What went wrong?

I was having a great recovery; pain was under control I was walking 3 times a day, managing a little bit of housework. Now here I am struggling to sleep, struggling with pain, unable to cook a decent meal, not been for a walk in days. Had 2 migraines over last 3 days…….

So what went wrong; entertaining a guest at the weekend, I don’t have the energy. Changed pain relief due to pressure from my doctors from Oxy to morphine, but I cannot sleep on morphine, so I switched to tramadol in the day and Oramorph at night, but it’s not strong enough. Once the morphine had worn off and it was just tramadol in the day, I went downhill fast. This is the worst I’ve felt since the surgery.

My hot tub pump has broke so I’m waiting for that to be fixed, this has made a big difference to my pain, so my daughter is running me a hot bath, where there is a will there is a way.

Doctors are so obsessed about reducing opioids/opiates, that for those of us that need them we have to fight tooth and nail to get them. I took the time to explain to the doctor step by step what they did on my neck and lower back and that my spine is aged 25 years older than my actual age, sometimes you just have to take the time to explain your personal situation to them, my 2nd double fusion was not a standard operation, my neck had to be broken in 2 places, my facet joint had to be removed as it was full of bone spurs, that’s before inserting the cage and implants. With having fibro; the pain is real, yes it is more intense and will probably last twice as long as someone without it. But I cannot change that, what I need right now are the right painkillers to ensure I get a decent quality of life and get back to my job. I cannot imagine trying to work right now………..

So I am waiting for them to ring back and I am telling them that I am going back on Oxy (I have about 2 weeks worth left) and they had better support me, or I’ll be leaving work and living off the state.

Rant over!!

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Cannot take any more pills

So far I’ve had 100mg IV Tramadol, 10mg IV Morphine, probably about a full bottle of Oramorph, or so it feels like it lol, but I was having 10mg doses (double the normal rate). Multiple Tramadol, Diahydrocodeine, paracetamol and nefopam. That’s quite a list. I only felt pain relief with the IV and actually woke myself up snoring a few times 😂😂😂😂.

My throat is very dry and I struggled with the large paracetamol and the last diahydrocodeine, getting them stuck in my throat and they melted in my mouth 😣. Now my tongue is white and very dry and I’m struggling to swallow anything.

I tried to sleep but just couldn’t, the pain in my neck is bloody awful

I tried chamomile tea, crap tv, rocking in bed!! Deep breathing; but that just hurt my throat.

I begged them for some more IV tramadol but I couldn’t as I’d took 2 earlier, orally. They aren’t allowed to give IV morphine on his ward grrrrrrrr. They should have just given me with my own morphine pump like the consultant promised, (I had one last time I was fused), but the new anaesthesiologist said I wouldn’t need it. Really? They broke my neck in 2 places (as collapsed facet joints had fused), a double fusion and fibromyalgia. Well it’s my body, I’ve had it before and did bloody need it!! Great, well I’ve had 2 hours sleep in 24 hours, 4 day before that and no way I’ll sleep like this!! I explained to the lady how fibromyalgia worked, in particular the increased pain! Plus making non painful things hurt!! She absolutely understood and I reckon knew someone close who had it……,,

I have now been given an intramuscular injection of morphine in the thigh. Hurt like hell and they take a while to work as I’ve had them before, last a long time too. Whoops I seemed to have bled on the bed from the injection 😂😂

They look like bites! It’s been 20 minutes and I cannot feel it at all!! Great lol 😂 I think I’m a machine!!

Ouch

Tried to shut the window and hurt my neck whoops. Chef closed the window as he heard me crying!! Don’t think I particularly hurt it, it’s just that the iv meds have worn off. I’m hurting like hell. It’s pulling, throbbing, can’t turn head to right, it’s aching……….

I can’t brush my teeth with my right arm, can’t push the bed trolley off my bed 😢. You get complacent with these things. ‘Oooooh it’s not that bad!! Then the meds wear off and me sitting in the chair, strolling around, brushing teeth etc. I’m now in a lot of pain’. Not much I can do as only so many meds you can take. I wish they had put on the morphine pump like they promised!!

Oh well 😔 might have to get the music on my headphones and start meditating!! Can’t wait to get home and maybe ask the doctor for a pain patch!! Better than popping 12-16 pills a day; deffo don’t want to get up to 25 plus a day again……….. at least it’s constant relief 👍

I don’t want to take morphine

I injured my knee by stupidly taking out my armour due to it being very hot 27 degrees on my bike training day.  I had a fantastic lesson and was feeling very confident for my test which I had booked in about 10 days time.  I was on my last practise run and came off the big motorbike bashing the inside of my left knee on the bike.  My leg swelled and I rested it, my leg went black but I thought it would heal.

I went to work in London and walked a short distance to my hotel as the weather was beautiful.  Half way back my leg was very painful and I could barely walk.  I checked into the hotel and struggled up to my room.  I sat on the bed and my leg swelled, the knee looked like it had a bone sticking out on the inside.  6 hours in A&E in London is hell,iv Morphine and gas to get an X-ray, no break but a ligament injury.  I was released at 2.30am on crutches wearing a leg brace for the next month.

Anyway the point of this story is that I’ve had to stop exercising and the use of the crutches has resulted in my fibro returning back to the levels it was at about 15 months ago!

Tramadol and Oramorph are not touching the knee pain so the doctor has put me onto Morphine tablets, they have helped but I’m still in tramadol withdrawal which is horrendous.

I am not staying on Morphine and the last few months of my increasing painkiller consumption has made me realise they are no good long term.  I don’t just have fibromyalgia and the my meds are to reduce the pain I have from a number of conditions, I only developed fibro due to the back surgery I had.  I have degenerative disc disease, spondylolisthesis, endometriosis and pelvic congestion.  The pain I get from these conditions are made worse through having fibro.  Where do I go from here back onto Fentanyl patches?  No bloody way!!

First thing I’m going to do is speak to the doctor and ask them for medical help to get off these meds.  I’m going to revert back to the strategy I started last year; mindfulness yoga, meditation and very very slowly build lung up my exercise to interval training again plus I need to overhaul my diet.  Anyone with fibro knows how painful it is restarting exercising as the muscle aches are intense, nothing like anyone can imagine, it’s like having the flu but ten times worse!

Food is a very underestimated medicine.  Eat shit and feel shit!!  Fibro makes us very sensitive to food ingredients and if you read what you eat, some of the contents and unrecognisable.

Once I feel well enough to start exercising again I’ll post up what I’m doing and let you know how I get on with coming off meds again!!

The silly season and Fibromyalgia 

I wanted to share some of my tips for surviving Christmas with this condition.  In the sat I’ll be honest I’ve been a right miserable sod as I focused on what I couldn’t do not on what I could do or asked for help!!

If you choose to drink alcohol then don’t expect to have a healthy Christmas, I am going to be brutally honest, alcohol and fibro go together like chalk and cheese.  It’s seriously bad for you, your mind and your body, your already oversensitive nervous  system will make you pay, here’s what happens to me:-

  • Palpitations
  • Overheat or am freezing
  • Numbness in parts of my body
  • Pins and needles
  • Panic attacks
  • Confusion
  • Insomnia
  • Diarrhoea 
  • Indigestion
  • Pain under arms and on my upper stomach when touched 
  • Depression
  • Anxiety

I am sure they are more!!  I used to be able to drink shandy but in the past month I cannot.  It’s your choice but ask yourself why you do it if it makes you feel ill?  Peer pressure, don’t want to look a party pooper?  Personally I’d rather feel healthy.  Do your research on google 

Okay let’s go onto the second thing that affects fibromyalgia; food.  Many of you might not have made that connection but I have my keeping detailed food diarys, food affects our nervous systems in more extreme ways than a person without this condition as we have sensitive nervous systems.  Not only does it affect my nervous system but I now have an inflamed bowel that I am having an exploratory operation for next week, it really is not worth eating shit food or drinks!  Okay here’s some of the food that affects me in a negative way and I’ll give you a few symptoms of what it does to me:-

  • Red meat
  • Cows milk
  • Alcohol
  • Coffee
  • Sugar
  • Anything containing sugar; cereals, dessert, chocolate etc
  • Cheap takeaways, fast food such as McDonalds, KFC and Chinese takeaways
  • Too much chilli 🌶 
  • Fizzy drinks
  • White rice 
  • Pasta
  • White processed bread
  • Processed, packaged cheap food that contains chemicals
  • MSG (found in many foods; Chinese chemical that enhances the taste buds in humans)
  • Too much cheese

I am sure there is more!!

I am not a saint, I’ve slipped up this Christmas, wanting to join in with my colleagues and friends at work, who have been absolute stars ⭐️ I’ve eaten canteen Xmas dinner, been out for s meal and ate red meat and had 2 shandys on two occasions and boy have I been ill, not just with fibromyalgia but also my inflamed bowel has not reacted well to the ‘crap’ food.

I’ve had to take 2 tramadol each morning and I have gone hit more than 3 days and I’m afraid that my body is now needing it to feel normal.  It just goes to show how dependant our bodies get with these pills, the pain from fibromyalgia is extreme, I know that.  But I need to get my nutrition back on track and wean back off these stupid tablets.  One thing I won’t do no matter how ill I feel I will not take more than 2 a day!!

Do not let your condition get you down, it can be controlled, you have to stick with the plan!

Struggling with Fibro symptoms each month!

Wow today has been rough.  I usually have to deal with the pain with Oramorph but I’m resisting this month.  I’ve stuck to co codamol and Tramadol, the first 2 co codamol has done nothing this afternoon, I’m  hoping the Tramadol works.

I’m on my 4th hot water bottle today and the pain is bleeding through.  I know this won’t last, the first 48 hours are always rough, then the remaining 3 days I can deal with.

I did not get anything much done at work this afternoon as I could not think straight, so I came home.  I’m hoping an early start tomorrow will be just the ticket.

I was reading on the Internet about options for this as it’s not something women with fibromyalgia talk about much, but we should.   In particular ones that are coming up to menopause age, I’m 41, my mum was 38! Anyway there isn’t much advice apart from going back on the pill! Ah no thank you.  I am not putting more crap in my system.  No I’ll stick with my yoga (I did it last night), my hot water bottle and the odd painkiller.  Read here for more details.

When I feel this much pain I hate this condition, it’s as painful as the start of contractions in childbirth.  But from under taking mindfulness meditation I know it will pass, it’s not a permanent state.  Things will get better.

Negativity hit me like a cricket bat in the face

I did not sleep well last night.  I got less than 3 hours due to having a sore throat all night.  I went to bed, got up then went back to bed late!


I stocked up on throat supplies and took them to work 😂

I went to work and it was very busy, I hardly had a minutes peace to myself, but I enjoyed it and it kept my mind off the pain.  

I completed a 30 minute mindfulness yoga meditation on Monday and my back, each side of my body were sore after this and in Wednesday my daughter rubbed magnesium spray into these areas and they were swollen?!?  But it felt much better.
After spending 24 hours in London with my backpack my back pain has reached epic levels.  I cried on the train on the way home yesterday so had to pop sunglasses on and take 2 Tramadol, I resisted for an hour but I literally could not keep my legs still and I was sat at a table with 3 other people, I hated that I relented and had 2.  The pain relief took about 20 minutes and 3 mindfulness meditation sessions on my phone using earphones to get me to a point of delirium.  I went from crying to giggling, yes I think my new train mates thought I was mental.

The pain moved into my entire body today and as I was at work I ended up taking a Tramadol this morning and 2 cocodamol in the afternoon and grrrrrrrrrr tonight I took another 2 Tramadol.  I was laid on the sofa crying as my back pain pulsed and my skin hurt to touch, my throat feels like I have 3rd degree burns in the right hand side and hurts all the way into my ear 😓.  I was literally crying and eating food at the same time, I could not even make it to the kitchen table.   My husband came over to give me a cuddle and told me to go to bed for a while if I felt that bad.  

I will not go back on regular meds and I know I will feel rubbish tomorrow after all the pain pills today!! But shit happens and I’ll get over it.


He knows what I was thinking and yes I threw an almighty pity party.  “Why me, I hate this, I can’t stand the pain, I’ve got a busy weekend I can’t afford to have this again right now”.  He always remains positive, “Maz” he says “you’ll be fine in a day or two”and that was all it took as I answered “yeah I know”.  Normally I would be griping, no I won’t, my life is ruined and a load of other negative stuff. But he’s right, I will be okay, it’s just my body’s way of saying hey you are a little sore from travelling and yoga, let’s take it steady tonight, this will not last as pain changes by the minute, it isn’t static.

I know the retraining of my brain is helping, the mindfulness is helping me focus on the now and not the past or trying to sabotage the future with pain I may not feel.  Let’s take it one moment at a time!!

So now I’m in bed, sat upright and cross legged, having had some magnesium spray on my back from my husband, this stuff is awesome, I make it myself.  The aches subside and I’m ready to do some meditation with a smile on my face.