Routine and sticking to them

It’s so important to find a routine that works and stick with it. We are creatures of habit………….

How many times though can you remember starting something with good intentions, only to let it go, then wonder why am in so much pain, why can I not sleep, why has my fatigue worsened, why am I having to take more painkillers??? Then you remember, whoops!! I stopped doing ‘X’!!

I struggle to get up at the same time every day, I’ve been awake since 4am for the past few nights due to restless legs; pain from my neck that travels down into my hip, develops into nerve pain which then goes into my arms and down my groin into my right leg. It’s one of the most annoying sensations, especially when it also travels into the arms. Now, if I get rid of it and go back to sleep I ruin my entire routine and feel dreadful and can’t get to sleep the next night. But, if I force myself to get up, Go for a walk, use a heat blanket on the source of the pain or massage the area, then just maybe things will be okay? Apart from the fact I’ve only slept 4 hours and feel like dog shit on a shoe 😂.

Constant pain causes depression, anxiety and fuels negative thinking; what if this never goes away? What if it gets worse? Blah blah blah!! But really, where does all this negative thinking get you? Absolutely nowhere that’s where!!

You have to learn to allow the thoughts to come and go, every single person has doubts, worries and concerns, everybody……. meditation allows us to not let these thoughts take over, you just learn to let them come and go, acknowledge them and let them go………..

Now last week I was so depressed, so down, that I had already planned on taking medical retirement from work, being bedridden and possibly hooked on oxycodone for life!! I mean no one can see the future, I could actually make all this happen if I wanted to but I won’t, I’m not a quitter!

Now this week I feel more optimistic, I am learning to take things one day at a time. I had got a plan in my head to get back to work in August, I know now that that’s impossible, so I’ve got another sick note, I have set myself a daily routine of exercise (which consists of 2 x 5 minutes walks and 2 types of neck exercises) and lots of rest. I have raised a few ideas with work that may get me back to work earlier, if the answers are no, then I’ll remain off for as long as possible and that’s what I told them!!

Everyone has good and bad days, but who decides which they are? We do. Every day should be a good day, I don’t have cancer, none of my disabilities are going to kill me, the surgeries could have, but they didn’t. So every day is a good day isn’t it?

So here I am 7 weeks post surgery, the pain is constant, it ramps up to levels that make me cry out, but then it reduces to just an awful niggling constant ache with electric shock zaps, I have numbness and weakness in my right arm. Numbness and weakness in my right leg. Constant headache, migraines in the rear of my head, ear ache and jaw ache in the right hand side. Muscle stiffness and pain in my head, neck, right shoulder, upper back right side and into my arm. I am also still struggling to swallow properly. It is far worse than just after the surgery but the Oxy makes it manageable. I am using strong cbd mid morning and mid afternoon and it’s actually helping. Yay. 30mg Oxy at 6.00am and 5.00pm. I need to start weaning off these meds soon before it’s fully in my system, back down onto morphine, but not yet. I have a plan to help me reduce down, I’ll try again in another week. 👍

I must stick to my routine! More information about my 2nd surgery is here, in case you are thinking of having this yourself.

Having ANY surgery with fibro is very very challenging and much much more painful.

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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!!

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.

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!!

Quiz – How much do you know about Fibromyalgia?

Now this is taken from research and you might have different experiences.  But try this quiz here and see how you get on.  It’s a fun way of seeing what else is out there.

Maybe there is something in this list you have never tried.  I started a new supplement yesterday, I’ve started slow just one tablet twice a day, whilst I see if anything upsets my stomach, so far so good.  My new supplement contains ingredient in this list that has been proven to have positive effects on people with this condition.

Good news today is that my sore throat seems to have gone, which is good.  I always use first defence at the first sign of any germs, view here, it works every time I get germs, it just seems to stop them in their tracks.

I was asked to go painting today but that is not going to happen, far too achy for that.   My husbands new bike dumped brake fluid all over his bike last night and now he’s lost his back brake so we will be going back to the shop to get this sorted out.  This will give me a chance to practise on my new bike 👌🏍

Bikes are now my passion as well as cars, we’ve had some nice sporty cars in the past before all these started and I could easily drive them.  Let’s hope we can back to that feeling again.

I was thinking the other day about Autumn and Winter, wondering how I’ll feel through both these times of year.  I haven’t enjoyed Spring or Summer as much as usual, I’ve found it a little too hot at times.  I think I’ll buy the biggest coat I can and bury myself inside it to keep nice and snug.  It’s usually nice and warm at work to be honest and thankfully it isn’t far home.

Trial patient for Fibromyalgia 

After the initial bad couple of years with trying different medications with this condition and feeling disgusted with just constantly being fed more pills.  I wanted to try to put this ‘situation’ to some good use.

There is not a cure for #fibromyalgia and as the nervous system and mind are so complex and every single person is different I doubt there we will be.  But what if a combination of holistic and medical treatments were available to improve our symptoms and more importantly quieten down the root cause; our ‘short circuiting’ nervous system and brain?

I spent an afternoon searching on the internet for clinical trials in the UK and came across this site here, you can search the medical condition and even an area of the UK and see what is available, sign up, contact people for more information or even just ask to be kept informed.  Brilliant I thought!!  Let’s get involved, I’m game. 

I was turned down for one as I had took Tramadol in the last 6 months and one had no funding to pay for my travel, but I was accepted for another.

I am just waiting for a date to travel over for the one day trial and they have offered to pay for me to travel and my time plus I can spend some time with a Fibro specialist to talk about anything I want.  Fantastic…..

I will keep you all posted, but why don’t you take a look at the site and see what you think?