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forminectomy – 3rd spinal surgery

Well it’s 15 hours after the surgery and I think all of the local anaesthetics that were injected into my spine have worn off………… I am using the pain pump full of morphine every 5 minutes, but it is now not working.

My consultant warned me that the pain would be bad, worse than the other 2 operations; but oh my………….The muscle pain is the worst I’ve ever ever felt. It hurts to breathe, to move, to stay still. My neck feels really stiff and I cannot move my head. I tried to use the collar they provided me to help take the strain off, but it made the pain feel worse. I asked the anaesthetist to allow me to utilise a pain pump with this being the most painful operation, he agreed, thankfully.

Once I came round in the recovery room, the pain hit me!! It was unbearable and I was crying, so I ended up having 6 doses of my pain pump in the space of half hour. I was then placed on my own personal pump. I was able to use dose of 5 every 5 minutes, should I need to. I didn’t use this at all times, but only when I needed it. The pain was kept under control, but it was still painful.

I was given my usual dose Oxycodone of 10mg at 7 or 8, I cannot remember, it might have been earlier πŸ˜‚πŸ˜‚. The oxy and morphine blew my head off, I asked to not have the oxy so it didn’t react too badly with the pump, but they insisted. The pain relief was amazing, I hardly felt anything, but my heart rate was only 54bpm and I was hallucinating a lot, it was funny; I saw my dog, thought I was in a hospital, train, I saw and heard things, but I knew it was the meds so I enjoyed the fun, I still could not sleep as my heart rate was so low……..

The good news from my anaesthetist and consultantwas that the bones which were removed had released a whole bunch of trapped nerves, not just the left medial one.

Once the pump was removed from my neck, through my shoulder muscle and out, it felt much better. This was 3 hours ago and now the pain is unbearable again. The morphine is helping, but I cannot sit upright without pain, if I lay back on pillows it’s still bad, I cannot move my head or hold it upright, arghhhhhhh.

I had a double Forminectomy in my cervical spine; where I previously had my 2 cervical discs removed, a double fusion and a few bone spurs removed and shaved. C5/C6 and C6/C7. Read more here.

The fibromyalgia makes your pain receptors much more aggressive and over sensitive. Things that should not be painful, are painful. I’ll give you a couple of crazy examples of what happens during a fibro flare up:-

    The wind blowing the hairs on your head/arm and this hurts.
    Someone puts their hand on your shoulder/arm and it hurts.
    You blink and it hurts.
    Clothes or a bed quilt brushes against your skin and it hurts.
  • My personal nurse has been coming to see me every hour. I am now using the pain pump every 5 minutes; which is giving me a bit of relief. I’m trying to lay flat now and use a quilt to prop my head up a little. It’s hurting to hold my head up and sit up felt supported by pillows. I can’t move my head without intense pain and the collar they have given me hurts too bad.
  • Once the pump goes tomorrow what am I going to do?! 😒. This operation is taking pain to the next level…………..
  • I’m now off to do some meditation, clear my mind, focus on healing my spine and relax my muscles. Remember that pain is fluid, it changes, it’s not always there, you do get brief episodes with no or reduced pain. Focus on the positives and remember ‘things’ will always turn out for the best.
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    Post holiday pain

    It’s very easy to blame everything on fibro, but it’s important to remember that when we age, we will get more aches and pains, we will feel more fatigued. With fibro those aches and pains WILL feel more painful, as that is what the condition does. You can more here about his fibro impacts ageing.

    My husband has a good way of keeping me in check; he explains that are we had been on a day out, he sometimes feels achy and tired, which makes me feel better as it’s natural (especially when not exercising) to feel stiff and sore a lot, your muscles aren’t getting used as they should be. He also explains that if I don’t move much I will still hurt, so I might as well go out and at least do something.

    The reasons why I hurt post holiday can be attributed to the following:-

    • Poor food choices; eating sugary, rich food.
    • Overeating and gaining weight; I gained 10 pounds in 14 days; most of this will be water retention from the food.
    • Drinking alcohol including cocktails (sugary).
    • Doing more activities.
    • Sitting in uncomfortable chairs for too long a period.
    • The sun and heat.
    • The cabins were cleaned twice a day; so I suspect exposure to chemicals in an enclosed area.
    • Flying – jetlag
    • Dehydration.

    I am sure there are others. It takes me about 5-7 days to recover. Plus as I’m in so much pain and my fatigue and sleep is poor, I am not moving around much; this affects my back and neck pain, increases muscle stiffness and fibro type muscle pain. You can read more about the effect on fibro with holidays here.

    I will not becoming immobile it stop having holidays, I just need to be sensible.

    Bear these things in mind; these are what I have found that flare up my fibro:-

    • Flying over time zones of more than 2 hours time difference.
    • Flying anywhere as cannot queue, painful to sit, food is poor in airport and on planes.
    • Too much heat and sun.
    • Poor food and drink choices
    • Dehydration
    • Exposure to chemicals (cleaning products are the worst).
    • Not pacing activities. Doing too much.
    • Not going to bed and waking up at set times, sleeping less hours.
    • Carrying luggage and bags.

    I could go on………

    Cruising for me is ideal, you don’t have to fly or you can just fly home. Everything you need is onboard, you don’t have to go out on the stops if you feel ill. I also shaved up for premium seats which were brilliant.

    I cannot ever see me doing a package holiday again, it just makes me too ill afterwards. I also cannot stand the heat anymore, sunburn with fibro is excruciating, it’s like scolding your skin with boiling water and makes you feel like you have the flu……….

    So what can you do when you return…….

    • Increase water intake
    • Eat fresh as much as possible
    • Reduce or ditch caffeine
    • No drinking alcohol.
    • Rest
    • Increase daily walks or exercise by 5 minutes each day, after 2nd day of total rest.
    • Short term use of painkillers I.e. 3 days!!
    • Re-establish set times for going to bed and waking up.
    • Slowly unpack luggage and ask for help with washing and ironing.

    It’s been 5 days since I returned home; I lost a nights sleep on the flight, am in agony from sitting too long on the plane. My fibro is bad due to exhaustion from walkingtoo much, heat and sun, plus poor choices in food and drinks. I am now back on a fresh diet, no alcohol, reduced caffeine intake. Rested for 4 days, now increasing movement. I am very positive as I know this will pass and it has been worth it to get the memories I now have. Fibro will not stop me from having a life, I just have to work with it and not against it. It will always be with me, my body needs a friend right now and I am going to look after it as much as I can.

    Going on holiday with fibromyalgia and spinal challenges

    I used to go away twice a year prior to developing fibro, even with my back issues I still went away. Journeys are hell with fibro as this makes my back pain and stiffness worse.

    One of the worst things is flying, especially long distance. The last time I did a long haul flight in 2015 it was awful. I was actually crying by the time we landed and spent most of the next 3/4 days in bed………

    You might have to change your holiday routine, destinations, activities and duration. Try to cut out driving, you will cause yourself fatigue, muscle stiffness and pain for days to follow. Flying is extremely challenging. Queuing, sitting in uncomfortable seating, waiting, over reliance on processed fast foods and alcohol intake. All this amplified your fibro symptoms, along with night time flights robbing you of much needed rest. I now burn in the sun very easily, within minutes and my skin swells up. My forehead swelled last year…….

    It’s important to chose your holiday wisely, stick to fresh healthy food, lots of bottled water. DO NOT DRINK ALCOHOL IN THE DAY OR SUN AT ALL. In face the more you avoid it altogether the better you will feel. My skin is very very painful to touch on the torso when I’ve drank alcohol. You can read more about why our bodies hurt to touch after drinking here.

    Top tips

    • Avoid long haul flights
    • Upgrade if you can afford it
    • Take extra medication
    • Stick to healthy natural foods, not processed.
    • Drink lots of water
    • Avoid alcohol
    • Take a heat/cold pad
    • Keep out the sun (be sensible)
    • Take a sun hat
    • Get someone else to drive if possible
    • Wear flat shoes
    • Keep walking to a minimum
    • Take time to rest
    • Try to go to bed and get up at the same time
    • Use organic sun cream
    • Take anti histamines
    • Use organic beauty products
    • Ask for mobility support at airports
    • Ask for easy access rooms in hotels
    • Allow time to rest before and after the holiday
    • Arrange for help packing, housework and shopping in your return
    • Book a holiday that is suitable for your needs
    • Don’t do activities that will exhaust you or cause you to flare up

    Grieving for your past life is healthy

    It took me over a year to accept my failing health from when it started to get worse. I’d already had a back operation in 2014 and it took over 2 years to recover, I’m not fully recovered and still have pain issues. It was only after I started to develop fibro in the latter half of 2015 that I realised that my life would never be the same. I was working on a very stressful project and suffered some bullying at work, I wasn’t recovered from the fusion and I developed fibromyalgia. The condition got worse until I found myself on a massive amount of medications, mentally ill and feeling suicidal and questioning whether I could continue to work………

    Since the diagnosis, which took another 6months and that is fast as it often takes an average of 3 years to get diagnosed. I’ve had to have a double cervical fusion ( fusions now) and laminectomy and now await a date to have the back of my neck bone removed…….it’s been very challenging and trying to hold down a full time job is exhausting and frustrating.

    It took me a long time, well over a year to accept that my past life will never be a part of my present life. It is vital you allow yourself to grieve, it’s the same as losing a loved one, you’ll never feel any better than you do at that moment unless your grieve. It involves a lot of tears, heartache, honesty with your loved ones and work (off applicable).

    You have to change your lifestyle, give up some of your activities, agree ongoing support and most importantly focus your priority of improving your mental health.

    You cannot continue doing what you did before fibro you have to change, I know you don’t want to but it’s not possible if your symptoms are getting worse. Only when you get on top of the symptoms and reduce them, then maybe just maybe you might be able to get back to normal……… read someone else’s story about grieving for your past life here.

    Don’t forget you will also have times when your symptoms improve and worsen; things like illness, injury, stress, operations, overdoing things, insomnia, bad choices in food and drink…..all of these things will affect your symptoms. Some of these things you can avoid and others you won’t, but you can always control how you react to them.

    It’s been a while since I posted

    It had been a while since I posted, I have been focusing hard on recovering from the recent double cervical fusion and getting back to work.

    I am back at work starting an 8 week rehabilitation; I do 1 days worth of hours split over 5 days for 2 weeks, then increase a day a week and so on. I should be back in work full time by w/c 8/10/18.

    It has been hard, I am fatigued, found it hard to concentrate at work and I still cannot get out of bed early. I have a nerve pain issue in my left arm which started a couple weeks ago. This is causing permanent pain with unbearable spasms. I have weakness in my fingers and hand too. I am back at the hospital next week to try to find out why this started 3 months after my latest surgery. This pain is multiple times worse than before the surgery. My consultant says this is NOT normal. It could be permanent nerve damage (but this would have started earlier), maybe something has migrated in my neck or one of my other discs above or below the double fusion is affecting my nerves (I bloody hope not!), or I’ve done something to flare it up (not that I know of).

    Since the operation my fatigue has improved, in fact a range of my fibro symptoms seem to have improved. This is the conclusion from a study here…….The surgical treatment of cervical myelopathy due to spinal cord or caudal brainstem compression in patients carrying the diagnosis of fibromyalgia can result in a significant improvement in a wide array of symptoms. Minimizing those symptoms translates into a measurable improvement in quality of life. A detailed neurological examination should be incorporated into the evaluation of every patient considered to have fibromyalgia. The finding of cervical myelopathy warrants radiological investigation to exclude a treatable cause. More intriguing, in view of these results, is the possibility that, in some patients, cervical myelopathy may be the underlying cause of the fibromyalgia syndrome. Here is the full study here

    My fatigue, cognitive issues, headaches, overall skin sensitivity (pain when being touched by anything including clothes), muscle aches and headaches have all reduced significantly.

    This is amazing and I thought impossible, but studies have proved this can be the case.

    Now I just need to find out what’s wrong with this sudden nerve pain and weakness in my left arm, hand and fingers and hope I don’t need revision surgery. Hopefully this is nothing nasty and will settle.

    Feeling more hopeful

    I’ve had a rough week as you’ll know from reading my last blog. It’s important not to let this get you down too much. Life is full of ups and downs isn’t it? Some of it brought on by my slipping into bad food routines, forgetting to meditate and introducing new routines.

    • You have to stick to a strict routine; get some decent fresh groceries delivered, use a hot pot to overcook food, put in boxes in the fridge to warm up.
    • Don’t over rely on meds, they can increase fatigue and even pain as your body gets used to them. Try alternatives such as cbd or cannabis oil (if you can get hold of it).
    • You must exercise, every day. This will reduce pain and stiffness. Break it into 5 minutes every hour if needs be. Go for a walk, have a stretch, whatever it takes, but no sitting all day……..
    • Take vitamins (high end, not cheap China made). Vitamin B12 injections and folic acid (oral) have been amazing for me so far.
    • Meditate, as often as you can. I like to use YouTube in the day, Deepa Chopra is great, I used this yesterday here. I also use the Buddhify app here. It is free.

    I have actually got a good system going with little reminders in my phone to make sure I stick to my routines. If I slip I feel the repercussions, sometimes this happens within hours or days, but I can tell the difference in flare ups now; was it food, reducing meds, bad food, inactivity or overdoing things?

    Tackling fibro and pain relief can only be done by establishing a good routine, finding out what makes you feel worse and stopping doing those things. Finding out what makes you feel better and continuing doing these things at the right intervals.

    Every single day I wake up I hate myself and I hate my life. I practise gratitude; I lay in bed look out the window, put a heat blanket on my neck, drink coffee (filter made with coconut milk), think about positive things. What makes me smile 😊, it can be anything, it’s your life, don’t let people tell you what to be grateful about, it might be something material. I love my motorbike and I’m so proud I passed my 3 tests first time and have the bike of my dreams, I’ve not been able to ride it in 3 months πŸ˜‚πŸ˜‚. But I will mines the blue one ☝️.

    My little doggy

    He cuddles me, licks my tears, follows me everywhere and sleeps with me too.

    I don’t have many close friends anymore, I cannot socialise much and I needed to keep healthy, so I have just a handful that I see. That’s enough for me, they know how I feel and what I go through every day.

    My family are great, my mum, dad, daughter and husband, very helpful.

    I love nature and the Earth, we have lots of pets, which cost a fortune in electric and I sometimes curse them when I’m fatigued but I love them:-

    • Dog
    • 3 cats
    • Stingray
    • Tropical fish
    • Marine fish
    • Green day geckos
    • Pond fish
    • Anemones

    It’s like a zoo!!

    Do what makes you feel good and don’t let other peoples negative opinions away from your routine.

    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 πŸ˜‚.

    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. πŸ‘

    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.