30 years and still waiting

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My illness started in 1987 when I was 23 years old. I contracted an illness that involved a severely sore, inflamed, swollen throat and sinus. My tonsils and sinus passages seemed to be the epicenter of this ‘flu’ which also included swollen lymph glands, fever, chills and headache. The stuff that was being sucked out of the base of my sinus passage was like nothing I had ever seen. It was thick, chunky, pussy and had blood in it. The area behind my tonsils felt like several layers of tissue were being stripped away leaving it raw and exposed. Lastly, my entire body ached; I had no energy and had severe night sweats.

Strangely, I never had an illness that ever lasted more than a few days and I had been through plenty of colds and flu’s to know this. This one was different. I was in bed sick for about one month it seems and later never really fully recovered.  After a month my body started winning the battle with the throat thing yet it seemed to not go away entirely and severe fatigue, low-grade fever and night sweats persisted. Some people said it was reminiscent of Mononucleosis and yet the AIDS epidemic there in Atlanta was in full swing. I was not gay but was scared. A gay student at my mother’s cosmetology school in Atlanta felt assured I didn’t have AIDS and suggested a well-known doctor downtown that specialized in diagnosing such. His name was Dr. Richard Dubois and he was a highly recommended Internal Medicine diagnostician. He did a full blood workup and diagnosed me as having Epstein-Barre/CFS. He said it was a virus, no one has died from it yet and that blood transfusions help but don’t last. Other terms back then were Chronic Mono and ARC (AIDS related complex).

After that initial illness I was never the same again. I was permanently tired all the time and although my strength would increase at times for weeks on end, I would always crash again for an extended period of time. This would go on for the next 24 years to the present with some variations. After some time it seemed the immune system was fighting it better overall and I would feel somewhat normal for longer periods of time.  In other words, I went from feeling almost normal for a month or two to having severe bouts of fatigue that would last for weeks and then gradually lessen and morph into stiff necks and other things. This fatigue was such that it was a struggle just to lift my arm while lying down – extreme feelings of exhaustion. This fatigue also at its peak would cause the eyes to roll back in my head with more pull or force than usual while falling asleep or sleeping. This tendency coincided with the fatigue feeling. After getting sleep I would feel somewhat better but not for long and I would be slower than usual. It’s like my brain switches wanted to turn off more frequently hence the need for rest. The brain becomes numb and I can feel REM wanting to come on.

During these episodes I became acutely aware of why CFS sufferers tend to commit suicide as I also felt doomed to a life of inoperability and worthlessness (living death). CFS causes depression where no depression existed before.  One positive thing was my appetite was always good and still is.

Even though there are ups and downs, certain traits persist indefinitely and amplify with the rise and fall of a given flare-up:  Namely, mental impairment and dysfunction such as memory loss, orthostatic intolerance (dizziness under certain conditions), persistent headache, blurred vision, sore and red eyes and eyelids with a fibrous discharge, lack of eye control – impaired ability to read efficiently, persistent stiff necks and shoulder blades –or in between the shoulder blades at the spine, persistent swollen and achy lymph glands in arms pits, groin and neck, sore joints - especially hip and back, sore muscles – especially back and neck, muscle cramps in back and sometimes legs, vertebrae and chest ‘popping’ ringing ears, post-exertion malaise.   As I think back another peculiar symptom that lasted for some time was discolored saliva (brownish), especially after a night’s sleep. Not sure what this was. Another weird problem that occurred at various times along with fatigue was a clear-like bulbous mass of mucous that I would clear from my sinuses. It would be very firm like gelatin or rubber and self-contained. This still happens occasionally.

Sleeping never seemed to be a problem usually until the last decade or so when bouts of insomnia became common. Along with the insomnia (ironic isn’t it) came increased heart rate while trying to fall asleep, heart and chest pains (unexplainable through EKG) and something that I had never experienced in my life: Anxiety and Panic attacks. My nervous system seems to be in a fray. After going to the doctors with chest pains and my fatigue complaints it became clear the medical industry could provide no help at all. Later, I went to a doctor for insomnia (all night negative feedback thought-loops and shallow breathing) and he gave me Ambien. This worked for a few days until I started getting severe anxiety or panic attacks while falling asleep. It felt like I would completely stop breathing right at the point I was about to fall asleep. I would be jolted out of my falling asleep by the sensation that I was suffocating. This went parallel with feelings of vertigo or feelings of my brain being dizzily sucked into a black hole if you will. The alarms were definitely going off. These had been happening for the past few years but not with this magnitude. I thought this might be unobstructed sleep apnea. For this I went to the emergency room where I was treated for anxiety and given Lorazipam. This medication worked for the panicked heart and shallow breathing and helped me sleep properly. Somehow I think the insomnia and anxiety are linked and brought on or amplified by CFS. Moreover, stress becomes magnified with CFS. I’ve noticed that if things are quiet for some time and I’m relaxed, the slightest noise will startle me and send a shockwave through my nervous system like being electrocuted almost. If in fact I have PTSD, this is amplified by CFS also. Insomnia, Apnea, Anxiety and Vertigo; these are all interlinked with my CFS.

Chronic Fatigue is a disease that works in such a way as one can’t win for losing. In the morning, even if I’ve slept through the night which is not often, I feel tired and dizzy with lower back pain. Once I get up and going I am able to do work activities but with memory problems and constant back pain and stiffness. Bending over is a permanent issue due to the mostly-lower back pain and I don’t have a bad back – it’s more like having encephalitis or spinal meningitis I think. The more physical my work activities are the more it takes a toll on me at the end of the day. I usually can last anywhere from 4 to 6 hours before I start to get sluggish and cave in. If I sit down to rest anytime during the day, I will become tired and start to become like concrete setting up. I have to keep moving in order to avert the crashing effect; however, the more I exert myself, the bigger toll it takes on me at the end of the day and really for days if not weeks to come. One day of hard physical work usually translates into increased soreness/stiffening. Several days of physical work translates into prolonged fatigue with severe back-joint pain and stiffness – especially in the morning and at the end of the day.  Other stated symptoms are included here.  Incessant headaches are common along with sinus and eye inflammation reminiscent of a person with severe allergies. The allergy symptoms always rise and fall with the fatigue symptoms. To reiterate, I also get rapid heartbeat, achy lymph nodes, eye twitches, blurred vision, lack of eye control, muscle cramps, anxiety attacks, stiff necks, headaches etc. parallel with the fatigue symptoms.

Let’s now elucidate more on the brain and thought process problems. Memory is debilitated to such an extent that even an office job will be difficult if not lead to embarrassing mistakes (see Intel). Speech and vision are also impaired along with reading. On bad days, I notice how formulating sentences and thoughts are skewed and getting the words spoken leads to marked stuttering and mispronunciations – just finding the right word is troublesome. Spelling also suffers and dyslexic tendencies are magnified. When typing, I find myself typing the same word over twice often and not knowing it. Reading can be downright difficult with the eyes shifting erratically and without much focus and control. Thinking through problems and trying to remember things is problematic. Fatigue, blurred vision, headache, bloodshot eyes, ringing ears, anxiety attacks, poor memory; these were common at my last job at Intel.

In addition to the 5 hour ‘up’ period during the day, I also have a 5-hour rule at night. With CFS in my case, without medications I will, if not suffering insomnia, apnea or anxiety, typically sleep for 5 hours and then wake up and not be able to get back to sleep until many hours later at which time work is about to start. One thing I have concluded about CFS is that the more I adhere myself to a strict 8-5 or regimented work schedule, the more it stresses my CFS clock  and causes CFS flair ups and fatigue. My body needs to follow the CFS clock so it gets the rest it needs when it needs it. Lorazipam helps in getting the proper sleep for work yet I have a hard time with enduring the day without some kind of CFS related issues. Stress antagonizes my CFS which leads to more stress which really is a negative feedback loop. One of the peculiarities of my appearance is the dark circles under my eyes. Even my friends and family can see it although they usually deny it. I look like I have cancer. I feel like shit most of the time even when I think I’m feeling better. Go figure.

Lastly, CFS is marked by equilibrium issues regarding balance. Dizziness is common along with balancing problems when my head moves or when I’m having anxiety attack. Moving my head at times causes sensations of falling, dizziness and will lose my balance. I often become nauseated and at one time came to the conclusion that I had vertigo. I think it is CFS.

In essence, CFS is like being and feeling sick ALL the time. It is either smoldering or is full on. One never actually feels better or not sick. The symptoms are ever present. Some days are better than others but more accurately some months are better than other months. I usually have several episodes per year each lasting more than a month. In between episodes, I can do work but will be handicapped by the mental impairments and the inability to physically exert myself for too long. Too long is usually 4 hours or 5 hours. I usually cannot exert myself longer than 6 hours before I’m kaput. If the exertion is extreme or prolonged, I will really pay the price and I’m out for the foreseeable future usually weeks on end or I drag myself to work each day like some kind of zombie with very poor performance. I have a need to sleep more often than normal people and don’t have the stamina either. Lately, after all these years of pushing myself while suffering and at the suggestion of my disabled relative, I’ve been considering applying for disability. I’m really tired of feeling this way and am not altogether certain I can keep going like this for much longer without some form of respite! I am not confident of my future.

4/19/16

It’s been 5 years now since I wrote about my CFS experience.  My first writing was in 2011 and my condition has worsened dramatically – especially in the last 3 years. In 2011 I was convinced my condition was debilitating to the point that work ability was uncertain yet I struggled onward with everything I had. Now, I am sure I have reached a point where working is out of the question. I can no longer sustain work in the state I’m in with CFS/ME. I have applied for disability benefits, retained an attorney and must get help short of destitution. To know in my heart I am disabled and somehow slip through the cracks is frightful. Even terminally ill people have a hard time accepting they are incapacitated. I too feel this way. Yet, more and more I am accepting the fact that I need help even though my pride says otherwise.

8/10/2016

My condition has worsened steadily over the last 5 years with the last 2 years being such that I am housebound and cannot work. I am in the appeal process of a disability claim. I hope they figure out I'm truly disabled. It's easy to be cynical about this considering the horrible lack of research, therapy and awareness. It's getting better recently as you may know.

http://www.prohealth.com/ME-CFS/library/showArticle.cfm?libid=28894&B1=EM072716C&B3=EM072716C&utm_source=EM072716C&utm_medium=em&utm_campaign=MECFS&[email protected]

http://www.sciencedirect.com/science/article/pii/S1567724913002390/pdfft?md5=a670fc9f20896efb600583cc82da602b&pid=1-s2.0-S1567724913002390-main.pdf

See: http://www.sciencedirect.com/science/article/pii/S1567724913002390

https://app.secure.griffith.edu.au/news/2016/06/09/chronic-fatigue-syndrome-cell-discovery-may-hold-key-to-treatment/

Still waiting.......