by Jeanne Hambleton ©
You may remember the story about Linda Allen, a UK fibromite who in spite of being severely disabled with this invisible disability has been raising FMS awareness among medical students. Her gracious offer to help anyone willing to follow her example and spread the word has resulted in a flurry of emails, mostly from the USA and Canada.
While Linda and I are both willing to help, advise and encourage anyone from anywhere to pick up the gauntlet and run with it by talking to medical students, it is surprising that so few UK sufferers have written. It is here that we believe many GPs are still blinkered as far as diagnosing fibromyalgia is concerned.
For some long time those with this awful syndrome have been telling me that their doctor suggests it is all in their head. Trust me I am a fibromite – you are not imagining the aches, pains, chronic fatigue, sleeplessness, cognitive problems and many of the other nasties that cohabit with fibromyalgia. These ARE the symptoms.
All this time I have been thinking that in Canada and the USA, where there are so many knowledgeable experts in this field, fibromites were being recognised and diagnosed far more quickly than the years it takes here in the UK.
The moral behind this thinking is, we have a huge worldwide job to raise awareness about fibromyalgia, not only in the UK but just about everywhere. With this is mind it is even more important that you contact your local health authority or training hospital and offer to be interviewed by medical students and answer questions about your fibromyalgia and any other dispositions you may have living with your FMS. I hope they will jump at the opportunity. If they do not, tell us and we will name and shame them.
I often hear fibromites say, “It is so good to be able to share my problems, pains and concerns with someone,” – here is the golden opportunity – and you can talk about yourself and your health and you could be helping to find cure. Some of those young doctors may decide to specialise in this field. Whatever they do they will have an inside knowledge of fibromyalgia and be able to recognise FMS albeit in their own surgery, in accident and emergency clinic, or a hospital ward.
If you can do this it would be a giant step for fibromyalgia and would encourage more research as the world hears about the pain we suffer. It really is up to you – Linda and I cannot do it alone.
Linda has asked me to thank everyone who has written to her like most families with young children she was struggling to get ready for Christmas with all the trimmings to delight her young son. Linda is making a great effort to reply to you as soon as she can but she currently not very well. Please give her a little time.
We are delighted with the support so far and hope details of these emails will encourage you to go further with raising awareness.
Jane wrote, “One minute you are pleased that there is someone out there that has fibro then you feel bad that someone must hurt like you do”.
Bambi sent an email to Linda saying, “You are my inspiration! I just read about you in an email I receive from Tenderpoints. I meant what I said.”
Bambi who lives in the States and suffers with fibromyalgia, rheumatoid arthritis, Lupus, chronic pain syndrome, and has undergone a number of operations, is taking “a variety of med’s and still going through the motions of trying to find what works best for me.” She writes about her journey through medications and diagnosis leading to the sad and frustrating times that so many FM sufferers go through.
Regardless of her pain she writes, “When I was reading about you, all I kept thinking was that I’ve found my mentor! You see, I am a 44 year old, mother of 2, wife of 22 yrs……. for too many years I have been battling the stigma’s of living with chronic pain. I won’t go into an entire boring full biography about myself! Let me just tell you briefly, I’m an ex-dancer…jazz, ballet, that kind of dancer! HA!…..most people assume with a name like ‘Bambi’, it’s another kind of dance I used to do! I’m a freelance artist, who on a good day is lucky enough to work on sketching, painting, or some kind of inspiration I may have. I have a positive outlook the majority of the time.
“I say it this way because I feel it’s important to allow yourself to have those days that are bad, let your body heal itself, rest, etc. We have earned the right to every now and then have a little ‘bitch’ session. I think it is healthy to vent! I also feel though it is our fault we have what we have, we have to learn to accept what we can’t help, (not give into it though!) It is not anyone else’s fault that we feel bad, so why should they have to suffer too. I try to keep a good sense of humor, a smile even when I hurt….I can be in pain but still be glad I have my family.
(Hi Bambi it is not your fault. It is now thought to be genetic and if you ask your parents and grandparents you may find some have suffered very bad arthritis, rheumatism or fibrositis. If we have the gene it only takes a trauma or stress for an A type personality – busy, super mum or workaholic – to trigger the fibromyalgia. I write this as a patient with no medical training, but this is what I have heard from medical experts. However I do agree you should not take your suffering out on other people and a positive outlook is so very important. Jeanne)
“Anyway, my point is that, through out this entire ‘journey’ of chronic pain, I figured there is someway I can help, so other people don’t have to go through what I have had to endure! I admire what you and your Doctor are doing and would love to do the same!….I know, I apologize, I could have said this at the beginning, in one sentence!”
Bambi signed her email with “peace, laughter & miracles”.
Linda told her, “You have to have a sense of humour to survive being fibromyalgic…. life is for living is what I say. I refuse to sit in a chair and rock for the next 50 years!! I am not into feeling sorry for myself at all. It is counter productive and I am with you on the positive attitude thing, you have got to have this or you will go under. So you sound like an ideal candidate for doing what I am doing, chatting to medical students on an informal basis and educating them about ourselves, our condition and the whole shebang we go through for a diagnosis, treatment, support and help. Think about it, you’d be fab!!”
Catherine from somewhere in New York who read Linda’s story in Tenderpoints (from Fibrohugs) thanked her so very much for what she is doing for all FMS patients around the world.
She wrote, “I see a rheumatologist at a teaching hospital here in upstate New York, and I think I shall print this for him. He always wants to learn and I wonder if I would ever have your strength. Even if I didn’t, your story may be just what I need.”
Catherine signs herself a partner in FMS/CFIDS.
Karen has had FMS for seven years and writes, “When I read about what your doing, I thought that this lady is doing exactly what I have been wanting to do for years now. And I go for treatment for the perfect place for it. That is Oklahoma University Research Hospital. We call it OU for short. But my thinking has always been that this is such a complex disease that you would have to be a teacher just to discuss it, because 15 minutes with your GP just doesn’t get it.
“And only someone with this disease can tell you in detail anything about it and it takes a long time to do that because there is so much to tell. I would love to share my knowledge with some soon to be Doctors. This is where I know you will understand that we know a lot more than they do about FMS because we were forced to learn about what was wrong with us because nobody could tell us. All I ever heard was, ‘I am sorry for you but I can’t help you and good luck. Hope you don’t end up in a wheel chair.’
“I have never written to anybody else that has this disease, but your story was the one that turned on the light. I hope to hear from you, God Bless You.”
Mary who works in the medical profession in the States said she was given news of Linda’s story by a holistic nurse who has been helping her with pain control.
Diagnosed with fibromyalgia after many years of ‘non-diagnoses’ she said the problem was not only an unawareness on the physicians part, but her own unwillingness to accept it because of the attitudes I have encountered for quite some time of the doctors who label FMS as a non-existent disorder.”
Mary suggests these doctors think fibromyalgia is something, “We give patients to pacify them when they need a diagnosis”. In other words – for all the hypochondriacs out there.
“It angers me to think about it now, because these physicians have labelled me as such and put me on anti-depressants. Now I hear behind my back from their nurses and assistants that they diagnose fibromyalgia but don’t believe it,” she said adding she was frustrated and disillusioned with medicine.
Linda suggests the physicians “desperately need educating into the severity of the condition you deal with 24/7. I could send you some information specifically for doctors to print off if you like? Maybe it would give them a kick up the butt? It couldn’t hurt to try eh?”
Joan from Canada said she could relate to Linda’s fibromyalgia and back problems. She suggests, “I have a specialist here in Toronto who insists fibro is related to disruption of the discs in the back and neck. Certainly the activity and especially horseback riding would contribute to your fibro. I have been on long term disability for 12 years now and everything she has directed me to do has been right. We do walk a very fine line in fibro. If we do too much we will relapse.
“I admire the work you are doing in educating young would-be doctors and students. It is something I have wanted to do for a long, long time. I just did not know quite how to get started.
“I felt such a pull in my heart when I read your bio, I just wanted to share with you what I believe has helped me. Maybe it will help you too! We are the same age. Too young to let life pass us by!” said Joan.
Gloria who I think is also from the States offered congratulations to Linda for stepping up and adds, “I, like you, have had fibromyalgia since about the 1980’s, maybe even longer. I was (and still am) very active, although I tire easily. The specialty doctor that I saw at that time discovered my “trigger points” but he did not have a name for the illness. Unfortunately, my regular GP was not the greatest. I had a terrible flare-up about 7 or 8 years ago. I went to my GP with a list of my symptoms. He looked at the list, looked at me and told me that “someone who writes a list like this is mental.” This was someone that I trusted my health with for over forty years. I quickly changed physicians. I started with an internist about a month later, gave the same list to him. He took x-rays and blood work, sat for an hour asking me questions and told me to return in three weeks. When I returned, he had all of the test results in hand. We talked some more and he mentioned “myalgia.” I asked him if he said fibromyalgia. He said, “No, do you think you have that?” I said I don’t know, but I had just heard of it. He tested the trigger points and diagnosed me that day with fibromyalgia. It has been a blessing to find a doctor that listens and is empathetic to the pain that FMS involves. I live with pain on a daily basis and some days are worse/better than others.”
This is just another story which shows just how important it is to educate the medical students and the young doctors who are willing to listen.
Jackie has such empathy with Linda she suggests, “I felt as if I were reading my life and medical condition on the page. I have written to the FFC here in the states but have gotten no reply as of yet. They have several centers here in the US but none are very close to me and you have to do your first visit in person, after that they do something either thru mail or something. But it’s too hard for me to travel, as you probably know. I think my fibro was partially caused by having rheumatic fever twice as a child. In my teens I had great pain, then they called ‘growing pains’.
“I like you was active even after diagnosis until I just could not do it anymore. It hurts so bad emotionally not to be able to do what I used to do.
“In the past my son in law said that my house was so clean you could eat off the floors. I am not able to do that anymore. Nor do the things I want to do. And I agree with you that a loss can cause a real fibro flare, because I lost my youngest grandson age 16 in June. The only way I can survive that is knowing that he is with God.
“Thank you so much for your article. Just having someone out there that I can ‘cry’ to means a lot. Now I have to go, my back is hurting so bad. Love. A sister in fibro.”
Brenda who I think is from California (emails give little away) wrote and said, “Thank you for your story particularly the ‘letter to normals’ that I have sent this on to friends and family as it sums up how I feel. I would like to help spread the word. What can I do to help?”
Although Brenda believes her GP will not be very helpful she told Linda, “I do have an appointment with my rheumatologist in January so will ask her if I can talk to med students.”
Brenda who labels FMS as ‘the beast’, tells Linda. “It is very difficult here to get anything prescribed for pain as people have a tendency to sue their doctor if they get addicted to the drug. I had to give my GP a letter promising him not to sue him so he would give me a script for valium so I could sleep at night as the flexeril was no longer working. Anyway I am taking 4mg at night and it has helped tremendously so far. But I am stuck with over the counter pain killers which on bad days just aren’t effective. I have bought a couple of books on fibromyagia recently and it seems there is more research money being invested as FMS is on the rise.”
Encouraging Brenda to take up the challenge Linda replied, “I started speaking to medical students about our much misunderstood condition as they need to do ‘practice consultations’ as part of their training and speak to people who have a chronic pain condition.”
Betty who wrote to Linda about specific enzyme based natural medication which had worked for her own for back pains, added, “Today’s doctors still have no answers as I have fibromyalgia and chronic fatigue plus the latest visit to the doctor has her looking at something called Polymyalgia. I think that is what she called it. The only thing that helps that is Prednisone and I refuse to go on steroids, so I’m hoping the blood tests come back negative for that condition. Take care… and keep the faith.”
Replying Linda thanked Betty and is humbled by her kind words. She added the message “reaffirms my faith in humanity and for that I thank you from the bottom of my heart”.
Having invited the world to keep in touch with us, it occurs to me that as fibromyalgia fighters we should perhaps come together as a VIRTUAL FIBROMYALGIA AWARENESS GROUP.
This would allow us all to enjoy the successes of others and help with the few disappointments, if any, of trying to raise awareness about this rotten invisible disability. We will protect your privacy and will not divulge or print anything other than your first name and maybe the country in which you live…unless you instruct us otherwise or include your own email in the text.
If there is enough support for the idea we thought that for membership of our elite VFAG you should have FMS, CFS/ME or be a carer for someone with these disabilities. We will do our best to print your stories – maybe not always in full and will reserve the right to edit anything which may be deemed as offensive or likely to have any legal connotation.
I would ask you to send me your emails with information your endeavours to raise awareness with medical students or doctors, or in any other way, highlighting any publicity you have managed to achieve, with copies to both Linda and I.
We hope you will share your triumphs with others and we will ‘move mountains’ and raise awareness. With enough support we will start our own weblog where you will be published and able to tell our friends.
We are depending on you. Please email me at firstname.lastname@example.org with your success stories.
Take care. Keep well
by Jeanne Hambleton ©
NFA Leader Against Pain-Advocate