Linda Macdonald's Story
It is now the year 2006, and I have had CFS/FM for 20 years. In 1986,
just before this started, I was a high
energy, motivated, intelligent,
socially- and politically-active 23 year old. Though I had been experiencing
chronic back pain since an injury in 1982, with subsequent IBS by 1984, I
was still an avid cyclist who cycled 20 km. most days to University, where I
was working on two academic degrees, physiotherapy and linguistics.
I planned first to become a physical therapist, and through that, to be an
international aid worker for a few years. With my interest and talent in
languages, I also began to become fluent in several world languages which I
hoped to use for travel and work. Once I returned from international
development work, I expected to save some money and begin work on a
doctorate, either in acoustic phonetics or acupuncture. I knew it was also
possible that I could become a professional-level folk singer, if the
opportunities were right.
Stage One
"I was still an avid cyclist who cycled 20 km. most days to University, where I was working on two academic degrees"
However, while completing University courses on scholarship in Germany in 1986, I got a fever, along with a weird bug bite or rash on my leg. Fever and brain fog alternated with itching of the bumps over the next few weeks. Then there was a period of intermittent sore throats, every six weeks for about six months. I returned to Canada and finished my physiotherapy degree. Over the next 3 years I experienced, especially in the morning, weird foggy-brained periods, and pain and stiffness, especially in the morning, and some of the other typical symptoms. I knew something was wrong, and it affected my studies a little, but I found myself rationalizing it away, since I was young, and it hadn’t seriously slowed me down yet.
Stage Two
In 1989-90, as a student on my second scholarship to Germany, the pain worsened to the point where I had more trouble studying. Other unusual things happened. I was actually hospitalized once for low blood pressure after a thumb infection and crying a lot due to a death back home. I had an unusual number of bad colds/flu’s, yeast infections and allergies. Finally, I got a fever retrieving a ball from questionably safe river water. The subsequent pneumonia left me fatigued for over a year. Back in Canada in 1990, I could only work as a physiotherapist part-time, due to pain and fatigue. While working at a hospital, I got a strange rash and recurrent arthritic pain in my whole body. For months on end, I’d wake up with unquenchable thirst. I’d wake with muscle and internal organ pain that lasted for hours and ruined my sleep. Muscle stiffness and spasms went on day and night. I struggled on but I was on disability from work by 1993.The Mean Time, Emphasis on “Mean”.
In the meantime, I had gone from confident and vibrant to defensive, confused and ashamed to talk to doctors, because I was now chronically ill, yet many specialists along the way had implied I was malingering, or “just depressed”, out of ignorance of the condition. It probably made it worse that I had been a physical therapist, since I think I expected myself to be able to find the answer if they couldn’t."I had gone from confident and vibrant to defensive, confused and ashamed to talk to doctors"
Many doctors did not (do not!) believe CFS and FM exists, nor were many doctors aware that the lab results were likely to come back normal with this diagnosis, since there were no tests for CFS, only tests to show that it was not something else. There are some more direct tests now, but CFS/FM is still difficult and time-consuming to diagnose by testing alone.
I had/have a supportive family doctor who reassured me I was not crazy, but still at times I doubted it myself. Social pressure is hardest to fight when you are sick. Could this somehow be my fault? How could I be this sick and have no identifiable reason for it? I had never malingered or shirked work in my life! On the contrary, I remain to this day a super-motivated, life-loving, people-loving human. The meantime was a very difficult time.
Self-doubt, Early Attempts at Diagnosis and Treatment. Weight Gain and Bad Drug Reactions.
"He said, “Just exercise more”.....Believe me, if I could have exercised more, I would not have been in his office!!"
This self-doubt was relived many times, because I was forced to keep undergoing lab tests and seeing “normal results”! Insurance companies want diagnostic proof, before they agree to give you benefits. There is no unequivocal diagnostic proof with CFS even now, nearly 20 years after my first symptoms. (There isn’t any for MS either.) A sharp rheumatologist I went to at least diagnosed Fibromyalgia based on my symptoms.I tried the prescribed drugs without relief, and incurred a weight gain of over 20 pounds in 1 month! When I reported this to the specialist, he said, “Just exercise more”. He was talking to someone who used a bicycle for transportation still, despite terrible pain. Believe me, if I could have exercised more, I would not have been in his office!! I tried numerous other medications, but none gave me relief. Sometimes the side effects or paradoxical reactions were as bad as the CFS. Many with CFS are extremely reactive to even low doses of medications they could easily have tolerated, pre-CFS.
“It’s Back Pain, Really.” Or: Sitting Ducks for Everyone’s Quack Treatments
I preferred to let friends and family believe my problem was about back pain,
I preferred to let friends and family believe my problem was about back pain, because I did also have the old back injury that was mixed into the equation, and most people can kind-of relate to that. I sometimes even convinced myself of that, because that was often the predominant area of pain. I am now quite sure that was because I (misguidedly) continued to walk and cycle.I didn’t want to advertise the other problems, because I feared more demoralizing labels. Some people I told were helpful and supportive, but I was tired of the superior attitude of many. “You are still sick? Say, have you tried….?” The lay public seems to feel called upon to prescribe some improbable or quack cure to people with CFS or FM. They would never do that to people with illnesses which are socially accepted as valid or believable. And yet this response contributes to the erosion of self esteem and self confidence which is predictable in CFS and FM.
People with CFS are not just suffering from a case of needing to “buck up”, nor are they prime candidates for every vaguely applicable wonder-cure out there. (Oh, don’t worry, we’ve tried them all, out of sheer desperation.) Therefore, well-meaning public, take note: there is a good reason why the person with CFS/FM is still suffering after all these years, and that is because these wonder-cures don’t work.
"No one would dare treat an AIDS or MS sufferer the way most CFS sufferers get treated publicly and socially. No society would deny them bon fide basic physiology research.."
No one would dare treat an AIDS or MS sufferer the way most CFS sufferers get treated publicly and socially. No society would deny them bon fide basic physiology research and offer in its stead untested, possibly harmful, expensive self-experimentation. Some alternative therapies work for some of us, but we are also sitting ducks for quackery. These are invisible illnesses, as are early-stage MS, rheumatoid arthritis, and many cancers. The effects are still real and devastating to the patient and family/friends.
The result of cruel disbelief and ignorant judgment is a prevalent lack of access to help and support for these very ill patients. They fall through the cracks trying to access services which are their medical and social right. Many of them basically hide the truth when in public situations, due to the inappropriate responses to their illness. Privacy is one thing, but which other physical illnesses do people feel they must hide from others, for fear of victimization, denial of treatment or benefits, derisive comments, or bogus lay prescriptions?
Duped by Pervasive Societal Disbelief and New-age Babble About Thinking Oneself Back to Wellness.
Despite monumental efforts to work and “be well”, I have already spent 11 of the past 16 years on disability because of CFS/FM. Sometimes I was my own worst enemy, because I tried too hard to keep going with a half-normal life, unwilling to accept the fact that trying harder just makes CFS worse. That was, of course, encouraged by the insurance company which unceremoniously dumped me off of LTD. It is also encouraged by society."Sometimes I was my own worst enemy, because I tried too hard to keep going with a half-normal life, unwilling to accept the fact that trying harder just makes CFS worse. "
When I was able to work, it was only ever part time, and less hours by the year. I changed careers (not just jobs) 4 times to try to keep working, running from painful muscle spasm, nausea, and other terrible symptoms! Try doing anything when you have brain fog impairing your concentration and memory. I tried to stay positive, though my career dreams (remember them?) were getting shelved by the year. It was hard, because to outsiders I looked normal.
I had been in the 95th percentile of the populace academically (or higher) and so once ill, I probably managed quite literally to look like an average-functioning person, with half of my brain and body function gone. I think my previous potential masked my illness, or I wouldn’t mention it, here. I think that is one of the factors that makes this illness so distinctive. Anyone involved with more than a couple of CFS patients will notice that this illness descends on intellectually extraordinary people, mostly women.
That aspect of my genetic past didn’t save me from the amount of suffering involved. Eventually I caved in completely. With unpredictable part time wages, constant medical bills and ever-diminishing ability to perform even part-time work, being so ill was a losing battle. I became unable to work because of pain and insomnia three different times, spent several years trying to recover, never really getting well enough to work but forced by financial circumstances to try again or apply for welfare.
"Eventually I caved in completely. With unpredictable part time wages, constant medical bills and ever-diminishing ability to perform even part-time work, being so ill was a losing battle."
Why didn’t I apply for social assistance? Because they want proof you are sick, and if you don’t look sick, you will be harangued to return to work, which I would have loved to do if I could have sustained it. I also risked being mislabelled as mentally ill by ignorant biased, misogynistic doctors, and forced to take medications that would have killed me. This misdiagnosis of CFS or FM as psychiatric, with involuntary incarceration or forced use of psychiatric meds, is an injustice which many CFS and FM patients have endured to date. There are many legal battles to rectify this – see the case of NFLD nurse Judith Day, for instance.
Back to my own case, I also didn’t want to apply for welfare besides I was ashamed. I felt like a complete failure, since I had internalized the social message that there was just something wrong with me sociologically, and somehow it was my fault I could not get better. It was crazy, alright: socially re-enforced self-victimization. Each time I returned to a lower paying job with less resilience and less of a safety net for when my health failed.
Medico-legal, LTD, Work and Social Problems.
"I felt like a complete failure, since I'd had internalized the social message there was just something wrong with me.. and somehow it was my fault I could not get better. It was crazy, alright: "
The financial duress and personal losses which this chronic illness causes will be familiar to many of you who have CFS/FM. Amazingly, for the first several years of this ordeal, some who knew me did not realize what I was going through because I “looked normal”, and they would only see me when I had worked out hours of stiffness and was finally able to move. Furthermore, you can’t see pain, nausea, brain fog, hypoglycemia, or insomnia etc.That invisibility is a double-edged sword. Many who met me in the 1990’s have literally only ever known the half-life version of me. Many of them, sadly, abandoned me when I crashed and became bedridden in 2001. I had not realized except in retrospect that some of the things they rejected me for were actually CFS-induced cognitive problems like ADD, memory loss, and brain fog. The grief of this rejection by people I really loved took a long time to transcend, and was made more difficult to cope with, being so sick at the same time.
Love and Support
I have changed a lot since 2001, perhaps the only real blessing in this curse. The friends whose non-judgmental
love I have basked in tend to be
those who knew me before I got so sick, or else those who have an
extraordinary capacity for love, empathy and acceptance of humans based on
their deeper essence not just on the everyday things that are so hard to
predict or control with CFS. My parents have also been a great daily
support, physically and as companions for me. So One Learns a Lot With CFS/FM. However, the isolation and mistreatment by ignorant people are big issues in CFS and FM, and we can use the help of every member of society to turn the situation into one of enlightenment.
Remember my Career Goals?
"I am not always at peace with what has happened."
With what came in between, I was looking at permanent disability by the year 2000. Still, with pain that bad, I never dreamed the symptoms could get worse. Desperate not to give in to going on social assistance, and against the wall financially, I started a Master’s Degree (as part-time as I could get away with) in Sept 2000, and foolishly tried strong pain medications to try to cope. Don’t ever let anyone coerce, embarrass or misinform you into doing things that you suspect will make you sicker in the long run, because you may never recover.My well-meaning family doctor had encouraged me to make this decision. I think she just didn’t want to give up on someone that young and full of potential. She didn’t see the toll each year of sickness and pain was taking on me, while I tried so hard to live a literally half normal life, scraping the poverty line. Did anyone think, back then, hey, this person was worth a $100,000 a year or more, what has happened, here? Surely that should have been a clue that there was something wrong with this picture. But no one said anything, and I just kept struggling and sliding downward medically and financially.
"Don’t ever let anyone coerce, embarrass or misinform you into doing things that you suspect will make you sicker in the long run, because you may never recover."
Presumably as a result of pushing myself to study, the CFS itself, and the paradoxical reactions to medications which are a hallmark of CFS, in February 2001, my physiology crashed completely. It was like a flash-over in a fire. I endured horror-storms of pain, muscle spasms, amnesia, confusion, and insomnia, day and night. I could not concentrate long enough to finish a sentence. I could not comprehend a parking sign or read a bank statement. I could not move or look down without shock-like pains through my spine and into my legs. I suffered panic attacks, heart palpitations, and depression. Normal light and noise and body signals (e.g. hunger) all registered as pain. Mental effort made me labile and confused, and caused severe shocks down my spine into my legs, and profound fatigue after. That included thinking, remembering, responding to everyday speech coherently, reading, and comprehending television, radio or music. Looking down or setting foot on the floor caused the same shocks, as did trying to walk on a sidewalk (or any hard surface). (People with MS get this sort of thing when their nervous system is starting to deteriorate due to the sclerotic plaques impairing nerve transmission.)Naturally, I had a terrible fear of what was happening to me. I was checked for MS, brain cancer, Lupus, and many other severe and grave illnesses. Another year of specialists and it was concluded by default that this was part of the CFS/FM: I guess by now it was the hypothalamic-adrenal-pituitary hormonal axis that was malfunctioning. I am of the variety of CFS patient so reactive to medications, that almost none are available to me. I get amplification of my symptoms and worsening of my overall condition if I take them. So I had to suffer the horror-symptoms without medications. Worse, people tend to think you are being difficult if you refuse medications, so here I was deprived of the life-line of symptomatic relief, and having some specialists imply that I was uncooperative.
"It has taken years to go from bed-ridden to the point where I can write a little once in a while...I still pay dearly for anything I do, with pain, stiffness, insomnia, debilitating fatigue and severe problems concentrating"
It has taken years to go from bed-ridden to the point where I can write a little once in a while, receive a visitor (one-on-one) a few times a year, do some simple daily household tasks like heat up leftovers in a microwave or make myself a cup of tea, and do a few minutes here and there of the simplest pastimes. I still pay dearly for anything I do, with pain, stiffness, insomnia, debilitating fatigue and severe problems concentrating. I am weak and have little physical, mental or emotional stamina.
I am not always at peace with what has happened. I have lost my life, as I knew it. Work or study is out of the question still, and maybe forever. Most times I cannot even read a page or go for a short walk. This is medical house arrest. I have to weigh out which simple activities combined will put me over my depleted energetic quota for the day, and how to spread it over the week, the month… the year.
I miss almost all family gatherings due to this. Try spending your fourth Christmas in a row lying in bed alone! Your beloved nieces and nephews grow up in the same city as you, and you rarely see them due to your illness. You miss seeing your friends and can’t visit them together with their kids, whom you otherwise would have played with and been like an Aunt to.
The situation often makes me angry, frustrated or dejected, though I get sicker if I waste energy on those emotions. I just try to budget for a little quality time with friends and family, as I am able. I will continue to do all that I can to attain a better quality of life. I guess that is all one can do.
"Try spending your fourth Christmas in a row lying in bed alone!"
We need to find a cure for this. In Canada, it ruins the lives of more people than MS, AIDS, lung cancer or breast cancer and most people have not heard of it. Unlike for other severe disabling illnesses, there is no national society with paid office staff, advocating for us, fund-raising, or educating the public. Any healthy members of society feel like changing that fact?
Treatments
"My conclusion is congruent with the current medical ones: There is no cure. "
Since I acquired CFS/FM, I have given least 30 different types of treatment, both alternative and standard western, a serious try. A list of therapies I have tried and how much they helped is available from me. (keybard13@hotmail.com.) My conclusion is congruent with the current medical ones: There is no cure.
However, you may find something to help some of your symptoms. Everyone has to find her own way. No two patients are alike. There are times to avoid medication completely, and some patients have particular trouble with medication and chemical reactivity so they are forced to avoid medications. You usually have to combine several treatments types to get some benefit. Almost every type of treatment costs a lot. Almost none are covered by health care plans.
The best treatment protocols include a multifaceted approach which includes a high protein, high (yes, high) salt, low glycemic index diet, and avoidance of triggers and allergens. Beware the lingering pseudo-science about using cognitive behaviour therapy (CBT) and some vague exercise prescription to “cure” CFS. Exercise must be undertaken with the utmost caution; scientific research from the University of the Pacific specific to
"Sometimes there are mild improvements in my CFS, and I don’t know why. They may feel like one has won the jackpot after years of being bankrupt, but with CFS, the last thing one does is go on a spending spree to celebrate."
CFS, suggests that anaerobic exercise matched to the level of debility can help prevent muscle wasting. In general, most CFS patients end up spending large amounts of money on ineffective and highly speculative treatments, in their quest for health. Even in Canada, with its universal health care, testing and palliative treatments relevant to CFS are typically not available and one will be paying from one’s pocket.The best hope for keeping symptoms at bay is careful daily energy management, and a lot of restraint. I currently follow the strictest dietary guidelines for five different types of diet. I have had to give up all of my once-cherished exercise (but can slowly walk quarter of a block a few times a month) keeping within a restricted heart rate for all activities, (around 60% of the target for my age, I think), no stairs, lifting or carrying things, I can’t cook my own meals or do my own housekeeping. I sleep 9 to12 hours/night with the microdoses of Tryptophan (an amino acid used to help sleep – the only “drug” I can handle), restrict all repetitive activities to 5 to 10 minutes, restrict overall normal activity (often very frustrating!), do forced bed rest and reclining for hours of every day.
My body clocks are on a 25-hour day, but trying to force it into a 24 hour one makes me sicker, so for over three years now, I’ve endured the chaos this schedule creates. I must eat frequently, and control my blood sugar like a diabetic. I also avoid several dozen foods I am allergic to including gluten, onions, eggs, all dairy and tomatoes. I am/was very social and deeply involved in many facets of life – science, music, environmental advocacy, human rights, being physically fit, and keeping close ties with family and friends, but now I must do practically nothing or I can’t sleep from the input.
The same goes for reading, writing or anything else requiring mental effort. I try to sing and write songs with a local guitar player a few times a month, even though it makes me a bit sicker to do this. It is a lifeline, in a stormy and black sea of CFS-symptoms, and it keeps me from sinking into the abyss. Sometimes there are mild improvements in my CFS, and I don’t know why. They may feel like one has won the jackpot after years of being bankrupt, but with CFS, the last thing one does is go on a spending spree to celebrate.
Here is a CFS puzzle: when I have a viral infection, all the other symptoms are diminished, especially the fatigue. I get only the mildest version of except the cold or flu I have contracted. I have heard several others with CFS say this. Many say they just get sicker then.
Battle Cries For Those in the Trenches
Never lose heart. You are a worthwhile human being even if you are sick the rest of your life. That is one of the hardest truths to internalize, but the most important for well-being. And it is especially hard to internalize in a society that largely denies us our suffering and sometimes denies us physical help and even companionship because of that. We need more public education about CFS and FMS.
"And I for one would still try to do a PhD at age 70! Just watch me. The minute I am better…. The minute we are better… You will see me out there every day on my bicycle, maybe in a crowd of thousands of former CFS patients, grinning ear to ear and exercising to beat the band."
Florence Nightingale is said to have returned from nursing the Crimean War, only to be permanently hindered by what was likely CFS. She revolutionized nursing standards in Britain literally from her own sick bed. May 12 is Florence Nightingale Day, recently proclaimed National MEFM Awareness Day in Canada. Spread the word. Increased public understanding will lead to more research.I believe that some day, hopefully soon, medical science will identify the viruses, genetics, and chemicals that better explain the mechanisms of Chronic Fatigue Syndrome and Fibromyalgia. My pet theory is that the explanation for these illnesses is at the cusp of a new paradigm of medical understanding. Recent discoveries (2005) may point to more effective treatments or even a cure for CFS, if enough follow-up research is done into CFS pathology.
While many of us have endured 10 to 20 years of this by now, I have hope that the long-lived among us may not have to take it to our graves. And I for one would still try to do a PhD at age 70! Just watch me. The minute I am better…. The minute we are better… You will see me out there every day on my bicycle, maybe in a crowd of thousands of former CFS patients, grinning ear to ear and exercising to beat the band. Cycling, studying, working, living fully just because we finally can.
May this account help others in the understanding of their friends and family with CFS/FM, and may it comfort CFS sufferers to know they are not alone in this misunderstood plague.
Linda MacDonald,
Sherwood Park, Canada,
March 2007
A Few Books and Contacts For Those Who Would like More Information:
1.a. Must-reads: (get a copy for your family doctor): 2003 Canadian Consensus Documents for Diagnosis and Treatment of Chronic Fatigue Syndrome (CFS), 2003 Canadian Consensus Documents for Diagnosis and Treatment of Fibromyalgia Syndrome - go to www.mefmaction.net for free electronic versions, or to find out how to order hard copies or overviews of them.
1.b. Dr. Alison Bested, "HOPE AND HELP FOR CHRONIC FATIGUE SYNDROME AND FIBROMYALGIA", published in 2006 – written by one of the Canadian Consensus Documents’ key contributors.
2. Personal favourite: Chronic Fatigue Syndrome: a Treatment Guide. Erica Verrillo and Lauren Gellman. Possibly the best popularly written summary of available treatments, including medications and supplements, I have found to date. Describes specific biochemical pathways targeted by treatments, as supported by scientific research. The authors are 2 highly educated people with CFS. However it was published in 1997.
3. Other goodies:
From Fatigued to Fantastic! Jacob Teitelbaum, MD - A guide to overcoming severe chronic fatigue, poor sleep, achiness, …etc. Don’t let the overdone title fool you. It takes a multifaceted approach, has a great appendix for physicians and a good help-network section. This MD managed his CFS, apparently. You may have trouble accessing this treatment methodology in Canada.
The Fibromyalgia Help Book. Jenny Fransen, R.N.; I. Jon Russell, MD, PhD
Practical Guide to Living Better with Fibromyalgia. Includes practical help suggestions for specific problems, a good review of the research (to 1995), and a completely informed and informative approach to management of FM. It covers all aspects of management of FM.
There are more (and some quite good) FMS and CFS books websites by the year, but a person has to weed through the ones that just repeat the same general information about services one does not have access to due to the politics of this illness. I recommend using only the most recent sources, since research is changing the knowledge base and will certainly affect treatment.
The internet is your best bet. Books are all too soon out of date. If at all possible, get someone to go on the internet for you. For an educated layperson’s level of articles on CFS, there is Cort Johnson’s CFS science site – PhoenixRising . There’s the (Canadian) National ME-FM Action Network and its newsletter Quest, which contains science, advocacy and legal matters to do with CFS and FM. (Available in hard copy).
In the States the NCF for advocacy, education or support; Co-cure may interest doctors among you, and an excellent ME/CFS site from the UK is MERGE – dedicated to bringing recent CFS science to the fore. People can also get summaries of recent medical research at Immunesupport website or Pub Med online.
During the years when using a computer worsened my symptoms, I depended on my monthly newsletter from the Edmonton ME Society and Quest newsletter, from the National ME-FM Action Network, for updates. It is surprising how few CFS and FMS patients seek the support of ME and FM support groups. Conversely, support groups need to find ways to become more accessible to the bedridden and housebound with FM and CFS/ME. They are the ones who cannot attend meetings and need the most support.