Mostly the face I show the world is my happy face, my ‘everything is fine’ face. If you met me I wouldn’t tell the truth if you said “how are you?”. But today I’m not in the world. I have a day off work. I’ve dropped off my daughter for a day ride, my son is busy, my partner is content. And I’m here, sat at the computer, wishing for some relief from my pain.

The truth is that I’m rarely ‘fine’. I’m mostly in pain to some degree or another. Today is a bad one. Today I’ve taken all of the pills I can and it still hurts. I have Fibromyalgia and I am not fine.

some days
pain crushes my joy
pain squeezes every drop of happiness from me
pain is all there is
some days I am merely a husk
an empty shell
good days forgotten
happier times faded
all I am in this moment
is pain
unending
unforgiving
pain

Last time I wrote I was in the middle of an IBS episode. It carried on for some time and I ended up getting an urgent appointment at the Doctor after Christmas. They did some tests but nothing came of it. So that confirms it was IBS really as I thought. I basically had diarrhoea for 3 weeks. Not fun. Anyway that’s over now thankfully.

Good news is that I went to the Doctor again yesterday for the appointment I booked before Christmas. I asked her if she thought my symptoms sounded like Fibromyalgia and she agrees they do. She said there is no test to say yes or no, and you have to rule things out, but my ‘constellation’ of symptoms does indicate this problem. So now I have a diagnosis (ish) of Fibromyalgia. At first I was very happy thinking at last I have a label. Today I’m just in pain and remembering that this label doesn’t make much difference as there is no cure.

I am trying some new medication though so you never know, it might help. I’ve started on Amitriptyline. I’m taking 10mg per day at bedtime to start with and then going up to 20mg after 3-4 days. She says it should help with pain, sleep and anxiety. I also have some more Propranolol to take when the palpitations are bad.

I’m off Ibuprofen at the moment which is hard going. When I had the diarrhoea I was getting bleeding too. Most likely haemorrhoids, and the tests didn’t show anything, but the doctor said to avoid Ibuprofen as it could be irritating my stomach/intestine and making it worse. I’m not sure if I’m meant to be allowed to take it again since the tests showed nothing bad.

So having a label is good, but doesn’t make a huge amount of difference in daily life.

Today’s symptoms:

Headache, neckache, leg pain, extremely tired, lack of concentration

Sigh. Not great.

Diarrhoea strikes again. I had it last week too Monday-Thursday. Managed to work from Wednesday but was off sick Monday and Tuesday. I thought all was over as things went back to normal. But this morning it’s back. Luckily I’m off work anyway this week, but it’s still a bit shit (haha).

I don’t know what triggered it. I’m assuming it’s IBS. You’d think if it was a bug it would have gone and not suddenly reappeared. I’ve been trying to figure out if I ate something I shouldn’t have. There are some things I know are out of the question like onions but it seems that maybe fatty foods, chocolate and cheese might also be triggers. It’s hard to figure out what caused it when I don’t think I’ve eaten anything unusual recently – just the usual things I usually eat.

Urgh. Not nice and I hope it goes away again soon.

Anyway. Pain is about the usual levels. Currently foot, thigh and head.

I made a non-urgent appointment with the doctor in January. First I could get was 19th. I’ll take in some info on Fibromyalgia and see what they say.

Not having a good few days. I was happy and excited about Christmas but going back to work on Monday seemed so hard after the weekend. I’m in so much pain right now. Left foot, left thigh, right thigh, head, left shoulder. I had a rubbish night’s sleep on Saturday as my son was sick. He’s nearly 18 and doesn’t really need me that much but I went into full-on Mum mode and was on alert all night in case he was sick again and needed me. He was fine. He slept fine, and we put the one episode of sickness down to a migraine, as it was soon after he said he had a really bad head. So he was ok, but I barely slept a wink. I don’t seem to have really caught up. I sleep badly normally but that was really bad. Last night I was up twice and trying to get back to sleep the last time was hard and I pretty much dozed for a couple of hours. Not sure why my right leg hurts so much now. It’s hard to walk with 2 bad legs 😦

I am wondering if I have fibromyalgia. My partner just sighed when I said that to him. He thinks I diagnose myself with stuff cos I read it on the internet and obsess about it. It’s true that I do get a bit obsessive, but in this case I think I am being rational.

Symptoms of fibromyalgia (from NHS):

  • Widespread pain – yes
  • Extreme sensitivity – I think so – stuff like my partner playfully poking me and I’m like ‘that really hurt’ and it kind of shouldn’t have
  • Stiffness – yes getting up from sitting is hard
  • Fatigue – yes yes yes!
  • Poor sleep quality – YES
  • Cognitive problems – sometimes I think so
  • Headaches – yes nearly every morning
  • IBS – yes
  • Dizziness and clumsiness – not really
  • Feeling too hot or too cold – yes I’m often boiling in the middle of the night for no reason
  • Restless Legs – yes, from time to time
  • Tingling – yes in my hand and sometimes foot
  • Painful periods – well I don’t have many of them these days but they were bad before I went back on the mini pill
  • Anxiety – yes
  • Depression – well I get down a lot but whether it’s depression or just normal reaction to crap I don’t know.

So that does sound a bit like it might be possible doesn’t it?

Not sure why I want a label but somehow it would help. I could say yes I have some medical issues caused by Fibromyalgia – that’s why I can’t do x or y, or why I have taken x days off on sick leave more than you think normal people should.

Gah I don’t know. I might go to the GP and ask. But I don’t want to go back there. There’s no cure for fibro, so it doesn’t really make any difference to how I feel or how I cope. It just seems like I would find support if I had a proper diagnosis, rather than ‘might be your disk’.

 

Urgh the whole of the left side of my body is a mess. It’s nuts. The right side is pretty much fine. Currently I have pain and/or weirdness in: foot, ankle, knee, thigh, hip, lower back, mid back, shoulder blade area, shoulder, lower arm, little finger, neck and head … all on the left side. I feel like if I could ditch that side of my body I would. Why is it all over there? Am I wonky or something. Maybe I should go back to the Osteopath. He’s the only one who actually tried to fix me. Everyone else just gives you painkillers and expects you to fix yourself somehow. So much pain. Might have to give up and take codeine today.

Up at 5am this morning having to take painkillers for neck and head pain. Have survived the day on repeated doses of ibuprofen and paracetamol. Trying to avoid codeine as I took some yesterday and don’t want more of the issues that brings with it.

Leg pain is pretty bad at the moment. All day every day, every hour every minute. Knee, hip, foot, calf, the whole shebang. Last night I had an episode of pain that felt like my thigh was ripping. Well probably not as painful as that would actually be, but it was a tearing ripping feeling.

Not sleeping much lately and with all the pain it’s getting me down again. I can’t wait until the Christmas break. Life is so much better when you can stay in your pyjamas all morning and do what you want – a bit of crochet, a bit of blogging, computer games, reading, sleeping, whatever. Work is not fun when you’re tired and in pain.

I should go to bed now. Just waiting for daughter to finish her shower so I can use the bathroom. I’m kind of beyond tired, where you know you need to sleep but you’ve gone into zombie staring at nothing mode and can’t switch off. Fingers crossed for a little sleep at least.

How long can a person survive on 4-5 solid hours of sleep at most every night? I wake up at least once every night and sometimes struggle to get back to sleep for a little longer. Many mornings I wake up needing painkillers. Many nights I struggle to get comfy as everything hurts.

However, tomorrow is Thanksgiving. Not that we do that here, but let me have a go. I am thankful that I have a job and money coming in. I’m thankful that I could afford to buy my kids Christmas presents, and that I’ve got all the shopping done already. I’m thankful that my leg functions and I can walk despite the pain. I’m thankful for my lovely partner who cooks me dinner every day and does so much more than many men, like all the cooking, washing up, bins etc. I’m thankful for central heating. I’m thankful for painkillers. I am thankful that I have my kids who give me purpose and reason to keep going. I am thankful that I only have 17 working days before the Christmas break.

That will do. Must go to bed now.

Today I vainly attempted to join in conversation in the lunch room. Should have known better. I caught the end of a conversation and go the wrong end of the stick so my comment was just embarrassing. I sat there blushing and went back to reading my book. I felt like shouting out ‘This is why I don’t talk!!’. I feel like they all talk about me when I leave the room because I go in, sit, eat, read, and leave again, often without saying a word. They probably think I’m rude, stand-offish, unpleasant. I just can’t do the conversation. I can’t walk into a busy room and say ‘hello’. I can’t walk out of a busy room and say ‘bye’. They all think that’s ridiculous I’m sure. They all chat away. I just can’t do those things. It all rushes through my head – if I say hi and no one acknowledges me I’ll feel bad, if I say hi and everyone looks at me I’ll feel bad, there is pressure and I don’t say anything. All I want is to sit quietly and read my book while eating my lunch. There is no where to do that unless I stay at my desk in the delightful open plan office. There is no space anywhere to be alone and quiet. I hate it. And nobody understands. I’m not a horrible person. I don’t mean to be rude. I’m just different.

I don’t fit here, I don’t fit anywhere. Always the outsider.Feeling stupid. Never sure whether I even want to fit. I just want to be alone or with my family. Everyone else is too much.

Plus I’m in a fair bit of pain at the moment, and not sleeping well as usual. 😦

Just had my appointment with Orthapaedics following the MRI.

I came out feeling depressed.

I really don’t know why I bothered with all the effort to persuade the GPs to refer me. So I got a 2nd MRI, but really it didn’t achieve anything. He just said yes your disk is thin and protruding a bit and it’s probably the cause of the pain. But that was it. Nothing more offered or suggested. I’m not bad enough to require treatment. But I’m not good enough to feel fine.

Just seems like that’s it, tough, you’re in pain, deal with it.

Logically I realise that there isn’t really anything they can do but it wouldn’t take much to at least try to seem sympathetic. I’ve been in pain pretty much constantly for over 3 years now. No one seems to be that bothered. As long as I’m not numb or tingly any more, can poop and pee, and my reflexes all behave normally, then they’re not interested.

I feel stupid for even hoping they’d help. And I feel stupid for not asking stuff like – what about pain management? Not that they’d probably have anything to offer anyway.

I’m not sick enough to need help. So I’d better just suck it up and get used to living like this for the rest of my life.

I was doing OK today until I got back from lunch. Suddenly my head is banging and I feel a bit queasy. The lights are too bright and I want to lie down. Sadly I’m at work so this is not really feasible. I’ve taken ibuprofen and paracetamol and I’m drinking chamomile tea slowly. Trying to relax my muscles in my face and behind my eyes and just breathe. Hopefully it will ease in a minute.

Feeling really tired today. Had to get up in the middle of the night to take painkillers as my head was really painful. I remember the pharmacist once telling me you’re not meant to take ibuprofen at night, but I had no choice. Managed to get back to sleep and dull the headache down. Still there, but bearable. My eyes are hot and achey.

Yesterday and today I’ve been getting pain in my right hip when I walk. That’s a bit new. Normally all left side. My muscles feel all tight in my left leg too. That’s fairly normal.

The palpitations have come back this week. Not too bad today. They were worse on Monday. Seems to be related to feeling down/grumpy/anxious. Weird that when I was stressed with work stuff they weren’t bothering me.

Mindfulness tonight. Funny but on Monday when I was so down, I was all ‘what’s the point of going to mindfulness, I won’t bother paying for the next batch of sessions’ but when I felt better I’m all ‘let’s get the cash out so I can pay for the next batch asap’. It’s like I’m 2 different people.