Todays update

Just a quick update today. I’ve been trying to get my meds right and last night reduced my ami’s from 75 mg to 60mg. Still slept ok with about the same amount of wake up times but think the dreams/nightmares were less. Well, put it this way, I don’t remember any today. Could be coincidence but ever hopeful so looking forward to tonight. I slept in this morning but have felt more fresh in the time I’ve been up than I have been doing recently. Also the pain didn’t increase. Early days but will keep at it and see what happens.

On the pain chart today I’d say I’m a 4 again. The temperature control issues are adding to the struggle to do things. They’re causing me grief and end up dripping very quickly. Its raining yet it still happens. Feel like the accupuncture has made a difference so looking forward to the next lot starting next week.

DLA appeal won!

Had fantastic news in the post on friday. A letter from dwp saying they had reconsidered my application for disability living allowance and had changed their decision. I’ve been awarded higher rate mobility and lower rate care.  Over the moon, it will make such a difference to me, being able to have a blue badge, the extra income. The things it will help me get access to. Massive stress lifted off me by not having to take it to tribunal. Just the esa appeal to take to tribunal now.

My pain levels over the last 3 days

Using the lego pain assessment chart posted below my pain levels over the last few days have been:

Saturday 2nd July – Started at a 6. Through the day it went to a 7 and then an 8.

Sunday 3rd July – Started at a 8, stayed at an 8 till mid afternoon then dropped to a 7 and then back to a 6.

Monday 4th July – Started at a 6 and dropped to a 5 by lunch time. Has stayed at that since then.

Have had a quiet day today to allow things to settle down after the weekend, haven’t pushed things or tried to do too much to try to bring the pain levels down enough to get back on an even keel.

Bad Times!

It’s all been a bit rubbish since I last managed to post. Been suffering really bad with the fatigue, needing to sleep loads. Muscle jerks have gone from bad to worse, really shaking and all at once too. Been happening at night too while I’m asleep, they’ve been waking Paul up.  Neck and head ones have gone worse too, can’t control them. seeing the dr on Wednesday to see about increasing baclofen.

Saturday I had a really bad migraine after a week of constant niggly headaches and feeling generally drained. I woke up with it hurting but nothing more than it had been all week but this time the tablets didn’t help or the head stick. Carried on as best I could, took Bailey to watch his Daddy playing in the town with his band for an hour and then we went to the park so Bailey could show me how his bike riding that he’s been doing at school had come on. Took more paracetamol while we were watching the band but they did nothing then half an hour after we’d been at the park I knew I need to get home quick. We came home, I rang Paul asking him to come for Bay as soon as he could to go to the bbq and I shut the curtains and cuddled up on the sofa and shut my eyes, hoping it would go away.

Then just as Paul came home the inevitable happened and I was sick. Felt really bad,  hate Bailey having to see me that poorly. Paul got Bay ready to go and told me to go to bed but was sick again before I could get there. Then began 12 hours of agonising pain and me being sick. My head wouldn’t stop thumping and I kept going from hot and dripping wet to shivering within minutes of each other, not able to get comfortable, every movement forcing another run to the bathroom. I tried to take my evening tablets but was sick within minutes so they did no good. 

Hardly slept cos of the pain in my head and everything else hurting too but when I did drop off I kept having really weird nightmares – was like all the tv shows I watch all rolled together with me and everyone I know there too. Then there was all different pod world things that people kept being sent too and getting separated. But then they became where you had to stay and you couldn’t get home. Was really horrible and didn’t help with the sickness.

Sunday morning came and migraine pretty much gone but legs were agony, arms were agony, energy levels were rock bottom, non existent might be more accurate. Dragged myself out of bed about 10am cos it was Paul’s big day with his first proper public performance and we’d been looking forward to it for days. Nothing was going to stop me going. Knew my lift was coming just after one so my goal was to be ready, and able to move by then. Well, that was easier said than done. The sweat was pouring off me, and energy wasn’t improving. It ended up taking me 2 hrs to get showered and dressed cos I just needed to lie down. Could’ve slept for england! Finally we got to the carnival almost on time and it took all I had to drag my legs the short distance from the gate to the marquee where the band were. Never been so pleased to see a chair. As the afternoon went on I started to feel more normal for me, my legs became easier, less pain and lighter to move. Had a really good time. Then it was just the fatigue afterwards, complete exhaustion.

Then the cause of all the excess pain and probs over the last week or more finally arrived and the stomach cramps kicked in good and proper. Spent the rest of last night sat boiling hot but with a hot water bottle on my stomach trying to stop it hurting.

Today things seem easier except for the fatigue – had to spend the morning sleeping yet again. Not sure if  it’s the tablets causing it to be so bad so going to try to slightly lower the dose tonight and see if it makes a difference. Gonna be a balancing act between less fatigue and tiredness and increasing pain levels. Just need to find the right balance.

Here’s hoping things start to improve a bit now the dreaded P has finally arrived properly and moved on from the torment stage it seems to like to do.

Really love this chart, gonna use it to measure my pain levels.

last 2 days with fibro, symptom update

There’s not been a whole lot of change since thursday really. Yesterday my legs seemed to be easing off a little bit in the morning but by the afternoon they were hurting a lot again. Had  acupuncture yesterday morning on my legs. Also have had a sore throat since yesterday lunch time which isn’t helping.

Fatigue has been bad too. Yesterday I went back to bed late afternoon then got up for tea and was up till half 8 then went back to bed and stayed there till this morning. Kept waking up through the night in pain, mainly my shoulders and back, so had to keep changing position. Then today, went back to bed almost straight away. Got up at 9.15, had breakfast, sorted lil man out then went back to bed at about 10.15am and stayed there till half twelve and then got up ready for Bay coming back from swimming.

Had headache from when I woke back up, controlled it with paracetamol and 4head stick. Legs been really painful, pulling and heavy today. Dog ran past me when I was going out the door and pelted it down the road. Had to go after her, on my own with Bay so had no choice. She wouldn’t stop for me so hobbled along on my crutch till she finally stopped long enough for me to catch her. Wasn’t far really, 2 houses, a double driveway and 3 more houses but my leg was agony. Couldn’t hold her in my other arm to carry her back cos she was making it hurt too much, couldn’t drag her  couldn’t bend over enough plus needed crutch. Was about to shout Bay to come pull her and someone come out their house and very kindly carried her back for me. My legs have been killing me since. Been needing to limp cos of left one being worse.

Went to fetch a chinese for my tea. Got parked opposite it so all good, got in ok. But had to go chippy next door to it for bay and found I couldn’t get in cos it was a double step, nothing to hold onto to pull me up and the main step was too steep. Had to shout from the door what I wanted and send Bay in with the money and to fetch his tea. He thought it was great, I was just embarrassed that I couldn’t get  in!

muscle jerks strike again!

Well, after the eventful egg episode I’d hoped that today the jerks would be better. but they’re not. It’s only 9.15am and I already managed to send my tea bag pot flying and made it spin round the  work surface on its side!

Last night while I was sat chilling, my leg started jerking and wouldn’t stop. it felt like it was gonna take off it was moving so much.

I’d like to think that’s it for today and my baclofen will kick in but not feeling hopeful really. I seem to have got used to the dose and they’re getting worse again but don’t wanna increase it if I can help it cos it makes me drowsy. At least combined with all the other pills it does.

 

My Day, 23/06/11

Today hasn’t been one of my better days. Have managed to stay up pretty much apart from going up to bed for an hour before tea to rest because of the pain. Really could have gone to sleep though.  The sharp pains in my legs are still there, especially the right leg.  This is on top of what I think of as my ‘norm’. I’ve got a really sharp pain in the top of my thigh, just under my hip and going down my leg (on the outside). Then there’s another one on the inside of my thigh, exactly the same. My calf is pretty much totally covered with sharp pains. The left leg is similar but not so severe  and then both knees are painful. When I touch my legs, just running my fingers down them is really painful. It’s hard to describe, but the best comparison I can think of is it feels bruised, like a bruise would feel if you touch it except more so.

Then my lower back is aching aswell as my neck and shoulders. My neck feels stiff as do my shoulders. My arms ache but feel heavy when I lift them. My hands just hurt and feel stiff. The pain gets worse as I open my hands and it feels like I’m forcing my fingers to straighten further than they’re meant to

Every single part of me hurts to touch and leaves a lasting ache and soreness for several minutes afterwards. I’m not pressing my skin, just gently touching it. Sitting here now I feel like someones stabbing me in all different places. I’ve got constant sharp stabbing pain all over, it just keeps moving round to all different places. It’s totally random!

I feel like I have the flu but without the cold and high temperature. The sweats have been a nightmare today too. When I got home from dropping Lil man at school and by the time I’d gone upstairs I was dripping, it was literally pouring off me. I was lying on the bed, trying to make it stop. When it eventually did I had to dry my hair with my hairdryer it was that wet, and it was tied back aswell in an effort to prevent it, guess that didn’t work! LOL

23/06/11 splattered eggs!!!!!!

Well, had an eventful teatime. Paul cooked us chips, beans, gammon and sausage for him and Bay and pineapple rings. All I had to do was the eggs. He does everything else but prefers to leave the eggs for me. 

So he heats the oil for me, I pick up the first egg, cracked it on the frying pan and at that very moment I get a massive muscle jerk in my arm and hand and the egg gets crushed! It literally went everywhere. The runny part was all over  my hand and all over the work top, the yolk, still half in the shell, was teatering on going the same way. So tipped that into the frying pan and it went instantly solid and left the pan needing cleaning before I could try again.

Finally got the pan back, picked up egg number 2, carefully tapped it on the pan, got it open and into the fat in one piece then muscle jerked again and I chucked the egg shell right on top of it. Fished that out and the other 3 eggs managed not to cause me trouble.

So, eggs nicely cooking and I get round to thinking about cleaning up the mess I made on the work top. I go fetch the kitchen roll and start to mop up the egg, when, you’ve guessed it, I get another muscle jerk. This time sideways, with kitchen roll still in hand, I jerk it under the frying pan into the flame of my gas hob. Next thing, as my hand relaxes and I pull it away from the hob, I notice with horror that the kitchen roll I’m holding has caught fire. I look at it for a few seconds thinking ‘now what?’ before folding the soggy bit over the fire bit and pushing it into the pile of egg white still sat on the surface and snuffed out the flame! 

There’s a reason why I can’t cook a meal and I think this says it all!

Welcome to my blog!

I have fibromyalgia and chronic fatigue syndrome. This blog is my way of keeping a track of my symptoms, how I feel and generally what’s happening with me on a day to day basis so I can better understand my conditions, spot any triggers that I may be missing and see what helps and what doesn’t. I really want to get better, to get my life back, and while I know this is unlikely to disappear completely I believe it can be controlled. So this is what I want to learn to do and I think by tracking how I am each day I’ll be able to take control of it and manage my life in the best way to achieve this goal.

Up to now it seems to have got steadily worse and flares up constantly but with the help of my meds, treatments, and pain management I intend to make it turn round and get on a more even keel.  I believe that staying positive is going to be key to me managing this but fibro is NOT going to be winning this battle. I’m ready to fight and it starts right now!