As part of creating my management diary, I am re-visiting my list of symptoms to see what I should put in as a ‘tick-a-box’, and what should be an optional extra for each day under ‘other symptoms’.
I created my list of symptoms in late 2013 as I was seeing a lot of new specialists, and had to describe my symptoms over and over again. I am not very good at doing this, mostly because there are a lot of them, and I forget them. This is because they are unimportant to me. In the face of debilitating fatigue, minor symptoms lose their importance. Bloating is uncomfortable, but I can still function with a painful, enormous gut. Recurring Thrush is unpleasant, but I deal with it and tend to forget about it. I can still live my life. I have mentioned them all to my GP, but not all at once. And always in passing, with an air of unconcern (indicative of my complete unconcern). It was only after the third specialist that I conceived of the idea of writing down my symptoms in a list. The final list shocked me. How have I been living like this? How could I have been so complacent?
I’ve made a copy of the list below. It is long. Apart from the contact allergies and the bad back, all the symptoms are related to the CFS. When I was at my worst midyear in 2013 I had all of these symptoms severely, all of the time. Thankfully the move to the coast has improved most of my symptoms, and the better my activity management is (the less I do), the better my symptoms are.
Neurally Mediated Hypotension: Diagnosed in 2013. Treatment (helps a little) – lots of water and salt tablets.
Multiple Chemical Allergies: Diagnosed 2010-2013. Avoidance help relieve the symptoms.
Chronic Fatigue Syndrome: Diagnosed in 2003.
HyperThyroidism: Diagnosed in 2008. Treatment (successful) – Neo-carbmiozole half a pill daily.
Depression: Diagnosed 2007. Treatment (successful)- Lexapro, 20 mg tablet daily
Mal de disembarquement: Diagnosed 2012. Land-sickness after getting off a boat (also can be triggered by plane/train travel). This could possibly be a complication of the Neurally Mediated Hypotension.
Post-Exertional Malaise: After pushing myself I feel just dreadful the next day. All my symptoms flare up. Post-exertional malaise is specifically a combination of fatigue, weakness, brain-fog and fibromyalgia. It sucks.
Brain Fog: A feeling of being overwhelmed. Confusion. It’s difficult to string words together to form sensible sentences. Your IQ takes a massive hit. Jokes and sarcasm are way beyond your understanding. You get distracted easily, often in the middle of your sentence. You feel fragile and can get upset easily.
Fatigue: Debilitating fatigue that prevents me from doing even low-impact day-to-day things.
Muscular Weakness: At times this is so bad I feel ‘floppy’.
Loss of fine motor control: I have days where I can’t control my hands as well. I drop things, I can’t pick them up, and I find writing with a pen difficult. This is possibly just an extension of muscular weakness.
Heart Palpitations: My heart seems to flutter, often causing me to cough or become breathless. When I am fatigued, sometimes exertion (such as drying my hair, walking up stairs) can cause a heart palpitation, but often they happen for no obvious reason.
Sore Heart: My heart aches, just behind the lower right corner of my left breast. This can last a moment or two, or go on for days. (Only once has it gone on constantly for days) Often this is coupled with tingling or numbness in my left side.
I Bruise Easily:
Itchy Ears: Sometimes this can feel like water in my ears, or a small animal trapped in there. Other times it just feels so itchy all through my ears and throat.
Swollen and bloody nasal passages upon waking:
Extremely dry and painful eyes upon waking:
Back problems: Unrelated to CFS, but exacerbated by inactivity and weak core muscles. Treatment (problems are ongoing, but acute treatment is effective) – regular chiropractic appointments, core exercises and regular stretching.
Sciatica: Extreme uncomfortableness in my right buttock and thigh. Managed (fairly well) by stretching and not sitting in the cold, chiropractic treatment
Tingling in my right thigh: This is a constant, but is most noticeable at night. Sometimes this can turn into the entire right side of my body.
Fibromyalgia: Pain. Mine is generally located in the spine, back muscles and legs. Sometimes I feel it in my arms too. It migrates. I generally don’t get debilitating pain. On my worst days after pushing myself it can feel like I’ve been given a spinal tap.
Tender Points: These are small spots on my body that hurt a lot if you press gently on them. I have them on my arms, bottom and back.
Muscle Cramps: Sometimes I get cramps in my back and legs.
Vision disturbances 1: One or both eyes shudder back and forth on the horizontal plane. This increases feelings of dizziness and instability.
Vision disturbances 2: clouds of vision ‘disappearing’, mainly in the upper right corner of my field of vision.
Vision disturbances 3: I seem to have a smaller field of vision when I am tired. My peripherals seem to close in.
Vision Disturbances 4: I have days where I don’t seem to be able to focus properly. This could be a milder case of the ‘shuddering eyes’.
Poor spatial awareness: I walk into things. I think that vision disturbances contribute to this (smaller field of vision, clouds of vision missing in upper right corner, wobbly vision) but it’s also that I don’t perceive things as fast when I am tired, and that I look down to minimise visual input when I am tired.
Strange blood-flow issues: I sometimes get extremely cold feet (sometimes extending up to my legs and hands). My feet are so cold it makes me feel nauseous. Strangely my face and neck are very flushed and uncomfortably overheated.
Dizziness: When I am very tired, I am constantly dizzy. If I am less tired it can be triggered by moving my body, from walking, or from standing up or leaning over.
Allergic Rashes: Inside my nose and in-between my fingers from dish-washing liquid. On my lips from lipstick. On my scalp, unknown cause. On my legs, unknown cause.
Cough: reaction to nuts and some preservatives, and Spirulina.
Proctalgia Fugax: Sudden sharp pain in the anus or lower digestive system, sometimes inside the vagina. The pain is intense, lasting between 5 seconds and a minute. After it stops it goes back to normal straight away. It comes in episodes, perhaps two or three times a day for a few days, then nothing for a few weeks. Possibly due to food intolerances or exposure to chemical allergens.
Anal Fissures: Splitting of the skin around the anus, causing bleeding and discomfort. Sometimes caused by constipation, sometimes not.
Constipation: Caused by food intolerances, most noticeably gluten.
Painful Bloating: Caused by food intolerances and possibly also exposure to chemical allergens.
Thrush: It comes in episodes, maybe a month or two of two to four times a month, and then is fine for a few months.
Difficulty falling asleep: Temazapam helps a tiny bit
Swollen Glands: Sometimes my entire neck feels enlarged. I can get swollen glands for months on end.
Not being able to recognise hunger or thirst: Possibly because I became adept at ignoring the pain from my body. I often forget to eat and drink, and am always surprised at how hungry I am once I start to eat. I eat out of habit, to satisfy cravings or because I am bored. This gets worse when I am fatigued, but it could be because I am preoccupied. It also gets worse when I am stressed or overworked.
Immune System: I hardly ever get a cold, even when exposed frequently to nasty flus. I do seem to pick up slap cheek and measles in a very mild form when it goes around, but I fight it off without taking sick days.
In the Comments:
Have you ever compiled a list of your symptoms? What are your worst/most unusual symptoms?