Ash’s Advice: Part 2 – Your Life Is In YOUR Hands

Note: Ash’s Advice is written by, me, Ash, a long-time patient with CFS/CFIDS/FMS/Chronic Lyme, etc. I am not a doctor, and nothing written here should be construed as medical advice. These are simply my musings – what I wish I was able to tell my younger, healthier self: the person I was before CFS/FMS pretty much destroyed my life. A series of letters to my younger self, and to anyone suffering through the “living death” that is Neuro-Immune Disease: CFS/ME/FMS/Chronic Lyme, etc.

Part 2: Your Life Is In YOUR Hands

You were healthy & strong. You ate the right foods, were probably active outdoors, perhaps a hiker, camper, runner, or maybe just a normal person who never had to think much about your health.

Then it all changed. You’re overwhelmingly tired all the time. You wake up feeling more tired than when you went to sleep. It takes everything you’ve got just to go to the grocery store, and you are even more exhausted for days afterward. You have headaches, perhaps constantly, and possibly migraines. You have pain… everywhere. Some spots are worse than others. No amount of Advil, Tylenol, or aspirin helps. You might have sore throats more days than not, with swollen lymph nodes. Nausea and light and sound sensitivity may be a near-constant. You might not be able to tolerate heat, or cold.

And perhaps most distressingly, you are suddenly having lapses in memory, difficulty concentrating, trouble spelling or finding the correct word. You might get confused or overwhelmed in stores.

You feel like hell. Like you’ve been run over by a Mack truck. Like you have the flu, only it goes on and on and on. Some days might be a little better and others a little bit worse, but you never, ever, feel like you used to. You start to forget what it’s like to wake up full of energy and excitement about the day’s activities. Everything, even taking a shower, is overwhelming painful or exhausting to do.

You’ve either been diagnosed with CFS/FMS/CFIDS/ME/etc.  or you have a strong reason to believe you will be.

Where do you go from here? The answer may not be the one you want to hear.

Chronic Fatigue Syndrome, Fibromyalgia Syndrome, and other Neuro-Immune Diseases,  are syndromes, a series of chain reactions in your body. There are many, many theories about the hows and whys. Your primary care provider (PCP) or family doctor has ruled out all the obvious things, likely handed you a prescription for Cymbalta, an antidepressant, for the fatigue, and Lyrica, for the pain/fatigue, and told you to live with it.

But how do you do that? How do you explain this to friends and family, who tell you that you look fine. Or who wonder why you can be somewhat active one day, and then spend the next three days in bed.

You have one job from here on in: Education. You must educate yourself as to the many theories about CFS/FMS, etc., learn all about the politics involved (and there’s a lot of politics), and find a doctor who knows what is going on but who won’t take advantage of you by pushing you into weeks, months, or years of experimental treatments (much harder than you might think).

You must become your own doctor, in a sense. Give that a moment of thought. Your PCP probably has hundreds of patients. They may have only one or two with CFS, etc. They can’t spend their down-time going to conferences to learn about the latest developments, and tracking down the latest studies and scientific research papers  about CFS/FMS/Lyme, etc. You can’t count on them to understand what you’re feeling, because unless they’ve gone through this, or had a family member with CFS, etc., they have no way of understanding it. It’s out of reach.

So despite the “brain fog” or “fibro-fog” you’re experiencing, you must do the work for them. You must find the doctors with the most experience, but not the ones that will exploit your pocketbook unnecessarily. You must learn about the side effects of every medication you take, and the longer you’re sick, the more the cascade of system failures progresses, the more medications you are going to find yourself taking.

Neuro-Immune Diseases like CFS, FMS, Gulf War Illness (GWI), etc., are serious illnesses. They are progressive. Very, very few people recover. Some people may make a partial recovery, only to relapse later. Having one of these puts you at a much higher risk of dying at an earlier age, possibly from leukemia, lymphoma, one of the other cancers that often show up in patients ill with these… and also because it puts you at a much higher risk of suicide. When you lose pretty much everything, and are isolated & in pain constantly, suicide can start to look mighty appealing.

My Story

I got “unofficially sick” in around 1992, after a martial arts class mishap. I had a headache for six months. It slowly passed, for the most part, and I regained some of the strength & energy I had lost. But then in late 1998, it came back with a vengeance, following a very stressful divorce & months of sleep deprivation (these were the “triggers”). I thought I was having a series of sinus infections. Took multiple antibiotics. But the fatigue and headaches persisted. Finally, in early 1999, I was declared to have “CFS/FMS,” given a prescription for Zoloft & Gabapentin (Lyrica’s predecessor), and told this was just what it was.

I knew I couldn’t live that way, so I moved to Virginia, back home with my mom, bringing along my 3 year old daughter (born at home with a midwife, so opposed to the “medical establishment” was I), my teenage daughter, and my home-based internet business.

I saw specialists: an internal medicine specialist who said, yep, you have CFS/FMS, learn to live with it.

Then a visit to Johns Hopkins (which I arranged myself) showed Neurally Mediated Hypotention (NMH, sometimes called POTS). This is classic CFS: the dysfunctioning of the autonomic nervous system. I got so dizzy whenever I stood up that I’d nearly faint. I got another pill for that: Florinef.

I saw rheumatologist #1, who ran a few tests, then said, yep, you have CFS & FMS. She switched my meds around a little, and said come back in six months.

Finally, I managed to get in to see Rheumatologist #2, who specializes in CFS, FMS, Lyme Disease & other tick-borne diseases, etc. She took a very different approach. First, there was an interview/exam that lasted nearly two hours. Then a series of x-rays. Finally, a tremendous number of labs, for what the internist & other rheumatologist laughingly called “zebras” – things so rare they are very unlikely to be an issue, so they aren’t tested for.

But guess what? Rheumatologist #2 was right. I had positives to a lot of zebras – very high levels of antibodies to human parvovirus, Epstein-Barr Virus (EBV – the virus that causes Mono), mycoplasma pneumonia, several varieties of herpes, and more that I’ve forgotten over the years. (Internist, reviewing the results, said “No wonder you feel so bad!). X-rays showed “reactive inflammatory arthritis” in multiple joints & spine – a type of arthritis caused by the body’s inflammatory response to viral infections. And Myofascial Pain Syndrome.

She was certain there was more – she thought I had “chronic Lyme,” a subject of great debate in the medical community. But the Lyme tests were very unreliable in those days, so we tested again and again… and in the meantime, I got prescribed more medicines than I have fingers. I also started my education in “chronic Lyme,” CFS & FMS.

With her help, I improved enough to move away from my mom’s, into a home of my own, nestled in the Blue Ridge Mountains I’d loved since I was a child.

But the challenges continued to pile up: severe bloating sent me to the hospital several times, ending with my gallbladder being removed. That caused the IBS (Irritable Bowel Syndrome – also common in CFS, FMS, etc.) to get even worse, so one more prescription was added – digestive enzymes. The constant sore throats & throat infections were addressed with a tonsillectomy – something you really don’t want to do as an adult.

I learned, and learned, and learned more, about the way the human body works, how it responds to infections, how the cascade failures of different systems happens, what all the latest theories and experimental treatments were.

And I’m still learning something new every single day.

It was about this time that people started mistaking me for a doctor, because my language had changed – I used medical terms more and more frequently; while hospitalized with the bloating, the patient next to me – in for the same issue – was relieved by my understanding of how an MRI works and explanation of what she should expect. She asked my mother where my medical practice was located. Ha!

Here’s what you have to understand: most doctor’s have little training or experience with CFS, FMS, “chronic Lyme”, tick-borne disease progression, etc.

It is all very, very complicated, there’s conflicting evidence for all the primary theories, and very little funding for the study of these illnesses. So unless you are fortunate enough to find a center or doctor who specializes in these – few & far between – it’s now your job, for the sake of your health, your family, your future, to learn everything there is to learn, from mitochondrial dysfunction to XMRV, Lyme & it’s cohorts, supplements that might help or might hurt, and exactly what effect each and every medication is going to have on your body. You will probably become ultra-sensitive to medications, and need dose adjustments. You may have some of the more rare side effects associated with some of your medications, and your doctor may not even be aware those side effects exist – how could they possibly remember the side effects for every prescription out there?

There are many websites that give good explanations of the mainstream concepts of Neuro-Immune Diseases like CFS, etc. There are many websites that promise a “cure” if you only give their nutritional supplements a try – and those can be very expensive. The latter can look like websites based in facts & studies, but may not be. There are blogs of the many victims of these illnesses, just like this one, all offering their own ideas. There are groups that post the latest medical research papers relating to your illnesses, and you need to join those groups, and read – and read again, however many times is necessary in order to understand and retain the information, quite the challenge when you find it hard to recall what you ate for breakfast.

You also have to learn about labs: what labs are done for what, and what the results might – or might not – mean. Some are interpreted one way by one doctor, and another way entirely by a different doctor.

Your doctor’s job is not to save you from the living hell of Neuro-Immune Diseases like CFS, FMS, Lyme, etc.

Their job is to give you the best medical care they are aware of & agree with.

Your job, from now on, is to become your own best caregiver, to learn about all the processes of these diseases, stay abreast of new developments & research, and bring something you think might be relevant to your doctor’s attention.

Your job is to listen intently to your body, to try to unravel the mysteries within, to figure out which medications are helping, and which might be making things worse.

Your job is to be your own patient advocate: to make hard decisions on things like experimental treatments or participating in a study if you are lucky enough to find one; working collaboratively with your doctor on your care; asking for labs you think might offer clarity; and asking for medications you think might help, even if they carry significant risk.

And finally, your job is to explain your situation to your family and friends as best you can.

This is a very complicated and controversial illness, by whatever name. And, it’s an “invisible illness.” You might feel like you’re on the verge of passing out, but the people around you might think you look fine, and therefore are fine. Families can fracture in all directions over this illness. Some people will never admit that you are really sick. You will find yourself isolated, because you are too damn tired & in too much pain to go to family gatherings, or have people over. You will try again and again to explain it, but sometimes, it’s a losing battle.

But, there is hope. There are new developments all the time, and science is taking more of an interest in these illnesses because of the discovery of XMRV, and because the number of people afflicted is soaring. And with the internet, you have an opportunity to network with others who are as sick as you, those who are even sicker, and those who have been sick for much longer. We are something of a new family. We support each other. Cheer our achievements, and work for greater research to take place. You have a huge job ahead of you. But you are not alone in it.

Welcome to the distressing world of Neuro-Immune Disease, CFS, FMS, ME, chronic Lyme, and GWI.

You are in for the fight of your life – the fight for your life.