looking for an old post - need help

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Re: looking for an old post - need help

Postby minnie7126 » Tue May 04, 2010 12:14 pm

i posted a reply to say who had posted a letter and i have managed to copy this and hopefully if i have done this right it is now at the bottom of this post, it has been very helpful to me so i hope it is for you too
minie x :D

Report this postReply with quotea letter to Miriam stoppard
by jackiemills » Mon Mar 29, 2010 2:26 pm

Hi i am posting this letter to show what i have wrote and sending on to miriam stoppard who wrote an article on chronic pain that i was not impressed with

Dear Miriam

I am writing to you in regards to an article that you wrote in the Daily Mirror on the 22nd March 2010.
Don’t be beaten by CHRONIC PAIN

I read this article because I have been living with chronic pain for over 40 years. I have pain all over my body and this illness is called Fibromyalgia. When I saw your article in the paper, I was excited at the thought that a Doctor with your reputation started to consider and recognises the seriousness of the invisible illnesses. The concept that suffers of Fibromyalgia comes across frequently when trying to gain treatment is that ‘cognitive behaviour can help treat chronic back pain’ with this statement you undermine the millions of people who suffer all around the world. At this I was extremely disappointed.

As a patient with Fibromyaligia I have been in pain for over 40 years. During childhood I was very active, taking part in most sports, being in pain since before I could remember did not destroy my childhood. The exercise you suggest is ‘extremely beneficial’ had no effect and in some cases I believe aggravated my illness.

The case of ‘Vicky Joseph’ which you mentioned in the article is a reductionist view point of the masses that do suffer from a form of chronic pain. For the pain to develop within 5 years in order to discover she had a ruptured disk, again does not account for the chronic pain in which the suffers of FMS/CFS and ME patients. In the case of Fibromyalgia, my pain is consistent throughout my body, expanding from the tips of my toes to the top of my head. Also, to be classes as having Fibromyalgia is to suffer several different other symptoms for just a few examples, CFS, IBS, SLEEP DISORDER, BLADDER PROBLEMS, MIGRAINE HEADACHES and SHORT TERM MEMORY LOSS, BALANCE, RESTLESS LEGS. Fibromyalgia doesn’t take holidays or breaks, the illness is constant and the hopes of many are to be ‘virtually pain -free’.
Unless you have seen a person in a very bad flair up of Fibromyalgia, to which I will add, you would never see this person because he or she would not be fit enough to escape from bed. In the case of the invisible illness most would only meet these people when they are having a better day, which to everybody who doesn’t suffer would have them in bed. Having a better day means you can get out of bed, waking up every morning that is my goal. To get dressed and maybe tidy up is a miracle. You see these patients walking round maybe shopping, this is the miracle, this is why you see us happy and smiling, even the pain is still insurmountable we are still living the ‘normal’ life. Which is why when we turn up at the doctors, on the rare occasions we can get there, we are dubbed hypochondriacs by friends, family and physicians, due to the fact the see us when we are at our best. This adventure and maybe 4 hours of freedom in the outdoors, the tiny exercise of walking down the stairs of if we are feeling great walking to the car will come back and haunt us the next day, the slightest bit of activity inn our life makes us not move for the next few days. So how do you expect the Chronic Pain suffers like myself and the millions like me to take your advice? The fact that it is ‘mind over matter’ is an insult to invisible illnesses around the globe.

Due to the fact many people do not understand as we can be in bed for months the next appearing to do the shopping as if nothing is wrong, can cause strains within the family. Speak with fellow patients has brought to my attention how lucky I am, and not all of my family understand. There are women out there who suffer worse from the depression side because there husbands, children and people around them think they are lazy and useless.

Once I finally got diagnosed 3 years ago, I was relieved that the pain I had been suffering was a reality, finally a doctor who grasped the fact that I had an actual illness, which unfortunately your article does not. What has angered me most about your article is that you describe Chronic Pain as a pessimistic approach to life and that ‘it is vital to adopt a positive attitude’. Never have you once mentioned the illnesses most related to Chronic Pain nor have you stated the impact that this can truly have on your life. ‘months and even years’ is what you wrote, many are suffering for lifetimes.

What we are fighting for is knowledge treatment and understanding. Too many of us are being shunned by doctors because it is too complex, they don’t understand, or they don’t believe in the illness. There are stories of patients that haven’t gone to their GP only to have them ask what do you want me to do? This is what we are fighting against. The depression is not only caused by the tablets and the illness, its caused by those who are supposed to help doesn’t want to and can’t understand. I have found great relieve in social networking sites such as Facebook. This has provided me with much more information and guidance then any of the doctors has done. I’m asking you to do your research, talk to those that suffer with invisible illnesses. If we can get one more doctor to believe then maybe we can have a better chance of finding the right medication and having those with Fibromyalgia diagnosed. Since learning about the disease I have spotted very similar symptoms in many of the people around me. The doctors however have not.

It is Fibromyaglia awareness Day on 12th May, Help us in our endeavour to create awareness and in the hope that one day people will understand, fighting the looks of distain is one of the most terrible symptoms we have.
friends are like angels, they lift us up off our feet when our wings get too tired to fly
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Re: looking for an old post - need help

Postby princess » Wed May 05, 2010 1:34 pm

Thanks but its not on the foum now - unless someone has a copy?
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