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. I wake up groggy after a night of fitful sleep, take my morning dose and spend the day in a daze till it is time for my night dose, after which I spend till bed-time nodding off sitting on the sofa. 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…
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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 🙂
I think it would be a great idea to start writing about it and spreading the word! I can very well imagine that doctors would take the “it’s all in your mind” attitude. They used to say that for menstrual cramps, not too long ago! And fibromyalgia is much worse because there are no symptoms or obvious cause 🙁
Sorry to hear about your troubles.
I don’t know if there are any Indian medical blogs – perhaps you could sign up as a guest writer on one of those – to spread/collect more info about fibromyalgia and treatment in India? or you could also use a blog/forum like that to get in touch with people searching for info – that could be a starting point for a group.
if it is pain and you feel it – it is there…..
don’t fall for the doc’s telling you that it is in your mind. and even if it was in the mind — there is still pain 🙁
support groups are a good idea. just so that people know that they are not alone !!
hope that you feel better
Hi,
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Richa
Blog Editor – SiliconIndia
just posted some thoughts on my long-overdue blog-post.
i checked with my gp about lyrica too. apparently i have been given the same composition, another brand (don’t remember which one now), about three years ago. she offered me another go at a course, but i refused … can’t go through the hammer-in-the-head-feeling, the zombie-days again, not with a normal, happy toddler around…
article in the health magazine, in fact, any commercial magazine, may work. no, i am sure it will work – to spread the word around at least. i remember my doctor also saying to my father (i was a schoolgirl then): there is no pain…it’s in her mind….she doesnt want to study…
at least people will know who the real phantoms are…
It’s really tough to live with fibromyalgia, especially in India, where many people (doctors included) don’t believe it exists. I think writing in health magazines will be a good start, but I also hope you’ll think about writing about fibro in more mainstream publications. Awareness is very important. And things like support groups are very important as well.
But keep at it. You’re doing a great job Charu.
I believe you would greatly benefit from the information provided in the Fibromyalgia Network Journal and the monthly eNews Alerts. We have Members from all over the world who tell us so. If you receive mail, then you can receive the Journal in your mail box and if you have Internet access, you can receive the monthly eNews Alerts, too.
You also will be able to participate in Member surveys, which are done online, and you will be notified through e-mail when to participate. You can submit questions for our Q&A column, e-mail questions directly to us, access our website, download abstracts, receive discounts and free articles. I guess the only thing we offer that would not benefit you is our listing of regional doctors who treat fibromyalgia. http://www.fmnetnews.com/about-benefits.php
So please don’t let a few miles discourage you from becoming a Member of the Fibromyalgia Network Family! Don’t pass up a chance to improve the quality of your life.
I don’t know if you have read this article in the New Yorker. It has this fascinating section on pain and how the sensory system can go haywire on pain.
http://www.newyorker.com/reporting/2008/06/30/080630fa_fact_gawande?currentPage=7
n!
Sorry to hear about the condition. Blogs and websites in general may be a good place. Getting in touch with some health magazines might too help. I shall mail you the contact of the medical reporter of a national newspaper. Probably through it, you could bring in some awareness.
My sister has Fibromyalgia too and has been suffering for over 10 years now. I will send a link of your blog post to her. I am sure she will have some insights into the whole thing. Take care.
True, very true. Here, in India, pain is oft relegated to being caused by mindset of people. I have a mild lumbar disc prolapse myself and experience pain on and off. Just pulling along with rest now and then. As for fibromyalgia, yes, from what I read, its indeed a difficult diagnosis to arrive at. Yes, it would be great to form a forum on those lines. Meanwhile, best wishes for a recovery.
Sathej
Hi All,
I am doing a project for those of us with Fibromyalgia around the world. I am matching up pen pals that have Fibromyalgia in the U.S. with “Fibro” people in other countries so that we can start to make our “Fibro world” a bit smaller. I am writing a book on how we all deal with having Fibromyalgia, physically, medically & socially. I have a 12 page questionnaire that I ask each pen pal to fill out, (Of course all identifiers will be changed to protect everyone’s identity!) then each pair can proceed at their own pace however they wish.
My goal is to help us understand Fibro, bring us all a little closer, and maybe different countries have different ways of coping that we can share!
I live in Chino Hills, California U.S., and if anyone would like to have a pen pal, or be interviewed for my book, PLEASE contact me as soon as possible!!
Thanks,
Cynthia
cynamin.girl@yahoo.com
Keep writing about it Charu,and keep us educated.