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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More pain and spasms 4 weeks post op

So here we are it’s been 4 weeks since surgery, time flies!! I am in a lot of pain, the most I’ve had since the surgery. I am however doing more………..which I pay for days later.

Good points are that the left hand side feels great, not had a twinge since surgery, obviously the left hand side of my neck is tender, but not the shoulders or upper back. I can actually turn my head and bend it towards my ear, further than before the surgery.

Bad points are that I am struggling to sleep as I cannot get my head comfy, it hurts to sleep on the left even though I had surgery on the right, but I did have my neck broken in 2 places on the left!! The muscle and nerve pain is much worse in my head, neck, shoulder, upper back, arm and hand. It hurts to type with my right hand, I cannot lift heavy things, I am also getting bad headaches at the back of my head.

I have took the decision to stop Oxycodone as I do not want to be on it long term, as it will be harder to come off. The doctors won’t give me any immediate release Oxy anymore and the slow release is only lasting about 6 out of 12 hour intervals. I’ve gone back onto morphine and Oramorph for breakthrough pain. I’m in agony, all my head, neck and jaw feels extremely tense and the muscle spasms and nerve pain is pretty bad. My fibro is flaring up a little bit it’s not unmanageable.

I am taking short walks, I am increasing my targets on my Fitbit slightly each day. I am now managing 3 walks a day and take my cute little doggy with me (apart from noon as it’s too hot for him).

I have a PEMF pad that uses pulsed electrical magnetic therapy, I have been using this at the rear of my head, neck and shoulders. They use this technology in hospitals and it can aid the fusion of the spine too.

I have looked on a few sites at community posts and there are plenty of people still struggling with pain a double cervical fusion after weeks/months so I don’t feel so bad about it now. I need to be patient, take it steady and learn to relax more. I restarted my meditation yesterday and that should help me relax and focus. I always forget to do it anthem after a few weeks I feel stressed, when I meditate I feel less anxious and more, well normal.

First week post op

Recovering well! My right arm is hurting pretty bad; it’s constantly aching, feels very weak and it’s hurting to text and use my right hand. But the right hand side of my neck has been cut open so it is to be expected.

I lost my Fitbit and broke my other one so I treat myself to a new one, the special edition new versa.

It will help me with my recovery.; as it tracks my sleep, or lack of!! Mobility too. I am just in the process of getting it set up to nudge me to stand up and move around more………..setting a minimum steps each hour.

I am taking 30mg of oral morphine twice a day, 10 mg Oramorph (liquid morphine) and paracetamol in between these doses, every 4 hours.

I’ll finish this off later as need to rest my hand, I am struggling to text………..

I’m back!! Been in quite a bit of pain all day, in fact a lot of pain. Obviously made worse when I am moving, but, also aching and throbbing really bad when I don’t move. The painkillers aren’t working as well as they were a few days ago. I am only sleeping 4 hours once every 2 days. Which is flaring up my fibro and just generally making me feel like absolute hell………. Trying to get comfy is proving very challenging.

I actually thought this recovery was going to be simple compared to the last operation. I felt much more mobile and in less pain in hospital than the last fusion. The pain is changing though. All the anaesthetic they ply you with has worn off completely and the what I only can only describe as,; internal bruising sensation (as this is how it feels) has comes into play. I’ve also had to resort to super strength laxatives after the general anaesthetic. I lost 7 lbs in weight in just over a day. πŸ˜‚πŸ˜‚

My daughter has had to do more chores as I now cannot clean downstairs either. My husband has had to run around like a headless chicken doing urgent items on my lists; he loves my lists I leave laying around πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚.

Dave and I watched motoGP today and both wore our shirts!! Dave had to help me get dressed as I could not get a t shirt over my head!!

I look rough as hell in the picture above, no make up and not much sleep!! It took my mind off things but not the pain! You know you’ve got bad pain when something your passionate about doesn’t help!!

I have spent a little bit of time reading up on other people’s experiences recovering from an ACDF (double fusion). This has made me feel more positive. We all heal differently and some of us have multiple issues. I find it useful to go into surgeries with my eyes wide open as this reduces post op stress and anxiety. This site is amazing here.

This site has some really interesting myth buster information about neck collars. My consultant won’t use them as he said that they restrict movement too much and are counter effective in recovery. Trouble is sometimes I forget like today, looked up and oh dear the pain was excruciating for over an hour πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚. Click here

If this pain continues tomorrow I will have to ring the doctor as I need sleep and have lost 3 nights sleep in a week already, this means I am probably going to get germs!! That would not be a great idea right now…….,,

First week post op

Recovering well! My right arm is hurting pretty bad; it’s constantly aching, feels very weak and it’s hurting to text and use my right hand. But the right hand side of my neck has been cut open so it is to be expected.

I lost my Fitbit and broke my other one so I treat myself to a new one, the special edition new versa.

It will help me with my recovery.; as it tracks my sleep, or lack of!! Mobility too. I am just in the process of getting it set up to nudge me to stand up and move around more………..setting a minimum steps each hour.

I am taking 30mg of oral morphine twice a day, 10 mg Oramorph (liquid morphine) and paracetamol in between these doses, every 4 hours.

I’ll finish this off later as need to rest my hand, I am struggling to text………..

I’m back!! Been in quite a bit of pain all day, in fact a lot of pain. Obviously made worse when I am moving, but, also aching and throbbing really bad when I don’t move. The painkillers aren’t working as well as they were a few days ago. I am only sleeping 4 hours once every 2 days. Which is flaring up my fibro and just generally making me feel like absolute hell………. Trying to get comfy is proving very challenging.

I actually thought this recovery was going to be simple compared to the last operation. I felt much more mobile and in less pain in hospital than the last fusion. The pain is changing though. All the anaesthetic they ply you with has worn off completely and the what I only can only describe as,; internal bruising sensation (as this is how it feels) has comes into play. I’ve also had to resort to super strength laxatives after the general anaesthetic. I lost 7 lbs in weight in just over a day. πŸ˜‚πŸ˜‚

My daughter has had to do more chores as I now cannot clean downstairs either. My husband has had to run around like a headless chicken doing urgent items on my lists; he loves my lists I leave laying around πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚.

Dave and I watched motoGP today and both wore our shirts!! Dave had to help me get dressed as I could not get a t shirt over my head!!

I look rough as hell in the picture above, no make up and not much sleep!! It took my mind off things but not the pain! You know you’ve got bad pain when something your passionate about doesn’t help!!

I have spent a little bit of time reading up on other people’s experiences recovering from an ACDF (double fusion). This has made me feel more positive. We all heal differently and some of us have multiple issues. I find it useful to go into surgeries with my eyes wide open as this reduces post op stress and anxiety. This site is amazing here.

This site has some really interesting myth buster information about neck collars. My consultant won’t use them as he said that they restrict movement too much and are counter effective in recovery. Trouble is sometimes I forget like today, looked up and oh dear the pain was excruciating for over an hour πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚. Click here

If this pain continues tomorrow I will have to ring the doctor as I need sleep and have lost 3 nights sleep in a week already, this means I am probably going to get germs!! That would not be a great idea right now…….,,

Changing pain

General anaesthetic (GA)is never good for the digestive system, if you know what I mean! I’ve doubled up on laxidos and last night had my favourite Indian takeaway, but to no avail πŸ˜‚.

I feel quite comfortable, the morphine is helping really well, I’ve doubled up on the tablets and the Oramorph liquid. I slept pretty well, feel very positive. The pain is changing, it hurts to breathe, I have bad indigestion, but this is normal after a GA.

Ha ha I wrote the above yesterday!! This is now, 3.30am on a Saturday morning. I am shattered, can’t sleep as never can on lots of meds, neck and back is uncomfortable! Might get up and chill out, motorbike racing is on tv soon πŸ‘. I could always have a mid-morning snooze! I keep forgetting that the op was only 3 days ago and not 3 weeks ago.

My body clock is all over the place, I need to relax, as this is why I am off work!! I’d love a massage but could not get comfy yet in any one position…….

Stuff it I’m going downstairs, might do some meditation, listen to some music and relax. Maybe have a posh coffee β˜•οΈ.

I am so god damn sore arghhhhhhhh, yet I am soooooo tired. My eyes are rolling whilst typing this πŸ˜‚πŸ˜‚. Speak soon all

Medication and Fibromyalgia

I promised you all a list of the medications I have tried to help with with my Fibromyalgia symptoms, bearing in mind it took 2 1/2 years to get diagnosed, what I will also give you is MY opinion of the negatives vs positives of these and side effects, remembering we all have similar symptoms but we are all different and no two people are exactly the same. So please respect my run down as this is personal to me.  

I do believe Fibro can be controlled but my degenerative disease and Spondylothesis cannot, with that said I do believe I can slow down the spinal degeneration, after all it’s my body and it reacts to my mind.

Here goes, please bear in mind in other countries some of these drug names are different so please look them up on google 😘:-

Co-Codamol – good short term medication for pain, gives feeling of well being when first started and created intense constipation and sleepiness.  Physically addictive and must be weaned off as make you feel like you have flu.  Made me grind my teeth.  

Tramadol – best painkiller I have ever used, make you feel absolutely out of your head when you first use and driving or working was impossible.  Worked very well but became immune to effects after long term use.  Weaned off too quick first time and felt like I was dying, hallucinated and felt suicidal.  2nd time I weaned off them I did so very slowly over 2 months and coped much better.  I now take 1 occasionally and hope to never use long term again as physically very very addictive.  Caused dry mouth, confusion, daydreaming, constipation and intense itching to start with.

Lyrica – not a bad medication but gave me  bad brain fog and concentration issues. Did not work as well as Tramadol.  Asked to come off them as affected my work.

Gabapentin – worst medication I have ever took in my life and I would never take again.  Pre operation they were quite effective but after developing Fibromyalgia they were awful. I felt suicidal, brain fog was so intense I could not even remember my own date of birth, struggled to hold a conversation and as doses were increased was severely depressed and was scared to be left alone.  I wouldn’t give this to a Fibro sufferer as there are much better treatments out there.  I didn’t realise how bad they affected me until I stopped.  Yes nerve pain has increased but at least my mental health and memory are very good again.

Amitryptyline – a very good tablet to help with insomnia.  But again I am physically addicted to them so having to take 2 months to come off them.

Oramorph – brilliant short term painkiller for extreme pain; PMT and migraines.  Not to be used regularly.  

Citalopram – a fantastic anti depressant, this tablet not only helped me cope with recovering from major surgery but helped with pain relief as it lifted the black cloud that hung over me.  But very physically addictive, still weaning off these and it’s been 4 weeks now and I’m down from 20mg to 7.5, down to 5mg this weekend.  Again cause dry mouth, brain zaps when you move your eyes, lucid dreams and increase anxiety for the first 2/3 weeks.

Duloxetene – cane off this as the lucid dreams got do bad I could not sleep.  Now I don’t think this is a bad medicine at all but again you have to be weaned off with your doctors supervision so quite frankly I don’t want to take this and let it affect my already fragile nervous system and brain!

Diazepam – great for muscle spasms and panic attacks, not effective for long term use.  You can be affected when stopping and weaning must be done slowly.

Zopiclone – brilliant sleeping tablet but probably the lost addictive on the list as long term use will stop you from sleeping normally when you stop worse than any other sleeping tablet I’ve tried.  I still use these and take 1 a week, for example if I sleep for 1, 3, 3, and say 2 hours on 4 nights I become exhausted and risk an accident on the road or sick leave at work. Bi take a zopi and can get 5-6 1/2 hours sleep in one night.

Laxido – to combat Tramadol and co codamol constipation.  One sachet a day works very gentle and is a life saver, but any laxative no matter how mild is not good for long term use.

If I think of any more I will share.  All these tablets mask symptoms we suffer withFibromyalgia and  what I want to do is treat the symptoms and reduce their affects on my quality of life not just mask them with more pills.  ALL these pills have side effects and have created other issues. All these pills affect our nervous systems and that is why I am completely coming off them.  I will keep you posted as to how I get on πŸ‘Œ

Please read this link for more information on any of these pills and for my USA followers you will see the other brand names.