Living with CFS/ME

I am Maija, a 26-year old journalist and medical writer from Helsinki, Finland now living in Amsterdam, the Netherlands. I've been sick with a progressive case of CFS/ME (chronic fatigue syndrome/myalgic encephalomyelitis) since 2000, but luckily good treatment stopped the progression in 2007. I originally started this page back in 2002, but as it got rather outdated even with my later additions, I rewrote most of it in 2007. I also switched from using the name CFS to CFS/ME since it's a far more accurate term.

Since you're here, you might be interested in my CFS/ME/fibromyalgia treatment book, which contains over 250 medications that can be used to treat these illnesses.

If you found this page but don't have any idea of what chronic fatigue syndrome and myalgic encephalomyelitis mean, you can find a good explanation on my book's site. Or, read some of the interviews I've done of CFS/ME sufferers, which you can find in the navbar.

Onset

I got a strange infection early in the year 2000 that recurred a few weeks later. High fever that went up and down, malaise, swollen lymph nodes, muscle pains and a lack of appetite, no respiratory symptoms. I mostly recovered, but was not entirely well. On the 28th of August I had a lot of stress and started to feel feverish. The fever never went away. Fatigue and other symptoms I could always blame on something, but the fever was weird. I also started to get arrhythmias, panic attacks and some other symptoms, but most wouldn't appear until months or years later.

My illness was a mystery and I was largely in denial about it. At first it wasn't even all that bad, but was getting worse all the time with new symptoms constantly developing and old ones worsening. My friends and family were worried at first, but when I started to get worried too, they suddenly changed their minds and decided I was just depressed or somatizing. In the spring of 2002 I was lucky to catch a talk show about fibromyalgia and while I knew I didn't have it I started Googling and at some point I realized what was most likely plaguing me.

A few months after that I had my first doctor visits and lab tests. I got an abnormal ECG but no one wanted to touch it, not even the doctor who ordered it. I was tested for thyroid problems and an endocrinologist ordered morning cortisol, but as they were normal no one wanted to help me. I was certain I did have CFS/ME but had no idea as how to proceed. Of course no one was keen on this self-diagnosis; my dad was pretty much the only person willing to believe me. It took until late 2005 and a tip from a kind visitor of this website to finally get me officially diagnosed.

Treatment

In late 2005 I finally got medical help at the clinic for infectious diseases at the Helsinki University Hospital. I went through ~50 lab tests, an ECG, two ultrasounds and thorax (lung) x-ray, after which they felt confident enough to finally confirm my diagnosis. They also found mitral valve prolapse, a heart defect which is probably caused by my CFS/ME (as I haven't always had it) and may contribute to my heart problems, but should be harmless.

The treatment options at the clinic were antidepressants, corticosteroids, antibiotics, IVIG (IV immunoglobulin) and antiviral drugs (I believe only Valtrex). Due to my lab results I apparently didn't qualify the latter two. I did get a prescription for prednisone. In spite of the risks I agreed to as I had experimented with single doses of glucocorticoids and found them very helpful. The longer course allowed me to live in a remission for a few months. After that the efficacy waned and I was told to start tapering off the drug. The "withdrawal" lasted a total of 7-8 months because it had to be done extremely slowly. After that trial I was discharged as they were "out of options" and wouldn't listen to my suggestions.

Luckily at the beginning of 2007 I was finally able to locate a good doctor. He is a professor who was working at a sleep clinic of a neurologic research center. He isn't an expert in CFS/ME, but he trusts my expertise. On the second visit I asked him to prescribe me low dose naltrexone. After he looked it up and read what I had written about it he agreed to. I've been on it since the 5th of March 2007 and it has helped me a great deal. I'm not healthy or cured by any means, but it seems to have wiped off a few years of disease progression. Also my chronic urticaria is pretty much gone now. You can read more in my LDN journal. Later I also got piracetam, nimodipine, melatonin and baclofen added to the regime, with great results.

My symptoms

I am pretty much a "textbook" case of CFS/ME, as I have pretty much all the common symptoms and plenty of uncommon ones and while they do get worse with exertion, they often vary in a completely unpredictable way. Luckily I don't have any chronic pain (even though I have more pain than a normal person) and I don't have any severe neurologic symptoms, besides cognitive impairment which is more severe than my physical impairment (compared to most other PWCs). It is pretty much my worst symptom now, especially considering that I used to be an extremely intelligent person with a great memory. It's my brain I miss the most.

I've managed to mostly fix many of my worst symptoms (such as fever and chronic urticaria, which were among the most debilitating ones), but new ones always seem to replace them. People who haven't experienced it wouldn't realize how much trouble e.g. urinary frequency can cause. So, these are all the symptoms I've had:

  • fatigue **
  • malaise **
  • post-exertional malaise **
  • muscle weakness **
  • tiredness **
  • cognitive problems **
  • problems with coordination and balance
  • nausea
  • IBS **
  • chronic fever **
  • muscle aches **
  • lymph node tenderness **
  • vertigo *
  • orthostatic hypotension (sometimes delayed) *
  • greatly increased urinary frequency and nocturia
  • chronic urticaria (hives) ***
  • other rashes
  • seborrhea **
  • new food intolerances
  • sensitivity to light, certain sounds, smells and vapours
  • sensitive skin (e.g. deodorants containing aluminium cause me lymph node infections)
  • visual disturbances *
  • epileptic absence seizures (strongly suspected)
  • panic attacks ***
  • tachycardia and cardiac arrhythmias ***
  • chest pain *
  • dyspnea **
  • hair loss
  • headaches **
  • migraines (usually with aura) ***
  • muscle stiffness and tension **
  • muscle twitches (rarely)
  • tingling and numbness in extremities *
  • suspected neuropathic pain ***
  • lowered immunity, especially increased suspectibility to bacterial infections ***
  • mouth ulcers *
  • night sweats **
  • sleeping problems, e.g. insomnia, waking up at night, nightmares, hypnagogic states **
  • chronic congestion and post-nasal drip
  • thermostatic instability, low tolerance to cold and heat **
  • myofascial pain syndrome (trigger points)
  • esophageal dysmotility and suspected mild gastroparesis
  • adrenal insufficiency **
  • Raynaud's phenomenon *
  • tremor *

*** The symptom is mostly or entirely gone thanks to medication or other things.
** Medication and/or other treatments have helped the symptom, but it is still quite bothersome
* The symptom is very intermittent - I haven't had much of it lately, but since it comes and goes I can't really judge if it has been helped by any particular treatment

Living with CFS/ME

The first years were the worst for several reasons. I didn't know what was wrong with me and tried unsuccessfully to pretend I was fine. Many people wonder how I can cope so well these days and I say it's mostly down to time. I believe it takes 3-5 years for most people to come to terms with a chronic illness. It's similar to a breakup: at first you feel like there is no way you will ever get over it, but with time most people learn to live with it. It is a grieving process, mourning for the loss of your health. Many people who seem to have got used to their illness very quickly are still in denial, and most of them probably go through the acceptance stage later.

As clichéd as it sounds, being sick has made me appreciate many things in life in a completely new way. Most people don't realize how great it is to be able to walk down the road. Illness teaches you not to take anything for granted, that life really is unpredictable, and that bad stuff really happens to people, including you, not just "someone else". I and some other people I know who have CFS/ME feel like we are better persons because of this, perhaps even happier, as paradoxical as it sounds. I would of course like to get better, but I don't know if I would like to "reroll" my life so that I'd never become ill in the first place, even if that was possible. Probably not, even though I lost a lot of my youth to it.

It's not like I don't ever get down because of being ill, of course I do, especially since I'm very active by nature. But bitterness and anger don't help any. Some people seem to think that acceptance means you stop fighting for getting better. I disagree. You have to accept that you have a serious illness and there is no guarantee that you will ever get fully better, but you can accept the reality and still aim to get better. That's what you should do, I think. Just don't go chasing expensive fad treatments. There is no reason to try any goofy therapies, because there are so many ones that really do work.

The worst part hasn't necessarily been my own illness but knowing that many people have it much worse but are unable to get any medical, financial or household assistance. I know many such people personally and it breaks my heart. Pretty much the only good thing about living with this illness is the wonderful people I've met thanks to it. I've got five good friends with CFS/ME, two of whom I also know in real life. One of my best friends I also indirectly met because of this illness, even though he doesn't have it.

Like many other people with CFS/ME, I've tried to channel my frustration into proactive things. I maintain a large Finnish CFS/ME website, the only one of its kind, with an active discussion forum. As a journalist I try to keep the media on its toes and always aim to send corrections when there are errors. The biggest correction letter I've sent so far was several pages long... I constantly study medicine to be able to understand this illness as well as possible and to share my knowledge with others. I've written two books about CFS/ME (first in Finnish, then in English).

My book

In the spring of 2006 I started composing a list of medications available in Finland that can be used to treat CFS/ME, aimed at patients to show their doctors to get them more convinced that there are treatments for CFS/ME. It was originally supposed to be a brochure of 20-30 A4 pages. In the end it turned into a book of about 130 pages, listing about 175 different medications with almost 500 references. It hasn't been a huge success commercially or otherwise, but it has got a lot of praise. Several people have ordered three or more copies. One guy even donated me over 200 euros out of gratitude! The second Finnish version of the book was released in 2010 by the academic publisher Finn Lectura, with a foreword from the prominent Finnish sleep researcher Olli Polo.

The English version was released on the 12th of May 2008. It is much larger than the original Finnish version with 346 pages, containing over 250 medications and over 1,000 references. It also includes fibromyalgia treatments. The availability, side effects and price range of each medication is listed. A glossary and index are also included. You can find more information on the book's website.

I have also written a novel titled Marian ilmestyskirja (Maria's Book of Revelations) which will be published by Muruja in spring 2010. It is about otherness caused by disability and other things. The disability happens to be CFS/ME (or possibly chronic Lyme disease), though this is not explicitly mentioned in the book.

"You can't be that tired!"

I've also noticed there are many different ways for people to react to CFS/ME.

  • People who think that instead of being sick
    • ...you're faking
    • ...you're attention seeking
    • ...you're hypochondriac
    • ...you're mentally ill
    • ...you're lazy
  • People who think you are sick, but
    • ...it doesn't really affect you
    • ...it will go away soon
  • People who think you're sick but it's not CFS/ME - I've been told I might suffer from e.g. these:
    • anaemia
    • leukaemia
    • nutritional deficiency
    • lack of sunlight
    • aluminium poisoning
    • mercury poisoning (I don't have any amalgam fillings and don't eat fish)
    • parasites
    • brain tumor
    • mitral valve prolapse (actually I do have this, but it's a result and not the cause of my CFS/ME)

Empathetic quotes I've heard

  • "You look so full of life."
  • "Work more!"
  • "You can't have a problem with your immune system since there's nothing wrong with mine." (from my mom)
  • "Don't bother the doctors, some people actually need them."
  • "Do you still have that sleeping syndrome?"
  • "Chronic fatigue syndrome? You don't have that now, do you?
  • "You can't know it's CFS since you haven't been diagnosed by a psychiatrist."
  • "No wonder you're ill since you never go out."
  • "Drink coffee or take caffeine pills."
  • "Are you sure it's not because you're a vegetarian?"
  • "If you're really that sick, you should be in the hospital."
  • "You keep making up these imaginary illnesses you can't get over so that you wouldn't have to do anything."
  • "If you stop taking your temp, it will get back to normal."
  • "I believe you need more food, more fat and more meat protein to make you healthier and less tired."
  • "You just aren't eating enough veggies."
  • "Feeling bad won't kill you, it will make you realize what feeling good is like."
  • "How come you can't work when you can still spend all your time on the computer." (from my dad, during a time when I was so sick I had to spend most of my time resting in bed, and no, not with a computer)
  • "Fever is not a symptom of a neurological illness." (from an arrogant, rude and clueless neurologist who didn't know anything about CFS/ME but tried hard to pretend that he did)
  • "You cannot know whether you need psychotherapy." (from an arrogant, rude and clueless infection specialist, after I had been evaluated by a psychiatrist and two neuropsychologists, all of whom agreed there was nothing wrong with my psyche)

Articles I've written about or related to CFS/ME

See a list of articles I have written about CFS/ME, fibromyalgia and related subjects on my book's website.