by Jeanne Hambleton © 2007
NFA Leader Against Pain-Advocate
This is the story of a lady who had fibromyagia before it was invented and who is leading the way raising awareness with the medical profession. As a patient she is giving medical students an insight about living with fibromyalgia and long term pain.
Linda Allen, the mother of two children, who lives in Stoke on Trent, Staffordshire, also suffers badly with back problems and is waiting for surgery. She was diagnosed with fibrositis 20 years ago, before it eventually changed its name to fibromyalgia.
Working very closely with her own GP who is also involved in the local hospital and the Primary Care Trust, Linda has twice talked to medical students about long-term chronic pain and her fibromyalgia. The students have been invited to ask questions about her pains, medical history and the effect the syndrome has on her lifestyle.
Linda described her doctor as her ‘lifeline’. Her GP spends one day a week at the local hospital’s pain clinic and has a good insight into chronic pain disorders.
“She really listens to my point of view where treatment is concerned and this is worth its weight in gold” said Linda.
Linda admits she has a fantastic doctor and together they work to raise awareness about fibromyalgia and long term chronic pain, which will ultimately benefit future generations.
THE MED STUDENTS
At the beginning of the year Linda talked to 1st year medical students who were supposed to be doing a question and answer session on ‘living with chronic illness and the impact of it on family and friends’.
“When we got started they were terrified of me. Apparently they were expecting a little old lady or man with diabetes because that is the most common chronic illness around these days.
We got on fine but they had never heard of FMS so the subject matter was only touched on really. We spent well over an hour chatting about fibromyalgia and all that entails. I must say that they were very interested and gladly took the information I had printed for them. They said they were considering using FMS as part of their research for this year’s studies.
“They must choose a medical condition to do a paper on and because of the complexity of it all, they seemed quite keen to learn more. I thought that it went really well,” said Linda.
She is also hoping to give a talk about ‘a letter to normals’, which sums up how fibromites feel and other folks reaction the patients’ problems. The letter was included in the information she handed out during her first meeting with the medical students.
Linda added, “I have now compiled a sort of portfolio for when I talk to the 3rd year students so they can take the information away with them instead of relying on scribbled notes.”
Last week for the second time Linda answered her doctor’s request and spoke freely about her condition to more 1st year medical students.
“They needed a person who lives with a chronic illness, to interview and talk to. I usually start the talk by saying to all the terrified faces in front of me that they have no need to worry. These students also had never heard of FMS which was no surprise and they were very interested in all it.”
When they were feeling more relaxed with Linda she chatted about what they want to achieve from the interview and questions and answers. Again she provided printed information, which she downloads from her computer and invited questions about fibromyalgia.
Linda added, “I give them web addresses and my own email address and telephone number. I assure them I really do not mind further contact from them with any questions they may have thought about later or if they need to clarify any points made on the day.”
During the informal chats Linda said her GP leaves her alone with the students in one of the rooms at the local surgery.
“When we have finished the GP spoke to the medical students about what they had learned and answered questions they had following the interview. One male student who prior to the meeting said he had no clues as to which direction he wanted to go regarding his medical career, later expressed an interest in becoming a GP,” she added.
“Perhaps I made an impression. I gave them each a copy of the FM FaMily magazine as it contains plenty of information. I was with them for just over an hour but to be honest I felt that they would have sat there for the morning if possible. They were very interested in the condition, how it affects daily life and all the other connotations it brings, effect on family, quality of life and the medical professions responses to the condition and varying treatments etc.
“My Doctor said the medical students were really pleased with how it went and more importantly the students thought it was very informative and that I was a well informed patient who was totally approachable. This made the whole talk time very beneficial to them. It also gave them good practice in a patient doctor situation where they could ask questions and pick my grey matter and in response get the answers they needed to make notes for later” said Linda. She again offered post meeting contact information, which was appreciated.
Linda told me having a little known condition, which falls into the chronic illness category, this gives many of the students their first contact with FMS and that can only be good.
This week Linda was on cloud nine and wrote, “I cannot contain myself! I have just opened my emails and have one from one of the students I met on Friday. He expresses a keen interest in FMS and says he wants to keep in touch if possible, how about that? He has been looking up information using the notes that I gave him, and says and I quote ‘I am finding out so much about this condition and would like to keep in touch, if you don’t mind, as I wish to find out more’.
“What a breath of fresh air he is! If the future of the medical profession rests with young men such as this medical student then I feel much more confident about our future as sufferers of this pain in the butt condition which we share. My GP really is a darling. I have assured her I really don’t mind doing anything that raises awareness so I may be doing a lot more in the future.
ALL ABOUT LINDA
“My mum and other close family believe I was showing symptoms of fibromyalgia in childhood though, especially in my teenage years. I was an extremely sporty child and threw javelin, played netball at county level and also ran cross country for Staffordshire. I played hockey for my school as well as badminton and rounders and rode and looked after horses,” she said.
Now she also has spinal and disc problems that may be attributed to competing with the javelin. Her symptoms of FMS became more obvious at the age of 18 while working in the pottery industry.
“I swopped to an office job as a radio controller by day and was a barmaid at night so always had a really busy and hectic life with at least 2 jobs, most times 3. Fibromyalgics are never lazy folk – always very active. That is why I think it is so cruel as it only strikes the people it seems to hurt the most. You never meet a lazy fibromite who has had an easy life or a slow one either.
“My big turning point (trauma) was the death of my gran to whom I was so very close. I still miss her now and cry when I talk about her or look through old photos. This is silly, as it was so long ago but that is how close we were. When she died I collapsed and did not even make the funeral. I could not move. That was my definite trigger into the world of FMS. I have had it so long and when I was diagnosed it was still called fibrositis.”
“I worked until I was 30 years old when I got a severe case of chickenpox (anything viral is murder for us fibromites) and I was never the same again. I had the chickenpox for months on end, as my immune system was so low. I just kept getting re-infected every time I made any progress at all. This finished my working career and stopped me taking part in most of the physical activities. I had always enjoyed my whole life, and this was a devastating blow as you can imagine. I am and always have been such an active person,” said Linda.
“Twenty four years down the line I still have not quite got this ‘pacing’ quite right. It is soooo hard to live in a body that hurts so much and will not do the things we love to do. As I sit here now the pain in my legs from just touching the seat of the chair, is nearly unbearable. But it is a good job I am as stubborn as I am and nothing will ever beat me or keep me down for long. I am certain that my strength of character and sheer determination has helped.
“A doctor once said to my husband that the only reason I was not in a wheelchair at that time was the determination that has kept me upright a lot of times when I am sure I should have been flat out,” said Linda.
She told me, “Thinking back about those days all makes me tired just remembering.”
Ever the optimist Linda recently wrote, “A friend of mine has been popping over to Spain this last 6 months and staying in a place near Playa de Las Americas (Tenerife) with a few Salt Lakes around and its a natural spa. When you have been staying there for a few days apparently all aches and pains just go away!!! We need to get a week or even a month there on prescription from the NHS Jeanne, I wish!!! Sounds good though eh?”
Linda who is now severely disabled with fibromyalgia and serious back problems, has my great admiration, for in spite of all of her pain she is leading the way to raise awareness in the hope that tomorrow’s GPs will be able to diagnose FMS more easily. Linda, you are a great example to us all and what a star you are. Keep up the good work.
If anyone else is willing to talk to medical students about their fibromyalgia, print out this article and send it with your request to your local Primary Care Trust (address in your telephone book) and tell them you want to raise awareness. Maybe if you have a fantastic GP, he or she will help you too.
A final message from Linda – if you need any guidance or advice with your ‘giant step for fibromites’ she is happy to ‘talk’ to you by email.
Write to firstname.lastname@example.org
If you have any success do let me know and I will write about your interview with tomorrow’s GPs. Good luck to you wannabe fibromyalgia speakers and keep up the good work Linda. Talk soon. Jeanne
by Jeanne Hambleton © 2007