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Fybro and me

22 Jun

I have been doing a lot of thinking this past few days about Fybromyalgia.  I have joined forums and groups and I am still learning from other sufferers, even though I was diagnosed six years ago.   I had thought that Rheumatoid Arthritis had been the cause of my pains,  the other symptoms were separate issues. I had no clue about Fybromyalgia.  I was diagnosed and then given a leaflet and I was advised that I should tell my family and friends that I have Fybromyalgia and let them read the leaflet too.    All I knew was that my whole being was changing.  I always liked to keep busy and right up until two months ago I kept  trying to plod on regardless of the pain and exhaustion.  However, my body was telling me to slow down and I got to the stage where I had no choice but to take heed of my body and slow down.  I was almost burnt out.

This illness changed me from a lively active human being into a moaning, groaning android.  The person I used to be no longer exists, and that is scary. My dreams, priorities and day-to-day living have all changed, pain management and careful planning now take first place.  During a flare up of Fybromyalgia, the medication I am prescribed by my doctors are Tromodol and Amitrypline, these make me like a zombie, I am unable to think straight, barely able to form a sentence and all I do is sleep most of the time. However, the medicine does help loads with the pain so I am grateful for that, but, what a price to pay for  some sleep and less pain. 

When first diagnosed you are not told all of the symptoms of Fybromyalgia, you are told the basics about the illness. Here are some of the symptoms I live with almost every day and these symptoms are shared by a lot of other Fybromyalgia sufferers.

Sensitivity

Suffering from Fybromyalgia often means that you become sensitive to things that you would normally not worry about.  Here are a few of the sensitivity problems I now have:

Light:  I find that there are days when I am light-sensitive and need to close the curtains or if I am in shops or out in the evening, the lights in the buildings are hard to cope with. 

Temperature:  Cold is the worst, it brings so much pain to my body.  Heat can be very uncomfortable too and finding the right balance is often difficult.  By body thermostat does not work properly.   Sometimes my feet feel so cold it is like I am standing in pools of cold water.

Pain:   Pain seems to be intensified and I have been told that this is due to the nervous system which is affected by this illness.

Medication:  I have become allergic to penicillin, apparently this can happen with all kinds of medication, food and drinks etc. 

Depression comes and goes and is usually linked with constant pain,  fatigue, frustration, lack of mobility, and dealing with not being able to do the things that you used to be able to do.  The lack of being able to think straight, (Fybro-fog or foggy brain), only adds to the frustrations.

The illness of Fybromyalgia not only has an effect on the person with this illness, but it also has a huge effect on family and friends, who have to cope with seeing the changes taking place and frequently the uncertainty of what to do to help.   It would be easy for someone with this illness to disappear into themselves and not let anyone in, especially during times of depression. 

I am so glad that there are online forums to meet and talk to other sufferers.  I would have felt very much on my own with this illness had I not met such lovely people.   I am also so glad that I have a wonderful support group within my family, for without them I know I could not cope with this illness.

 
 

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