I’ve had CFS/ME for 21 years. Nearly 6 years ago I began to recover from a three-year stint of being completely bedridden – the last few months of which I was near death. The first time my doctor saw me he was amazed I was still alive. I was bedridden, emaciated and intolerant to even minimal levels of stimulus including light, noise and vibration.
With his help I regained 85% to 90% functioning and have been improving each year. The only vestige of my former illness, is having to rest a little more than usual after consecutive days of extended mental or physical exertion.
- See Mike’s Original Recovery Story – “Listen To M.E.” here.
Six years later I thought I’d mostly put the illness behind me until I had an incident that would change my life again. It was just minor surgery – eye muscle surgery. I would be under general anesthesia for a mere 25 minutes. For any normal human being this would have been a simple procedure with an expectedly quick recovery. But, it was anything but simple for me. In fact, to my immense surprise and horror, it propelled me right back into severe CFS/ME.
I had gone into surgery feeling really good, living my life close to the level of a normal person. My life included working part time comfortably, regularly working out at the gym and attending most of the social activities I was invited to.
In this blog I will describe what happened and I will share insight on feeling this disease at every level. Also, I will share additional insight from speaking with top researchers, from advocacy work and from healing myself over the past 21 years.
This is my viewpoint as a patient based on how I interpret my experiences! Fellow patients can choose whatever path they want in dealing with this disease. They can and obviously come to their own conclusions, no need to listen to M.E. 🙂
It’s hours after surgery, I feel a little groggy but in general feel nothing unusual. I’m just relaxing watching a lot of TV and soon it’s time for bed.
Day 2 – I wake up feeling a bit worse. Oddly enough, I can tell that my balance is a bit off, and I feel sluggish, kind of like I have a bad hangover. It’s no big deal but I am surprised that instead of feeling better, I’m feeling worse.
Day 3 – It’s become clear something is going on. I go to the doctor that has been treating me for 6 years. I tell him that I know surgery can be rough but I’m feeling some of my old ME symptoms. I get my typical treatment and he tells me, don’t worry your battery is just low from the surgery. I think that’s a vague statement. I mean what does battery really mean!! He seemed very confident, though, I even thought he had a little smirk on his face!
He’s confident that I will soon get well but I’m not. I’ve been through this rodeo before and I know if I continue to get worse I won’t be able to fend for myself. I need to find a safe place, so I go to my best friend’s house where I know his family could care for me if I get worse. Sure enough I get much worse!
Day 4 – is a nightmare…I actually feel like I’m 75% as severe as my worst moments with the disease. I walk a couple feet and my legs literally get stuck and are unable to move forward. My brain feels completely disconnected from the surrounding environment. I’m experiencing extreme malaise and, of course my light, vibration and noise sensitivities are also back.
My ability to communicate, whether spoken or typed, is limited to about 45 seconds. Pushing beyond that causes an indescribably strange, stimulated feeling I know very well from my past illness. I have to limit laptop and cell phone or severe symptoms occur.
Let me tell you, there is no scarier feeling in the world than going back into the abyss after being recovered. I’m shocked how quickly this is happening. What took me a decade earlier has happened in only three days. Even though I’m not as severe as my worst moments with this disease, the debilitation is severe.
The biggest difference this time, though, is that I still can think without too much confusion. The questions ratchet through my brain. I had been nearly well for six years! How could such a short, simple surgery have caused me to collapse so quickly? Will I be stuck like this forever or will I recover? I have no idea what’s going to happen. The minutes and hours begin to add up as I lay in bed staring at the ceiling. I start thinking back to when my illness started 21 years ago…
It was late summer. (I’ve never spoke with a true atypical CFS/ME patient that did not initially get sick in the summer or fall.) I felt nauseous and started to get a fever, a real bad one. My doctor urged me to go to the hospital which I never did. Looking back it’s kind of funny I didn’t go to the hospital because I stayed away from hospitals like the plague as an advanced ME patient. Anyways, the fever lasted roughly a week.
After that first week I still had some nausea as well as this pesky heart symptom which felt like pericarditis. I also felt a twitch in the lower half of my spinal cord when I sat up straight. Looking back, I realize that a virus probably took up primary residence in my gut and then got real greedy and took up secondary residences in my heart and spinal cord! Yea this virus was a real Son Of A Bitch!
I’m pretty sure I know its name, but I’ll just call it SOB. SOB has many friends such as CMV, EBV, HHV6-8 who like to tag along in the chaos and hitch a free ride on its coat tails. They cause a real commotion, always wanting all the attention. They even like to flare up during SOB’s initial infection and sometimes even end up taking the blame for their good friend who only comes around in summer and fall.
A battle then ensues – a battle that seems to have three components: SOB virus, autoimmune response and injury. Conquering one without the other seems futile.
CFS vs ME
We all know Chronic Fatigue Syndrome is an absolutely ridiculous name for our disease! The exhaustion we experience seems to stem from nervous system burnout, inadequate blood flows and mitochondrial dysfunction. In severe cases – as has happened to me twice – this can make the slightest mental or physical exertion nearly impossible without extreme repercussions. As bad as this seems, our symptoms extend way beyond mental and physical exhaustion.
I feel like the CDC’s CFS definition accurately describes my illness for the first ten years. The way CFS is described is comparable to the CDC investigating HIV and saying it doesn’t advance to AIDS. (As a matter of fact, not even mentioning AIDS exists!) The CDC relabeled ME as Chronic Fatigue Syndrome when investigating outbreaks in the 1980’s. Not only did they relabel the name, but they softened the definition dramatically. I’m not sure if this was an honest mistake due to lack of long term investigation or on purpose.
I refuse to accept the CDC’s current definition of CFS and exclusion of ME. This is the way I look at it: there are two phases of this disease. First, there’s the CFS phase involving bouts of exhaustion, lack of muscle stamina, sore throats, brain fog and post exertion malaise. This phase generally matches the CDC’s description of it.
The second phase, the ME phase, matches the description by the World Health Organization going back to the 1960’s. After my 10 year mark when I developed many more symptoms, it literally felt like I had a different disease from CFS. Just before I entered into what I call my ME phase, my CFS became more severe. I developed night sweats, neuropathy and exhaustion so extreme and heavy that it felt like it was hurting me.
During the CFS phase, my immune system was so over active, I could tell a day in advance when I was gonna get a cold. Oddly, the day before a cold I would feel much better than usual. When I developed ME, though, it felt like my immune system ceased to exist.
The ME Phase
The new symptoms that marked my ME Phase were extreme confusion, inability to think, extreme constant malaise, spinal cord pain, neuropathy, tender spots, brain unable to take in environment around me, thick haze in vision, floaters including cellular debris, purple dots, yellow dots and black dots in my visual field.
I had a feeling of a complete disconnect in my brain and was unable to understand people when they spoke to me. I experienced all kinds of different heart palpitations, I was unable to sleep for long periods and I got myoclonic jerks when trying to sleep. I had POTS, ringing in my ears, I urinated frequently at night and my legs “got stuck” as I walked.
I also felt like I was low in oxygen and gasped for breath, I had various rashes that didn’t clear with traditional treatments, aches in different places in my head and on my scalp, was dyslexic, was unable to move jaw muscles, had a lump in throat, food allergies, alcohol intolerance, EMF intolerance, leaky gut, light and noise sensitivity, vibration sensitivity and my brain felt like it was being scrambled if I was watching tv or following moving objects.
It got harder to keep my eyes open as my brain started to shut down. At my very sickest I couldn’t lean up. I was pretty much numb and blacked out a good portion of the day – not sleeping but not awake either.
In the past few years there have been publications stating how CFS is real, CFS is real! But does it really matter if there is a worldwide alert saying CFS is real if the disease in it’s entirety is not described accurately? Do young researchers and doctors really give a hoot about a disease that causes fatigue, sore throat and exercise intolerance? Now if mainstream publications said CFS is real and that it progresses into symptoms that bedridden those affected, that would garner attention! (Not to mention, CFS/ME probably has an extremely high suicide rate – higher, I would guess, than just about any other disease!)
Sometimes I get a good laugh when someone says I’m part of the gradual onset group. From memory my onset was very acute, as is anyone who has viral initiated CFS/ME. First you get a virus that triggers a process. From that point on, though, it gets interesting.
A small percentage of us get crushed and bedridden from day one. These people literally go right into a moderate to severe phase of CFS, or ME. A higher percentage of us start with mild symptoms that can last years. The disease is tolerable enough for many to live fairly normal lives until symptoms worsen. Both, having an acute onset phase.
Interestingly, my experience is that the group that gets the sickest right off the bat, seems to have a much higher recovery rate than those who gradually develop worsening symptoms. I suspect that’s because they don’t have a choice but to rest, which allows their body to fight the infection and heal.
Along the course of our disease we accumulate toxins, damage to our heart, nervous system and various other organs. From what I’ve seen, it’s often between years 7 and 10, when the disease really kicks into high gear. Around this point many of us transition from the CFS phase to the ME phase.
Some of us, however, can have mild, moderate or severe CFS our entire life without developing ME. As for myself, it felt like ME developed when I accrued a certain amount of damage to my nervous system. My life limiting symptoms then went from immune system related to neurological impairment.
From my experience CFS/ME itself has no subgroups. I think the only subgroups are people who’ve been misdiagnosed with CFS/ME. CFS/ME, on the other hand, I believe is one disease which is initiated by the SOB virus.
It seems to have subgroups partially because of the phases some people go through. A person in year 2 might not recognize a person in year 12 as having the same disease. This may cause researchers to designate subgroups, rather than labeling us at a distinct point of one illness. I’m hoping researchers can establish biomarkers that can pinpoint what phase of the illness we are in, and then develop treatments accordingly.
In saying that, I think there are four groups that closely mimic ME/CFS.
The ME/CFS Mimics
People With Toxic Injury or Toxicity
The first being those people with toxicity or toxic injury. I suspect many people with toxic injury are misdiagnosed with CFS/ME because many of the same areas are injured as in CFS/ME. I think it’s extremely important, though, for doctors to recognize toxic injury patients as such and not label them as CFS/ME because the treatment approach is very different.
This can be done by asking a few simple questions, such as when did you first get ill and have you been exposed to mold, mercury, pesticides or other major toxins? Unlike CFS/ME patients most toxic injury patients cannot remember exactly when they first got ill. They, will, however, generally remember how they were exposed, such as to a vaccine, moldy house or pesticide spray, etc.
From what I’ve seen with these patients, they can detox fairly easy through IV or other detox programs and get well. Some, however, seem to have lingering nervous system injuries after detox which need to get addressed for them to become fully well.
Most IV’s and most types of detoxification programs are not tolerated well with CFS/ME patients, however, in people with moderate to severe CFS/ME, it can, in fact, make us much worse. Although I think that toxic exposures can greatly exacerbate the symptoms of CFS/ME patients, I don’t think they initiate our illness. We are dealing with much more than toxicity issues.
People With Lyme Disease
The second is Lyme disease – the great imitator. As with toxic injury I think Lyme is a totally different animal from CFS/ME but it produces similar symptoms. Again, it’s important for doctors to recognize the difference as treatments will differ. Most Lyme patients will remember when they got a tick bite or not know when they initially got sick. For some it crept up on them over the years.
They too, like toxic injury folks generally do well with detox and other treatments. Two treatments that seem to do particularly well for Lyme patients are antibiotics and hyperbaric chambers. For complete resolution they seem to need at least a year with either of these treatments.
I’ve never seen an ME/CFS patient get fully better on those treatments. Some seem to get relief for a temporary period and some cannot tolerate either treatment.
People with Emotional/Trauma Initiated Illnesses
The third group is a trauma/emotional initiated illness that closely resembles CFS/ME. These patients seem to have more immediate neurological symptoms without heavy viral loads. Again I think doctors should recognize the difference as treatment course is different with ME/CFS.
Most of these patients remember exactly when they got sick. Generally they will have been in a car accident or have had a family loss etc. They have similar neurological symptoms as ME/CFS patients, such as confusion, neuropathy and other weird nervous system stuff. Generally, if they focus on long term nervous system repair they can have full resolution of their symptoms.
Again, I want to note, as with the others, that trauma and emotional incidents seem to make CFS/ME much worse as well but are not the primary cause of our illness. My illness, for instance, got much worse after the death of my mother and toxic exposures but it was present before them.
People with Anxiety, Depression, Sleep Disorders and Benzodiazepine and Antidepressant Withdrawal
There is one last group I want to quickly mention; people coming off benzodiazepine drugs and antidepressants. I’ve seen plenty of these people and their symptoms closely resemble CFS/ME. The difference being, they generally have no other health problems besides anxiety, depression or trouble sleeping.
However, again I want to note that benzodiazepines and antidepressants can greatly exacerbate CFS/ME symptoms if used long enough! While they can offer temporary relief and seem like a miracle drug, in the long term they can be outright evil for people with CFS/ME. I suspect that with CFS/ME fragile brains, dependency occurs much quicker and withdrawal is much more severe. Even while taking them we can develop a rebound effect that enhances CFS/ME symptoms by many fold. I’ve personally experienced this on Klonopin.
I feel the biggest difference with our disease from others, is how heavily we’re impacted by our surroundings. For severe patients especially, nearly every aspect of the immediate surrounding environment is intolerable. In order not to exacerbate symptoms, we learn methods to stay calm and block out everything around us. On the outside onlookers can’t see the unrelenting agony we’re in, and it can appear as if we’re faking an illness.
If a friend or loved one of a CFS/ME patient is reading this you must trust me on this, and more importantly, you must trust your friend or loved one with CFS/ME. You must trust them beyond what the medical professionals and other family members tell you. The very first thing a CFS/ME patient needs is a SAFE, stress free environment.
This is not a simple cold or flu in which we can easily rest for a few days or go to the hospital and fix. It is a disease that may keep us immobile or bedridden for months, years or even a lifetime. For me there is no worse feeling than the loss of self-sufficiency. But, having the support of just one person can mean the difference between life or death.
There is a lack of credible research, there is inaccurate information and even, steadfast lies about CFS/ME. Much of this misinformation has trickled down from the highest levels, such as the CDC and NIH to our local doctors. Therefore, you must have complete faith in what the person with CFS/ME asks of you. Caring for someone with CFS/ME can be the most difficult and isolating thing a person can do. Healing may take a different path for all of us but a safe environment is a big first step!
I feel pretty comfortable saying this is a neuroimmune disease. I also feel comfortable saying this disease has a course of progression, with pace and severity differing per individual. As patients we will try just about anything to get better. I remember, for instance, having several cabinets full of supplements and medicines. At the same time,we can be defiant as to what others suggest for treatment. This generally stems from a protection mechanism we develop over the years, due to many failed attempts of treatment, abuse and neglect.
In finding a treatment, I would suggest the patient and caregiver, network with like patients. As I mentioned earlier, a two-year patient would most likely not recognize a 12- year patient as having the same disease. I would network with someone at the same severity level, especially someone who’s been sick for a similar length of time.
Ask the questions that I mentioned earlier, such as how and when they got sick. Learn as much as you can to see if the other person is a credible and comparable case. This is really important because our bodies change over the course of the disease. This can dictate what treatments work and ones that may harm us.
Healing is Awkward
I sometimes think if we were given a pill that could stop this disease, half of us would still not get better. Talking from a severely ill standpoint, healing is a really, really awkward thing. It’s not cut and dry at all.
First you have to recognize the pill or whatever you are taking has probably stopped the disease progression but has not healed you! Your post exertion malaise and muscle stamina are not fixed the next day!
As a matter of fact, nearly nothing will have changed the next day. Healing is really hard to do because you still feel absolutely horrible, sometimes worse than before taking whatever is helping you. Also, you’ve been sick so long you think nothing can work! Your brain has literally been trained to only know sickness and doesn’t recognize the subtle differences between sick and healing! This surely causes many patients to stop treatments prematurely.
There are many treatments that seem to help CFS/ME patients get at least temporary relief. However, a treatment that helps one individual may not help another. As I mentioned earlier, it’s best to find a fellow sufferer who is most like you, who has found an effective treatment for him or her.
Treatments such as antivirals, antibiotics, immunomodulators, relaxation techniques, diet change and various forms of gentle detox have been known to work for a small percentage of patients. Some patients improve just by moving to a pristine environment! These and other therapies can help patients achieve 75% recovery! Believe me, 75% recovery is pretty damn good for a long term patient. Most treatments must be cycled or continued to avoid regression.
I think a well-rounded treatment should target the virus (SOB) and autoimmune response, plus injury to the nervous system. It also feels like the heart and mitochondria sustain quite a bit of damage. I’ve been told damage at the DNA/Genetic level is a concern and must be addressed as well! Most likely, all of these aspects need to be treated for long term resolution. This is not an overnight process! Depending on your severity level, being fully healed can take 3, 5 even 7 years or more, although functional recovery can be attained much quicker.
As for my treatment, core therapies have included acupuncture, neural therapy and pleo homeopathics. I think these therapies can be a true miracle for some CFS/ME patients. A combination of these therapies may lead to long term resolution of our disease.
Success using one without the other depends on the severity of the patient and the skill of the practitioner administering them. It takes a high degree of skill to administer these therapies in a correct manner. If patients are not fortunate enough to have a skilled practitioner, using EAV Electrodermal Screening can help guide the practitioner with these treatments. Much of my treatment focuses on the Central Nervous System. When I’m at my sickest and most sensitive, it feels as though my spinal cord is being attacked, specifically the horns of my spinal cord. It feels to me that this is a primary infection area which leads to secondary/upstream involvement in my brain.
I want to note these therapies are not scientifically proven and plenty of people and organizations try to debunk them as quackery. I would remind you, though, that some of these institutions are the same ones that have misguided us about our disease for decades. Not only our disease but Lyme, Autism and a host of other issues such as vaccines.
Like I said earlier, this misinformation trickles down to our physicians. In most cases when a CFS patient goes to the doctor, the physician will say CFS is no big deal and not know how to treat it regardless, maybe even mistake us for a psychiatric patient!
On the other hand, a typical doctor visit for me might go as follows. I tell the doctor there’s a bit of haze in my vision, he most likely would say it seems you have lactic acid build up on your neurons. Then he may say let’s focus on neurolymphatic drainage and your spleen today!
Finding a skilled physician is imperative. Going back to what I mentioned earlier, it’s best to network with like patients to find a safe effective treatment and come to our own conclusions.
When starting a treatment, it’s also imperative to recognize extremely subtle differences that indicate a positive change so you can start rebooting the body and resetting the brain. This can be difficult as healing symptoms can mirror sick symptoms.
My First Recovery
Thinking back 6 years ago, I noticed some of these subtle differences. I noticed strengthening in my spinal cord which allowed me to lean up an inch or two. While this was happening I had pain in my spinal cord, not too different than when my spinal cord was being attacked – but I recognized the difference between the healing and the sick pain. My stomach felt tighter and stronger and I realized I was absorbing nutrients once again.
I had been in a coma-like state. Once I started healing, my brain began rerunning images of so many different things, that it felt as if it were trying to reset itself. I started being able to keep my eyes open for a few extra seconds. In those very short seconds, I noticed my vision was becoming slightly clearer as the malaise and haze was lifting. My sleep started feeling like actual sleep. I had felt numb for several months but noticed my sense of touch, taste and smell coming back.
My exhaustion returned but I knew it was exhaustion from healing. Ringing in my ears came back but I knew my nervous system was singing a different tone – a healing tone. It was like my body was going in reverse through the disease process. I was coming alive but had to participate in the rebooting process to move forward. I knew I was getting treatments but had no clue what they were! I had to go on instincts and trust my body!
When you’re as sick as I was, however, healing can feel just about as terrible as the disease itself. I weighed roughly 100 pounds and could barely think or communicate.
Each day I would wake up and try to do more, something that would have previously had a negative impact. In between doing more, I would lay down and stare at the ceiling suffering all the while. This, though, was the healing process.
If I didn’t do more I would stay stuck at the same level. I did this month after month for 5 months, until I could finally care for myself. After 3 years of being bedridden I would learn how to start living again.
BACK TO THE PRESENT – MY POST SURGERY RELAPSE
Back to my most recent experience. It’s now Day 9 since I relapsed after surgery. Obviously I’ve been thinking about a lot. I’ve gone from being an active, mostly healthy person for the past six years to once again lying in a dark room with sunglasses on and ear plugs in. Thank God I came to my friend’s house so I could at least feel safe and be cared for. I don’t have family in town and he is the one person I could count on. I’ve had long conversations about my disease with him and he knows to trust me no matter what.
I start mentally preparing myself for another treatment tomorrow. Getting to treatment is not easy when you can only walk a few feet. Also, my brain, once again, feels completely disconnected from everything around me. It takes so much willpower to get out of the house but I do it.
The doc comes in and looks at me with the same smirk, saying you’re recovering well from surgery. What the fuck, I say to myself, is this guy kidding me!! He’s practically laughing at a crippled person!! He’s telling me I’m recovering well, but I don’t feel any better than the last time I saw him! I mumbled just give me my treatment so I can get back home, which he did!
I’m back home, it’s the day after treatment and I’m trying my best to notice any signs of healing. I’ve noticed a pain in my spinal cord for a few days now. I’ve also had the ringing in my ears. Can this be the buzzing of a healing nervous system? These must be healing signs, they must be!!
I’ve shown no improvements on the outside but inside things are definitely churning.
I started thinking about 6 years ago, when doc proclaimed to me at the top of his lungs you’re cured! Was he really right? And if he was, how is that I relapsed so quickly?
Well, I know I addressed the SOB, autoimmune response and injuries with treatments. Then I realize I’ve only just begun year 6 of healing from my injuries. Doc said I could take 7 years or more to fully heal!!
I don’t think this is a relapse in the viral sense. I believe the surgery probably caused a great deal of stress to my still healing nervous system and mitochondria. That was the battery doc had mentioned a week ago!!
So I start doing a little more each day. In between doing a little more there are many hours of staring at the ceiling in agony. My body and brain are slowly becoming one again, though. I’m praying each day gets better… and sure enough It did.
My recovery lasted 5 weeks. Six years ago it took me 5 months to be self-sufficient again. I learned a lot my first time around, this time I learned more.
I’m back to how I was pre-surgery. I hope to keep healing and someday be 100%. I know it will take some time but life is great once again, truly amazing.
- Mike’s Original Recovery Story – “Listen To M.E.”.
- Surviving Surgery: Suggestions for ME/CFS/FM patients
- See more recovery/recovering stories
After years of work it’s time to attempt what we’ve never been able to do before – get Congress to force the NIH to double its funding for ME/CFS. Support the historic bill to increase research funding, add new ME/CFS research centers, require the development of a strategic plan, etc.. It will take less than 5 minutes.