A Child's life with Fibromyalgia
Hi! My name is Suzanne(Sue) and I have a child with juvenile fibromyalgia. Jessica is now sixteen, but was first diagnosed at age twelve. We went through many years of eliminating many causes of her aches and pains before we were finally referred to a specialist at CHEO (Children's Hospital of Eastern Ontario). It didn't take very long for the doctors to diagnose her as she had many of the pain points( if not most of the major ones) associated with this disease. We were told that she would probably grow out of it, given a brief recommendation to watch her diet, get her into an intense exercise program, and sent home. For the next three to four years, we tried a naturopath/homeopath doctor to help her cleanse her system, joined a kickboxing club as a family and gathered information from friends, family and books. Our family doctor prescribed relafen, an anti-inflammatory, to help with the pain.
It hurts to see your child in so much pain. Some days, her pain was so bad she could barely crawl out of the bed to go to the bathroom. Jessie has missed a lot of school due to FM, and has had to do a lot of catching up. To help her overcome the many muscle strains in her arm due to writing, I contacted the school and made them aware of her situation. The school required a letter from her doctor stating the paramaters of her disease to have on file as she would have new teachers each semester. Because of this precaution, Jessie was allowed to photocopy a classmate's notes or have the classmate use carbon paper on days when her pain was greater.
Contrary to what we were told, Jessica is not growing out of it. She probably won't as she has three blood relatives with fibromyalgia, a few with MS and a few more with Lupus. In the past year, Jessie has been struggling with ever increasing severe headaches and muscle pain. Our family doctor, had her checked from top to bottom with bloodwork and catscans. We even had our optomotrist doing special tests to eliminate any other avenues. I finally asked our family doctor to send us to a FB specialist as it was looking like things were progressively getting worse. It was the FB specialist who told us that her headaches were due to the FB. Because someone with FB is to stay away from analgeasics as it has adverse effects on them, Jessie was caught in a vicious circle of pain relief medication and headaches. While we were waiting to get an appointment with the specialist, our family doctor prescribed a mild form of antidepressant to help her sleep and control the headaches. Because of the stress of this disease, Jessie has dealt with bouts of depression asking herself "Why Me". All we could do is be there for her.
Jessica is now in physiotherapy doing intense workouts to get her body back in shape and out of her sleep deprived patterns of waking up several times a night only to have a difficult time to fall back asleep. She is also seeing a psychologist to help her deal with her headaches by showing her how to identify the stressors that cause her headaches, and learning relaxation excersises to de-stress herself. She is feeling better these days.
It has been hard for her as she is a teenager with all the same wants and needs and feelings of angst associated with these years. But we both feel she is now on the right path with exercise, watching her diet and learning to deal with stress. Jessica hopes to join the army reserves this summer, as she really wants to attend the Royal Military College and serve her country in the armed forces. I hope that physio, psychology and our love will be able to help her attain her goal.
Sue, Jessica's Mom
Sherri Lynne's experience with the courts.
I was in a car accident in 1996. WIthin the year I was diagnosed with FM. It has absolutely ruined my life. I am no longer able to work as a CMA (Certified Management Accountant), have any quality or enjoyment of life.
In April 2004 my case finally went to trial. My lawyer always assured me all we had to prove was that I was worse after the accident than I was before. So we turned down in March 2004 an offer of $150,000. It wouldn't even cover two years of lost wages for a CMA let alone medical costs etc etc. Again my lawyer assuring me we had a wonderful case and would beat the formal offer. So we went to trial. It was an absolutely horrible experience. The judge would not allow my expert witnesses to even testify.
Judgement came back in June 2004. You can read it on-line at Alberta's legal site under Court of Queen's bench under Lynne vs Taylor. His judgement says it is "crystal" clear that FM can't be caused by a trauma.(So much for the privacy act, everyone has access to the judgement) So we got a very low judgement for a shoulder injury and $997.00 in lost wages and no future care costs. But that also means that because we didn't beat the formal offer I now have to pay my lawyer contingency, my court costs, the insurance companies costs. I actually end up in debt for the right to have taken it to trial, still unable to work, and still with an absolutely ruined life and no future at all.
And another really bad thing is is that there is now a precedent set that will affect every single case ever taken to trial where the victim is trying to establish that trauma can induce FM. So not only is my life ruined by the judgement it will also impact all other victims that try to sue.
Looking for information and informed people!
Recently I purchased Fibromyalgia & Chronic Pain Management, a Survival Manual. This book has been a life saver on the one hand, God bless the authors, but it has exposed to me to the fact that my doctors have no clue about fibromyalgia.
I recently had my thyroid removed. They are doing iodine radiation therapy and have taken me off the thyroid medication. I took the section in to my endocrinologist that explained the relationship between fibromyalgia and the endocrine system. He just dismissed it. I told him it could be a life threatening situation for me. He just told me that after this was over with we would deal with it. I didn't think the medication was working a month ago and had him do blood tests. He said everything was normal, and sent me dragging myself out the door. I have been off the medication now for a week and am waking up swollen everywhere, with more prevalent numbness all over my body, increased pain and disabling exhaustion. I am worried that with three more weeks to go without the cytomel, I may be in a life threatening situation before getting back on the medication. I would appreciate your advice, because I am not being taken seriously by my endocrinologist. I am frightened and feel so alone, I cannot find any information about my situation anywhere.
Thank you
Sheila
I work full-time again
My name is Suzanne. I was a ridiculously fit and active 27-year old Director
of Aquatics for the YWCA when in January of 1989 I awakened with what I
thought was the flu. I attempted to go to work, trying to shake it off, but
got no further than 2 blocks when the bone-numbing ache in my neck and
shoulders, back and chest made me have to lean on a signpost for about 15
minutes before I could summon the energy to walk back home. It was
terrifying. And it took 3 years to diagnose. I was convinced I had lost my
mind. Over 17 years, I have lost many of those things I loved, a marriage, a
house, my ability to drive and participate in any kind of sports, 2 jobs,
and the ability to ever feel truly rested. I have all the classic symptoms,
spinning thru the possiblities like a manic carousel. The good news is, that
I have learned (the hard way) with tremendous support how to manage a number
of the symptoms to the point where I work full-time again and even have some
semblance of a social life. I have a fabulous partner of 10 years who rides
the rollercoaster with me, without judgement.
The cognitive difficulties and physical symptoms wax and wane but it has
been some years since I was at the point where I couldn't function. I saw a
terriffic therapist off and on over 8 years who helped me accept my
limitations and grow in new ways, developing coping strategies for the tough
stuff. My family Doc is marvelous. I have had to fight for every bit of it,
and the irony I find in that still leaves me shaking my head, and I wonder
about those who cannot self-advocate.
You cannot muscle your way thru this disease. You must negotiate compromises
with it all the time. You must savor every sweet moment and try hard to let
the awful stuff not paralyze you or swallow your self-worth. You cannot do
it alone. You will have miserable times, but they can be minimized and
managed.
It's never going to be all bread and roses, but you are worth the effort it
takes to keep trying to live with it. Given enough time, your family and
spouse and friends and collegues will "get it" and be willing to help as you
ask/need them to. You didn't do anything to cause this and you cannot bear
it alone.
Respectfully,
Suzanne
Fibromyalgia since 1979
Fibromyalgia. To you this disease may be completely unknown. To myself and thousands of others, it reminds us of the daily pain and fatigue that we must endure. This disease has confused the medical community for some time, as there is still not much known about it. It has also come under fire as maybe not being a real disease. Which in turn has some of the medical community not believing their patients. This is the attitude we must change through research, new treatments, and public/medical awareness and compassion programs.
The best way I can try to explain this terrible disease is in the following statement. Imagine having the worst flu ever. All of your muscles are stiff, sore, and won't cooperate with your brain's commands. Your energy level is so low that it is a major task just to try and get to the bathroom. Now times this feeling by 10 and add day after day for years and you have Fibromyalgia. But wait, we are not that lucky, also, we must deal with non restorative sleep, and may other symptoms. These may include clumsiness, memory loss, sensitivity to light, sound and strong odours, poor hand grip, inability to remember common nouns, and numerous others.
I have tried to live with this disease for 25 years. Now at age 46, my life is still dominated by this disease. Every family event our outing, such as shopping is dictated by my pain and fatigue level. It's not easy disappointing your loved ones time after time.
I have always had a strong spirit, but d4ealing with disbelief from some people/doctors, chronic pain and fatigue can wear you down to your soul. One of my main concerns, which I know others have as well, is if at age 46 I am reduced to days at a time unable to walk from pain, what will the future hold for me? After all, years of pain, fatigue and depression can even make the strongest break.
So when you hear about people talking about Fibromyalgia, please, take the time to listen. We greatly need to be recognised and be heard. Mine is just one of many stories waiting to be heard.
CFS and FM for 27 years
I have experienced CFS and FM for 27 years, along with Multiple Chemical Sensitivities. The journey through it all has been a battle that I am constantly fighting, but only in God's strength. Every area of my life has been impacted heavily - loss of finances and home, loss of job and treasured relationships, loss of precious time with family - I could go on and on. But the hardest part for those of us experiencing these syndromes, other than the pain and other difficult symptoms, is the lack of acceptance, understanding, help and caring from the public, the medical community, and for some, from family.
There needs to be money for research, so we could help medically, and the medical community needs to be made aware and need to accept that CFS, FM, and MCS are REAL physical syndromes. Their acceptance and understanding would cut the battle we fight by a great percentage.
For those of us who are severely affected by chemicals, we need areas in hospitals and care centres free of heavy chemical cleaners and perfume products, for they increase or cause us severe symptoms that affect any or many systems in our bodies.
A Physician's story
Nearly 20 years ago a famous Canadian pain researcher. Dr. Ron Melzack of
Montreal gave a speech entitled "The tragedy of needless pain." Sadly,
despite a great deal of new scientific knowledge, this tragedy continues to
unfold.
The problem is, the wealth of new scientific knowledge regarding chronic
pain in general, and specific pain problems like fibromyalgia, is not being
transferred to health care providers. Old and outdated ideas continue to be
taught resulting in much frustration and needless pain, as well as
staggering costs to society in general and to individuals.
This campaign aims to increase the awareness of health care providers and
decision makers about numbers of patients, the cost to them and their
families and to society as a whole.
By providing information about current scientific data for use in research
and clinical treatment FM-CFS Canada aims to materially reduce the cost to
individuals and to society of chronic pain.
Ellen N. Thompson, MD, Ottawa
Juvenile Fibromyalgia
I always thought my daughter, Samantha, would be a perfect postergirl for Juvenile Fibromyalgia.
Samantha was always a healthy child, although chest colds just never quite went away without antibiotics. Then around 10 or 11, she started getting migraines. When she was in grade 8, she started developing some breathing problems, which one doctor, a specialist, just called "teenage girl sighing". Then, a couple of years ago, Samantha got the flu. It stayed and stayed and then she could hardly get up for school, and if she did, she felt dizzy in the shower and had to go back to bed. She missed a lot of school that year. After that, my beautiful, bright, lively daughter was never quite the same.
It took at least a year to get Sam diagnosed....a long year of tests for everything which came up negative. I am appalled at the lack of knowledge among so called professionals about this disease. We were looked at sideways, questioned about drug use and depression and seemed just short of being accused of Hypochondria and Munchausens by Proxy etc. It was only after I insisted that Samantha be tested for Chronic Fatigue Syndrome and 2 more doctors and 1 trip to Sick Kids Hospital that we finally got a straight answer...diagnosis Juvenile Fibromyalgia.
My daughter has had migraines for years now. Some have lasted up to 10 days straight. NO painlkillers work on her, so she has learned to deal with it. Not only has she to cope with the pains, tiredness, dizziness, etc, but the BRAIN FUZZ has turned an Honours student into a girl attending an Alternative School for two classes a week, INDEC, in Mississauga, and trying to slowly finish her highschool graduation. Last week she said she was in agony just trying to last out the morning seated in the hard school desks. A full day in school, let alone 5 days a week is almost impossible for her. MEANWHILE, she has been working, now full time....this helps keep her going when she would rather not get up for the pain.....recently she was made ASSISTANT MANAGER at the Silk and Satin store at Erin Mills, and she is not yet 18 years old! Samantha is determined to finish highschool and to go on to university and get a degree in Computer Science like her eldest sister.
As is obvious by now, I am EXTREMELY proud of my daughter. When she was 13 she became a professional model, although she has done very little work. She is 5'11' tall, blonde and gorgeous, extremely photogenic........NOT what people think of as someone having a disabling disease. More than one of her friends accused her of faking it, unfortunately.
If you ever need a face to put to the disease that says "I am a vibrant, smart, beautiful person who just happens to have Juveniile Fibromyalgia", I think Samantha would be glad to do it for free. She is a wonderful person and an inspiration to me. No matter what, she keeps on going and will never let this disease get her down. As Samantha says "If I have this til I die, I will never let it hold me back!".
Keep up the good work!, Goodness only knows, the professionals are hopeless in this area, especially with diagnosing children!
All the best,
Lesley
Hopeless to Hopeful
As I sit here typing up what to share, I'm at a loss for words. I don't do really well with a script yet I don't like sharing intimate pieces of my life with complete strangers. So, I'm deciding to take a deep breath and just dive right in - which may be why I have Fibromyalgia in the first place. I'm a perfectionist and I used to really care what people thought of me and I was a martyr and felt I had to be all things to all people.
Sometimes I wonder how long I've had fibro. I don't know if I can honestly answer that question. My mom can attest to the fact that as a teen I needed a lot more sleep than most teens need. When I was in university, I knew I'd get sick if I got less than 8 hours of sleep per night for a week. Of course I pushed my limits - I was in university so I went to the bar and hung out with my friends - oh and studied too! J Even if I got 7 hours of sleep per night during the week, I still got sick. I didn't understand but I accepted it. I've also had skin rashes for as long as I can remember. I can only use certain brands of laundry detergent and I can't wear acrylic or wool.
I was diagnosed early in 2003. I had undergone chronic stress for a long time. At that time I was attempting to deal with a marital separation (and eventual divorce) I didn't want, I had moved and started a new job for a different health region, and I was trying to finish my Masters. I had had muscle stiffness previously but I worked with physiotherapists and they showed me stretches I could do and I honestly felt better. My former husband had also been unemployed for a long time before he decided to leave so I had carried a lot of things on these not-very-broad shoulders of mine. I felt I had to do it all.
When I moved, my world was upside down. I started to put the pieces of my life back together and was really enjoying working out at Curves when one day I worked out and was sore for weeks afterward. I couldn't understand it. Working out had never hurt so much before. I'd had trouble maintaining workouts over the years due to exhaustion but this was PAIN! Then there was the tingling in my hands and feet and my loss of energy and stamina. At the time I lived in an apartment building on the 5th floor (and there was no elevator) and I would come home from work some days and just look up and up at the stairs and wonder how I would ever reach the top. Sheer determination and pride I think now are what got me through. Not exactly the healthiest for my body but sometimes we do strange things to cope.
Fortunately, I had a very supportive young doctor. She knew something wasn't right - even though my blood tests and x-rays came back normal. I had a barium enema (to help diagnose my irritable bowel) and she referred me to a rheumatologist. Finally in February 2003, I had a diagnosis of Fibromyalgia. Fibro-what? I had SO much to learn.
In the meantime, God must have felt I didn't have enough adventure in my life because the health boundaries changed. I had a choice where I wanted to move to. I chose a small community close to my parents. (I soon discovered it was local on my cell phone too.J) So I bought and moved into a condo and moved my office into the hospital there.
But before the move happened, I decided to do my practicum for my Masters with the ME/FM (Myalgic Encephalomyelitis [Chronic Fatigue]/Fibromyalgia) Society. Finally I had a chance to learn about my illness and meet other people who also had the illness. I didn't have to explain my brain fog or my fatigue or aches and pains. People there understood. I felt accepted. After my practicum ended, I was asked to be a board member and I still am a board member today.
Life settled into a little bit of a routine. However, I met a doctor in my new hometown who questioned my diagnosis. I remember feeling so powerless when this doctor told me I wasn't old enough to have Fibromyalgia… and how could I possibly have fibro when I hadn't been in a recent car accident? 'I'm quite a bit older than I look… and how dare anyone judge me?' I thought.
But then I found a very supportive doctor who has been wonderful. When my personal life nearly spun completely out of control and my body reacted accordingly, she made referrals here, there and everywhere.
Christmas 2003 was my low point I think. The divorce process had taken on a mind of its own, thanks to my former husband. I was trying to finish my last Masters course. Oh, and the health regions shifted so I had to move my office AGAIN. My body reacted. BIG TIME. My legs stopped working from time to time and my doctor sent me for a CT scan and I ended up having a Neurology consult. The thought was that I was to have an MRI later in the spring. Maybe I had MS?! Could my stress stop for one minute?
This past year or so - starting with January 2004 - has brought a lot of peace. The divorce was finally settled in February. I went traveling with family - to the States and to Europe! My stress decreased and as a result my legs started working again and the MS opinion was put to the wayside. The pieces of my life started coming together. I've started working out at Curves again and most days my body doesn't talk too much.
So, how do I cope? How am I able to work full-time in a job where I travel extensively? How can I maintain my board involvement with the ME/FM Society? Tough questions that sometimes I don't know the answers to...
As well as being thankful everyday for all of my blessings and everyone's prayers and all of my "angels", my faith has been instrumental in my healing process. I was already grieving so much, grieving my former "healthier" self was just part of the deal. I have had SO much support from my family and friends that I've run out of ways to say thank you. God keeps sending special people into my life and I am very grateful for that.
How else do I cope? I made reference to my "healthier" self. I honestly think I'm the healthiest I've ever been. I'm in tune with my inner emotions and I let myself feel them. Most of the time I know what works for me and what doesn't. I try to listen very carefully to my body. If I'm worn out, I don't push myself. On weekends I try to let myself rest and sleep. I try to be the best I can be. Nobody's perfect though and there are days when sheer determination still is the only thing that gets me through. If I'm not feeling much like myself, I use humor to help me through. I have made a conscious choice to find the positive and hopeful in any situation.
Over the last year I weaned myself off my anti-inflammatory (Voltaren). I didn't find it worked very well anyway. I take Dicetel for my irritable bowel and Tylenol Extra Strength for the pain. I still need to take Elavil to help me sleep. I try to have massages regularly, I do stretches a minimum of twice a day and try to eat healthy and do something active everyday. But I still find unsettled weather and PMS-week make my pain worse.
Most of all, I have learned not to be so tough on myself. Never again will I be a martyr and think I need to be all things to all people. Nobody's perfect. Forgiveness and reconciliation have worked in other areas of my life, freeing me from a lot of pain and anger. Of course the toughest person to forgive is me… I've always been very scholarly and one of the things that I'm still getting used to is the fact that I can't spell sometimes (I can't live without my spell-checker), I miss words and, my "favorite", coming out with the wrong words in conversation. But aside from the occasional strange look, nobody really notices. I used to be so self-conscious. Now I really don't care. This is me - take it or leave it. I have been upfront with my work colleagues and most of the time they don't even notice that I have Fibromyalgia. They've accepted that this is the "Stephanie Package". If they want me, they get all of me, Fibromyalgia and all. J Those people who mean a lot to me have also accepted me for me. When life sucks these people are there to pick me up, dust me off and have faith in me when I have trouble believing in myself. They love me for who I am - with my fibro or whatever else is challenging me any particular day - and they help me determine who I am and encourage me to live my best life despite any obstacles that may come my way.
Lastly, I just do what I can do. And I think this has been the hardest lesson to learn. Setting limits when I was used to go, go, go has sometimes seemed impossible. But nothing is impossible. Some days I still push too hard and I pay the price. Physical pain is horrible. But as I relax and deal with the pain I remember, there are only 24 hours in a day. If something doesn't get done, is anyone going to miss it? One of my brothers has a motto - is it going to matter in 5 years? It's not going to matter that my house is clean but it is going to matter that I spent time with someone who needed me. If I can do anything it is to share my experiences with others - sharing their pain and rejoicing in their blessings. I try not to worry about the little things - but at the same time, I realize that the little things are the true blessings.
It's ironic that I have a Masters degree in Health Promotion and I'm divorced and have Fibromyalgia. Life's funny sometimes. It doesn't always turn out the way we plan or expect. I know that Someone else is in charge and He doesn't give us any more than we can handle with His help. He must know that we're strong people… J Sometimes we have to take the words of Joseph Campbell to heart (and thanks to Oprah for introducing me to these words): "We must be willing to get rid of the life we've planned, so as to have the life that is waiting for us."
A Story of Loss, Acceptance
Well, where should I begin? The CFS/ME has resulted in a breakup of my marriage, loss of friends, family members becoming distant, impossible long-term relationships and the culmination of work and forced early retirement. All this has happened to say the least, in my mid thirty's.
The CFS/ME as a chronic disease has exposed me to a lot of difficult situations, which a normal person would simply not experience. I experience frustration as I am limited by what you can do, as my mind has lots of things to do but my body is unable to participate. I am forever undergoing embarrassment, forgetfulness, and awkwardness in not being able to select the proper responses to questions. Many times without notice chronic exhaustion overwhelms me resulting in a complete loss of energy to the extent that even my words are slow in forming and relying on adrenaline just to finish a task at hand. For example, while grocery shopping and on the way to pay, I am often too tired to go through the process of payment and delivery so I leave the groceries in cart and leave.
Some days I am so severely exhausted that I am unable to do the most basic things such as get dressed, brush your teeth, prepare meals and take a shower. On days like these all sensory activities such as music, telephone, talking and all smells become very irritable. Also, I get shivers and it is impossible to warm myself up. In addition, I become sensitive to light and feel nauseous, and completely confined to my dwelling.
Added to the physical effects of severe exhaustion are different levels of pain ranging from excruciating to mild as it relates the different muscles such as throat, back, legs, arms, and hip, fingers, shoulders which is experienced on a continual basis. Emotionally, on days like these I am depressed and in no state of mind to socialize. I only want to become invisible and escape from the reality that is my condition.
As this chronic exhaustion is part of me, it is a burden I must bear. It has changed my life in that people I meet perceive me as being lazy as I am not working at my age and they reply it must be nice. As a result I feel undignified, angry, embarrassed, and belittled, as they don't understand my condition. This question is something to which I dread answering as I feel I am capable of doing so much more than I do and some cases feel eighty-year olds have more energy.
In order for me to cope with my condition, I undertake various activities according to how I feel both physically and mentally that day. This chronic illness is in short, a living hell. My life is controlled by this debilitating disease as I am forced to limit what I may do at certain times and therefore I am unable to place high expectations, as in planning almost anything in the future. For me to consider going on a trip with great anticipation would only result in false expectation and a setback as ninety-nine percent of the time I am too chronically exhausted when it is time to go.
On a good note, I do not take myself too seriously as I sometimes laugh at the unpredictable things that happen. I try to take pleasure in the little things I do such as reading, painting, cooking, sewing and swimming. I get tremendous satisfaction from my dog Shaggy who accepts me unconditionally for who I am. However, I do get by with a little help from my friends. In conclusion, one word to sum up CFS/ME is chaos. Trying to make logic out of chaos is like mission impossible that is, it doesn't happen. Every day I battle with this monster in one way or another. I often ask, why me?
No longer be a Champion at my martial art class
I would like to introduce myself to people suffering from Fibromyalgia and Chronic Fatigue Syndrome and to researchers to explain and make aware of the enormous impact this chronic disease has affected to my life.
I am a 49 years of age, a mother and young grandmother who has worked hard all her life to achieve a successful career to support my family. It took integrity, commitment, perseverance and determination to complete all the courses during the past 30 years to acquire experience to achieve an inspiring career in Project Management. Today, May 2003, I am using Project Management to manage my chronic disease called Fibromyalgia and Chronic Fatigue Syndrome.
This chronic diseased has had an impacted my life in every possible area. My whole life has changed dramatically. I am presently on long-term disability because I am unable to work. My past life was filled with an inspiring career, art, education, exercise and a simple love of life!
I can no longer be a Champion at my martial art class nor perform high impact aerobics, cycle along the Rideau Canal, skate, cross-country ski or swim. I miss taking long walks in the woods. My biggest challenge today is controlling my unrestful sleep cycle without suffering from widespread pain in my muscles and soft tissues. Fighting off depression, suicidal thoughts and anxiety are also symptoms which I battle with every day. Reading a book with enthusiasm is no longer possible. Inspiration for creating my art work is not possible. Concentration and memory loss are also symptoms of this disease. A simple thing for me in the past like taking a shower and getting dressed today are very difficult tasks for me because of the extreme fatigue and pain which I experience. I used to be a good cook but now I can no longer cook nor take care of my housekeeping because of the pain. I can only walk for 10 minutes a day with a cane. However, lately this does not seem to work out for me anymore. So I have resigned myself and adapted my life by using a motorised scooter so that I can get fresh air! I have been isolated with this chronic disease for one year. This scooter will be my tool of freedom so that I will be able to see and talk to people. This disease has thought me to never take for granted the little things life has to offer.
It took numerous trips to specialists and doctors to find the correct combination of medications to help with my sleep disorder, depression, anxiety and extreme pain throughout my body. They also performed many tests such as numerous blood test, MRI, CT Scans, and x-rays. There is no cure for Fibromyalgia and nor surgery that can be performed for this disease. It took me a year to figure out how to manage and to try to cope with this disease.
I am sharing my story with others in the hopes to making aware of the impact of Fibromyalgia and Chronic Fatigue Syndrome has had on my life. I pray and hope that researchers will find a cure for this devastating and debilitating disease.
A Young Adult with a Future
10 years ago, my daughter had to quit Carleton University in her second of Music due to Chronic Fatigue syndrome. Little was done for people afflicted with this horrible illness at that time. Much research has been
done in the past 10 years but still little is done for people like her as no cure or treatment exists for this devastating illness. She now has
FM as well as Multiple Chemical Sensitivities and her health is deteriorating even worse this winter and she is in constant pain. I don't know how she
keeps going & stays so optimistic! She has two pre-school children.
From my family, thanks from the bottom of our hearts for all the work you're putting into this awareness event.
Attended an 8-week course on Fibromyalgia
My name is Rochelle and I worked for 21 years with a national Canadian
Public Relations/ Community service organization, beginning as a local area
manager, transferring twice to new provinces and finally to a national
office in Toronto, where I progressed to a senior executive position for 8
years. During the period 1994 - 2000 the company downsized in senior
management from 9 people to 2, and in addition, there were unethical,
insular and oppressive tactics by people that I reported to. My work load
was incomprehensible, with my work weeks consisting of 6-6 1/2 days, and
averaging at least 80 - 90 hours per week. Despite my high energy and type
"A" personality traits, and expressions of concern to senior management
regarding work conditions and indications of health issues beginning from
the heavy workload, including insomnia, chronic pain in my neck and
shoulders, dizziness, exhaustion, nightmares, emotional sensitivity, no
concern was given, and there was no support to ease my workload.
My general family Doctor prescribed an antidepressant, physiotherapy, blood and
other tests, for over two years, and treated me for premenopausal symptoms
(incorrect diagnosis). The prescribed treatments did not improve my
symptoms and my cognitive abilities began to be affected with more and more
difficulty focusing for long periods of time, I was increasingly emotionally
sensitive, slept less and less, and there was also short-term memory loss.
As my conditions worsened, I feared that I was losing my mind, as the
Doctors could not find any specific cause for my chronic pain, and other
symptoms, other than work related stress.
After almost three years of worsening symptoms, ending up in severe
chronic pain which became debilitating, and anxiety, I ended up in hospital
being treated for chronic depression. At that time, I happened to speak to
my sister who has Fibromyalgia, and asked her what her symptoms were - they
described my condition completely. From there I asked my family Dr. for
testing for Fibromyalgia. My family Dr. had little knowledge, only knowing
that there was some form of testing that could be done for "tender points"
by a Rheumatologist. I tested positive for 18 out of the 18 tender points,
and was lucky to connect with other Doctors that I knew who treated my type
of condition. I then began a course of intense testing, including sleep
testing, over a period of several months.
I attended an 8-week course on Fibromyalgia, after a 10 month wait, and with treatment of Deep Muscle
message, Acupuncture, sleep and brain activity testing and with medication
for sleep disorders, depression, anxiety, Post-Traumatic stress, Chronic
pain, Fibromyalgia and Chronic Fatigue have started to understand my
condition, and am learning how to begin to manage it.
It was a relief to actually have a diagnosis, and it has been a difficult
task to educate myself on how to adapt my life from being a very active,
outgoing achiever with a high profile and executive position to days when I
cannot function to even cut up carrots for dinner. In addition, family and
friends have distanced themselves and my partner and I parted due to my
condition, which was devastating on top of everything else. I struggled
with my health, financial difficulties, needing help to do daily functions,
the dramatic change in my lifestyle and fear of being homeless, and the
isolation, during the testing, initial treatment and waiting for disability
insurance approval.
The chronic pain was with me 24 hours a day, and worsened with changes in
weather, stressful situations, and not enough rest. I have been very
fortunate to have found Doctors who are helping me with ongoing treatment
and support, and through education, determination and a positive attitude
and the support of a local support group, I am learning to cope with one day
at a time. My Doctors are extremely overloaded with their case loads, as the
number of people who need diagnosis and testing is reaching catastrophic
proportions, now including young children. Many are not able to even get an
appointment for an initial consultation and diagnosis for up to 12 months,
and Fibromyalgia clients all differ as their symptoms and other related
conditions complicate finding a common diagnosis and treatment.
Full-blown Fibromyalgia
I've been suffering with Fibromyalgia, and now its full blown, and I
can relate to all the stories I've read. Its exactly how i feel. This
never ending pain, has taken over my entire life. It dictates,
everything i do. I too, can no longer do my housework, or it's major,
just to shower, or comb my hair. My arms feel like limp noodles, and
they are getting weaker, all the time. I can't walk very far anymore,
without being exhausted. My family loves to go camping. And i go with
them, when i feel up to it, which isn't alot, of the time. I pray this
disease gets the attention it deserves. i also have 3 herniated discs in
my neck, d.d.d (degenerative disc disease) major depression and anxiety
disorders, is there anyone one who can help? I've been in chronic-pain
now for 5 yrs, and I see no end, in sight. It's a progressive disease,
I've progressed to full-blown Fibromyalgia, and it. Has spread all over
my body now. please help me, someone, at all?
May, god bless you, and yours today, and everyday. Peace.
A Fibromyalgia story since 2002
In January 2002, I had a hysterectomy. Three weeks after the surgery, I was unable to get out of bed due to pain radiating through my entire body. There is a burning sensation from shoulder to shoulder and feels as though someone is running a lighted match back and forth across my shoulders, all the time. In September of 2002, I was diagnosed with fibromyalgia, by a Rheumotologist in Windsor. He put me on Amitriptyline and told me I would have to live with the pain. Due to the Fibromyalgia I am extremely disabled and am continuing to debilitate. I am unable to figure things out. I have extreme difficulty with blurriness in my eyes each morning. My hands are so stiff and painful I am unable to hold cups or glasses as they fall through my hands to the floor. I have a hard time going down steps: sometimes it will take 5 to 10 minutes to go down five steps. I am unable to change my bed, due to pain and energy. Laundry is out of the question for me to handle, lifting, pulling or reaching is very painful and difficult. I am unable to turn my head more than one and one/half inches either way without severe pain. There are many days that I unable to shower or dress due to pain and fatigue. Most days I am in too much pain to even brush my teeth. I have started to have headaches over the last 5 months, where at times I feel as though my head is going to explode. Some mornings it takes me over an hour to just get out of bed and dressed, even after I do my therapeutic stretch exercises and take my pain medication. My fine motor skills are progressively deteriorating, which makes everything almost impossible. My daughter does my grocery shopping, as I do not have the energy or stamina due to pain and chronic fatigue. My legs will just give out at times and I have started to stumble and fall in the last 5 months, but have not broken any bones thus far. My sleep pattern is very erratic: I sleep 3 hours a night on average, which does not help matters, even with medication. I don't have one day that I am not in extreme pain: my pain ranges from 8-9 and decreases to 6-7 after I take my prescribed pain medication. I am open to try any type of treatment to improve my quality of life. I can't even type this letter due to pain: my daughter had to help me with it and type it for me. I only leave my home for appointments and then it takes everything I have. I have been accepted into the Pain Program in Toronto at the Mount Sinai Hospital. There is currently a year wait to enter the program. I am willing to do anything to feel better, but every day seems more hopeless than the day before.
I am only able to walk short distances, with frequent rest periods. Hot, humid, damp, cold, windy weather, any type of stress or anxiety causes the all over body pain to increase. I get chest pain from anxiety, which is a crushing type. I have depression, I cry easily and I get overwhelmed with everything and feel as though there is no hope. I isolate myself. I feel unrelenting pain and I just wish that for one day I would feel relatively normal. When I have a panic or anxiety attack I feel as though I am suffocating. I am seeing an Occupation Therapist to assist me in dealing with my panic attacks and anxiety issues. I go to the psychiatrist for depression. I take an antidepressant, but it does not seem to be effective as I still feel severely depressed everyday.
My family has been coming over to help with the cleaning, laundry, cooking, yard work, meal preparation and house repairs. My daughter sets up my medications for the week, does my finances because I turn numbers around and transpose letters. She also does the grocery shopping so I may remain in my home. Tasks as simple as planning a meal are too mentally, painful and physically taxing for me. I now use a cane for my unstable gait, a shower chair to keep me stable during showers. I take medications for my pain, sleep and depression, yet I am never out of pain, cannot sleep and remain depressed, anxious panicky and suicidal. There has been a progressive deterioration in my condition over the last year.
Mary Lou - First diagnosed 1997
Like alot of other mothers do, it wasn't uncommon to work, and go back
to school while raising your child or children. Well, that's exactly
what I was doing. In fact, I continued for two years to upgrade from a
college level of education to Business Administration and Computer
Courses that would place me back into the workforce, where I had left
off before having my daughter. I felt like a supermom, in great health
and in good shape, having danced ballet, tap and jazz since I was 9
years of age, and still dancing at 40 years of age. In the middle of
all this chaos, I awoke one morning feeling like I just couldn't get
going, physically and mentally. I didn't understand what was happening
to me. It felt like the blues, but it lay so heavily on me, all I
wanted to do was sleep. Obviously, I could not work like this. I had
to take sick leave. Within six months I was experiencing muscle pain
throughout my whole body. My GP had diagnosed me with Fibromyalgia. I
was one of the lucky ones! My GP was knowledgeable about FM and CFS. My
GP started with some antidepressants as he knew what I was going
through. But as the pain worsened, the illness was becoming complicated
for my GP and we searched for a specialist. Another lucky break!
Through an add in our towns paper, I found a support group for FM and
CFS. This is where I found a FM/CFS Specialist and from there I was
referred to all the right doctors for a complete diagnosis, a
Rheumatologist, Neurologist, Psychiatrist to help with clinical
depression, and from there I was able to get involved with groups of
people who were all going through the same thing. It sure helps when you
have support. I was involved in two support groups!
About 6 years had gone by and my symptoms were taking on a whole new
meaning. My CFS became more than chronic fatigue. It was like I was
starting a second stage of chronic fatigue. I was barely coping with the
first stage and here I was, back at the beginning again. After blood
tests it showed that my cortisol level was so low, it was very
dangerous. A year later, with new medication to help and still no
improvement. More tests and scans, now I've been diagnosed with a
hyperparathyroid condition. My life has taken on a whole new
meaning....sleep....sleep....and more sleep. So weak, I can hardly take
care of myself anymore. The pain has been so intense, I can't wait to
take my next pain meds. If I have a good night's sleep and two good
naps, that's a good day, what a life! I have given up everything in my
life that I was capable of doing that I enjoyed. This includes being
involved with the support group where I live and writing the newsletter
for FM-CFS Canada. Maybe someday, if the doctors can figure out my new
conditions and get me back on my feet, I would love to volunteer again.
Meanwhile, I spend my days laying my aching body down, while keeping my
faith in prayer!
Mary Lou
The F Word
I cannot tell you how many times, in the past 25 years, I have used that
bad word to describe Fibromyalgia. They have become interchangeable in my
life. From finding what was wrong, finding a doctor that would listen,
finding help to get out of bed everyday and trying to maintain my sanity
under horrific pain conditions as the medical community told me I was crazy!
Even my neighbour who works in the local pharmacy told all of our neighbours
that there was something mentally wrong with me and told them I was on
extreme psychological drugs! (and to this day this abuse continues on a
daily basis...oh what fine neighbours I have!) Yes after 25 years of
excruciating pain I do not have the time for idle chit chat or gossip as I
have to spend every waking or sub-waking moment trying to do daily tasks
that take weeks!
In between my bouts of insomnia, irritable bowels, chronic
fatigue, marital stressors, parental stressors, numbness, foot pain, weight
gain, muscle twitching, body aches, cramping, swelling, mental fatigue,
allergies, hot and cold flashes, headaches, light sensitivity, parts of my
body going to sleep, dizziness, mental fog (forgot how to spell dizziness),
dropping items, walking into walls and breaking toes constantly, staggering,
menopausal symptoms, crying over happy or sad moments(sometimes at the same
time), stomach pain, fainting like episodes, half my face numb, panic and
anxiety attacks, to name a few conditions, I must complete the role of a
mother, wife, supervisor, financial coordinator, and test subject, etc. Yes
it can be extremely overwhelming and on top of it all I am to avoid
stress....hahaha! No wonder we fibromyalgia patients seem crazy...we are
simply overwhelmed by trying to exist on a daily basis. Because of the pain
my temper is short, my patience is limited, my span of focus time is simply
non-existent and I am extremely mad, upset, angry and disturbed with the
medical community! I cannot find a doctor that will address any of these
symptoms without some form of torture during the past 25 years.
On good
days I keep searching for a cure or some clinical trial to help find a cure
or remission. As I live in Alberta I have not found a physician or
organization who can offer any real answers or assistance. They look at me,
listen, nod, and then run away after 2 minutes. I cannot explain any of my
symptoms in 2 minutes. I definitely understand the concept of suicide as
this is currently the only answer to these problems I have addressed.
Unfortunately this is not an option for me, as a mother, for I feel it is
better to have a disabled mother than not having one at all. Sometimes I
cannot take the attitudes my family deals me but I understand their
frustration because I was once the invincible one. I once could do anything
I wanted. I played all sorts of sports and excelled as an athlete. I ran
my own businesses and volunteered my time to many a project. I general
contracted building of a 4000 sq. ft home. I facilitated many a committee.
I had many, many friends. I enjoyed the luxury of travel after working
three jobs at the same time. I knew people from all over the world and I
enjoyed every minute of life! But now that is all gone and a very distant
memory and I am mad as hell at this disease!
All I have left to say is that
this disease picked the wrong person to fight with because I am mustering up
all the energy and resources that I can to beat it. I will do anything, try
anything, go anywhere, to every corner of this earth to find a cure so no
one else ever has to suffer in silence again! Why die when you can
experience hell on earth?
From a Wikipedia entry:
Some notable persons who are believed to have suffered from CFS are:
* Michelle Akers, soccer player - confirmed
* Brian Aldiss, author
* Susan Blackmore, parapsychologist, author
* Howard Bloom, evolutionary psychologist, author
* Cher, pop singer, actress
* Neil Codling, formerly of Suede
* Blake Edwards, writer and director of such movies as Breakfast at Tiffany's, 10, and The Pink Panther
* John Fahey, folk guitarist
* Flea, musician
* Clare Francis, international yachtswoman and author
* Susan Harris, television writer and producer, who incorporated her experiences into the fifth season of The Golden Girls.
* Laura Hillenbrand, confirmed - author of the book Seabiscuit, for the film Seabiscuit
* Kelly Holmes, athlete
* Blair Hornstine, New Jersey student who sued her school district when it wanted her to share valedictorian honors with a classmate
* Andy Hunt, former British soccer player
* Keith Jarrett, jazz pianist - confirmed
* Katharine, Duchess of Kent
* Henry Percy, 11th Duke of Northumberland
* Alastair Lynch, Australian rules footballer
* Stuart Murdoch, of the band Belle & Sebastian
* Barry Sheen, motorcyclist
* Martin Speight, artist and former cricket player, Sussex CCC and Durham CCC.
* Ali Smith,writer
* Frank Iero, musician, My Chemical Romance.
* Anna Hemmings, Britain’s leading female marathon canoeist.
* Andrew Oldcorn, golfer.
* Joanna Griggs, Commonwealth swimmer (Australian)
* Peter Marshall (squash player), Former British No1 Squash Player - Condition described in his biography, 'Shattered-A Champion's Fight Against A Mystery Illness'
