ME Symptom Diary: February 2011

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

Tuesday, 1 Feb 2011

Stood up for no longer than 2 minutes – probably less – while talking to a visitor at the door, which increased to pain in my lower legs, ankles and feet yet again. Standing ‘this long’ also made me breathless. Immediately after this ‘exertion’ I began shaking. This took maybe half an hour to subside, but didn't disappear until after I’d eaten lunch. Even so, the general malaise and nausea lasted right through into the evening. Tried to read a book today: can’t hold a book for any length of time, because of weakness and pain in my wrists; can’t support a book on my knees, because raising my knees increases the pain in my lower legs and feet; can’t rest the book on my stomach because of extreme tenderness from a laparoscopy scar (laparoscopy done in 1989) that just won’t heal and, can’t concentrate sufficiently for more than a paragraph or two. Gave up.

Wednesday, 2 Feb 2011

Tried to do a modicum of housework as mother coming home from the hospital today (hey, I tried!), but I had to do only small tasks then sit down again, as I became exhausted, breathless and began shaking from the exertion after only a minute or less, at the same time overheating and sweating profusely, becoming nauseas and my head began spinning. The movement – just walking around the house – also caused my hip pain to flare up and worsen again.

Thursday, 3 Feb 2011

Actually slept and didn’t feel quite as exhausted as usual when I woke up. Knees were very painful, stiff and felt as if they were swollen again, however. Energy did not last. By mid-day, gave up and was only able to half-watch banal TV again.

Friday, 4 Feb 2011

Peeled one apple. Standing ‘so long’ to do this made me so light-headed and dizzy that I had to sit down. I’d slept OK, but I just could not move in the morning and just could not stop yawning. Was particularly stiff with flu-like aches all over.

Saturday, 5 Feb 2011

Ditto yesterday’s symptoms. Too unwell to do anything.

Sunday, 6 Feb 2011

Today hip and lower leg pain off the scale again. Was dizzy and light-headed as soon as I stood up out of bed. Nausea. Headache. 

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.

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, 21 Feb 2011

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.

Monday, 28 Feb 2011

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.

ME Symptom Diary: January 2011

It’s still early in the year, certainly, but already, days 2 & 3 have been notable deteriorations from day 1 and this does not really bode well.

Saturday, 1 Jan 2011

To begin with, I’d slept through the New Year celebrations, because basically, I couldn’t be arsed. I felt so crap anyway, as I still had a stomach ache – it still feels like someone kicked me in the abdomen - after a painful attack of IBS on the morning of the 31st. Managed to check my meagre finances, pay the odd bill and “potter” a bit on the internet. 

Sunday, 2 Jan 2011

Woke up too early, from not enough sleep, feeling utterly exhausted. By mid-morning I gave up. I couldn’t sleep, because I’d gone way beyond tired, but I couldn’t do anything productive, so I lay down to half watch [for watch read: it was on] some banal TV that I didn’t need to think about in order to follow. Today, I wrote this, but otherwise, it ain’t shaping up to be a much better day. In what way can I see any of these things improving in 2011? Frankly, I can’t.

The wonderful Holly

Monday, 3 Jan 2011

Managed 10+ hours of sleep last night, but, as is common, it was plagued by lengthy, vivid dreams with realistic and convoluted plots. Again, as happens a lot, Holly was with me in these dreams. We played, she bounded everywhere – like she did. It was WONDERFUL spending this time with her. It was DEVASTATING to wake up each day to the realisation that she’s gone and then re-living the unbearable grief. Woke with a headache, stiff and couldn’t get going until after the 2nd cup of coffee and really didn’t anything constructive after that. Updated the music on my MP3 player, which was not a great thing to in the evening, as the music stimulated me too much, so I couldn’t get to sleep until 3am.

Tuesday, 4 Jan 2011

Woke with the alarm at 8am, but was too knackered to move until 10am, having dozed in between. As we’re now back to the normal vegan diet, I actually don’t feel quite so bloody awful today. Nausea gone, so maybe I’m getting used to the Gabapentin too. [Spoiler alert: I wasn’t.] Better, of course doesn’t mean cured though, because I “just” feel as if I’ve been beaten and battered and flattened by a steamroller - a day where I feel that “if I take it easy”, I might feel able to do something in a few days. Exactly how one takes it any easier than being bed-bound except for loo and kitchen trips though, I can’t say! Did nothing productive and instead spent the day merely browsing fun and pleasant things and bought a few items on eBay to add some colour and cheer to my surroundings.

Wednesday, 5 Jan 2011

Only 4 hours sleep last night – music is great, but it’s too stimulating late at night – so I woke up feeling absolutely dreadful. Interesting article on Science Daily said the metabolic cost of a night without sleep is roughly equivalent to a 2 mile walk. Although it's hard to get across how severe the effects of something "as normal as" a two mile walk would be, in contrast, for someone with ME.]

But, I can absolutely equate to that. The [physical] stress of the missed sleep has left me feeling strung out, and has caused another cold sore, so I feel unwell generally from that. Pain levels (hip, neck and back) raised again. Concentration impossible, so I did nothing productive again, beyond writing one short email.

Thursday, 6 Jan 2011

Slept from 2am to around 10:30am, but I don’t feel caught up from the lack of sleep the night before and thus, woke up feeling like I still needed a lot more sleep. It’s also raining (again), so pain levels have shifted up yet another notch and the effects of Naproxen – which isn’t much anyway – soon wore off. Trying to read with music playing made me feel nauseas [more than usual]. When I got up to go to the kitchen, I felt dizzy and lightheaded again. Had chest pains all afternoon and into the evening, which also left me feeling tired and washed out. Pain in my right eye again. And back to not being able to go to the loo again.

Friday, 7 Jan 2011

Fell asleep just after 10pm last night. Half-woke when alarm went off, but didn’t actually stir until 11:45am – 13.5hrs sleep in total. Caught up at last? Nah. Didn’t feel any more able to do anything; certainly no more energy than usual, although less nausea. And weather still humid, so pain levels still high, particularly in my hip. Back pain particularly bad too, which might be related to [sluggish] digestive function. Again. So, yet another day where I browsed aimlessly as I couldn’t concentrate sufficiently for anything more, nor had the energy to do so. In sum total, I only managed productive tasks – online, lying down – for a short while (maybe an hour). Yes, this is ‘normal’. 

Saturday, 8 Jan 2011

So much for a good night’s sleep. Woke up at 4am and didn’t get back to sleep again until around 6:30. Took another Gabapentin in hopes that would help, but all it did was to give me stomach ache and pains in the chest again. Woke at 11:15 feeling grotty, not rested and with a major headache. I really want to change the bed, clean the room and sort my wardrobe, but I just don’t have the energy or ability to do it. [For the umpty-thousandth consecutive day.]

Sunday, 9 Jan 2011

Didn’t feel too bad when I got up at 9:45am, but as soon as I made breakfast, I was absolutely done in. Spent the rest of the morning lying down. Later, changed the bed. It took an hour and left me shaking with exhaustion from the exertion and unsteady, nauseas and hot enough to fear spontaneous combustion. Almost. Taking a shower after dinner was difficult to stand and balance.

Monday, 10 Jan 2011

Not the best of days and not the worst either. Got 7 hours sleep and was up at 8am, which almost gave me the idea that I could have a productive day, but did not feel well enough to go out and cancelled appointment to go to a group in the afternoon. I know I felt too crap even to write this diary on the day, and now I can’t remember what I did, so it cant have been at all memorable! Did arrange doctor’s appointment for Friday to discuss the Gabapentin.

Tuesday, 11 Jan 2011

Didn’t get to sleep until 4am, but slept until noon. Got my 8 hours then! Cats not terribly pleased to be getting breakfast at lunch time. Nevertheless, I’d felt particularly bad hip pain even while I was still lying in bed. This didn’t get any better (and probably heralds rain). Also my knees are painful and stiff, clicking badly if I straighten my legs, in the same way as they’d be after a long walk. Thus, yet again, didn’t think it the best idea to grovel on all fours to clean the carpet. It will have to wait again. Was able to do some stuff on computer and watch some TV. On the other hand, just writing this is making my hand hurt again. Put off going to Spanish Circle for yet another month because I didn’t feel up to it.

[A combination of cheap quality carpet (not mine) and a hoover that doesn't work (this is denied) mean that cat hair (my fault, of course) has to be removed by hand, with a brush, on hands and knees. It is ridiculous torture.]

Wednesday, 12 Jan 2011

Hum mm … hump day and another, where, obviously, I had neither the energy nor the motivation to write this [diary] on the day. Slept from 03:45 to 10:30am, which is still not sufficient to be able to confront the day with any reserves.

Thursday, 13 Jan 2011

Only 5 hours sleep meant I started the day wired and tired and everything just went down hill from there, as there was no way to find either the energy or the motivation to do even the simplest of tasks. Started a few, but finished none, so gave up to watch [loose term for it was on, not that I was really focussed on it] yet more banal TV, and anyway, there wasn’t anything even remotely interesting on. This is no existence, let alone life! Got 3 hours sleep in the evening – fell asleep watching TV – woke up at 10:30pm and wasn’t able to go back to sleep again until 3:30am, despite being too tired to actually do anything.

Friday, 14 Jan 2011

As always when I wake up in the middle of the night and therefore get sleep in more than one block, I woke up feeling as though I hadn’t slept and was done in even before I began. Had to do some photocopying and printing and just this minor exertion and need to be vertical caused me dizziness, nausea, extreme sweating and pronounced shaking. Had an appointment with my doctor. She repeated my prescription for Venlafaxine and prescribed Pregabalin (Lyrica) instead of the Gabapentin. Went to the Post Office. Delivered some forms by hand elsewhere. Got a few items of shopping and collected prescriptions. Walking got slower and slower and more painful. Even shop assistants noticed that I was exhausted. Yet another headache. Hip pain off the scale. Pain in lower legs. Pain in back. Neck needs support because of the pain. Usual symptoms after an outing.

Saturday, 15 Jan 2011

Seven hours sleep – from 3:30am to 10:30am – isn’t terribly deficient, but still woke up beyond tired, with very little energy with which to confront the day. Otherwise [surprisingly after an outing] didn’t feel too bad – that is until I took my medications. Then I began to feel sick and dizzy. Had to get a stool as I couldn’t stand to make dinner. Was asleep by 8:30pm, because I was too exhausted and felt too unwell to do anything else. Will be glad to wean off the Gabapentin, because it has only done harm and no good whatsoever.

Sunday, 16 Jan 2011

Woke up at 1am and couldn’t get back to sleep until 6am. Simply couldn’t get comfortable as hip pain was spreading down and round the top of my thigh with a herpes-like tingling and burning right down to the bone. My knees felt swollen and stuck as well as painful. My lower legs hurt. The skin on my right foot is so painfully sensitive I can’t even put it down on the sheet. It is utter hell. Consequently, I am exhausted again today before I start. 

Monday, 17 Jan 2011

Eight hours sleep (barring a few half-awake moments when the two fur people tried to raise me for their breakfast), all in one go and achieved without drugs. This is a first for months, but I won't expect it to be repeated. I decided to go “cold turkey” off the Gabapentin since I'd only been taking it for 2-3 weeks. I've also decided not to start the trial of the Lyrica (Pregabalin) until after I've given the Venlafaxine 3 months. After all, having waited this long for pain relief, what's another couple of months? Fell asleep at 8:30pm and woke up again at 10:30pm and was way awake again until 3:30am. Got another six hours sleep. 

Tuesday, 18 Jan 2011

Cats were insistent about getting me out of bed at 9:30am. Still tired and not rested, because of getting sleep in two separate slots again. Fiddled around on computer, but did not have the ability to concentrate sufficiently to do anything constructive. Otherwise achieved nothing else today, besides eat.

Wednesday, 19 Jan 2011

Got the sum total of 2 hours sleep last night. Managed a nap of about 2 hours more in the afternoon and, in between, guess what I managed to do? Yep, nada, nichts, rien ... Nothing. At. All. Could barely follow a couple of episodes of ‘Bargain Hunt’. Consequently, pain levels, as usual in back, neck, hips, knees and lower legs are off the scale. The tenderness on the inside of my right foot (big toe joint) has also been increasing a lot again lately to the point that I cannot even stand to touch the bedsheets with it. Also, as is frequent when I’m super-exhausted, my nose is prone to bleeding and filling with dried blood.

Thursday, 20 Jan 2011

Took the cats out for a walk to the end of the house and back. [As you do.] Well, Kitty walked. Balu was dragged and carried, as usual. And just this minor exercise made me breathless, exhausted and left me feeling unwell from the “exertion”. By mid-afternoon I could barely sit up and had to lie down in the dark and quiet again. Dozed later, but didn’t sleep. Started getting a dull pain between my shoulder blades again, like I’d been hit and winded.

Friday, 21 Jan 2011

It’s been a very long time since I felt this close to actually puking, even though I feel a certain amount of nausea most days. I’m also shaking and just feel unwell. I’m also getting stabbing pains in my head, which are random and in all different locations – they feel like electrical impulses, which is probably what they are. Took Buscopan to quell IBS symptoms but still have an unbearable stomach ache. I’m also more confused and ‘foggy’ lately and think this all has something to do with when mother washed the kitchen floor with a highly perfumed, chemical product the other day. It made me feel ‘gassed’ or poisoned at the time. Went round to the local shop and as soon as I got back, I had another dizzy spell. Applied heat to stomach ache and fell asleep straight after dinner.

Saturday, 22 Jan 2011

Raw, sore stomach ache again. Tried heat, but it did not help. Just feel awful. Oh and it’s cold again, so hip pain in worsened and it hurts even to sit in bed.

Sunday, 23 Jan 2011

Woke up stiff, achy, with painful throat and a headache. Pretty normal day then! Made a concerted effort to rest in hopes it would make me feel a tiny bit better and more able. It didn’t work, but then it never does.

Monday, 24 Jan 2011

Woke up with the stiffness and aches of being cold – not that I felt cold, just that the temperature had dropped to a level that increases my symptoms. Again had the sore throat, sniffles and feeling in my throat of having catarrh (though blowing my nose produced none) and the same type of headache – a vice-like, feverish headache – I used to get when I had fevers and recurrent tonsillitis as a child. It wasn’t even possible to raise my head up from the pillow without it feeling like my head would explode and I would throw up, for at least half the day. For the other half I was just exhausted.

Tuesday, 25 Jan 2011

Snuffling / catarrh symptoms again, though today they responded to Beconase, so it looks like my allergies have been activated again, probably due to doing a modicum of housework with a new carpet sweeper. Will ask GP for anti-histamine at next visit. Woke up with the same stiffness from cold – house is unheated at night – again with a feeling of swelling in my joints, especially knees. Exhausted before I start, as usual, with the feverish headache. Actually felt a little bit better than of late and managed menu planning. Had to go to shop for food as had no alternative. Walk made me overheated and increased pain in my hip. Had to wait in the Post Office and almost fainted. Undue pressure being put on my with questions over when I will do tasks. Keep explaining that I will do what I can, when I can, but that I have no control over when that is. Mother just won’t get it.

Wednesday, 26 Jan 2011

Didn’t get to sleep until 7am. Alarm woke me at 8am, phone at 10am, cats at 11am and other noises in between. Apart from feeling strung out, exhausted, pain levels and headache are off the scale. Can’t even lift head off pillows without feeling that it will explode. Nausea particularly bad once more. Having had to stand to wait (for just one customer) at the Post Office yesterday afternoon, the pain in my lower legs returned last night and continues today. [This pain is extreme and was the main reason I was unable to sleep.] Hip pain from outing also much worse than usual. Woman saw me stumble / waver while I was waiting. Told her I cannot stand, but she looked at me as if I were drunk. Once more the pain in the left side of my back started up – the same one that began all this in 1995 – dull, deep and sickening, as it always does when I’m extra exhausted. Then I started getting chest pains and tightening round the chest. No option but to spend the day lying down and resting once more. Another day where nothing was done, but where there was no possible alternative.

Thursday, 27 Jan 2011

Lower legs in agony from the short walk to the shop on Tuesday – even when lying down. Joints clicking, feel swollen and painful from cold. Knees and ankles worst. Right shoulder was stiff and painful. Felt dizzy and sick as soon as I got up. Right hip painful again with burning pain right down to the bone, in and around the top of my thigh, bruised pain on the underside and tenderness like from a fresh injury on outside of hip. Mother admitted to hospital with suspected gall bladder problem. Did washing up, cleaned work surfaces, toilet and swept hall and kitchen floor – before doctor and paramedics came. This activity, once again, aggravated the pain in my lower legs and hip, resulting in complete inability to stand up. Dr McLeod mentioned this, as she had seen for herself how I was struggling. Had a bath in the evening in the hopes of relaxing, but both house and water temperature were insufficient to be of any benefit.

Friday, 28 Jan 2011

Fell asleep, exhausted, around 9pm last night and, consequently, woke up at 3am. Didn’t get back to sleep until some time around 7am, then had the utmost struggle coming round at 11am when the cats were screaming incessantly for food. Cold again with all related aches and totally exhausted before I begin, but have to go out shopping. Have feverish headache yet again. First went to Post Office and would have caught bus to town, but could not stand to wait for 30 minutes. Thus, had to walk – slowly – but the further I went, the more pain in my hips and knees. Also too slow to keep warm, which caused my thigh muscles to spasm, which again increased pain that radiated to knees and hip. Was unable to do all I needed to do and had to abandon and get a taxi home. Was too exhausted when I got home even to make food. Sore throat again. Feel ‘fluey’.

Saturday, 29 Jan 2011

Another disturbed night, due to the extreme pain caused by outing yesterday. Did nothing, except watch some TV. Extreme post-exertional malaise, flu-like symptoms, sore throat and coughing as soon as I begin to speak.

Sunday, 30 Jan 2011

I’m reclining on the bed, I can’t sit up properly, because that hurts my hip. My legs are supported, up, on a wedge pillow to reduce the pain from the blood pooling in my calves and ankles, but I’m still in severe pain and have to move them constantly. The laptop resting on my legs is painful. My arms and wrists can’t stand to type for more than five minutes at a time. Writing is so painful I’m breathing as if I’m in labour. Neck supported, because it’s too painful and weak to support itself. [NOTE: in 2022, this describes ‘normal’.]

Monday, 31 Jan 2011

Still suffering post-exertional malaise and unable to do more than recline. Even getting into and out of bed is difficult and feels like a major exertion. Talking on the phone caused me to start losing my voice and get a sore throat. If I tried to continue to talk, I just started coughing. Flu-like malaise and aches so bad I took a flu treatment to try to help relieve symptoms. Another day where I was unable to do any more than skim reading and not really concentrate on banal TV.

ME Symptom Diary: December 2010

Christmas Aftermath

I noted yesterday that in the Xmas aftermath, I was having to wear sea sickness bands to lie on the bed. No, I hadn’t had a drink – not even one drop. 

The reasons (beyond the fall which hurt my knee and the course [NHS expert patient, ironically - I was self-managing more effectively before that setback] which screwed my whole routine and caused a flare) were in small part [due to] deviating from my usual restrictive diet and mostly to do with having to go out on the 23rd and then twice on the 24th to get my prescription of Gabapentin - that had been outstanding since the 15th - and then, foolishly, taking it. 

This was because, after 2 years of begging, I finally got some medication for pain: Gabapentin. Though, if I were superstitious, I might conclude that fate does not want me to have this, because of the lengths I’ve had to go to to get it:

Once the pain levels became unbearable in the UK, in September 2008, I went to the GP, who prescribed the amitriptyline and referred me to a rheumatologist, who confirmed my diagnosis of fibromyalgia and ME/CFS, but could offer no more in terms of treatment than to tell me to keep taking the amitriptyline. Eventually, I got the prescription changed to fluoxetine (Prozac), but that does nothing for pain and I could see I was really getting nowhere, so I changed GP. The new one wouldn’t prescribe anything for pain until a specialist recommended it and referred me to the pain management service. In August 2009, I was assessed at one facility, who thought a different facility were better equipped to help me, so I was referred on. I got assessed again in early 2010 and an appointment in the middle of the year, only to be told that they cannot prescribe at all!

After all that, in desperation, I asked the GP for another referral back to the rheumatologist to a) carry out an MRI scan on my constantly painful hip, b) to investigate the severe pain and loss of movement in my neck and c) to see if she would make this “magical” pain drug recommendation to my GP. She did all of those things and I’m currently waiting for a follow-up appointment to find out the results of the MRI that was done just before Xmas and an X-Ray on my neck.

So on December 15th, I went to the GP to see if she’d got those recommendations and finally got a prescription for the Gabapentin. Went to the chemist to find … they didn’t have any, so as I was going for the MRI the following day and wouldn’t have been able to go back again as they asked (a mile walk there and a mile walk back), arranged for them to deliver the gabapentin when it was available.

By December 23rd, it still hadn’t arrived and I was losing all hope of it arriving before Christmas – I was, naively, hoping for it to relive some pain so I could possibly enjoy the holidays – so I walked up to the chemist to chase it, only to discover that they STILL hadn’t had a supply in (snow was blamed) and yet again, was asked if I could come back the next day, Christmas Eve.

I’d specifically wanted to avoid having to go out on Christmas Eve and had done my last bits of shopping on the 23rd, because I didn’t want to repeat the bad flares that exhaustion + cold weather + extra holiday cooking, etc., have caused in previous years. I’d planned to get a taxi home on the 23rd, to try to mitigate the exhaustion, but there weren’t any available, so I’d had to trudge home, in the ice, carrying far more shopping than I could really manage and, consequently dropped exhausted when I got home and spent a sleepless night in terrible pain.

Nevertheless, on Christmas Eve, I trudged back in the ice to the chemist, asked for my prescription, was handed the familiar green paper bag and walked home.

You don’t tend to open the bag in the chemist: you accept the prescription you are handed, on faith. That’s something I won’t be doing ever again! When I got home, I found that it wasn’t the Gabapentin, it contained Fluoxetine. Back in August I’d had to go back and forth to the doctors umpteen times because a prescription went missing. At that time I did NOT have (had not yet made arrangements) for the surgery to send my prescriptions to a chemist, so it was definitely the surgery who “lost” it … So, they must have sent it to the chemist without agreement, because this was it, at the chemist all that time.

So I phoned the chemist to see if they had the prescription for the gabapentin. It had JUST come in, so it hadn’t been there when I’d called earlier. I gave the pharmacist an hour to get it made up and ordered a taxi to take me, wait for me while I got the prescription and then bring me home again. Just having to go out again was enough, I couldn’t possibly have walked all that way for a second time in the same day. Of course, it cost an arm and a leg, but I hoped that some pain relief would “relieve” the shock of this extra expenditure.

On Xmas day in the morning, when I took it the first time, it gave me such an awful high – very unpleasant sensation, never before known with a legal drug. Trying to cook Xmas dinner with my head in the clouds was no fun either. I wouldn’t have minded if it had done something for the pain, but it didn’t. So, Christmas Day, I started off knackered, I started on a new drug – which gave me a recreational quality, but very unpleasant “high” – and also started on a week of eating all the wrong things. It was a recipe for a bloody disaster, wasn’t it? 

When I read the label, I discovered that the gabapentin contains lactose and I’m lactose intolerant. You’d think it would be such a small amount it wouldn’t cause a problem, but I get relevant symptoms as soon as I’ve taken it, so I’m sure that it does and is adding to the increased severity and incidence of the IBS attacks. On the second or third day of taking it, I started getting severe chest pains and tightness. At one point I was lying in bed and I could hardly breathe (and couldn’t move to get help.) Apparently, this is a possible side effect of the Gabapentin and one that I should have sought immediate medical attention for. HOW?

It’s certainly not the first time I’ve had chest pains and whilst I am sure that various drugs have sparked off new episodes, I think these chest pains are all part of ME/CFS. These symptoms; chest pain, shortness of breath, tightness of the chest, palpitations, are also part of the cardiac arrhythmia - ectopic beat (or cardiac ectopy), also known as Premature Ventricular Contraction (PVC) – that was discovered when I had a 24 hour ECG back in October. Among other data, one reads that “In a PVC, the ventricles contract first, which means that circulation is inefficient.” This makes sense, finally, with my generally low blood pressure, the orthostatic intolerance and low blood volume (that cause blood pooling and pain in my legs). The trouble is, I’m already taking all the medications, supplements and dietary modifications that could help with it.

And, as (amongst other things), mitral valve prolapse (known to be co-morbid with fibromyalgia/me/cfs), magnesium and potassium deficiencies, adrenaline excess, lack of sleep/exhaustion and stress (all also related to / symptoms of fibromyalgia/me/cfs) are cited as possible causes of PVC, it’s all a bit “chicken and egg”. Did the PVC cause the fibro, or did the fibro cause the heart arrhythmia? Will I ever know? I doubt it. A cure? Even more doubtful.

The *price* for enjoying turkey, trimmings and sweet things (a LOT less of them than most people will have had) over the Christmas period was that I suffered alternate days of constipation and it’s attendant insupportable migraine-like headache and days with the exact opposite, along with the equally unbearable pains and spasms (like labour contractions) of IBS. Of course, I took prescribed medication to solve the IBS attacks, so the next day I wouldn’t be able go again and would need constipation relief, pain relief pills ... Rinse, repeat.

There are only so many hour-long, gut-wrenching bathroom visits one’s body can stand. It left me feeling weak and ill, just as if I’d had serious food poisoning. Only as long as I stick to my boring meat free, dairy free, wheat free, gluten reduced, chemical free (and consequently often flavour free) diet, mostly, can I keep attacks down to a minimum. This means around weekly is most usual. How often did I get these attacks when I lived in Tenerife? Once or twice, that I can remember, in all 16 years and it certainly didn’t ever need medication.

And, so far, I’ve suffered worse pain in the last few days than ever before.

How much of the increase in all of my symptoms is down to the climate in the UK not agreeing with me, the considerably higher levels of pollution; in the air, in a closed and carpeted house, the food, or the numerous additional stresses I live under here, I really can’t say, but it’s VERY hard to deal with, because, all put together; the fibromyalgia pain from head to foot and in every muscle and joint, the chest pains, the (medical) fatigue, the constant ups and downs in the gastro-intestinal department, the ever-present nausea, the constant fog in my brain that makes me feel like I’m getting Alzheimer's, plus dizzy spells, shaking, orthostatic intolerance that has me swaying like a drunk every time I try to stand for more than 30 seconds or so and that mean I often cannot even sit up, leaves me with a quality of life that … Well, it has no quality. It’s hardly even a life.

In the meantime, I’m trying Venlafaxine (after finding that Fluoxetine (Prozac) makes me sweat like a pig) as I’d read Venlafaxine is well-tolerated (and prescribed to treat orthostatic intolerance and postural orthostatic tachycardia syndrome that I suffer badly) and, can help reduce the severity of hot flushes in menopausal women. Apparently, Venlafaxine has a similar effect to amitriptyline, which is what is always first prescribed (off-label) for fibromyalgia (because it’s so cheap) in the UK, but which I suffered really bad side-effects with.

Tuesday, 28 Dec 2010

Part of the problem with the Gabapentin is probably because the capsules contain lactose and I’m lactose intolerant, but even solving that (the capsules don’t contain lactose), the rest of the side-effects are too severe for this to be viable. On the 2nd or 3rd day of taking it, I started getting severe chest pains and tightness [in my chest] again. Later, I read that I should have got urgent medical attention, but I was lying helpless and couldn’t move. It certainly was the cause of more nausea, which I had for years, but finally managed to control a few months ago; made my vision problems worse; gave me horrible headaches and back ache, plus increased trembling and shaking – this is all on top of the pain and usual symptoms. And it’s making me even more confused and foggy than usual.

Friday, 31 Dec 2010

The last day of 2010 and the culmination of the Christmas period is not one I’m going to forget in a hurry, because of a pretty bad attack of IBS-like symptoms. Deviation from my normally restrictive diet over the holidays had meant alternate days of either intolerable constipation or crippling sh*ts. Today was one of the latter. After beginning as seemingly normal suddenly the wind built up, there was a great rumbling from within and then a huge emission of ‘molten lava’. When it seemed to be over, it would start up again. This was repeated, over and over, for 45 minutes. This had happened on alternate days over Christmas, sometimes lasting for more than an hour. The pain was unbearable and the episodes left me weak and ill, just as if I’d had bad food poisoning. Today the stomach ache is so bad it left me no alternative but to lie down and sleep it off.