ME vs. CFS – They’re Not The Same! (via Documenting M.E.)

Brooke hosts this very new blog, intimately sharing her experience as a person with M.E. who is currently in hospice care, or, more bluntly put, expected to die from the disease within six months. That is her current situation, but she is also a person who loves dogs, languages, poetry, nature, and music. (I feel like I just wrote an explanation about myself, there!) I’ve enjoyed her few new posts ranging from recaps of who she is and has been, facts about the disease, and how hospice care can be of real benefit. I feel she has a valuable perspective and I expect however many entries that follow will continue to be enlightening and expressive. I also admire her idea to start something new when some might raise the idea of it being “too late”–her choice to express herself is testament that we are always, always evolving. In the entry I’ve chosen to reblog, she explains the huge detriment that calling Myalgic Encephalomyelitis “Chronic Fatigue Syndrome” has caused patients, and how that ever came to happen.

a rainbow at night

” ME is not CFS. By CFS, I am of course referring to the diagnosis Chronic Fatigue Syndrome. Everywhere you go, you see the two names combined. Many patients themselves abbreviate their illness as “MECFS,” “CFS/ME,” etc. This is incorrect. Doing so hurts literally hundreds of thousands of people around the world. Let me explain.

Myalgic Encephalomyelitis got its name long ago based on what experts saw in patients with the disorder, as well as the autopsy results of many of these patients. What the autopsies showed was inflammation of the brain and spinal cord, deterioration of the dorsal root ganglia, and more. The name Myalgic Encephalomyelitis means “muscle pain and inflammation of the brain and spinal cord.” It’s a perfect fit. In 1969, the World Health Organization (WHO) recognized this fact and officially classified Myalgic Encephalomyelitis as a neurological disease.

Then the US got involved. In the 1980s, there was a breakout of ME in the Lake Tahoe area. The US sent a couple people to investigate. These individuals refused to meet with any patients, look at blood samples, or do anything productive. … There was not one single experienced ME expert on this panel. Rather than call the illness by the name already recognized by the WHO, the US came up with the name Chronic Fatigue Syndrome. This is where the two names became linked. “ Read more

via Documenting M.E.

What My Pain is Actually Like

It occurred to me one day several months ago that I’ve never stopped to answer a question people may have, the same question I often wonder about others in my situation: When I talk about being in pain, what am I actually talking about?

In my case I’m talking about severe head pain, and what some call “malaise,” but… Malaise is what you call it when you are sick and you feel “off,” and unwell, and basically.. gross. It’s also a term you can use for having something as simple as a cold or as insufferable as AIDS, much like a fever has drastically varying levels of severity.

In “malaise” standards, what I feel is like my immune system is fighting to save my life but it may or may not actually take me down with it. Pain is usually localized, or at least, if it’s everywhere, it’s an identifiable ache. This? Maybe I should invent a new term.

Deathlymalaise. Yeah that sounds about right.

What happens in my newly coined “deathlymalaise” (feel free to use that), is this:

  1. I always have “the” headache with it, the one I’ll discuss in a moment.
  2. I have a low-grade fever, and I alternate rapidly–or maybe there is only the sensation of rapid cycling–between uncomfortably warm and sweaty, and clammy, cold, with freezing and numb extremities. It’s like when you have the flu and every five minutes you’re either tossing the blankets across the room or clambering to collect anything made of fabric and burrito yourself in it. My GP says this is my immune system. Apparently it’s trying to figure out what to do with itself.
  3. I feel dizzy and there is often a “buzzing” sensation, but whether it’s nerves sending wrong signals or my vascular system trying to sustain normal circulation, is anyone’s guess.
  4. My lymph nodes, particularly the axillary and cervical nodes (under your arms, and around your neck), have a constant, dull ache, and get stabbing sensations.
  5. I get muscle spasms in my neck, back, and all around my abdomen in general, that are so sudden and severe I usually end up screaming.
  6. I feel a burning sensation in the nerves in my face, as if they were on fire from the inside-out. I think it comes from the same inflammation responsible for my headache. The trigeminal neuralgia is thus usually activated and I have to stop myself from clawing at my face–that wouldn’t help much, now would it?
  7. I feel as if I’m going to vomit, but I won’t let that happen–I take Zofran as necessary.
  8. My joints–moreso on my left–swell and get stiff, difficult to bend or move.
  9. There is substantial fatigue during these “bursts” of deathlymalaise, but sitting or–more appropriately–lying in one place is usually not an option because this is the kind of suffering that, on the pain scale, would be at the level that it interferes with your every thought.

I’m a complete and utter wreck. And please remember, this list is only covering the malaise part of the illness, something that has been very prominent since The Big Relapse. It’s not medication withdrawal, because these symptoms are part of the reason I started taking anything to begin with, and it’s not herxing. It’s just disease. It makes me uncomfortable to even type that, but it is what it is. I can’t sugarcoat something like this.

I usually feel aghast–but almost in awe–at the reality that a person could possibly feel so horrendous, and helpless at the thought that a hospital–the place you’re raised thinking can always help you during any health crisis–cannot do anything, because there is nothing to stop what’s happening. How do you explain to someone how terrible all that feels, with the word “malaise”?

Several of my friends who also live with Lyme & Company admit to feeling this, and even writing letters or notes to loved ones during the worst “episodes” because they think surely something must be about to go very, very wrong for the human body to give out all these warning signals.

They usually say, “I feel like I’m dying.”

We really do.

 

The progression of my headaches has been a monster all its own. Their onset began with occipital neuralgia four months after my tick bite, almost seven years ago. Bartonella came with its own, mostly frontal-oriented headaches; I don’t have those any more. But almost without fail, I have had a particularly severe headache for 4-5 consecutive days every four weeks since the Lyme invaded my nervous system. Now, that exacerbation happens about every two weeks, thanks to the Mycoplasma.

I used to need prescription-strength medications for breakthrough pain only a few times a year for the attacks of occipital neuralgia. As things steadily progressed (especially within the past two years), I went from needing them an average of 1-3 days per month, to having 3-week-long bouts of unrelenting head paid which alternated with 3-pain-free weeks, seemingly for no reason. Since my relapse in October, I’ve needed them every day except 1-3 days per month. I guess all of this is why needing them so much frightened me: I wondered–and still wonder–if there is no turning back from this point. Regardless…

This head pain is a throbbing sensation at the back of my head, the base of my skull and down into my neck. I wouldn’t outright call it occipital neuralgia, because my attacks of O.N. are even more severe and almost completely untreatable. But otherwise, it’s just like them. Baby neuralgias? They even exhibit the so-called “ram’s horn pattern,” and the top of my head often goes numb, and I am sensitive to anything touching my scalp. There is no sensitivity to sound, but extreme sensitivity to light. I get bursts of nausea. Since vasculitis has been such a major feature of this relapse, these “headaches” may have some vascular component.

As of right now, later this month my pain management doctor wants to try a shot in my neck. I’m uncertain is he intends a nerve block for O.N. or another route, but since this has gone on so long, it’s time to try something new.

 

There’s not really a pretty way to sum this up. But when I talk about being in pain, to all of this is what I refer.

 

a rainbow at night

Having determination does not always equal curing a disease.

I don’t think some people are prepared to hear that determination alone is not enough to beat a disease. You can do everything right and still get worse, and it’s not your fault. You can’t say being motivated and refusing your circumstances (“I got better because I wouldn’t settle for anything less!”) is going to get everyone well, because it gives those who aren’t so lucky the delusion that they’re somehow responsible.

This post is for you.

The people who stay sick still matter. The people who die from their disease still matter. It is not your fault.

No one talks about these things out of fear of being attacked for it… I guess it’s a lesson to be learned by those who have that journey. As Oscar Wilde said, “Nothing that is worth knowing can be taught.”

a rainbow at night

Guest blogger: “It is healthy to talk about what you are going through.”

I’m here to make another installment to my Life Lessons section, but this time, with the words of a very special guest blogger. And I don’t say very special because they are well-known, famous, or something like that. But they are, in my opinion, one of the most amazing people to exist. My dear friend–who has a birthday today, no less!–who has impacted my life in more ways than I could count, wrote this several days ago, and I thought it was way too important not to share (especially since they agreed to write something for you all sometime this year!).

I’m really tired of “not talking about your illness” equaling “being a stronger person.”  No.  It is healthy to talk about what you are going through. 

Illness is not something to be shoved away and ignored like it is dirty and shameful.  No.  Illness, disability, old age, and dying are a part of life.  It is natural.  It has been with us forever. 

Every single human being that has ever lived has dealt with it in some fashion.  Every single human being has died, or will die.  If they live long enough, those still among us will will watch a loved one die.  They will get older.  They will encounter disability in themselves or others.  They or somebody they love will get sick. 

For me, it would be unhealthy not to talk about something so inevitable and universal. 

I talk about my illness.  I am sure it makes some people uncomfortable and has driven some people away.  But it affects nearly all of my life right now, and I see no reason to pretend like it does not.

– the author of Black Cat Saturdays

 

No one should be made to feel like they have to deny a part of themselves or a crucial part of their life in order to win the affection and/or acceptance of another. As with anything in life, it’s all about balance. We have to find a middle ground between talking about what we are going through, honestly, and yet not being consumed by it. I know people on both extremes–those who never talk about it, and those who talk about absolutely nothing else. It is detrimental either way. The person who never talks about it–perhaps to keep people around, not make others uncomfortable, or stay in denial about their own circumstances–ends up feeling cheated, abandoned, and can lose self-respect. The person who talks about nothing else, forgets who they are entirely, and sees themselves only as “the person with such-and-such disease.”

But we are more than sick, or disabled, or terminally ill. We still exist, and we still have purpose and love to share. But in order to get to that place, we have to realize–and hopefully be accompanied by people who realize this, too–that we are also people who have to grieve in a healthy manner, who have to express ourselves as we go through this part of life, and it’s not our job to make sure everyone else stays comfortable while we do it.

As written above, we will all go through these things at some point. It’s just that we, who are already going through it, simply don’t have the time or extra energy to spend worrying about someone else’s opinion of how much we’re “allowed” to share before they feel inconvenienced…

a rainbow at night & black cat saturdays

I feel the need to share again: “The Silence of the Dying,” by the Sara Douglas.

“Pay attention to me, pay attention to how I got this, and how hard it is for me to get my health back, so you can avoid it.”

I was going to make a more drawn-out post explaining why I’m not participating in any of the awareness campaigns of May concerning my illnesses…but then I came upon the realization that I don’t owe anyone justification for my actions! Or wise inactions, as they were.

And I am comforted by the knowledge that many other people with these conditions are feeling the same way I am: For those who can advocate–and I do it at random, it does have its purpose, particularly in our government to let them know we’re still here–that is fine. If it gives you purpose and belonging, then do it. For others like myself, my entire life is an advocacy campaign. I don’t need a month. Or a day. I get 365 days, 7 days a week, 24 hours a day, of “this is what this disease does.”

Pay attention to me, pay attention to how I got this, and how hard it is for me to get my health back, so you can avoid it. Know that I was just like you, once. Know that I didn’t think it could’ve happened to me, either. That’s the biggest advocacy I can do.

Talking about Lyme or M.E. every second of every day for a month (and nothing coming of it, because people who have their minds made up are NOT willing to hear anything else) is not going to help me at all. I am not my disease. I am not Lyme disease, or mycoplasma, or myalgic encephalomyelitis, or autonomic neuropathy, or dystonia.

They’re just things that have passed into my life to help shape and change it into something else. That’s all.

I’ve spent the past decade in advocacy-mode. I’ve done my part, I think. In my absence there will be others. I personally think people learn more if you’re not yelling at them in desperation. I’ve been blessed to help several people find out they had Lyme, for example, and it had nothing to do with advocacy. You can’t force the information on anyone–if they want to know, they will seek. And if they’re interested, I am here.

So instead of advocacy, myself and several, several others I know, are focusing on what makes us feel normal. Sure, our every waking moment may be imposed upon by symptoms and dysfunction, but that is not all we are. No matter how sick I’ve ever gotten, nor how sick I will ever be, there’s always more to me than an illness. This blog is my health diary, yes, that is the POINT of this journal, to track my symptoms and such, but I don’t want anyone to get the idea that it’s all that I am. I have friends and family and pets and hobbies and interests (often obscure ones) just like anyone else. And I am an artist. Not because the title makes me feel important, but because at my core, that’s how I express myself, it’s who I become when my physical limitations allow.

“Every job is a self-portrait of the person who did it. Autograph your work with excellence.”

So yes, no posts about my conditions (though I did finish the “What is M.E.?” section a while back). It’s time to cultivate the parts of my life that inspire and enhance, what makes me feel human and normal, not advertise what makes my life a living hell for the other 90% of the day, mostly to people who already know what I go through, anyway. And I’m glad I’m not alone in thinking this.

I’ll leave you with this link: 60 Ways To Make Life Simple Again

a rainbow at night

Thoughts on Emily Collingridge, and being judged for our disabilities.

These two topics complement each other in an unexpected way.

First, the recent death of fellow M.E. sufferer Emily Collingridge has shaken me. And I’m ready to be honest about why. Usually I would skip this part and post the conclusion of my thoughts, but it’d probably be therapeutic for myself and for those reading (whoever you are) to read a different part of the process.

There are many friends I have with M.E. (or, what is supposedly M.E.) that have never known the level of sick that even I have, much less something like what Emily endured in her final years. And that’s good, really! But it’s scary to think that this could be me, because of my susceptibility to this level of sickness. (And goodness knows not anytime soon, because she had the illness twenty-four years and I’m just at ten, but…) It’s not even the death itself, but the way it happens.

Most illnesses so severe will take you out quicker than this. There aren’t many that drag on and on in such a way… In 1995, as Professor Mark Loveless served as Medical Director of HIV/AIDS Programs at Oregon Health Sciences University, he said in his Congressional Briefing that someone with M.E. “feels effectively the same every day as an AIDS patient feels two weeks before death; the only difference is that the symptoms can go on for never-ending decades.” It broke my heart to hear of her suffering so much, for so long, and, just like Sophia, knowing that if she got hospitalized it’d be the worst thing to happen… Then sure enough…

I don’t want that. I want to be home, wherever that might be by the time I’m at that stage in my life. Who knows, maybe they’ll have hospice options for people like us in the future?

My friends say that even when they were at their absolute sickest with Lyme, they could still listen to music softly or watch television with sunglasses on, and they can’t imagine being that ill and suffering that much, not being able to do anything whatsoever. I can’t imagine it, either. I was only like that for a short amount of time, my symptoms being exacerbated by the trauma of those additional infections, and it just sucks all the happiness out of you (being unable to listen to music, in my case, was particularly difficult). It’s so hard to hear of someone enduring that for so long, to be on morphine from so much pain, and to not make it through… Had she not the illness for twenty-four years, she likely would have been able to bounce back to a less-afflicted state of sickness as she previously had, as many do, going in and out of the severity levels. Yes, she was young, but it is still a quarter-century’s worth of disease affecting her body even as it was still forming.

When you get it young, like Emily did, like I did (though certainly not as young as six years old), you usually do experience a remission (most, at around four years after the onset) and a lot of people stabilize after that. Most stabilize after that, actually, into a moderate or mild affliction. It’s just this 30% that get it really, really bad, and it continues to progress over time; almost all the deaths occur from this group. Some never remit, but for the others, something usually triggers it again after the remission or semi-remission, but that could be anything from a year later to a decade later (like a cancer might stay gone for long lengths of time, or come back within months).

I started this blog with severe M.E., my condition having been worsened by secondary infections, and I was very privileged a couple of months ago to remove the “severe” classification from my blog description, “Chronicling a very special way of life, that of someone living with M.E.,” instead of “severe M.E.” Even when I look outside, I can’t help but be reminded of the people who can’t… I remember a year ago, just wanting to be able to brush my teeth whilst standing up. And I have a chance to get better, still. I’ll be in the moderate group, if I can beat the Lyme disease into submission, and that would be good. (Well, not good, but, given my options…)

I never knew Emily personally, though I was a big fan of her her book for sufferers of severe myalgic encephalomyelitis, and linked to it here several times. It is an indispensable aid to those forced to navigate these unstable waters, one that could have only come from someone who knew its unpredictability and cruelty first hand.

It’s really not often I have to think of the M.E. anymore, because the things I do to keep it in check are just.. routine, after all this time. Really, fighting the Lyme disease is my focus and takes up most of my energy. I suppose that’s why being brought back to the reality that even once I get the Lyme subdued, that I’ll still have this terrible disease, has startled me so.

My niece, who I live with, has been sick with a viral-induced cough, and I’ve been thinking, at least it’s not like the flu (which would hospitalize me) so it wouldn’t be that serious if I did accidentally catch it… But then I remembered that it was a viral ear infection that ultimately made my M.E. relapse five years ago. And again, Sophia Mirza, too, was striken into irreversible relapse by an ear infection. So there really is no such thing as a “better” virus when you have ME. Just the thought that if I were to catch something so miniscule…

It was a lot of triggers at once.

 

And it came at a particularly awkward time, after reading an article about a woman with muscular dystrophy who paints:

“With her condition, most people would just be vegetating, watching TV, enjoying checks from the state. But she does a lot of work. She stays strong.”

I was furious at this.

It’s just more proof that you’re only allowed to be disabled and worth something at the same time, if you still do things. If you can’t, if you’re really, really sick, then you’re just “vegetating and watching tv and enjoy checks from the state.” Nevermind that we need those “checks from the state” to survive, or that watching tv might be the only relief we have from the every day, nonstop suffering…

People don’t want to hear of the severely disabled. They only want to hear of people who are disabled and yet still do things. They don’t want to hear of people who are bedbound to the point of being unable to do anything at all but exist, like so many people I know, and the person I have been (and will be again, one day). People like Emily, when she became too ill to even eat on her own.

Finding that article all started because I was wondering if there was any way I could still do art with the M.E. besides just taking a very long time to complete things. So I googled muscular dystrophy, which, with its similar progressive muscle weakness, was the closest thing I could think of to M.E. that might have more information out there about how to manage it while being an artist.

Then I find an article whose interviewer says that if I can’t do it, I’m just lazy and not strong enough in character!

It was infuriating, and the reason I wrote my “Media and Resilience” rant a long time ago. I really don’t take it as a compliment anymore when people say I’m “so strong” because I’m still doing something

Because what, when my M.E. gets to the point that I can only lie there and breathe, then I don’t matter anymore?

It’s just horrible being reminded that there are people out there who would look at you and think you, as a disabled human being, are inferior, weak, and lazy, for the sole reason of you existing without also inspiring them.

As fellow blogger and severe M.E. sufferer Laurel stated, Emily embodied “strength, spirit and determination — all of which she continued to demonstrate to the very end,” and which was not determined by how much she did.

She did do a lot when she was physically able, even though it took so much out of her. She thought her causes important enough to spend her very valuable resources on them, but when she became unable to continuing doing in her last years, that did not, and does not, make her any less strong or determined.

Lastly, I would ask you to take the time to read Emily’s Appeal, which she wrote over the course of several weeks while she was still able. Additionally, Emily’s story, from her own words, can be found here.

I’ve no idea what kind of conclusion statement would be appropriate for such an entry… Most of this post is a combination of things I’ve written in other places over the past week, that I edited to make into a blog post. So that so much needless sickness no longer occur, I hope that things change for us in the near future.

Somehow.

a rainbow at night

Video: How Lyme Disease Changed My Relationship with Nature (Post Trauma Experience)

Sundays are usually busy days for my blog, so I wanted to post this so people would see it tomorrow, if they happened across my site. This video is not mine! But it helped me feel less alone, because my view of nature has drastically changed. (I can’t even get bit by a few fleas without contracting whatever the little beasts were harboring, much less ticks, which are so much more inconspicuous!)

I am so glad to know I’m not the only victim who feels this way. Normal people (wasn’t I that, once?) just don’t understand.

“I had no idea how easy it was to contract. And that it’s present everywhere. Trees, grass, dogs, people… Just about everywhere. So when I journey out into the world now, wherever there is nature, I have to be extremely careful. And I feel very conflicted, because the very thing that used to soothe me, and give me a place to go and get perspective on life, is now a place of danger. Oh, it always was, I just didn’t know it.

And when I go out, I observe people putting themselves at risk… But I can’t do anything about it.

Because if I say something, people think I’m loony. It’s just simply hard to believe, that you can get SO sick, by being in nature.”

Sometimes I wonder if people thought ticks carried cancer, if they’d be more cautious? Or if it was common knowledge that Lyme disease = Multiple Sclerosis (MS), Parkinson’s, Lou Gehrig’s Disease (amyotrophic lateral sclerosis/ALS), Alzheimer’s, and disfiguring Rheumatoid Arthritis (RA), just to name a few. :\ Chances are more likely than not you won’t ever be diagnosed with Lyme if you’re not looking, but you or someone you love will be diagnosed with one of those (or CFS, or Fibromyalgia), and then what?

Special thanks to LymeDisease.org, formerly CALDA, for sharing this on their Facebook page.

a rainbow at night

Remission from Fibromyalgia?

I don’t talk much about Fibromyalgia (FM) because it’s been so many years since I had it. A topic I read about even less, is the remission from this syndrome. But I still remember what it felt like and what it entailed, particularly before its supposed symptoms got muddied by research done on people who have innumerable other conditions, or co-morbid conditions.

I suppose I’ll start with an explaination of what is it/how it feels. Then I’ll explain what I did to help my own case, that eventually led to a remission.


Fibromyalgia is a a pain syndrome that is usually triggered by a stressful event, such as a car crash, surgery, accident, severe infection, or another illness worsening/starting; more or less, it’s the consequence of something else. The pain is primarily in the muscles, and the tendons that support the joints, lending to severe pain and joint stiffness, but without inflammation. The syndrome does not actually damage the joints or muscles–it just feels like it! There is an extreme sensitivity to pressure (allodynia). Things that would normally not hurt, such as getting a gentle hug, become extremely and lingeringly painful. The pain never stops, and is absolutely everywhere, all the time, but may focus more around the tender point locations necessary for diagnosis. Someone with FM will be hurting when they are sitting, standing, and lying down. Temporomandibular joint disorder (TMJ) is very common, and a major contributor to headaches.

Sleep problems include an inability to fall asleep, but particularly staying asleep. Someone with FM may wake up every hour, all night long, without anything to help cure the root of the problem, which is the brain’s inability to conduct normal sleep waves. FM is thus also accompanied by a great degree of fatigue, that may or may not be managable. Cognitive problems are multiple and very prominent, including things like an almost complete lack of short term memory, working memory, any ability to recall the names of every day items, and silly things like placing the television remote in the freezer and the frozen peas on top the entertainment center. (Or pouring your milk in the trash and the tea down the sink… I may or may not be speaking from personal experience…)

Other symptoms include tingling and numbness of the extremities (your arms and legs), muscle spasms, cold sensitivity (someone with FM can always tell when the weather is about to change), and a high rate of restless legs syndrome. Stress is not the cause of fibromyalgia, but stress exacerbates any chronic disease, so proper management of stress is essential to keeping your pain, fatigue, and sleep problems as mild as possible.

Fibromyalgia is not an inflammatory disease. It is also not a progressive disease, though symptoms wax and wane over the course of several months, and can be disabling. If you are experiencing inflammation and/or illness progression, see another doctor for other illness possibilities besides fibromyalgia, which may only be a symptom of another, more serious disease process or underlying infection.


We know Fibromyalgia can disappear when it is associated with Myalgic Encephalomyelitis. But what about otherwise? Does treating the main disease causing the FM, make the FM go away? That certain wasn’t the case when I fell ill; my FM stayed when the M.E. went into remission, and went away after I got Lyme disease! What makes this even more difficult to determine, is its consistent over-diagnosis. For instance, there are probably thousands of people who have been diagnosed with FM who actually have M.E., who just had the unfortunate circumstance of being diagnosed with FM first, and just stopped looking for other explanations. And nearly everyone I know with Lyme disease initially had a diagnosis of Chronic Fatigue Syndrome or Fibromyalgia (or both) before they found out the actual cause of their symptoms; I wish I were only exaggerating!

I’m not sure where I fit in with that group. Things happened to me in the reverse order that would otherwise “make sense.” But I will write about that next, in a post describing the differences between CFS, M.E., FM, and Lyme disease.

For right now, I want to talk a little about how I treated the syndrome, in case that might be of help to others. I don’t claim these to be the cure–I think it most likely remitted of its own natural accord–but they did help me immensely, and I could always, always tell when I was forgetting one of them. Maybe someone else will also find relief?

  1. Magnesium.

    You’ve probably read about this all over the internet, right? Sure you have. Well, it’s not just hype. I’m not going to pretend to know the mechanics behind why it helped, but daily supplementation with magnesium not only reduced my Migraine attacks (a condition I was born with) from twice a month to twice a year, but greatly reduced my muscle pain. I’ve read many an article overanalyzing the right “type” of magnesium to take for Fibromyalgia, but I can only tell you this: I bought the plain ole Magnesium oxide with chelated Zinc from Walmart and it worked without fail. One important thing to note before you dismiss this one: I’ve always had normal serum magnesium in blood tests. The amount in your blood is not an accurate way to determine the actual amount of magnesium in your body.

  2. Foam mattress topper

    This might should actually be number one… It’s that important. You have to understand that fibromyalgia is made worse by contact (in general, really, but especially) with the pressure points…which, if you’ve been diagnosed, you might know are practically everywhere. It should then be easy to grasp why relieving this pressure whilst sleeping is absolutely essential to easing your symptoms, especially when you’re pressing on them for eight hours at once. Invest in this, no matter what. You will not regret it. I couldn’t sleep on something that didn’t have my two inches of bed foam for even one night. When I would try to visit friends and family and sleep there, I would wake up after a couple of hours in excrutiating pain, from the pressure on these tender points. Sleeping better will also help your cognitive abilities (memory and mental functions) improve.

    • Also, for TMJ-related pain and/or head pressure, invest in an amazing pillow. You deserve it, and you need it! It’s all about support and relieving pressure on a body that interprets pressure as pain. I’ve personally been using Simmons Latex Foam Pillow (I cannot stand memory foam) and mine lasted 7 years before needing replacement–you will get your money’s worth!
  3. Protein.

    You know what honestly made me start increasing my amount of protein? It was back in the day when Montel Williams still had Sylvia Browne (a world reknown psychic) on his show on Wednesdays. Every time someone mentioned having fibromyalgia (which was largely unheard of back then), she’d tell them to eat more protein (and less sugar). I figured, it couldn’t hurt me one bit to try it, so I did. And I’ve been doing it ever since. (I’m not vouching for her abilities or inabilities one way or the other, but that information helped me. I now also know that people with infections requires 50% more protein in their diet than those without, so that’s another reason for me to continue.) I made a pact with myself to get an adequate source of protein every single day for two weeks to see if it made a difference. Obviously, it did! For me, it was chicken, and luckily there are hundreds of ways to prepare it so I didn’t get bored. For vegetarians it might be soy, or something similarly protein-rich that contains all essential amino acids, but I noticed I had more energy and was not as weak. I highly recommend you try the same test.

    • We all know too much sugar is bad for us. I switched to honey instead of sugar in my coffee, and cut down on my intake of white-flour, empty-calorie foods (which admittedly wasn’t very difficult since I didn’t eat a lot of that stuff to begin with). Honey is structurally different than sugar, containing mostly fructose and glucose (instead of sucrose), so your body can use more of its properties for energy instead of donating it to your fat reserves. =)
  4. Aloe vera.

    If I had a dime for every person who told me “thank you” for telling them about this one! Fibromyalgia is, without fail, associated with some degree of irritable bowel syndrome; if ever a case existed without IBS, I’ve never heard of it. This stuff will help if your digestion is too slow or too fast (and most IBS sufferers cycle in-and-out throughout, sometimes, even the same day). I’ve had people tell me they’ve even been able to start eating foods they previously couldn’t touch! Hopefully, if you try this, you’ll have the same reaction?

    Puritan’s Pride recently changed their aloe vera gel capsules, and I’ve noticed that even though the strength hasn’t changed, I now need two of these daily to give me the same effect as one of their old-model capsules. :\ But I’ve been taking one (well now, two) a day for at least eight years. It has many other health benefits, but mostly, it’s to protect the intestinal tract and help keep things from acting out, whether one extreme or the other. Note that it’s very important to consume the inner aloe vera leaf gel, not just the ground leaf, like you may also find if you’re searching for an aloe vera product. People have also told me they get relief from drinking it, but the gel capsules are much simpler, if you ask me.

  5. Flexeril.

    This is one of the first things your doctor used to give you for Fibromyalgia before Lyrica came around. It’s a muscle relaxant that some say is similar to tricyclic antidepressants (but you’re not taking it to cure some delusional illness belief), while others say it’s more similar to cyproheptadine (which is typically an allergy medication that has an extensive list of other uses)… My vote is on the latter, because I’m extremely sensitive to it, like I am to cyproheptadine. The point is this: People with fibromyalgia do not enter the restorative stage of sleep as often as healthy people, so whenever you do, you have to make it count.

    Flexeril (and other similar drugs, but this is the one usually handed out) makes it to where your muscles relax during those rare restorative sleep stages, allowing your body to heal more than if you hadn’t taken anything. The difference is noticable, particular when you’re in one of those “waking up every hour” phases that leave you a zombie during the day, and contributes substantially to the “fibro fog” part of the illness. You may not be able to keep from awakening fifty times a night, but at least you’ll get the most out of whatever sleep you do get. Now, I eventually had to switch to Robaxin (methocarbamol, another muscle relaxant) because I couldn’t tolerate the sedative effect of Flexeril, but just be sure to try something.

  6. Exercise daily.

    If you’ve made it this far down the list, I hope you’ll stick with me through this section! I cannot stress enough (1) how much exercise is essential for fibromyalgia, nor (2) how difficult it is to get started. Second to no other treatment does it improve fatigue and stamina, and only second to the mattress topper did it improve my pain (i.e., it helped a lot). I could always feel my symptoms worsen when I hadn’t exercised for a day or two. The type of exercise I’m talking about is, for all intents and purposes, graded exercise therapy. This is the type of exercise that studies claim helps chronic fatigue syndrome, but don’t mistake this for being a treatment for M.E., which again, is not the same as CFS. I absolutely could not exercise until my M.E. began to go into remission. Only then was I able to very slowly start doing exercise, gradually adding on more and more activity.

    The first goal is to have fifteen minutes of activity a day. At first, I could only walk laps around my house in five increments of three minutes each, spread out across the day. Next, I moved on to three increments of five minutes each (i.e., more activity at once). Also, every morning I would sit up, and very slowly rotate all of my joints, to fight the terrible morning stiffness; it was practically the only way I could move, particularly during the colder months. Then I started adding in the gentle stretching, using a similar method: First, five minutes a day of very slow, gentle stretching, only as far as my muscles could go, and eventually I was able to stretch for a full fifteen minute routine at once, with some music to make it more enjoyable.

    Do not try to do it all at once at first, nor force yourself to stretch like a “normal” person would–you are not normal! Even with this graded approach, it was still unbelievably painful, and followed the next day by a huge increase in pain. But with fibromyalgia, you don’t stop just because it hurts the next day; you cannot, or you will lose whatever progress your body has accomplished. The first two weeks were absolute hell. I was exhausted and beyond sore the next day, and moreso the day after that, and so forth, until “the pain stage” (as I not-so-affectionately call it) finally passed. Then I started to reap the benefits of my very hard labor, and noticed that my symptoms were actually worse if I didn’t exercise. (Only someone with FM can understand how mind-numbingly painful it is just to try and stretch for five minutes at a time!)

    Important: This is the exact opposite of treating myalgic encephalomyelitis, and in my opinion, the biggest proof that M.E., CFS, and FM are not the same thing. If your muscles become inconsolably weak and begin to fail the next day, and worser still every additional day to the point that they may even literally stop working, you have more going on than “just” Fibromyalgia. Additional exercise will causes illness progression in M.E., so STOP. (Also possible, if not M.E., is that you may have Lyme disease and/or Babesiosis, chronic viral infection, hyperthyroidism, et cetera; i.e. other illnesses that cause muscle weakness in response to exercise, with no eventual benefit.) But this is NOT the same as experiencing more pain or fatigue like you would with Fibromyalgia, because let me be the first to state the obvious: You are going to hurt, and be exhausted, and not want to continue. But I can also tell you on behalf of myself and everyone else who’s ever successfully initiated an exercise routine with Fibromyalgia: It will help you.

Am I cured forever? Maybe. I have days where something strange will happen–a herx from my medicine, a day of severe stress, a storm passing through–where I will get a rush of pain that feels just like fibromyalgia, and leads me to think the mechanisms behind it may not actually be gone as much as they’re just not currently active. But I no longer suffer from its trademark symptoms. Even the type of cognitive problems I experience now, with the M.E. and Lyme disease, are different than that which accompanied the Fibromyalgia. And I no longer have chronic pain in all of my muscles and tendons, irritable bowel syndrome, or trouble waking up 10-20 times per night.

And I thank God for that, because if I had to deal with that terrible illness on top of the severe disease I already battle, I don’t know what my life would be like, or if I’d even still have one. I can only keep hoping that it never gets re-triggered, especially since there is practically no information out there about the reoccurence of FM in myalgic encephalomyelitis… I have the feeling though, that with all I’ve been through the past five years, if it were going to reappear, wouldn’t it have already done so?

a rainbow at night

My Last Pill: An “I have overcome bartonella” post:

In the summer of 2008 I acquired an infection with the bacteria known as “bartonella,” which is transmitted by infected animals, biting flies, ticks, or–in my case–fleas. I would not be exaggerating to say it tried to kill me, infecting my entire body, particularly my heart and nervous system, putting me in a wheelchair, then bedbound, on supplemental oxygen, and very nearly having to be tube fed after being unable to eat.

Today, I finished treating it.

Like cancer, it is prone to relapse, and I don’t know if it will return one day. But in this present moment, I have conquered it. :)

a rainbow at night

How I Forgave the Doctors That Called Me Crazy

Now, I’m not about to type some grand, philosophical debate about the necessity of forgiveness that will go over everyone’s head… Or at least, I hope it won’t turn into that.

This year I feel I’ve really evolved as a human being. A lot of my focus has been to get rid of the anger I’ve felt… Another major thing I finally let go this year, actually, was the resentment aimed at those who got to enjoy things I may never get to do. Ever. Sure, I couldn’t be angry at friends or family, that was easy enough, but put me in the room with a stranger who’s telling me about how they’re going to a party that night with all their friends, and… You get the idea.

I owe that in huge part to reading Toni Bernhard’s How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers, for actually giving me the tools to know how to do that–how to acknowledge those emotions without feeling I was a bad person for even having them, and focus on how much more wonderful it was that they did get to do those things, than it was that I could not. But I honestly don’t have any explanation for how I came upon the realization I’m about to share in this post, besides that my brain has apparently developed some kinder, more mature, more well-rounded ways of viewing things I’ve thought a thousand times before.

Probably close to 95-99% of people who have either Late Stage Lyme Disease or Myalgic Encephalomyelitis–or, if you’re like me, both–didn’t arrive at that diagnosis very easily. (As those are the main two diseases I have, they’re my focus, but feel free to apply this to whatever similar invisible illness with which you’re dealing/you’ve dealt.) No, it probably went something more like:

  1. Go to the doctor expecting a quick fix for unusually-persistent symptoms
  2. End up getting sent to every specialist known to medicine because primary physician has no idea what’s wrong with you
  3. Get called crazy by every single one of them when the tests either come back negative or don’t show anything significant enough to explain why you feel like you’re dying
  4. Possibly get prescribed the most strongly contraindicated “treatment” for your disease because no one knows what you really have, yet, which makes you immeasurably worse
  5. Get called crazy a few more times, and thus
  6. End up being evaluated by five psychiatrists who don’t find anything wrong with your mental state, or blame everything on a mental disorder that doesn’t actually cause anything you’re experiencing
  7. Finally get the correct diagnosis years later, through what seems like the most random series of events that ever played out in your life

Am I right?

All in all, the stage of acceptance known as “Anger” doesn’t really go away like some of the others. The resentment and anger at all the doctors who could have helped you sooner had any one of them just not been so determined to say it was “all in your head”; the anger at those who called you crazy and said there was nothing wrong with you when you actually had a progressive disease; the resentment at those who thought you were faking just because the tests were negative; the anger you experience all over again at remembering any and all of the horrible doctor visits where you were pleading for them to do something, anything, only to be told you just needed to get out more, and probably see a psychiatrist.

Trust me, I’ve been there. So when this sort-of-epiphany hit me, it was like a ten-year burden had been lifted off of me:

Did I truly, honestly think, that any one of those doctors who called me crazy, had any idea that I was actually suffering from a progressive neurological disease? Did I really believe that those people, those fellow human beings, somewhere inside knew that I was dying, and just decided to recommend exercise and antidepressants for the sheer fun of it?

If they had known that what a terrible disease the original version of “CFS” was–that it was myalgic encephalomyelitis, that it was made worse by exercise, that it was progressive in 25% of cases and fatal in roughly 1 of 20–would they have just told me to “get out more,” or “exercise more,” or “get back to work, you’ll be fine”?

If they had known that Lyme disease or Bartonella exists in the south–that it would lead to multiple sclerosis, that the tests are often negative even if you do have it, that I still needed long-term antibiotics based strictly on the clinical presentation–would they have told me there was no way I could have it, that it was harmless even if I did have it, or that it was “only fatal in people with AIDS” and that there was “no reason to treat”?

Absolutely not.

What kind of monsters did I think these people were? No one in their right mind, especially a doctor who has sworn to Do No Harm, would know the truth of a disease so destructive and still call their patient crazy. If someone was suspected of having MS, or HIV, or cancer, or a neurodegenerative disease, these physicians would have done everything they could to identify and fix the problem. If they had known what I was up against and what the right approach to treatment was, they would have done it.

But they didn’t know. And that wasn’t entirely their fault.

Sure, there are always some doctors who go in it for the money and don’t care that much one way or the other, but they are few and far between. And sure, a doctor who keeps up to date on the latest research and alternative therapies is going to be more open-minded when it comes to a rare case–such as my own doctor, who is actually using me to teach her interns. And we can’t forget that it’s not 100% the doctor’s responsibility to figure out what’s wrong with us based on absolutely nothing: We also have to be honest and not afraid to be our own advocates.

My LLMD says, The passive patient never gets better. (And that pretty much applies to anything in life: If you only sit and wait for life to bring you what you want, and take no initiative to help make that happen, you won’t get anything.) But when it comes down to it, there is a whole cluster of reasons to why most of the specialists we saw were completely incapable of giving us an accurate diagnosis, the biggest of which is lack of information. The reason we patients advocate so much is because in our hearts, we know that if someone else has the information we didn’t, they hopefully won’t have to wait so long to get accurately diagnosed and treated.

Now, there are some exceptions. There are doctors who know the facts and, because of legal reasons and public position, choose to turn and look away whenever one of “us” come their way. But that is also very, very rare. Most all of the dozens upon dozens of specialists had no idea what was wrong with me, what was wrong with you, and could only give us the best advice they knew, based upon what they thought was happening. In hindsight I really do understand how someone could think I needed psychological intervention, if they had no clue that my disease really did do all the things I was reporting.

You don’t throw a paralyzed child into a swimming pool (as happened to one internationally-recognized M.E. patient) to try to “snap them out of faking ill,” if you honestly believe they are sick–you do it if you honestly believe they are making it all up, because you have no knowledge of what M.E. actually does. If there is anyone to be upset with, it’s those in charge of spreading real facts about these crippling diseases, and who don’t do it; not the doctors who have been armed with information they believe to be true, who just so happen to be completely misinformed about what we have.

So I finally just stopped being angry at them for not doing what they weren’t even capable in the first place.

You may have heard before that, Forgiveness is letting go of the hope that the past could have been any different (a quote popularized by Oprah though she’s not who originally spoke it). And in my realization, I also let go of the thoughts that any of the doctors who had mistreated me out of their ignorance, could have ever treated me any differently based upon what they knew. If they knew better, they would have done better. I am now going to instead focus on how blessed I am to finally have my diagnoses, and be glad that I am one of the lucky ones who still had time left to begin treatment. I hope this can help some of my readers move past their anger, also, perhaps just a little more quickly than they would have, otherwise.

Be blessed in the New Year, and always!

a rainbow at night