Tag Archives: tests

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A definition of MYALGIC ENCEPHALOMYELITIS:

This is what I have, without a shadow of a doubt in my mind, and I no longer need a doctor to stop dancing around the diagnosis and say it to me. My symptoms are too black and white. 99 of my symptoms could be many conditions and 1 of my symptoms ~ the biggest, baddest one ~ can be only one condition that I know of and that is myalgic encephalomyelitis. Taken from: http://www.name-us.org/DefintionsPages/DefRamsay.htm (I have bolded the important points to my case)

MYALGIC ENCEPHALOMYELITIS:

A Baffling Syndrome With a Tragic Aftermath

by A. Melvin Ramsay M.D., Hon Consultant Physician
Infectious Diseases Dept., Royal Free Hospital
(Pub. 1986)

The syndrome which is currently known as Myalgic Encephalomyelitis in the UK and Epidemic Neuromyasthenia [Chronic Fatigue Syndrome] in the USA leaves a chronic aftermath of debility in a large number of cases. The degree of physical incapacity varies greatly, but the dominant clinical feature of profound fatigue is directly related to the length of time the patient persists in physical effort after its onset; put in another way, those patients who are given a period of enforced rest from the onset have the best prognosis.

Although the onset of the disease may be sudden and without apparent cause, as in those whose first intimation of illness is an alarming attack of acute vertigo, there is practically always a history of recent virus infection associated with upper respiratory tract symptoms though occasionally there is gastro-intestinal upset with nausea and vomiting. Instead of making a normal recovery, the patient is dogged by persistent profound fatigue accompanied by a medley of symptoms such as headache, attacks of giddiness, neck pain, muscle weakness, parasthesiae, frequency of micturition or retention, blurred vision and/or diplopia and a general sense of ‘feeling awful’. Many patients report the occurence of fainting attacks which abate after a small meal or even a biscuit, and in an outbreak in Finchley, London, in 1964 three patients were admitted to hospital in an unconscious state presumably as a result of acute hypoglycaemia. There is usually a low-grade pyrexia [fever] which quickly subsides. Respiratory symptoms such as sore throat tend to persist or recur at intervals. Routine physical examination and the ordinary run of laboratory investigations usually prove negative and the patient is then often referred for psychiatric opinion. In my experience this seldom proves helpful is often harmful; it is a fact that a few psychiatrists have referred the patient back with a note saying ‘this patient’s problem does not come within my field’. Nevertheless, by this time the unfortunate patient has acquired the label of ‘neurosis’ or ‘personality disorder’ and may be regarded by both doctor and relatives as a chronic nuisance. We have records of three patients in whom the disbelief of their doctors and relatives led to suicide; one of these was a young man of 22 years of age.

The too facile assumption that such an entity – despite a long series of cases extending over several decades – can be attributed to psychological stress is simply untenable. Although the aetiological factor or factors have yet to be established, there are good grounds for postulating that persistent virus infection could be responsible. It is fully accepted that viruses such as herpes simplex and varicella-zoster remain in the tissues from the time of the initial invasion and can be isolated from nerve ganglia post-mortem; to these may be added measles virus, the persistence of which is responsible for subacute sclerosing panencephalitis that may appear several years after the attack and there is a considerable body of circumstantial evidence associating the virus with multiple sclerosis. There should surely be no difficulty in considering the possibility that other viruses may also persist in the tissues. In recent years routine antibody tests on patients suffering from myalgic encephalomyelitis have shown raised titres to Cocksackie B Group viruses. It is fully established that these viruses are the aetiological agents of ‘Epidemic Myalgia’ or ‘Bornholm’s Disease’ and that, together with ECHO viruses, they comprise the commonest known virus invaders of the central nervous system. This must not be taken to imply that Cocksackie viruses are the sole agents of myalgic encephalo- myelitis since eny generalised virus infection may be followed by a period of post-viral debility. Indeed, the particular invading microbial agent is probably not the most important factor. Recent work suggests that the key to the problem is likely to be found in the abnormal immunological response of the patient to the organism.

A second group of clinical features found in patients suffering from myalgic encephalomyelitis would seem to indicate circulatory disorder. Practically without exception they complain of coldness in the extremities and many are found to have abnormally low temperatures of 94 or 95 degrees F. In a few, these are accompanied by bouts of severe sweating even to the extent of waking during the night lying in a pool of water. A ghostly facial pallor is a well known phenomenom and this has often been detected by relatives some 30 minutes before the patient complains of being ill.

The third component of the diagnostic triad of myalgic encephalo- myelitis relates to cerebral activity. Impairment of memory and inability to concentrate are features in every case. Many report difficulty in saying the right word and are conscious of the fact that they continue to say the wrong one, for example ‘cold’ when they mean ‘hot’. Others find that they start a sentence but cannot complete it, while some others have difficulty compre- hending the written or spoken word. A complaint of acute hyperacusis is not infrequent; this can be quite intolerable but alternates with periods of normal hearing or actual deafness. Vivid dreams generally in colour are reported by persons with no previous experience of such a phenomenom. Emotional lability is often a feature in a person of previous stable person- ality, while sudden bouts of uncontrollable weeping may occur. Impairment of judgement and insight in severe cases completes the ‘encephalitic’ component of the syndrome.

I would like to suggest that in all patients suffering from chronic debility for which a satisfactory explanation is not forthcoming a renewed and much closer appraisal of their symptoms should be made. This applies particularly to the dominant clinical feature of profound fatigue. While it is true that there is considerable variation in degree from one day to the next or from one time of the day to another, nevertheless in those patients whose dynamic or conscientious temperaments urge them to continue effort despite profound malaise or in those who, on the false assumption of ‘neurosis’, have been exhorted to ‘snap out of it’ and ‘take plenty of excercise’ the condition finally results in a state of constant exhaustion. This has been amply borne out by a series of painstaking and meticulous studies carried out by a consultant in physical medicine, himself an ME sufferer for 25 years. These show clearly that recovery of muscle power after exertion is unduly prolonged. After moderate excercise, from which a normal person would recover with nothing more than a good night’s rest, an ME patient will require at least 2 to 3 days while after more strenuous excercise the period can be prolonged to 2 or 3 weeks or more. Moreover, if during this recovery phase, there is a further expenditure of energy the effect is cumulative and this is responsible for the unrelieved sense of exhaustion and depression which characterises the chronic case. The greatest degree of muscle weakness is likely to be found in those muscles which are most in use; thus in right- handed persons the muscles of the left hand and arm are found to be stronger than those on the right. Muscle weakness is almost certainly responsible for the delay in accommodation which gives rise to blurred vision and for the characteristic feature of all chronic cases, namely a proneness to drop articles altogether with clumsiness in performing quite simple manoeuvres; the constant dribbling of saliva which is also a feature of chronic cases is due to weakness of the masseter muscles. In some cases, the myalgic element is obvious but in others a careful palpitation of all muscles will often reveal unsuspected minute foci of acute tenderness; these are to be found particularly in the trapezii, gastrocnemii and abdominal rectii muscles.

The clinical picture of myalgic encephalomyelitis has much in common with that of multiple sclerosis but, unlike the latter, the disease is not progressive and the prognosis should therefore be relatively good. However, this is largely dependent on the management of the patient in the early stages of the illness. Those who are given complete rest from the onset do well and this was illustrated by the aforementioned three patients admitted to hospital in an unconscious state; all three recovered completely. Those whose circumstances make adequate rest periods impossible are at a distinct disadvantage, but no effort should be spared to give them the all-essential basis for successful treatment. Since the limitations which the disease imposes vary considerably from case to case, the responsibility for determining these rests upon the patient. Once these are ascertained the patient is advised to fashion a pattern of living that comes well within them. Any excessive physical or mental stress is likely to precipitate a relapse.

It can be said that a long-term research project into the cause of this disease has been launched and there are good grounds for believing that this will demonstrate beyond doubt that this condition is organically determined.

The only thing that does not pertain to me here is the drooling and the attacks of giddiness, although, that visual coupled with my brother pointing out the awesomeness of a virus called “cocksackie” has me in a fit of giggles, so maybe I do have the giddiness. Giggling while weeping ~ Is this the emotional lability of which they speak?

Also, from the patient guide for ME/CFS that was put together by Stanford University:

While in recovery, please do NOT overexert yourself.

A lot of our patients report that their level of functioning feels like a rollercoaster.  This description shows that the patient is overdoing it, and we believe that this behavior may seriously jeopardize the patient’s potential for a full recovery.  As soon as patients start to feel better, it is natural to want to increase their activity level; however, this is not advisable during the initial recovery process because it will likely lead to a crash. We hypothesize that these crashes, or episodes of heightened fatigue, may have a cumulative effect on a patient’s health, and may compromise the patient’s potential for a full recovery. Imagine that every time you crash, your immune system overreacts as a response (as CFS may be an autoimmune disorder).  As a result, the immune system attacks your body’s own cells in the Central Nervous System (CNS). Once these cells are damaged they may never recover.  Even in the best-case scenario, when the viruses have been successfully treated and kept at bay, the damage that has already been done to the CNS may never be repaired.  This may prevent the patient from fully regaining his or her cognitive and physical capacities.  Theoretically this is how overdoing it and the subsequent crashing may have a long-term negative effect on health. Each patient is unique and should develop a routine level of physical and cognitive functioning that is appropriate for him or her.  Patients should feel like their functioning level is constant from day to day, so that they are not experiencing any crashes.  We feel that only once patients have learned to function under their threshold for crashing have they optimized their treatment plan and their chances for a full recovery.

So, after weeping for three days straight, mourning my old life, here is what I realise: This isn’t going away. I have barely been able to move for three days and today I still feel like shit. My throat is killing me. I can’t push myself to see where my limits are because my limits are much closer than I thought and (what I didn’t know), if I push myself and crash repeatedly, my chances of recovery are not as good. What this week has taught me is that my brain does not do well holding out hope. I cannot and will not think that change is right around the corner because, each time it doesn’t change, I am devastated anew. Every time I have a good day and think, This is it. I’m turning the corner. I’m getting my energy back. This is the beginning of the end… I wind up pushing myself too hard, wind up immobile in indescribable pain, wind up emotionally destroyed, in the darkest of dark places. And that place is blacker and deeper every time I go down there. HOPE is not my friend at all and, the analytical part of my brain finds this very interesting. Who would have thought the very last thing I need is to have hope for what’s around the corner? What I need is to say, Right, this is it. Let’s find a way to accept this and start a different kind of life. There must be others who have an illness and react this way when someone says, “I just know you’ll get better.” I guess that’s why the Good Doctor made a point of saying she will hold hope ~ so I can lose hope and it’s okay.

The upshot of this is:

  • I may not work again. For now, I will move forward assuming that this is going to last forever so I stop looking for my next career.
  • I may not leave this city again. In fact, more importantly, I will move forward under the assumption that I may only leave this house for doctor appointments.
  • I will stop trying to plan lunch dates with friends or buying tickets to shows 6 months away because I hope to be better. I will move forward assuming that I simply am not up to anything and can’t leave the house and will not be getting better.
  • Now that I’m not working, I’ll stop trying to be a housewife. If I can’t do the dishes, the laundry, the cleaning, the cooking, then I won’t. And I won’t feel guilty.
  • I will look for joy and a quality of life in these four walls. I will try to accept that this is my new life, stop mourning my old life, and stop dreaming about my future life.
  • I will accept that I may never find an answer to why this happened and how this happened.
  • I will accept that I may do what I’ve been doing the last few months for the rest of my life. My life may be writing, reading, tv, phone conversations, dog walks (please god) and that’s it.
  • Finally, I will come out of the closet. I have begged those that know about what’s going on with me to keep it quiet. I don’t identify with being sick and I didn’t want anyone to think of me that way. I thought I would quit my job and everything would get better and I could go back to normal life and nobody would really need to know that it was anything more than hard-job-burnout. But, now I will accept that people should probably be told. And I will accept that nobody will understand.

That’s my plan. Can I do it? I don’t know. Will you all do me a favour? Will you please keep reminding me that I can have a happy, good quality of life if I never leave my home? Will you please remind me of the good things and show me pieces of joy where I might not see them? When I get overwhelmed by the Dark Yin, will you say, “Let’s Skype!” or “Go put on some music and move a little” or “Maybe you can play Banangrams with your husband” or “Pretend you’re a monk ~ they do okay in isolation.” I mean it. Sounds crazy, but I’m going to need it. I’m not going to need anyone to tell me how this is going to get better. Just remind me that I’ll be okay right where I am today.

I am grateful for all people ~ family, friends, doctors, researchers ~ that believe beyond a shadow of a doubt that there is this disease that comes out of nowhere and changes lives, even though all current Western medicine tests are normal. I am grateful to all people who understand the depression and anxiety and fear surrounding this illness and don’t think the answer is to treat those things or ~ worse ~ that those things caused this illness. I wish I could put any doubter into my body 2 years ago and into my body now.

…What’s the use in tryin’
All you get is pain
When I needed sunshine I got rain

Yes, I saw her face
Now I’m a believer
There’s not a trace
Of doubt in my mind
Well, I’m a believer

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Dark Yin

I have another good doctor. Well, not actually a doctor ~ a master. The acupuncturist has a Master’s Degree in Acupuncture and Oriental Medicine and he was wonderful. As soon as I finished recounting my story, he said, “You have a bug”… which I think I needed to hear. I know I do and, interestingly, this is precisely the first thing my wise-doctor father said when he was here: “You’ve got a bug.”

Even if there was 100% concrete lab proof that I have M.E., most cases begin with a sickness, so must patients probably are infected with a bug. The Good Master acupuncturist said, “I have absolutely no doubt that something has taken up residence in you, but we don’t know if it’s bacterial, viral or parasitic. There are bugs we can find and treat, there are bugs we can find but usually wouldn’t test for, and there are bugs that we don’t have the ability to test for, so we’d never find them. In Chinese medicine, we treat for all bugs rather than looking for the particular culprit which could be hidden deep in the body.” They call the bad stuff that you can’t see or find “Dark Yin” and the problem it has caused with me is called “Gu Syndrome”.

Now, normally my ears slam shut when people talk about Chinese herbs or Oriental medicine. Like I said, I have always been a traditional Western medicine type of lady, but, if I’ve learned nothing else this year, I’ve learned that I don’t know shit. Who am I to say that this or that is dangerous? Who am I to say that this or that will work or not work? None of the doctors I have seen has found anything wrong with me yet and none of them has any advice except sleeping pills and anti-anxiety meds. Who am I to take their tests, opinions and traditions as the only options?

I did tell him No. Way. when it came to taking the Chinese herbs. He asked me to research it and think about it. My husband says, “Of course you should try it!” Those of you dealing with this disease know that doctors give you no answers and you would do anything to get better, so I want to put this information out there for you to consider. I am going to upload a photo of the herbal remedy info sheet the Good Master gave me. Here’s the first line:

“A unique remedy for the important clinical phenomenon of Abdominal Gu Syndrome: difficult and treatment-resistant diseases (such as IBS, chronic fatigue, fibromyalgia) caused by chronic, often undiagnosable parasitic infections…”

Although I’ve gone over the genesis of my illness in my head a million times, our conversation today helped me see it more clearly and feel more hopeful. He said, “Can you pin-point the day you got sick?” And I CAN. That’s why I think the Bad Bug scenario rings true. I was on vacation in Virginia, when, very suddenly, a got diarrhea. Believe it or not, I’d never in 38 years had the traveler’s diarrhea that people talk about. I was not nauseous, I did not vomit, just diarrhea that started suddenly and did not stop for a few days. I couldn’t eat ~ not really because of nausea, I just could not eat. I stared at an egg, willing myself to take a bite and I couldn’t. It scared me, brought me to tears ~ that had never happened, either. I thought everything resolved and then, three months later, I was writing Christmas cards and something started to happen to my body. I thought, Uhoh, I’m getting really sick. I moved to the couch and fell asleep for an hour, then, I woke up and told my husband that something was very wrong and I was worried that I might have to go to the hospital. It was the first cycle of chills and sweats that would continue for 9 months. “Chills and sweats”, of course, is a description that does not do it justice. For a better picture, read my diary excerpt:

https://ldndiary.wordpress.com/2012/08/31/how-my-cfs-me-began-an-excerpt-from-my-diary/

Now I wonder, did the Dark Yin take hold of me in Virginia, make me sick for 3 or 4 days, burrow deep and incubate for another 2.5 months and then start making me very sick? It was cyclical; it seemed like a parasitic life cycle, that’s why malaria fit so well. But my body couldn’t fend it off for whatever reason.

Feel free to not read past here. Below is my own investigative work for my own records. Believe it or not, I have never looked at the timeline.

During this whole time between June and December of last year, I was seeing a sports medicine doctor, a physical therapist and a massage therapist for my recurring, crippling neck injury. I also had to get two crowns over the course of these months, requiring multiple visits to the dentist. Also, when I look at my diary, I worked SO much. Every day was so busy and stressful and hectic. I didn’t take any time off whatsoever when I was sick ~ only for my trips to Ireland and Virginia.

June 17th-27th: In Dublin. I had a swollen tongue on 24th and 25th, took benadryls. I had a chilled/syncope/collapsy/low BP episode on the 26th, but didn’t go to the hospital.

Last week in June: continued to have swollen tongue.

July 11th: Saw Allergist who diagnosed me with autoimmune urticaria and angioedema and told me to take Zyrtec.

July 15th-26th: Acute bronchitis: short of breath, congestion, body aches, cough, mucous, sinus pressure.

July 22nd-24th: My Father’s visit.

August 6th: To Virgina.

August 9th-10th: Sick with diarrhea.

August 11th: Flew home early.

August 17th-21st: Drove to Boise, ID (with husband and dogs) for work.

October 9th-10th: Work retreat.

October 19th: Flu shot.

November 3rd/4th: Pretty sure I was sick with chills and sweats during this time.

November 17th-20th: Pretty sure I was sick with chills and sweats during this time.

November 22nd: Saw endocrinologist to talk about symptoms.

December 15th: Saw PCP to talk about symptoms and get malaria test.

December 20th-22nd: VERY sick.

December 27th: Was told malaria test was positive, but had two subsequent tests that were negative.

December 30th-January 1st, 2012: VERY sick. My mother’s visit.

January 3rd-10th: No appetite, severe chills, heart races, breathless just from standing up. Sweats every night, can’t eat, weak, lost 5 lbs, feel like I’m going to die.

I stuck out work for four more months before I had to leave my job to try to get better. The rest is history. The Dark Yin is still my dark passenger.

 

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The tests I’ve had done and thoughts on allopathic versus naturopathic medicine.

After talking to my father this weekend, it occurred to me that people who don’t know the background of my Year From Hell may think it’s ludicrous to try solving my problems with a bunch of supplements. There are connotations that I am leaving my treatment in the hands of quacks, that I don’t believe in science or that I have abandoned traditional allopathic remedies. Nothing could be farther from the truth.

I spent almost 39 years never taking a vitamin or a supplement of any kind. Except Emergen-C packets. I like to get vitamin C in me once in a while. I never took a multivitamin or fish oil or B-complex, even though I was told it might help my terrible periods. I never took a probiotic through all my doses of antibiotics over the years because I don’t have stomach or gut problems. I’m good, my body is a rock, I’m impervious to illness. I never took calcium, even when they told me I had pretty bad osteopenia ~ bordering on osteoporosis ~ in my hip at the age of 37. It just wasn’t part of my daily routine. I used to joke that I never get sick. I get the random attacks of anaphylactic shock and random collapses from low blood pressure, but, otherwise, I’m fine.

After the initial months of seeing my PCP repeatedly for the first diagnostic tests, I then saw an endocrinologist multiple times, a gastroenterologist multiple times, two different infectious disease specialists at two different clinics, an allergy specialist (listed as one of the top doctors in the city) multiple times, a rheumatologist (listed as one of the top doctors in the city) once, two physical therapists multiple times, a massage therapist multiple times, a mindfullness-based therapist multiple times, a psychotherapist once, a naturopathic doctor once, an optometrist once, an ENT doctor once, a pain management specialist once, a chronic fatigue specialist once and I’m sure I’m forgetting someone somewhere. I also have an appointment for my first acupuncture session this week and a consultation at the sleep study clinic (which I think I will have to cancel because I just found out it can cost $600+ after insurance and I have no income).

I was never given antibiotics, I was never given antivirals, I was never physically palpated, no one touched the tender muscle spots or suggested an EMG, no one took a stool sample (until this month), no one suggested a colonoscopy, no one wanted to take a second look at the MRI I had done a few years ago of my neck and head, no one suggested a physical therapist (I did that on my own), and no one seems to want to talk about M.E. or commit to that diagnosis when I’m 95% sure that it is correct.

I’ve spent 6 months researching infectious disease and chronic illness and endocrine, immune system, and neurological disorders. I know more than I’ve ever wanted to know about what can go wrong with us, what can invade us, what can infect us. If you don’t have a phobia and feel the need to develop one, just go to the listings of illness and disease on your state’s department of health website. That shit is right outside your door. Or just listen to the news. Could I have West Nile virus? Legionnaire’s disease? Whooping cough? MRSA? Necrotizing fasciitis? Swine flu? Salmonella poisoning? But that’s just what’s in the news. What I’ve really been wondering is, do I have M.S.? Or tick-borne relapsing fever? Malaria? Fibromyalgia? Rocky Mountain spotted fever? Polymyalgia rheumatica? Parkinson’s? I am told all obvious causes have been ruled out, but I can’t help thinking about my two toxic multinodular goiters which had killed my thyroid and were killing me (yes, the endocrinologists said that, if left untreated, my condition would kill me in the not-too-distant future) were not discovered for years because the blood tests were only a little off or only slightly low. Don’t trust the lab ranges! If your test results are low or high but within the “normal” range, they can still indicate a problem.

Now, ready? Here are the tests I HAVE had done:

MALARIA SCREEN (3 times, because the first test was positive)

COMPREHENSIVE METABOLIC PANEL

CBC, DIFF (three times)

SED RATE

G6PD SCREEN

CRP, HIGH SENSITIVITY (multiple times)

COMPLETE URINALYSIS

PROTEIN ELECTROPHORESIS

CULTURE:BACT – BLOOD

RHEUMATOID FACTOR (twice)

ANA REFLEX COMP

ANA PATTERN BY IF (is that the same thing?)

ABS TO NUCLEAR AGS

THYROID STIMULATING HORMONE

T3

T4

PARATHYROID HORMONE

CORTISOL

EPINEPHRINE

NOREPINEPHRINE

DOPAMINE

METANEPHRINE

NORMETANEPHRINE

5-HIAA

VITAMIN D

CHEST X-RAY

QUANTIFERON TB TEST

CT SCAN OF CHEST, ABDOMEN AND PELVIS W/ CONTRAST

ULTRASOUND ABDOMEN BACK WALL

ZINC

VITAMIN B12

FERRITIN

HEPATITIS C

HEPATITIS B

HIV (TWICE)

ANTI tTRANSGLUTAMINASE, IgA

TTG AB IgA (SAME THING?)

ALLERGEN PANEL (BLOOD TETS): IgA

ALLERGEN PANEL: SKIN PRICK TESTS

BLOOD EXAMINED FOR THE FOLLOWING PARASITES:

MALARIA, BABESIA, TRYPANOSOMES, MICROFILARIA, BORRELIA

FOLLICLE STIMULATING HORMONE LEVEL

LYME DISEASE (TWICE)

EHRLICHIA

CYTOLOMEGA VIRUS (CMV)

SPYHILIS

EPSTEIN-BARR VIRUS (EBV)

IBD SEROLOGY

CPK CARDIAC MARKERS

LIPID PANEL

LIVER PANEL

ELECTROLYTES

HLA B27

ESTIMATED GFR

C-REACTIVE PROTEIN

URIC ACID

CREATININE

(updated to 09/13/2012)

Yes, they were all negative except EBV, to which 95% of the planet has been exposed, apparently. On paper, I look great, which is why, after twenty years of working myself to the bone in this country, I won’t qualify for social security disability. I want nothing more than to work. They list hypoglycemia and thyroid gland disorders under the listings of disorders that can qualify someone for disability. I have both of those things, but they are manageable, but I would have a better chance of getting disability applying under those disorders than ME or CFS ~ the disorder that is actually disabling! They list Sjogren syndrome and anxiety-related illness on the SS website, both of which I probably have or could be diagnosed with if I just answered the doctors’ questions slightly differently.

In sum, I did not jump to licorice extract, borage oil and a no-grain diet to solve my problems. I have done everything I can possibly think of doing besides doping myself up with pain killers and anti-anxiety and sleeping pills, which is all most doctors really want me to do. And, at this point, I would try anything. I would drink a witch’s brew of eye of newt and toe of frog, wool of bat and tongue of dog, adder’s fork, and blind-worm’s sting, lizard’s leg, and howlet’s wing…

Any ingredients I’ve missed for my hell-broth, please let me know!

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LDN Day 17… CFS / ME is still in charge.

Ugh. I have zero energy. Every night these last few days with my Dad visiting, I have turned into a brain-dead, drooling zombie around 8 or 9pm… To the point that I can’t carry on a conversation, I can’t focus. Brain fog is a perfect description. I take so much longer to form my thoughts that people try to finish my sentences for me. And I am too tired to try… My sister asks, “what’s the plan for tomorrow?” and I literally have difficulty understanding her question, let alone coming up with a plan. I hit a wall of fog.

My sleep streak ended. Either 6 or 7 hours the last four nights, which isn’t necessarily that bad except the nights are so difficult with pain, sweats, chills, cramps — and I WILL NOT GET BETTER without 8+ hours/ night. See the Zeo graph below — constantly awake. Between 10pm and 2am, I dipped into sleep six times for no longer than ten minutes each time.

20120904-175354.jpg
Yesterday, I was very dizzy in the morning. The night before, I had been a bit scared, thinking I really overdid it, regardless of my careful intentions. I was in bed, chilled to the bone, so so so cold. And felt like I had the flu, of course. The next morning, like I said, I was dizzy for hours, but felt better after a walk with my Dad.

Today, I am immobile. I pulled a muscle in my back yesterday picking up a pot of water (god forbid I try to clean the kitchen!) and that, coupled with the hangover from socialising, has left me practically bed-bound. I woke up with a wicked headache, extreme pain from the top of my left skull, down the left side of my neck, down the pulled muscle on the left side of my back and into my hip. My throat has been sore all day, eyes puffy, runny nose. Ugh. I feel awful. I visited calmly with my family for two days and I’m paying for it. Barely have the energy to type. Definitely don’t want to call anyone. It probably won’t be much better tomorrow. I need unlimited massages for free… I need unlimited funds for weekly massages. For all of you out there dealing with muscle hell, massage therapy is a godsend. It doesn’t make it worse — I know it feels like someone pressing on your back would make you shriek, but, the next day, things are so much better.

This is an evil disease with no answers, no experts, constant pain, limited mobility, constant searching, limited hope.

Almost forgot again: I am grateful for my dogs that always get a smile out of me and, no matter how bad my day is, they make it better.

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My visit to the chronic fatigue clinic.

I wish I could put into words how terrifying the healthcare system here in the United States can be and how inept so many people are in the field and how oblivious, stubborn and condescending so many of the doctors can be. Don’t get me wrong, I have the utmost respect for this field. I am fascinated by much of it. I wanted to be a doctor, then a physician’s assistant (PA), then a registered dietitian (RD), then a registered nurse (RN). I took all the prerequisites, I volunteered at hospitals, I applied to many schools and got in… But then my life took a different road.

I knew, from working in the hospital, how despicable the drug companies are and how backwards the system is, as a whole. They make us sick throughout our lives ~ from the way grocery stores are set up to the advertisements on tv ~ and they keep us sick to profit from the drugs and the huge hospital machines that feed patients through on conveyor belts. I have seen almost twenty different doctors this year ~ usually only once. I saw a rheumatologist for a half hour who charged over $500. When I worked in the hospital, my job was to call drug companies to try to secure discounts for people who were leaving the cardiac ICU. These were generally elderly people with heart conditions and huge medical bills that needed these drugs to survive ~ to stay alive. They weren’t working, obviously, and usually their spouses were retired or deceased. I was meant to provide evidence to the drug companies that these patients warranted discounts. Disgusting. Heart-wrenching. In retrospect, I am happy my career in the healthcare field didn’t work out. Who wants to be around sick people all the time? I’d have to do my job wearing a mask.

Anyway, I need to write a book about all the mistakes that are made when you are a patient – lab mistakes, appointment mistakes, paperwork mistakes – and about all the days that are wasted showering, driving, parking, walking around hospitals, waiting in rooms full of sick people, filling out forms that NO ONE looks at, explaining the same symptoms over and over again, getting ten vials of blood drawn so the same tests can be run again because no matter how many times you sign release forms and call clinics to ask them to fax results to your PCP, it doesn’t happen … WASTED days because no one can appreciate the time and energy and money that disappears with every doctor appointment. WASTED days because you never actually get an answer or even a theory or a call back, you are just told to make another appointment for a follow up. WASTED precious, precious days. When you think you might die, every day becomes precious.

So, let me tell you about my appointment at the chronic fatigue clinic – a specialty clinic at a very large hospital in a very large city. A city ranked 4th in the country for rehabilitation, 6th in the country for endocrinology, 8th in cancer care, 16th in neurology and neurosurgery. Let me tell you what a joke my wasted day was.

Over two months ago, they sent me a very thick booklet, chock full of questions which took me almost two weeks to complete – with many breaks because it was so detailed and tedious. My appointment finally arrives with the clinic that specialises in the condition that I supposedly have. I’m thinking, “Finally I get to talk to experts and get some up-to-the-minute info on cutting edge research and a plan of action for my recovery going forward!” Nope. After waiting half an hour after my appointment time (which isn’t too long by most clinics’ standard wait times), I was given a work up by an RN: blood pressure, allergies, weight etc. She also tested my tear production.

Then a PA asked me all about my symptoms. I was told that this PA, who was very nice, sees every patient first, but, I swear to god, she came across as if she had never encountered anyone with ME/ CFS.

“I don’t know why you don’t wake up refreshed when you do get enough sleep”, she says. Seriously? She refers me to a sleep clinic (they have no appointments for months) and tells me to take epsom salt baths and eat turkey. Great.

“You are tired during the day?”, she asks. Tired? On a bad day? No, I’m not tired. I’m incapacitated. I’m sick, I’m shaky, I’m cement. I’m unable to move or eat or talk. She says, “You can’t eat because you are sick? What foods can’t you eat?” No, I can’t eat because the act of picking up a fork, chewing and swallowing is too much for my body to handle! Because, on those days, I’m trying not to die, so eating isn’t really my priority.

After spending 45 minutes going through my year, my symptoms, my hell, she says quizzically, “Oh, you have muscle pain?” Jesus! Yes! Haven’t you been listening? I am in pain from head to toe, every day, some days better than others. She tells me to try acupuncture, massage, cupping and eating turmeric. Wow, this is the expert in chronic fatigue syndrome?

For my low blood pressure, she tells me repeatedly to eat pizza, chips and pickles. She says, “Bad for us, good for you!” Pizza, chips and pickles? Can’t I just add salt to healthy foods? How about salt on my veggies or salt on my eggs? I have a Rx for pizza??

I tell her I started LDN and she says skeptically, “I used to use naltrexone years ago for drug addicts, but I stopped.”

Then I had a “psychiatric exam”. This was ridiculous. It was a lengthy computer questionnaire that was read to me by someone in a cramped, hot office. Most of the questions I had already answered in the tome that was sent to me to fill out months ago and all of the questions I could have easily completed at home ~ they were yes and no answers. Have you had a period of two weeks or more when you have felt sad, guilty or worthless? This sort of bullshit. It took over an hour and I kept asking her, why couldn’t this have been sent to me to do in advance? And, who on this earth is ever going to look at the answers?! No one.

They took blood to test for vitamin B12 and zinc and something else (useless) and then they made me an appointment with the actual DOCTOR that is in charge at the CFS clinic! So, this was just a fact-gathering appointment and I’m really going to be told nothing? No one is going to ask me what I have been tested for in the past, discuss what happens when you have ME, what they know about this condition, what fits with my symptoms, what doesn’t, what the prognosis is, what treatments and drugs they have found success with… anything??  Nobody is going to say, “I’m so sorry you are going through this and don’t lose hope, we’ve had a lot of success treating people with this condition.” Fucking anything?? Nope. And, the best part? The first appointment with the clinic doctor is in January. FIVE months from now. 14 months since my hell began.

All in all, from the time I took a shower until the time I got home, it was six wasted hours. No hope, no relief, no tests done, no information, no display of expertise, no advice… unless you count massage and turkey. I’m exhausted, frustrated, disgusted… and, unfortunately, pretty hopeless.