Monday, 28 Feb 2011

Balu back in his natural habitat in Tenerife

Tired and have a headache because I hadn’t been able to get to sleep until 3-4 am. Neck pain still troublesome and have pain in left kidney area that always happens whenever I’m short on sleep (most of the time). Had to take Balu to the vet this afternoon. Mitigated walking by taking the bus there and taxi back, but the outing was still tiring and has caused much more pain my legs, back, arms, shoulders, hip … Got home, lay down and was unable to get up again because of the pain and stiffness. Couldn’t even find energy to think or even watch TV.

Tuesday, 1 Mar 2011

Woke up feeling like I hadn’t been to sleep. Sore throat and feverishness; burning, gnawing pain in my right hip; have a really bad headache with shooting pains right up the right-hand side of my head and that is not responding to 440g of Naproxen. Hot and cold like flu symptoms too. Neck pain worse again, probably from lifting and pulling the trolley with the portly feline yesterday.

Wednesday, 2 Mar 2011

Awake half the night – woke up at 1:30am, then again shortly after 3am – when I was then wide awake. Played games and watched TV waiting to get sleepy again, but it wasn’t until 7:30am that I was able to get back to sleep again. So then slept until mid-day, but woke up feeling like I’d been run over by a truck. My entire body is utterly fatigued, feels heavy and sluggish. It’s taking supreme effort just to get to the kitchen and back. Pain in my lower legs is increasing again. Also woke up with a severe, pounding headache. Dare not take any further pain relief, as that a) doesn’t work and b) has once again made me severely constipated, adding to the pain. Have also got a sore throat again and the patch of tender skin on my right foot is especially sensitive.

Thursday, 3 Mar 2011

Actually slept through the night! Woke up only averagely knackered with mild to middling aches and pains all over. Also seem to have half a brain today, but am resisting the temptation to resume activities, because it would soon take me back to agony and exhaustion. But, have been able to make a couple of short phone calls and answer some messages. Spoke too soon … by lunch time, as soon as I got up, I felt light-headed and unsteady, so back to the default position (reclining), rather than fall on the floor again, which is what would happen if I were to push myself. Also experienced some chest pain again, I thought it best to remain resting to prevent that becoming worse. Chased the chemist over prescription delivery. It seems they had judged me fit and not worthy! 

Friday, 4 Mar 2011

Slept, but had been dreaming so vividly and busily, I woke up absolutely knackered from all the activity. My knees are particularly uncomfortable today, as well as the usual neck, hips and the rest. Burning and tingling in hip again. Extreme nausea and physical fatigue. Feel like my back is broken and cannot manage to sit up without listing and need carefully placed cushions to support me, yet it is now even painful and difficult to move those cushions into position.

Saturday, 5 Mar 2011

Woke up fatigued and achy, but a better day than of late. Actually the first not-so-bad day of the year so far, which is not that great.

Sunday, 6 Mar 2011

Really couldn’t wake up this morning. Feel like I’ve been flattened by that proverbial 10 ton truck again; limbs heavy like lead, movement feels like it’s through molten concrete, dragging a heavy weight. Snuffly and achy with cold.

Signs and Symptoms of Autonomic Dysfunction

An interesting, if long – but this merely reflects the number and complexity of symptoms we suffer – list of signs and symptoms of Autonomic Dysfunction (a.k.a. Dysautonomia). If you read through them, you’ll recognise many that you probably associate with your fibromyalgia, ME/CFS and even IBS, multiple chemical sensitivity and other related and overlapping conditions.

For my own purposes, I’ve stuck through the very few symptoms that I don’t get on this list. Honestly, seeing them all listed like this, even I don’t know how we manage to put up with them and function on any level at all.

Some of the listed symptoms are always present while others occur when a person with Autonomic Dysfunction has been standing or sitting too long:

1. -Dizziness
2. -Light-headedness
3. -Vertigo (room spinning or the sensation of spinning)
4. -Feeling faint (pre-syncope)
5. -Fainting (syncope)
6. -Chest pain or pressure
7. -Excessive fatigue
8. -Rapid heart rate (tachycardia)
9. -Stomach pain
10. -Intestinal cramping
11. -Nausea
12. -Vomiting
13. -Retching
14. -Exercise Intolerance: becoming short of breath on mild exertion, having chest pain or palpitations on mild exertion. Having excessive heart rate during or immediately after exercise.  Leg cramps or numbness of arms and legs during or after mild exercise.
15. -Visible pooling in arms and legs: Deep purple-red colour in fingers and toes.
16. -White appearance of fingers. Some present with white patches of skin on arms and legs.
17. -Extremely cold hands and feet.
18. -Numbness of hands and feet.
19. -Muscle weakness
20. -Muscle and joint pain
21. -Tremors or mild shaking of hands
22. -Frequent headaches or migraine headaches
23. -Irritability due to decreased blood flow to the brain
24. -Feeling anxious/Having panic attacks due to increased production of adrenaline
25. -Mood changes
26. -Forgetfulness
27. -Inability to concentrate or remember (frequently referred to as "brain fog")
28. -Inability to tolerate changes in temperature
29. -Decreased sweating or excessive sweating
30. -Abnormal deep tendon reflexes.
31. -Basic neurological exam is normal.
32. -Intelligence normal when receiving adequate cerebral perfusion.

Less frequently recognized signs and symptoms:

1. -Insomnia
2. -Disruption of sleep/wake cycle usually consisting of increased energy late in the evening and lowest energy level in the morning regardless of amount or quality of sleep.
3. -Central sleep apnea
4. -Need to sleep 12-14 hours in order to complete simple activities of daily living.
5. -Anoxic or convulsive seizures that are not epileptic.
6. -Frequent need to urinate at night.
7. -Upon standing feels head is "heavy". This resolves with lying down or with walking around.
8. -Decrease in (or absence of) lubricating tears in the eye.
9. -Sensitivity to bright, florescent light and bright sunlight. Many patients report feeling pre-syncopal in large grocery stores and department stores that use excessive florescent lighting. Flashing lights and multi-coloured lighting can also produce symptoms.
10. -Visual distortion: Television screens and computer screens can appear distorted, especially post-syncopal or pre-syncopal episode. Flat screens are recommended.
11. -Distorted depth perception resulting in a feeling of unsteadiness. Often appears to be "clumsy" or excessively cautious when climbing stairs, reaching for an object, etc.
12. -Other visual disturbances include a greying out or blacking out of the visual field; either partially or completely.
13. -Decreased awareness of what is in the peripheral visual field. This often causes the patient to startle because they did not perceive anyone or anything next to them.
14. -Frequent "bumping into things". Attributed to a combination of visual and depth perception deficits.
15. -Noise sensitivity. Loud or beating sounds can cause pre-syncopal episodes. Difficulty filtering out sounds. Easily distracted by sounds.
16. -Sensitivity to odours, even pleasant smelling chemicals such as perfume. Odours such as cleaning products, gasoline, strong foods, etc. may cause extreme nausea, retching, vomiting, dizziness and headache.
17. -Decrease production of saliva or excessive production of saliva.
18. -Severe constipation and decreased gut motility.
19. -Weight gain regardless of diet modifications.
20. -Overall slowing of metabolism is common.
21. -Increased metabolism (rare)
22. -Excessive gut motility leading to chronic diarrhoea and weight loss. (less common)
23. -Sensitivity to touch. Mild pat on the arm or squeeze of the hand can cause excruciating pain especially right after an episode or if the patient has not had enough sleep.
24. -Decrease sensitivity to pain/touch in certain areas. If standing or sitting too long causes hands and feet to turn cold and blue, patient will have decreased sensation in these areas due to poor blood flow.
25. -Taste and appetite changes. Fruits and other acidic foods may taste extremely acidic. Foods may taste differently if patient is tired, stressed, or post-syncopal episode.
26. -Hair loss due to decreased blood supply to hair follicles.
27. -Speech disturbances: Inability to finish an expressed thought, loss of train of thought, "spoonerisms", especially if up and about for 2 hours or more without lying flat and resting.
28. -Comprehension difficulties. Inability to follow a conversation. May hear words but is unable to understand their context in the sentence. Cannot focus on more than one activity at a time. May not realize they are being addressed. Losses conversation focus when topic is changed. Is easily distracted from the conversation focus by any environmental stimuli.
29. -Memory recall deficits in long and short term memory. Improves with lying down and resting.
30. -Abdominal migraines. Severe stomach pain triggered by large meal or by sitting or standing too long. Usually resolves if patient lies quietly.
31. -Drifting to the right or left when walking. Most commonly patients report drifting to the left. Many patients report always fainting to the left as well. Appears to be unrelated to hand-dominance, but further research is needed.
32. -Tend to have mild symptoms of Ehlers-Danlos, but do not necessarily test positive for the disease. This includes hypermobile joints, double joints, and soft, velvet-like skin that has little or no texture.
33. -Often has another auto-immune disorder.
34. -Family History of auto-immune disorder or symptoms that resemble autonomic dysfunction.
35. -Appears to have more viral illnesses than general population. Often diagnosed with Chronic Fatigue Immune Dysfunction Syndrome.

(Via: Signs and Symptoms of Autonomic Dysfunction)

Monday, 21 Feb 2011

Perch style bus stop: utter torture and adds inaccessibility to disabled people.

Same old, same old … Woke up with feverishness again. Shaky and nauseas as soon as I move to do anything. Neck hurting more than usual. Today, I had an appointment with the Rheumatologist. Decided to try the bus to get to the hospital. Sensibly took a soft collar to help avoid more neck pain. Walk to bus stop was too far and the seat in the bus shelter was more of a ledge and entirely unsuitable and just added to my discomfort. Even turning my head to be able to cross roads on the way to the bus stop or look for the bus approaching was unbearably painful and each time caused a severe shooting pain accompanied by more nausea. The long, jolting bus ride was tortuous. However, expecting the usual “we found nothing” result, I was quite shocked by the diagnosis of cervical spondylosis (arthritis of the spine). Mind you, because of ME and my usual issues with drug reactions, this will be difficult, if not impossible to treat. 

Tuesday, 22 Feb 2011

Despite having been out yesterday, I went out again today to a talk to learn about myofascial release, in hopes that this may be able to help with my issues. The rheumatologist yesterday had said that I need to try to get the fibromyalgia under control in order to reduce the pain from the arthritis (not sure how). It was a good afternoon, but involved another, long, taxing journey by bus.

Wednesday, 23 Feb 2011

The result of two outings on the previous days – despite being relatively short and in any case merely for hospital and therapeutic reasons – was THE most excruciating pain all over, which showed no signs of abating all day. As well as unbelievable neck pain from the jolting of the bus journeys, all my joints were clicking painfully, my skin feels tender and bruised everywhere and my muscles as if strained. Was unable to get up even to make food as could not moved for the severe fatigue. Had to take a nap in the afternoon.

Thursday, 24 Feb 2011

Still feel sore and bruised all over from the outings. My joints all feel like they’re assembled wrong and I am still very fatigued – I mean more than normal. Unable to concentrate on anything. Staying on bed, as usual.

Friday, 25 Feb 2011

Feel absolute crap again. Still really sore overall and woke up with especially bad neck pain that continued throughout the day, making it once more impossible to sit up without cushions to support my neck to mitigate the pain, which does not respond to painkillers.

Saturday, 26 Feb 2011

Neck pain is not improving and is only partially relieved by immobilising it with neck cushions. Any movement, even light stretching, just causes an increase in the pain. My eyes are painful again and I am still more fatigued that usual. Pushed myself to fill in application for counselling.

Sunday, 27 Feb 2011

The neck pain still just won’t let up. I’ve tried gentle movements (exercises, stretches), but that currently just makes it worse. I’ve tried immobilising it, which does help, but only while I’m reclining  – it doesn’t give any lasting relief and means starting again from scratch every time I’ve had to move to go to the loo, whatever. Maybe amputation would help? I am so tired and yawning today, it’s as if I hadn’t slept. Cannot concentrate at all.

Brain shakes

At one point during the night, I was lying with my eyes closed and could feel, very markedly, every pulsation, in time with my heart beat, running up through my neck and head.

You know the images you see when your eyes are closed, well those were “jumping” in time with the pulsations, just like the picture of an old analogue TV, when the horizontal and/or vertical hold went squiffy.

In addition, I felt dizzy and nauseous. You know the sort of dizzy and nauseous that you normally lie down to escape from … except, of course, I was already lying down, so there was no means of escape from it until I, eventually, fell asleep again. It was all this and this, without the drugs.

This morning I woke with a stabbing headache and felt sick and shaky as soon as I moved. I have sensations of “brain shakes” often, but never quite this bad.

Monday, 14 Feb 2011

Cold, achy and joints clicking painfully again, with a sore throat. Walk to kitchen to make breakfast was enough to provoke pain in hip and lower legs again. Just that was enough to exhaust me for the day.

Tuesday, 15 Feb 2011

Woke up aching and snuffling again, with a sore throat like I’m coming down with flu or tonsillitis. Glands in neck sore and swollen again. Joints all clicking painfully again. Cold again in the house.

Wednesday, 16 Feb 2011

Today I was offered Cognitive Behavioural Therapy (CBT). I was most restrained and avoided swear words when turning the useless sh*t down. Not a good day. I’d woken up with such terrible pain and burning in my legs and such utter physical exhaustion that I absolutely could not move my limbs for some considerable time. My first thought on waking was that I really need to lie down. Of course, I was already lying down.

Thursday, 17 Feb 2011

At one point during the night I was lying down with my eyes closed and could feel, very markedly, every pulsation, in time with my heartbeat, running up through my neck and head. You know the images you see when your eyes are closed, well those were ‘jumping’ in time with the pulsations, just like the picture on and old analogue TV, when the horizontal hold went squiffy. In addition, I felt dizzy and nauseas. You know, the sort of dizzy and nauseas that you normally lie down to escape and recover from. Except, of course, I was already lying down, so there was no escape from the awful feeling until I eventually fell asleep again. This morning I woke with a stabbing headache and felt sick and shaky as soon as I moved. I have sensations of ‘brain shakes’ often, but never quite this bad. I stood for a minute or so, but immediately got severe pains in my lower legs and ankles, so had to lie down and elevate them. Woke with pain and burning in legs anyway, with the now customary painful, clicking joints and sore throat.

Friday, 18 Feb 2011

Woke up with feverish headache, sore throat and catarrh, along with aching muscles and sore joints. And very cold again. By lunch time severely sweating and overheating again. Got up only a minute or so at a time to print some pages and prepare 2 small packages for the Post Office and became breathless, shaking and feeling uncontrollably sick. Needed to lie down down again to recover from this. [Yes, I would be physically sick otherwise.] Must go to the Post Office as I have a hospital appointment on Monday [And couldn’t do both on the same day and can’t do outings on consecutive days either. And need to rest before the journey to the hospital …] Had to sit down half way through shower and was overcome with light-headedness and nausea. Same happened again when I got to Post Office counter, when I almost lost it and keeled over. Got home exhausted and had to lie down again, but then couldn’t move again for hours. Couldn’t even straighten up to walk to the loo and felt too exhausted and sick even to sit up.

Saturday, 19 Feb 2011

Woke up with the feverish headache, sore throat and catarrh again. The only thing I managed was some cooking a couple of minutes at a time, with rests to lie down in between. Tried to peel some apples, but did not have enough power in my wrists and the attempt was excruciatingly painful. Had to get help as was not able to complete the task. Even tried doing it sitting in bed, but still could not manage it. Managed nothing else today.

Sunday, 20 Feb 2011

Been having really bad dreams again. Last one, fighting a man who was trying to attack me. Woke up feeling like I’d been fighting all night. Even worse feverish headache, sore throat and catarrh again this morning, along with hard and swollen glands in neck, just as I used to get with tonsillitis [Had tonsillitis probably every other week when I was about 11-12, with swollen glands and constant, repetitive courses of antibiotics. Have since read that many children with ME present with this history, so this is probably where it began. I doubt the antibiotics helped my immune system.] Kept going hot and cold all day, as if I have a fever or flu. 

Monday, 7 Feb 2011

Could not move this morning. Pain everywhere. Was tossing and turning in the night, trying to get comfortable, but every position hurt. Could not lie on hip (R/H), but could not lie on left as I could not place right leg on top of left because of pain in the left knee, nor place the left face of right foot on the bed because of the pain and soreness on the toe joint. Can hardly straighten up to walk. Hip, neck, back and legs are all in agony again. All joints are clicking and banging painfully. It hurts to move even to get out of bed or to rearrange and position myself in bed. It hurts to lift the laptop from bed to lap. It hurts to have laptop touching my legs and stomach. And I have a headache. By 3pm I could do no more: I mean I could not even manage a reclining position and had to lie flat to half-watch TV. Fell asleep in the early evening, but slept through the night as absolutely exhausted from the pain.

Tuesday, 8 Feb 2011

Woke up even stiffer today and could hardly shuffle, let alone walk and keeping balance was difficult. Left shoulder is frozen – it had been years ago in Tenerife, when my left arm was numb for months – with pain and weakness back in both wrists and hands. Could not even open a jar of honey (not even a new one), nor carry a cup and saucer. Pain in hip and legs still bad. Still hurts to have laptop on legs / stomach. Now also hurts to type or operate mouse. Starting to get deep pain in left kidney area again and to feel sick. Made lunch and was almost too knackered to eat it. Want to hoover the floor, but dare not expend the energy. It’s sunny and I need to go the Post Office and I would like to go for a walk, but I know that this would be too much for me today. There is a shaking storm going on in my brain and I can feel my pulse in my head constantly. I keep overheating for no good reason, feel as through I have a fever and am coming down with flu again – post-exertional malaise, this time without recent exertion.

Wednesday, 9 February 2011

Had real trouble waking and moving this morning and felt like I hadn’t slept. Pain in hip is radiating down into the top of thigh, burning a ‘fizzing’ feverishly. Both thigh muscles are tight in spasm. Knees sore. Joints clicking and painful. Everything sore: throat, muscles, skin, et al. Feverish headache, neck pain and nausea. Dull pain in kidney again. Once again dizzy and feel sick and have to lie down again immediately if I even try to stand up. Once again, can only accomplish small tasks that can be accomplished lying flat (which, obviously, is not much). 

Thursday, 10 Feb 2011

All the usual aches and pains and feverishness, plus mother bitching about what she ‘wants’ and says she doesn’t care that those things make life harder for me. She’s fed up with the ‘inconvenience’ of my ‘illness’. Then she said the latter is not the case, but her actions tell another story. [She refuses to believe I’m ill.] As usual, it would be hard to prove whether she was being ignorant or malicious, but whichever it is, the stress this adds for me only makes matters worse.

Friday, 11 Feb 2011

Accumulation of the last few days’ physical downs, plus the emotional stresses made this a day where I was unable to achieve anything.

Saturday, 12 Feb 2011

First day in forever that I woke up feeling half-human. All the usual aches and pains, and tired, as ever, but felt better than the usual really unwell. Of course it didn’t last! Standing for only a minute or so to throw some ingredients into a pan for lunch (plus the walk to the kitchen and back) were too much. Enough to reactivate the pain in my hip, pooling in my lower legs, breathlessness, headache and the usual overwhelming need to sit back down (before I fall down). By mid-afternoon, I had to lie flat and fell asleep. Woke up with a sore throat, swollen glands, feverish headache, aches, herpetic tingles ...

Sunday, 13 Feb 2011

Had to take constipation relief last night as I’d not been to the loo for a few days and the resultant headache was mounting. Reacted badly to that medication with a dreadful stomach ache. That had not happened previously. Today I couldn’t wake up and my joints are clicking painfully. Already feel exhausted before the day starts. Decide to rest so that maybe I will recoup some energy.