I finally saw my Primary Doctor after a three-month hiatus. My faith in doctors is renewed anew (is that redundant? Even if faith is renewed more than once?). She is a GREAT doctor. She’s a family doctor with no specialisation in any of my issues, but she seems to have knowledge of so much across the board ~ and she cares, which is more important. After our appointment, she wrote me a long email which was so thorough and thoughtful that I almost want to post it here.
Our current plan is a two-week “wash-out” period to get a new baseline of my symptoms. I’ve already gone a week without the supplements, now I’m going to go two more weeks without vitamins, medications (except inhaler, fiber and colace), acupuncture — everything. She also wants me to consider adding back in all foods during the wash-out period, but I haven’t decided on that yet. If this diet is helping with inflammation, I don’t want to stop it. It’s repetitive and gross, but I’m probably eating better than I ever have in my life.
During these two weeks, my doctor is going to do some research into the best drug options for CFS patients, so we can have a new plan going forward. It’ll probably be something like elimination diet, coupled with adding supplements one-by-one, then adding medications and probably the Chinese herbs. I impressed upon her the need for a painkiller option first and foremost. If I can’t take away pain, I can’t function and, it turns out, the quickest way to send someone who has had no recent trauma or loss in their life into a deep depression is to give them chronic pain with no source of relief.
I went to acupuncture yesterday and the Good Master said that he would have expected a positive change in some area by now (after three sessions). Not only that, but, because of my crushing headache after our last session, he wanted to hold off on needles lest he aggravate it more. “It” being the pathogen — the Dark Yin. Instead, he did moxabustion, where he burned mugwort – a herb – over areas of my arms and legs to influence qi and blood flow.
My husband couldn’t drive me to this appointment, so I drove for the first time in 19 days. The first horrible thing that happened was I realized just how bad my brain fog has gotten and how diminished my concentration and cognition are. This symptom was not one that bothered me too much during the first ten months of this illness and, when you’re alone and quiet most of the day, the loss of your words/ multitasking ability isn’t quite so salient. The upshot is I shouldn’t have been driving and I won’t try again any time soon. I had every drop of my concentration focused on the road. I had to think about what the red light meant and go through the driving steps in my head: blinker on, check blind spot, change lanes, blinker off, check mirrors… Basically, driving like I was taking my test at the age of 16. The worst part was I went down a one-way parking garage ramp the wrong way on my way out of the acupuncture building. One of those spiral ramps. The parking attendant said, “You almost hit her!” about a lady coming in. But I didn’t. I DID almost hit the side of the spiral ramp coming down. Just get me home.
The second horrible thing was, as soon as I pushed in my clutch, I felt something happen in my back. A body deconditions very quickly. Muscles lose strength and flexibility no matter how careful you think you’re being to keep moving each day. Driving the car is physically very difficult. I never knew that before. And when I got home, my lower back grew worse and worse until it was about the third worst pain I’ve ever had in my life. It was about an 8 out of 10. I couldn’t get up and down by myself, I couldn’t walk unsupported. It was all-encompassing and made me acutely aware of how much worse things could get. Thank you for showing me the light, oh wise all-knowing Universe, I need to be grateful every day that my back isn’t tweaked. Please give me back my normal M.E. pain! I gave in and took a quarter Norco. It gave me relief for about an hour but my breathing all night and all today is even tighter. I hate feeling like I am having a 24/7 asthma attack. It is scarier than you can imagine. I can’t seem to figure out what makes it better or worse. Is it the dogs? The dust? Is it this terrible allergy year? Is it the Norco? Does the inhaler make it better? Kinda. I’m not wheezing, not rattling — it’s just tight.
So, now we’re back to the wash-out period. I’m going to try to bear all pain with no painkillers of any kind. And it’s good because last night just reinforced that an hour of relief from Norco isn’t worth days of respiratory depression (there’s that word again).
I obviously did not do my walks around the house the last few days, but I will take them up again with renewed commitment once my back heals. Being breathless from walking to the toilet and unable to push in a clutch has scared the shit out of me. I need to save some semblance of strength or I will never get better.
I get to see one of my brothers tomorrow after more than a year. I am grateful for big brothers. They were my first teachers, my first inspirations. They taught me about music and humour; they toughened me up and protected me. They are the most grounded and real people I know. Plus, they gave me nieces and nephews. I’m grateful for them, too. 🙂
I’m having trouble breathing, still dizzy, painful back and shoulders, stiff limbs, sore throat, constipation and IBS pain, shooting pains in the bones of my right arm that woke me up in the middle of the night (this is a new one), aching hands, no sleep, night sweats (not full-body, just from the waist up), BUT, yesterday turned out to be the best day I’ve had since the 13th. Not as good as the 13th, by any means, but better than the last 16 days of hellish crashing and constant sadness. I was able to stay up and watch a movie when I hadn’t even taken a nap. I dared to use my neck stretcher and my TENS unit, which I can’t do when I’m in extreme pain. And, when I went to bed without a headache, I felt the depression lift. Don’t get me wrong, I’m depressed about this situation, but I don’t think antidepressants are the answer for me. I am instantly a happier, more hopeful person when the physical symptoms ease up. My only fear right now is that my lungs feel like they do before I get a chest infection. Like all that stuff is clogging the alveoli, but it isn’t rattling or cough-upable yet.
I walked around the house 3 times the past 2 days. Not around the block, just around the house. It’s about 100 steps. My new plan is 3 times around the house for 3 days, 4 times around the house for 4 days etc. By November 18th, I will have completed 10 days of 1,000ish steps. I’m going to try coupling that with gentle stretches each day.
I’m trying to have this new attitude that I am going to fight for my life. That’s it. I’m in a battle for me and I’m going to win. Maybe I’ll never be the old me ~ maybe I’ll always be more fearful and less carefree than I ever was in the past ~ but I’ll be a wiser me, a more appreciative me, a simpler me. And one day I will stop lamenting what I lost and start to find joy in what I have. In the future, I hope that’s not such hard work.
Tomorrow I see my PCP (GP) after a 3-month hiatus. Tomorrow my Mother comes to visit for 2 whole weeks. I am grateful for my Mother. I am grateful in every cell of my body that I was blessed with a Mother who is also a best friend, confidante and mentor. I have never lived a day without the knowledge that I was wanted, cherished, supported and loved. Now, that is something to truly be grateful for.
I don’t understand why the United States does not acknowledge myalgic encephalomyelitis. The Merck Manual doesn’t even mention it and the symptoms and recommendations for chronic fatigue syndrome are not the same as for M.E. Canada, Australia and the UK seem to be light-years ahead in their acknowledgement of this disease, if not their treatment (but probably that, too).
The “Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols” written in Canada by Dr. Bruce Carruthers et al. is excellent. It says, “As the CDC definition was primarily created to standardize research, it may not be appropriate to use for clinical diagnoses, a purpose for which it was never intended. There has been a growing demand within the medical community for a clinical case definition for ME/CFS for the benefit of the family physician and other treating clinicians. The CDC definition, by singling out severe, prolonged fatigue as the sole major (compulsory) criterion, de-emphasized the importance of other cardinal symptoms, including post-exertional malaise, pain, sleep disturbances, and cognitive dysfunction. This makes it more difficult for the clinician to distinguish the pathological fatigue of ME/CFS from ordinary fatigue or other fatiguing illnesses.” This makes me want to punch the CDC in the face. This is why my visit to what I thought was the Chronic Fatigue SYNDROME Clinic turned out to be just the Chronic Fatigue Clinic — for all fatigue. For people who don’t sleep, people who are depressed, people who are overweight and don’t exercise, people with other fatiguing diseases. Eat pizza because your blood pressure is low, eat turkey because you don’t sleep well, get massages because your muscles hurt. Idiotic advice. Thanks, I’ve been on the waiting list for months, feeling like I’m dying a slow, uninformed death and that’s the best you’ve got? I’m still irritated. Actually, I’m outraged. But I’ve bitched about that enough in other posts.
Let’s look at the Clinical Working Case Definition of ME/CFS from the article above:
1. Fatigue: The patient must have a significant degree of new onset, unexplained, persistent, or recurrent physical and mental fatigue that substantially reduces activity level. CHECK
2. Post-Exertional Malaise and/or Fatigue: There is an inappropriate loss of physical and mental stamina, rapid muscular and cognitive fatigability, post exertional malaise and/or fatigue and/or pain and a tendency for other associated symptoms within the patient’s cluster of symptoms to worsen. There is a pathologically slow recovery period–usually 24 hours or longer. CHECK
3. Sleep Dysfunction:* There is unrefreshed sleep or sleep quantity or rhythm disturbances such as reversed or chaotic diurnal sleep rhythms. CHECK
4. Pain:* There is a significant degree of myalgia. Pain can be experienced in the muscles and/or joints, and is often widespread and migratory in nature. CHECK Often there are significant headaches of new type, pattern or severity. CHECK
5. Neurological/Cognitive Manifestations: Two or more of the following difficulties should be present: confusion, impairment of concentration CHECK and short-term memory consolidation, disorientation, difficulty with information processing, categorizing and word retrieval, CHECK and perceptual and sensory disturbances–e.g., spatial instability and disorientation and inability to focus vision. CHECK Ataxia, muscle weakness and fasciculations are common. CHECK There may be overload phenomena: cognitive, sensory–e.g., photophobia CHECK and hypersensitivity to noise CHECK–and/or emotional overload, which may lead to “crash” periods and/or anxiety. CHECK
6. At Least One Symptom from Two of the Following Categories:
a. Autonomic Manifestations: orthostatic intolerance–neurally mediated hypotenstion (NMH), CHECK postural orthostatic tachycardia syndrome (POTS), CHECK delayed postural hypotension; light-headedness; CHECK extreme pallor; nausea and irritable bowel syndrome; CHECK urinary frequency CHECK and bladder dysfunction; palpitations with or without cardiac arrhythmias; CHECK exertional dyspnea. CHECKÂ
b. Neuroendocrine Manifestations: loss of thermostatic stability– subnormal body temperature and marked diurnal fluctuation, CHECK sweating episodes, CHECK recurrent feelings of feverishness CHECK and cold extremities; CHECK intolerance of extremes of heat and cold; CHECK marked weight change–anorexia or abnormal appetite; loss of adaptability and worsening of symptoms with stress. CHECK
c. Immune Manifestations: tender lymph nodes, recurrent sore throat, CHECKÂ recurrent flu-like symptoms,CHECKÂ general malaise, CHECKÂ new sensitivities to food, CHECKÂ medications CHECKÂ and/or chemicals.
7. The illness persists for at least six months. CHECKÂ It usually has a distinct onset,** CHECKÂ although it may be gradual.
To be included, the symptoms must have begun or have been significantly altered after the onset of this illness. It is unlikely that a patient will suffer from all symptoms in criteria 5 and 6. The disturbances tend to form symptom clusters that may fluctuate and change over time. CHECK
*There is a small number of patients who have no pain or sleep dysfunction, but no other diagnosis fits except ME/CFS. A diagnosis of ME/CFS can be entertained when this group has an infectious illness type onset.
**Some patients have been unhealthy for other reasons prior to the onset of ME/CFS and lack detectable triggers at onset and/or have more gradual or insidious onset.
Exclusions: Exclude active disease processes that explain most of the major symptoms of fatigue, sleep disturbance, pain, and cognitive dysfunction. It is essential to exclude certain diseases, which would be tragic to miss: Addison’s disease, EXCLUDED Cushing’s Syndrome, EXCLUDED hypothyroidism, EXCLUDED hyperthyroidism, EXCLUDED iron deficiency, EXCLUDED other treatable forms of anemia, iron overload syndrome, diabetes mellitus, EXCLUDED and cancer. EXCLUDED It is also essential to exclude treatable sleep disorders such as upper airway resistance syndrome and obstructive or central sleep apnea; EXCLUDED rheumatological disorders such as rheumatoid arthritis, EXCLUDED lupus, EXCLUDED polymyositis ?and polymyalgia rheumatica; ? immune disorders such as AIDS; EXCLUDED neurological disorders such as multiple sclerosis (MS), ? Parkinsonism, ? myasthenia gravis ? and B12 deficiency; EXCLUDED infectious diseases such as tuberculosis, EXCLUDED chronic hepatitis, EXCLUDED Lyme disease, EXCLUDED etc.; primary psychiatric disorders EXCLUDED and substance abuse. EXCLUDED Exclusion of other diagnoses, which cannot be reasonably excluded by the patient’s history and physical examination, is achieved by laboratory testing and imaging. If a potentially confounding medical condition is under control, then the diagnosis of ME/CFS can be entertained if patients meet the criteria otherwise.
Co-Morbid Entities: Fibromyalgia Syndrome (FMS), CHECK Myofascial Pain Syndrome (MPS), Temporomandibular Joint Syndrome (TMJ), CHECK Irritable Bowel Syndrome (IBS), CHECK Interstitial Cystitis, Irritable Bladder Syndrome, Raynaud’s Phenomenon, CHECK Prolapsed Mitral Valve, Depression, CHECK Migraine, CHECK Allergies, CHECK Multiple Chemical Sensitivities (MCS), Hashimoto’s thyroiditis, CHECK Sicca Syndrome, etc. Such co-morbid entities may occur in the setting of ME/CFS. Others such as IBS may precede the development of ME/CFS by many years, but then become associated with it. The same holds true for migraines and depression. Their association is thus looser than between the symptoms within the syndrome. ME/CFS and FMS often closely connect and should be considered to be “overlap syndromes.”
I have been strictly gluten-free now for over six months. Not a grain of gluten, not a crumb of bread, not a noodle of pasta, not a crust of pizza, not a spoonful of couscous, not a whiff of malt, nothing. I feel no difference whatsoever except a deep longing for tortellini. I haven’t broken the autoimmune diet that the Good Doctor put me on over a month ago except I still cheat with oats and sugar (actual and fake sugar), but that’s it. And I probably eat more condiments than she would like (Veganaise, salad dressing etc.). And I probably eat more red meat and oil-soaked chicken than she would like (I ordered a steak and grilled chicken from a local restaurant last night and split them with my husband. Lots of greasy meat. YUM). But, seriously, there are only so many salads a girl can eat. Oh, and I feel no difference whatsoever except a deep longing for popcorn.
This is the fifth day of no supplements. I have been taking vitamins, just no borage oil, alpha lipoic acid etc. I decided to give myself a week off to see if they were contributing to my headache. No such luck so far. My head threatens to explode all day, every day. Yesterday I took 500mg of tylenol and a half a Solpadeine (250mg of tylenol and some codeine). They didn’t seem to help my head and my breathing was tight all day, so now I am paranoid that the Solpadeine, like the Norco, depresses my respiration. I must figure out a pain killer option ASAP.
So, I’ll start back on all the supplements on Tuesday. I’ll do it until the end of the year. That is my commitment. Definitely until Thanksgiving. And I’ll continue this diet until the end of time, what do I care? At least the diet doesn’t cause a rash or my chest to close or my tongue to swell… I don’t think it does, anyway. It probably contributes to the depression, though!
When do I start the Chinese Herbs? He says it is a six month to a year commitment… Ugh.
Check-in for the overnight sleep study was at 7:30pm. It was downtown in what looks like an office building across from the hospital. My husband drove me there and, when we arrived, the lobby was filled with overweight men. One of them was coughing, so you better believe I put my surgical mask on in the elevator. My husband doesn’t even blink an eye at this behavior. But, you know what? The last time I was getting my blood drawn and I explained to the phlebotomist that I didn’t have a cold, I just didn’t like being in the main public hospital because if I got sicker it wouldn’t bode well, she said, “That’s good! Protect yourself! You should!” And there are people out there who will think I have a cold and be grateful. I, for one, would be very grateful if someone were wearing a mask on a plane. The sickest person I’ve ever come in contact with in my life was sitting next to me on a plane. At the time I wasn’t paranoid, so I didn’t say anything, which I can’t believe. Somebody must have, though, because the air hostess (what are they called now?) tried talking to him — to help him or get him off the plane or something. I have no recollection what happened in the end, actually. Did I sit next to him the whole journey? Shudder.
Anyway, the check-in at the sleep clinic involved filling out the 4 EXACT SAME PAGES of forms as I had at the sleep clinic consultation. I will never understand why they do this to patients. Finally, about a month ago, I got savvy and created a google doc with all my allergies, over-the-counter meds, prescription meds, the reasons I take them, the dosages, when I started, when I stopped etc… So, I just print it out and take it to every appointment. To fill all that in on their forms might literally take hours. Plus, it would be very tiny writing. The room was like a hotel room: flat screen tv, shower, toilet, sink, bed… and 65 degrees. That’s like a walk-in. Okay, a broken walk-in, but that’s very cold for me. The tech told me to get into my pajamas and she would be back to take me to the electrode-placing room. This room was even colder. I sat in my little shorts and top shivering as she spent a full hour placing electrodes all over my scalp, chest and legs. She also put tight belts around me chest and waist. The whole time she was explaining things in her thick Russian accent. I was in Moscow in the 80s, I said. I traded my jeans for cigarettes and badges. Her eyes grew wide, Oh, when it was still the Soviet Union? But, these were beautiful badges and cigarette packs. In fact, I think I have the latter somewhere in a box with my Kiss (the band) bubblegum cards. If I can find them, I’ll post a picture. 24-year old cigarettes!When she was done, I looked like this:
I put another blanket on the bed, cranked up the heat in the room and lay down to read. I brought a suitcase; I came prepared. I brought Gatorade and snacks and pain-killers. I brought a bowl and oatmeal, a mug and teabags. But, really, there is no time for anything. By the time she’s done with you, it’s 9:30pm and she is going to be waking me up before 6am. That’s lovely ~ let’s take a bunch of sleep-deprived people and wake them at the crack of a sparrow’s fart (as my husband says). Even if I had asked the tech to heat me up some water for tea so I could warm up (the hospital paperwork said there was a microwave in the room, so I thought I’d be able to do it myself), I wouldn’t have been able to drink it comfortably because I had wires attached to my chin and things up my nose and even raising your arm is an ordeal. Once you are hooked up, nothing comes on or off and you can’t go to the toilet without waving your hand and calling out (because the tech is watching you all night on infrared cameras).She took my blood pressure which was 109/64 (quite high for me — thank you, chicken broth dinner) and ran me through a series of sensor tests (“point and flex your left foot, make a snoring sound, breathe through your nose only” etc.). They have sleep number beds which I thought was great ~ I always wondered what they were like. Holy shit do they suck. Do not fall for the infomercials! I lay there for an hour and a half trying to get comfortable and fall asleep. I listened to my sleep meditation 4 times in a row. I pressed the “softer” button on the mattress remote control about ten times. For those of you with fibromyalgia or any chronic pain, this is a woeful experience. Every wire, every electrode, every inch of the belts hurt my muscles. Plus, I’m on the thin side, so my bones felt like I was lying on concrete. I was like princess and the pea only the peas were jagged rocks. They want you to stay on your back, if possible, but, after the tenth time waking up in pain along my spine, I rolled to my side, not caring what wires I compromised (don’t worry, if a sensor falls off, the tech is alerted and comes in to replace it). I woke up at some stage and waved my hand and got her to disconnect me so I could go to the loo. I woke up at another stage and pushed the mattress “softer” button about 50 more times. I woke up at another stage and drank some water ~ very dry rooms. The one thing I forgot was my throat spray which would have helped with the tickle. I did have a lozenge in my purse on the other side of the room, but I wasn’t going to call the tech in for that. Hint to anyone doing a sleep study: put anything you think you might want by the bed before the tech hooks you up! I woke up again sweltering, had to push the covers off, take my knee-high wool socks off (Raynaud’s, remember), but no drenching night sweats, thank god. I woke up about 5 times with my neck tweaked to bits. The pillows are HORRIBLE. Why didn’t I tell them I had to bring my own pillow because of my neck injury?? (another hint) And then, at 5:55am, she woke me, ran me through the tests again and took my BP (80/51 ~ oof, I’ve never seen it that low unless I’m in a faint. Is it always that low in the morning?). With the lights on, this is what I found my face had been on, the pillow case slipped off:
Am I in jail? How many drooling, sweaty fat men have slept on that rag of a pillow, I ask you? Ew.
I assume most people shower because the goop they put in your hair is very thick and does not come off without hot water and shampoo, but I just wrapped a scarf around my head and went down to meet my husband. Half an hour later, I was in my own bed, with the electric blanket on, vertebrae cushioned, neck supported, more thankful than I have ever been in my life for a good mattress (Bragada is the brand, worth every penny) and a foam neck pillow (free with the Bragada!).
I don’t get the sleep results for 2 weeks. I guarantee the doctor tells me to take a sleeping pill.
Today, I am having a hard time breathing. My heart and lungs seem to be spasming, so I am going to spend the whole weekend trying to rest and praying praying praying that I don’t fall into a deep, dark crash tonight or tomorrow. Please let me get through that clinic visit without becoming bed-bound, weeping with pain and exhaustion. I’m just now slightly starting to feel less depressed, I need this triumph. I need to do one thing without my body punishing me.
Family and friends: I could have made this post half the length and then answered some of your emails, so I apologise… I’ll try to reply to you all tomorrow and not post on the blog.
Gratitude today is for our bed ~ the first big purchase for our new home in 2006. I had slept on a futon and my brother’s couches (in my 20s, I crashed with him in 3 different apartments) for 6 years before buying my first grown-up (cheap) mattress for my first grown-up apartment when I finally decided to stop being a nomad. Never underestimate the power of a decent mattress. I’m going back to mine right now. And I still have the goop in my hair.
Rag and Bone Shop of the Heart 