fibromyalgia I have left until last to talk about is the 'actual' fibro stuff; the pain, the fatigue, the fibrofog - memory and concentration problems, sleep problems, muscle spasms and injuries. This is because I don't really know how to tell you about it. There's no way to express it completely in words, but the best way to describe it is to say that everything hurts every day but the parts of me that hurt the most changes daily or hourly. The pain is sometimes aches, sometimes pains and sometimes a real raw soreness that makes me feel like my nerves are jumpy and jangling. It never goes away but sometimes gets worse. My whole body feels like it's all twisted up. I've been tired and had a headache for as long as I can remember and 'fibrofog' means that I can't always think clearly or remember the right words for what I want to say. Fog is definitely the right way to describe it because it does feel like I'm wading though fog physically and mentally all the time. It's certainly no fun and I'd love to wake up tomorrow and find it had magically vanished overnight. Until then, I just do the best I can. It may not be much, or sometimes may not be anything at all, but understand that behind the fibro, I'm just a girl who is trying to concentrate on the happy stuff, and who is eternally grateful for my husband and the other great people in my life.

Thanks for reading :)

4 comments:

  1. I don't think I could add anything more to that. I like your explainations; they describe how I feel to a "T". They "claim" there's not damage to the nerves, but there must be.

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  2. Hi Georgie - brave and strong words and I do share your pain and support your findings.
    I believe that my Fibro, which was diagnosed in concert with my ME almost 9 years ago, manifests itself in damage to my muscles in specific sites - my left pectoral muscle over my heart, my lower back, my right leg, amogst others. I feel it is connected to my recently (June '11) diagnosed hyperthyroidism which has also weakened muscles. What is importnat is that we FEEL the pain and our pain is real. In co-morbidity and solidarity xxx

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  3. That is a great explanation of what is fibromyalgia. It can be hard to understand at times but your explanation really helps.

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  4. Thank you so much for your feedback, I have been unable to visit the site for last 3mths as fibro has had me pretty much bed bound n asleep.

    Its been great to come back to see these comments - Annie I strongly believe it is our central nervous systems that r sending defunct msgs to the brain which then iterprets them incorrectly I may be totally wrong but it made sense to me after all of the reading I had done about it.

    Rustie the biggest thing I have noticed is how much we are accused of making things up. I chose for this reason to start this blog so that ppl could know they are not alone with this life changing illness, it affects each person who has it in similar yet *fingerprint unique ways also. As no 2 ppl will have the exact same levels of pain or pain in all the same places at the same time but they will be able to empathise unlike anyone else. Its hard for ppl to understand that an illness that has a name is as unique as a fingerprint in how it affects them.

    Daniella so plsd the blog has helped u, fibro was always hard to explain n as an 11yr sufferer I have had time to wrap my head round it, deciding that I would share any knowledge gained and or personal explanations in normal words that ppl could connect to.

    Its nice to know it connected with you.

    Thanku for ur feedback Georgie xx

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