“Chronic. Fatigue. Syndrome. It’s An Illness.” – May 12: ME/CFS Awareness Day

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I went to my PCP (that’s Primary Care Provider for those who don’t know) last week for my monthly visit, and a new nurse takes me back to the room. It went something like this…

Her: “You’re here for a follow-up for…?”

Me: Chronic fatigue Syndrome.

Her: Oh, fatigue. So you’re tired a lot.
(As she starts looking for the computer’s questionnaire for “fatigue” patients…)

Me: No. Chronic. Fatigue. Syndrome. It’s an illness, and it’s in there.

She continues sorting through, finally finds it, where I helpfully point out it’s listed as just “Chronic Fatigue,” but reassure her it has the right questions. The screen is huge, and I’ve done this so very many times…

She begins reading through the questionnaire the computer provides:

Her: And when did this start?

Me: 1999
(by now I know she’s NOT in the right place, she’s doing a new patient questionnaire, not a follow-up…)(sigh)

Her: And what brought this on: stress, viral infection, accident, yada yada yada…

Me: (hard stare)
Me: (thinking: do I really want or need to get into this with this ignorant nurse who couldn’t care less? I have a blazing migraine and ear infection and just want to see my most excellent doctor. I am not in the mood to patiently educate yet another nurse today.)
Me: Possibly a lot of things, but even scientists don’t know for sure what causes it.

Her: (she looks up briefly, startled)
Her: Oh… Is it relapsing, constant, or getting worse?

Me: Constantly getting worse.

Her: Are your symptoms worse after physical activity?

Me: Oh, are they ever.

Her: And do you have: unrefreshing sleep… impaired cognitive ability… decrease in activity level that interferes with normal activities… migraines or other headaches… muscle pain… weakness… gastrointestinal pain or bloating… etc etc etc

She glances over and sees me nodding my head, yes, to everything.

Her voice has gotten softer and lower as she’s moved down the list, and she trails off before she gets to the end. She wound up not asking me all the questions, and I should know, having done this once a month for years.

Me: I can make it easy for you. I have every single one of the dozens of symptoms on the list, with exception of diarrhea.

She looks at me with surprise.

Me: Next section: Yes, medications help, to some extent, but not enough.
Me: Yes, they cause lots of side effects, such as nausea, heartburn, headaches, etc. I take meds to deal with the side effects of my meds, but no, it’s not nearly enough. I’ve been housebound since 2007.

Me: Next section: yes, I’ve tried supplements and they do help, as does meditation, massage, and physical therapy. Acupuncture was questionable.

She is busy clicking boxes.

I really couldn’t tell, when she left, if she was upset at the thought of an illness that she’d never heard of causing such issues for such a long time, if she was overwhelmed, or just didn’t care. She didn’t look up when she stammered, “I hope you get to feeling better soon.” But as I reflect back on it, her shoulders were hunched, and she kinda looked like a dog who has been beaten… or maybe like someone about to cry. I honestly don’t know. I wasn’t mean or snippy, I was just matter-of-fact.

This is what it is.

I rested my blazing head down on the edge of the table, closed my eyes against the too-bright lights, and practiced my deep breathing while I waited for my doctor to come in. I couldn’t wait to get back home, away from the lights, the ordinary sounds of life, that brought such searing pain to my oversensitive brain, back into my girl cave and the dark and quiet… one breath, one moment, at a time… but how I longed to set foot in a store, or just ride in the car without sunglasses and a scarf over my eyes…

But, This is what it is.

And what it is, is known as Chronic Fatigue Syndrome in the U.S., although in other countries – and by the WHO – what I have is ME: Myalgic Encephalomylitis.
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In Which I Explain and Complain a Lot

There have been a number of questions friends have been asking that haven’t gotten answered, so here goes, in no particular order:

  • Disability: I have appealed my Disability rejection to the highest level in Social Security, about two months ago. They can take a long, long, time to rule on things, apparently – up to 16 months!!! Not making me very happy to just hang in the wind, waiting. But not much I can do about it.
  • XMRV: Yes, I tested XMRV Positive.  What am I gonna do about it? For now, nothing. Because the science is in it’s infancy where this is concerned, and ARV’s (Anti-Retrovirals) are not simple meds to be messed with unless you absolutely have to mess with them. And, because we’re giving the Valcyte a chance right now – we want to be very sure what med causes what response in me. Recently, we got a piece of good news – the first study, ever, that not only confirmed XMRV exists (scientists are fighting about this), but that there is a definite link to CFS.  This comes courtesy the WPI, whom I’m asking all of you to vote for on Facebook as part of the Chase Community Giving program. They won $25,000 in the first round. Now they – the only organization working directly on Neuro-Immune Disease – are in the running for up to $500,000 in a grant in round two. If you haven’t voted for them yet, please do – and fast! Voting is only open one week. And just because you voted for them a couple weeks ago doesn’t mean you don’t need to vote again – it’s even more important that you vote in round 2 as there’s more money at stake. If a cure is gonna come, it’s gonna come from them! So, Go Vote!
  • Valcyte: As noted above, we’re giving this a chance to work, and it is definitely working. At least, I’m seeing cognitive improvement, and sometimes I think there’s a wee little bit less overwhelming exhaustion. Sometimes. But the cognitive improvement is what is expected to come first. It takes 3 – 6 months for the majority of the improvement, and I’ve now been on it 3 months. However, there is a problem: my platelet count is dropping and is low, but not low enough that I have to stop the Valcyte. Yet. I’m finding that very depressing. It’s as if I’ve been in a dark place a long time, and someone has opened the shades… I want to see more, interact more with life, with friends, to write, to be at least a little bit more ME. And I don’t want to give that up. But I will have to, if the platelets continue to drop. At which point we’ll let my body recover a bit, and then start on ARV’s.
  • Neurologist Appointment Report: My neurologist has really changed in her attitude toward me since I told her I was struggling to get on Disability. She not only volunteered to write a letter, she wrote one that night (about 2 months ago) and I was able to pick it up immediately. She seems much more interested in me as a patient, listens more, asks many more questions, spends more time examining me. She ordered a MRI of my cervical spine (my neck), the day I tore my rotator cuff. I put it off a few weeks while that healed up a little, then had it done. Basically, it says there’s some degenerative disc issues, arthritis, but nothing that would be an obvious cause of the migraines & chronic daily headaches. We’re increasing my Lyrica and hoping that might help, since not much else has helped.

Then there’s the complaining part of this post…

I’m tired. Really tired. We’ve gotten about 6″ of rain this week as band after band of storms have come through. This has made me have a migraine pretty much everyday this week. Including  today. I took a fioricet when I started seeing twinkling lights in my peripheral vision.

I’m cranky. Depressed. Frustrated. Part of it likely PMS – that’s likely also part of the migraine issue.

I’m worried about my platelets dropping and the possibility of having to stop the Valcyte. I don’t want to go back to where I was 3 months ago.

I’m frustrated with my house, the complete & total disastrous mess that really, only Rhia & I can deal with, since it’s our crap everywhere. I want to clean it. I just don’t feel like cleaning it. I have piles of clothes to sort through, stuff that doesn’t fit anymore, I’ve lost so much weight.

I’m frustrated with the slow healing of my shoulder. Twice I’ve intensified the hurt – once while camping, picking up something too heavy as we hurriedly threw stuff in the car in the rain. Then there was the “dog incident.” Someone came to the door, I had been asleep, Kasha was barking furiously, on my left, and without thinking I grabbed her collar & opened the door – and she lunged until I told her no. Kasha weighs117#. Or, she did until the Kleenex & cat litter eating incidents.

My neurologist was surprisingly concerned about my shoulder & the way my ortho blew me off. “How do they know how bad it is if they didn’t do an MRI?” she asked. Good question. If they are guessing based on how much I use it, are they factoring in the fact I’m on pain meds? And doing more than I would, otherwise? Dunno. Will ask my PCP in June – annual physical time.

*sigh*

Did I mention I’m cranky, depressed, frustrated, and courting a migraine again? That about sums it up.

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.