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Newly Diagnosed with ME/CFS? Four Things Not to Learn the Hard way

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This article, first published Nov 30, 2011, is reproduced with kind permission* from Jocelyn W’s “No Poster Girl” blog (http://NoPosterGirl.com). As Jocelyn explains, her ‘invisible’ illness is chronic fatigue syndrome, and:

“My intention here is to write openly and honestly about what my life is like now, with severe ME/CFS. I developed the illness in 2004 and I’ve been bedridden since December 2007.”

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To Those Newly Diagnosed with ME/CFS: Four Things I Learned the Hard Way

Jocelyn W

I hit a nerve with my “Nothing” post about what I did (and mostly what I didn’t do) after I was diagnosed. And many of the reactions I heard from others touched on the number one, most important, know-this-if-nothing-else piece of advice I wish every doctor would give to every person diagnosed with ME/CFS.

Item #1: Stay inside your energy envelope.

Here are some of the ways that was said:

Nathalie: “For me if I had known at the beginning what I had and didn’t over do it on good days I might be in a totally different place.”

Kathy D: “After nearly 26 years, I still don’t know what to do except rest most of the time, pace myself very carefully, and take some vitamins.”

Debbie Anderson: “If I had been told by my doctors that by pushing my limits, and burning the candle at both ends, would destroy my vascular and heart systems, I would have listened.”

Breathe Easy: “I feel so strongly that if I had not tried to just push through and act as if the Dx was bogus, I would not be so bad off today.”

Falling ill with ME/CFS is a real down-the-rabbit hole experience. Suddenly, your body, which has always, up to that point, had enough energy to get you through the day, allowing you to do whatever needs doing, just – doesn’t. It’s as if you’ve always made a certain amount of money and all of a sudden you’ve taken a 50% pay cut. In order to maintain a positive balance in your bank account, you must start budgeting differently; your priorities have to change.

Since you don’t have enough energy to spend on all the things you used to be able to get done, you have to start making choices.

Now, noting the need for pacing isn’t uncommon advice – but the problem is that it needs to get to the newly diagnosed quickly. People who develop ME/CFS don’t instinctively know that it’s absolutely imperative that they stay within their energy envelope. Why should they? It’s not something they’ve ever needed to do.

Plus, it takes time to learn and to shift from that everything-is-normal state to the I-understand-my-limitations state. And oftentimes, it has to be done over and over again as the illness progresses.

Furthermore, our culture does not encourage healthy, well-adapted responses to illness. It rewards pushing through, and so that’s what the newly diagnosed mostly do. Even after you find out you have to stop doing it, it’s hard to turn away from. We think we have to push through; whatever needs doing is more important than giving our bodies time to rest, time to heal.

But for people with ME/CFS, responding appropriately to the body’s tiredness is absolutely mandatory. If we don’t do so, we’ll get worse – at least temporarily, and sometimes permanently. Our energy allotment will go down, down, down – and we’ll have less and less energy to “spend.”

So, because of Item #1, Item #2: Rest.

If you suddenly find yourself inexplicably much more tired than you used to be, the way to stay within your energy envelope is to do less and rest more. And resting doesn’t require you to know for sure what is causing your tiredness – you don’t need a conclusive diagnosis in hand. You also don’t need blood tests, a prescription, to spend cash, or to buy equipment in order to do it.

Maybe that, too, sounds obvious – if you’re tired, you should rest, right? But the amount of rest needed in ME/CFS is a whole new ball game for most people. You have to make a real commitment to resting.

Because I’m talking serious rest. Enforced rest. Give yourself permission to rest. For several months at least, to see if it helps. Clear your schedule. Take FMLA. Quit your job. Shed responsibilities. Reduce the amount of stress in your life. Move in with family if you have them and you can. I know none of this is realistic – upending your life just to lie around and do nothing, and potentially drastically reduce your income? Sure, dealing with upending your life for months, maybe a year, is difficult, but dealing with upending your life permanently is worse.

It is a terrible injustice that this illness receives such a paltry amount of funding, and that because of that, there are not better treatments than simply respecting the limits created by the disease. But until we have those better treatments, resting first, and not when the disease forces you to, is what will give you the best chance at recovery.

Item #3: Where you are now is not necessarily where you are going to be.

When I fell ill, there was much less information on the web about ME/CFS than there is now. The two major things that I remember running across were Jodi Bassett’s A Hummingbird’s Guide to ME and Laura Hillenbrand’s essay “A Sudden Illness”, the latter of which was only a couple years old at that point. Reading “A Sudden Illness” was incredibly frightening. Hillenbrand described such awful events, and such terrible incapacity. I couldn’t imagine how she could endure it, and I was grateful that my case of CFS was not as severe as hers.

Well, it wasn’t, then, but it eventually was – and even worse than what she describes, too. This illness is variable and changeable. Some people – the very lucky ones – get sick, are sick for a while, and get better or mostly better with minor limitations. Some people get sick to a degree, and pretty much stay at that level of illness from then on. Some people oscillate, getting worse and then better and then worse again. Some people get sick, then sicker, then even more sick.

So I would counsel the newly diagnosed to realize that a lot of things can happen – just because you’re not very sick now doesn’t mean you can’t possibly get worse, or just because you are very sick now doesn’t mean that you’ll never improve. And a major part of the way not to end up very sick is – you guessed it, back to Item #2: Rest.

Item #4: You need a doctor with at least some ME/CFS expertise.

I didn’t think I needed an ME/CFS doctor, and I didn’t know how to find one, and when I did learn how to find one, they were all so far away that I didn’t think it was worth traveling to see one. And if I had had such a doctor, I might have been told Item #1 and Item #2, at a time when it could have done me more good than when I finally figured it out myself, and I might have heard about and started treatment sooner, and I might be in a better spot now.

Because I didn’t have an ME/CFS doctor in the early years of my illness, I was managed by my GP in a hands-off way. She didn’t know anything about treatment, or anything about ME/CFS specialists. And that’s not at all uncommon. ME/CFS is poorly understood by most medical practitioners. Don’t be a guinea pig, someone who is managed without knowledge, or someone who sticks with a doctor who tells you that you must be depressed, that you just need to exercise, or that your illness is all in your head because all the tests are negative.

An ME/CFS doctor who has seen a lot of the illness before you show up in his or her office will know the pitfalls that come along with not knowing what you’re doing in terms of dealing with this illness, and you’ll give yourself the best chance for a good outcome by being under the care of someone who can guide you along the way.

You don’t necessarily need to go to one of the few super-specialists who only treat ME/CFS, but you at least need someone who “believes in” and is familiar with the illness. But I would say that if you can get to a super-specialist, do. (You can find ME/CFS doctors and specialists at the ME/CFS Wiki here.)

So those are my suggestions – the things I most wish someone had told me early on. And my story is the same as those quoted above. I did each one of these things wrong in turn.

• I was a bit of a workaholic, and I had always gotten better after I’d gotten sick, so I didn’t think there was anything wrong with continuing to push myself, even though I was ill.

• I took about a week off of work, and then went right back. And I kept showing up to work even though I was so tired that I had to put my head down on my desk for ten or fifteen minutes at a time, several times a day.

• I thought my case was a mild one, so I didn’t treat it with the gravity it deserved. Well, I only had a mild case until I had a moderate case, and then a severe case, then a very severe case.

• I didn’t have a doctor who knew anything about ME/CFS, and I had never met anyone else who had it, so nobody told me how vitally important it was for me to rest and stay within my energy envelope.

I, and many other ME/CFS patients, have had to learn all of these – and many other things about our illness – the hard way. It shouldn’t be that way. It’s not as if our illness is uncommon, and it’s not as if it’s unpredictable. Until we know how to prevent and how to actually cure it, having good information, starting from go, is the key to allowing patients to have the best chance at recovery.

Now for those of you who have ME/CFS, what do you wish you’d heard when you first fell ill, or what were you told that was most – or least – helpful?

(You might also want to check out Giles Meehan’s Get Well From ME post and video on this topic – Start Here: Newly Diagnosed with ME – which was inspired by mine.)

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* Reproduced with kind permission from Jocelyn W’s No Poster Girl blog ©http://NoPosterGirl.com, 2012. All Rights Reserved.

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2 thoughts on “Newly Diagnosed with ME/CFS? Four Things Not to Learn the Hard way”

  1. anomar says:

    I have had this horrible disease since 1970 but have managed to keep going. Now, nearing retirement I have hit a hard bump and don’t seem to be able to get up again even after 7 months of near complete rest.

    I lost my mother, who I cared for in my own home for six years, 13 weeks ago after I had already collapsed and was taken from work in an ambulance after collapsing.

    Seven months later and I still can do very little, sleep 12 hours or more a day and while I am getting better it is very slow.

    Allowing myself to rest involves a lot of guilt at this point. After 7 months, I should be able to do things around the house after a lot of sleep, but the answer is no.

    About twenty years ago, I learned to concentrate on a maxim from the “Tao Teh Ching” — “Do less than you can so that you will always have a reserve”

    Unfortunately after a 43 year career, I still do not have enough to retire on largely because of the economic crisis which sent my new home into negative equity territory, taking my down payment from my retirement funds with it.

    I am single, very largely because the Chronic Fatigue limited my social life and am facing an old age alone and with not enough to live on. The costs of Chronic Fatigue are immense as I have spent at least one hundred thousand taking care of it and needing things others can do without, e.g. hard wood floors to minimize allergies, special food, extra quiet, clean air (a high cost item in today’s world).

    I have a month before I try to begin teaching again. I am very frightened and am not allowing myself to rest guilt free.

    Maybe we need old age homes specifically for chronic fatigue victims who have managed to make it this far but have limited resources in a lot of ways.

    I have a lot of skills and gifts which have been largely wasted because of this disease.

    It is true that rest, in the end, is the only thing which allows us to get better. Pushing through is the most damaging thing we can do to ourselves.

    Rest without guilt. Right now all I can do is watch videos/films and post like this on the internet.

    But I cannot do this without guilt which itself makes my recovery go more slowly.

  2. ex-cfs says:

    I also never knew that pushing myself hard could lead to falling off a cliff with CFS. What I wish I had known early in the illness:

    1. Get diagnosed: If you are always tired and can never seem to get your energy back, even during vacations, keep looking for medical answers. Take it seriously. Institute a health regimen, including alternative health. This is prevention. If you do not do this, and keep on going and pushing, you may fall into full-blown CFS, and suddenly, with no way back any time soon. If you have it, you know it. But that doesn’t mean doctors and your health insurer do. So, seek an official diagnosis. This will also provide validation, and tell those around you that you really are sick. In the worst case, this may enable you to get disability. To get diagnosed, you need someone who knows about CFS. You probably need to use tests that are less traditional. After both my MD and my alternative providers (with their less traditional, yet objective and validated tests) got done testing me, I had 35 abnormal lab results. But like everyone else, I started with a doctor telling me all was normal, with no abnormal lab results. It took a while to find out where to look.

    2. De-stressing is the most important thing, even more important than resting: I rested for about 9 months before concluding that resting was not getting anything done. Later in my recovery, I removed all sources of removable stress from my life for about a year. This included family members or friends that stressed me out. I only worked about 4 hours a day, every other day, and only when I felt up to it. I sat in a chair all day and did not go to school/day care events. I stopped beating myself up for resting and trying to find out what was wrong with me and taking care of myself. I reminded myself that I deserve to take care of myself and regain my health, especially after so many years of pushing myself in a high-stress environment. So, I mostly stopped feeling guilty, which also reduced stress. I found new ways to play with my young children, which did not involve me doing much physically, and they liked it, so that reduced my stress. I helped myself over time physically and that reduced my body burden, which reduced myself. I refused to deal with stressful topics too early (before I was up to dealing with them) or too late in the day (so they would not disrupt my sleep). I asked my family for financial help. Dropping my stress load dramatically really helped, and eventually allowed me enough energy to focus on getting better.

    3. Resting is still very important, as is not overdoing: Studies have shown that people who do physically strenuous things while a virus is active have a higher chance of ending up with a chronic viral infection. This is why elite athletes are at greater risk of CFS. Currently, rest is the best thing for many of the viruses that tend to happen in CFS/ME. Your body systems are all askey with CFS, and when there are shortfalls of essential things, fatigue is often the result. Sleep early and long. Sleep in, and do not use an alarm (which stresses the body). Treat feeling fatigued like pain — a warning. If you push too hard, rest a day or two, or up to a month if you have had a prolonged pushing too hard or super stressful period in your life (this latter for those less ill or who have substantially recovered). Even after recovery, do not overdo. Keep within your limits.

    4. Treat CFS recovery like a job: It will be all you can do to do the research you need to find possible answers — who you might go to see, what you might try, what you might need. Do not feel guilty about this or put it off. I spent 18 months and $35,000 before I decided to become my own general contractor to find out how to recover from CFS as my full-time job. Then, it took only 6 months and $6,000. Waiting does not make it better and may increase the odds that you will only worsen. Some damage may be cumulative over time, though in my experience most is reversible, and there may be a threshold that once passed, makes it hard to recover. Treat it like a job now. If you are not up to dealing with research, enlist the help of someone close to you to help. And find an expert health care practitioner that knows what to look for.

    5. Test your hormones and other systems that change as you age: Sex hormones (incl testosterone for women too), thyroid hormones (get all the tests — see articles on what these are), cortisol, DHEA, etc.

    6. Supplement and learn nutritional strategies appropriate for your body: I had a 4 drawer file cabinet with supplements — 1 for morning, 2 for lunch, 3 for dinner, 4 for evening/before bed. I had a spreadsheet to manage all these, and so I could remember where to re-order. Include metabolic testing to see what your needs are and/or try William Wolcott’s metabolic testing questionnaire in his book. That was a lifesaver for me. It was my experience that neither traditional nor alternative medicine was right about nutrition and what foods are healthy/unhealthy — look at the evidence and adapt it for your body type. Eerybody I have talked to that has or recovered from CFS has serious nutritional deficiecies. This can be from a poor diet, low nutritional content in today’s foods, poor digestion and/or absorbtion in your body, or poor gut health — or all of these. You need to address all these topics. It is amazing what the right food for you can do.

    7. Change one thing at a time, and wait for the effects: With limited energy, it is enough to deal with to change one thing at a time. In this way, you can also isolate the effect of whatever you are trying. This not only lets you know what works really well, sort of well, not really, or backfires; but you will also learn what it feels like when your change works. So, later when you feel you need that thing again, you’ll learn to identify when you need what and how you feel different after it works. If you change a lot at once, you do not get this personal internal learning. Once you change something that works, concentrate on keeping it up for 3 weeks. After that, it will have become a new habit. It is OK if only one change happens in a 3 week period. You are in this for recovery over the long haul. It took a while to get into CFS (sudden onset was really just the straw that broke the camel’s back), and it will take a while to get over it and rebalance and refortify the body. Be patient while change occurs.

    8. Never stop learning: never stop learning about this illness, even after you are recovering. It can grow and change as you age, and more and more is learned all the time. Stay alert to new things that might help.

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