Fibromyalgia support group
charukesi August 26th, 2008
My status message across places on the internet reads - cross between a zombie and a junkie. and that is how I have been feeling these last couple of weeks, especially the last few days.
Just up after two days of forced bed rest - which happened only because the husband worked from home to keep a watch on me - am up and about. Barely. Was just telling him - I’d forgotten what the pain is like…
One. forgets. so. easily. The everyday every minute pain I live with anyway… But I’d forgotten what the debilitating enforced bed-rest type pain is like. I am feeling somewhat cheated now that it has crept back into my life. Hey, I thought you’d gone away…
The zombie-junkie mode I can live with. I am on a new course of medication for my fibromyalgia pain and that keeps me drowsy and disoriented through the day. But that I can live with - there is hope at the end of all the daze.
What is disturbing, distressing, is what I have found out now when I have started seriously researching fibromyalgia on the net.
On a message board I came across - I have fibro, I was told by dr.s for years the pains I felt were all in my head, I was glad when I figured out I have fybro - a stranger half way across the world - in the western world of advanced medical care. And she says what I think and say…
But you look fine to me…
It is all in your mind…
Think of all the people who have worse pain than you…
From doctors and from people whose worst experience with pain has probably been a foot sprain back in school… And I grin and nod my head and move on. And wonder - maybe it is all in my mind. And like this stranger, I was glad when the diagnosis was first made. Glad to know what it was that kept me awake and tired and in pain all the time…
All this moaning - I have a point. I read And I wonder how many people in India are going through the it is all in your mind treatment from their doctors and friends and family. Fibromyalgia cannot be diagnosed with x-rays or blood tests, it takes a learned and sensitive medical practitioner to understand this syndrome.
So I have been thinking about a support group for this in India - except I have no idea where to begin and what it can do.
Like I’ve said earlier, pain is a very lonely place to be… And all I know at this time is that I want to provide a space where it is possible for fibromyalgia sufferers to be able to share that pain and loneliness… Something on the lines of these sites National Fibromyalgia Association and Fibromyalgia Network - in India.
So what are your thoughts? ideas? Maybe a good way to begin would be to write about it in a health magazine - any thoughts on this?
Please respond… This is very important to me. And perhaps a lot of others too…
***
the truth is that my will power has a hundred re-births each day. it lives when i foolishly expect to live normally like everybody else. it dies when others foolishly expect me to live normally like everybody else. it thrives when i am fighting by myself. it is murdered when i visit the doctor.
From a fellow fighter-survivor…
You know, R, maybe we need to stop pushing ourselves so much. let go, V keeps saying to me. Maybe I just need to learn to let go and not worry about proving a point. To me. Least of all to others - who anyway think - but you look fine ![]()


















