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.

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One week post op

The last 48 hours have been hell. The pain in the right hand side of my body, neck, shoulders and head have been worse than the first fusion. The reasons for this is that the lower spine I could rest by just laying on the bed. When your neck has been cut open it hurts even to hold my head up, it hurts to swallow, indigestion hurts and I feel bruised inside. This is normal and I am under no illusions that the pain is going to get worse, as I try to undertake my physio exercises.

Ha ha I must have started this post the day before yesterday and then forgot, it was hurting me to text.

I am glad to say today that I feel much better. I think the Oxy is well and truly in my system now. I’m sleeping better than I have done in a long time. I’d never take this stuff for fibro, I can see that you could get in a cycle of constantly increasing your dosage. I can imagine wearing off it is like absolute hell, much worse than tramadol or morphine.

The little dog has been cuddling nonstop, under my sofa blanket and everything lol. He’s so cute and has kept me entertained whilst I am home alone.

Anyway so far so good. The first week has been hell, resting is important, no cleaning, keeping my right arm rested but also not just sitting on my backside all day long. This weekend I want to start walking, build up my strength.

Again I forgot to post this from earlier and now it’s 12.30 at night and I cannot sleep!!

I had pushed fibro to the back of my mind since the operation and today I’ve had a big reminder that it’s still there!! I ate some chocolate cake left over from my daughter which is full of gluten and sugar, the pain in my neck, shoulder, arms and hands is unbearable and I’m struggling to get comfortable. I know it’s my fibro as my lower back is hurting and I have this flu type feeling, a mini flare up. What an absolute tit, I have to stick to my plan, stay healthy. I have a sugar and gluten free cake I’ve been eating fine all week so I should have stuck that that. I’m sure my daughter will be telling me I told you so!! ­čśé

I know some of you probably have not figured out just how much your diet impacts on fibro, I didn’t believe it myself until I went on the diagnostic diet. I could not believe the difference in how I felt once I’d figured out which food types made me ill­čĄĺ. Here are some good groups that CAN affect your condition and increase some symptoms here.

I know some of you will have tried ‘diets’ I fu@@ing hate that word! Diets don’t work, full-stop.

You have to change your eating and drinking habits and make it permanent. Trust me; cutting out a few foods is pointless if you are leaving several other ‘trigger’ foods in your meal planning. Also when you go onto a strict eating/drinking regime the flare ups are more severe but last hours not days/weeks; why? Because you figure out what you ate/drink to make you ill and stop, thus cutting off the intake of that trigger food/drink.

You are what you eat; eat shit and feel shit!! Eat more fresh food, cut out foods full of sugar; yes, even some fruits, mango makes me feel ill as it’s full of sugar.

I need to eat healthy even more right now, I’m trying to recover from one of the worst surgeries I’ve ever had and being silly is not going to help me. Tonight I will hardly sleep which means more pain tomorrow, no energy, negative thinking and more pain! All this for a piece of bloody cake!!

Processed food, poor food choices and fibro

I never expected foods to affect fibro as much as it does for me. We all know that fibro is all about how our nervous systems work. I like to think of it as a very sensitive short circuiting computer system. Our nervous system has its tentacles in everything in our bodies, whether it be physically or psychologically, read here for more in-depth details.

You already know that if you go on an alcohol and takeaway binge that you will feel tired and sluggish for a few days. With fibro it’s the same, only foods and drinks you never thought would affect you, will.

Diets don’t work with fibro either you must remove all potential food groups and stick to a basic diet of certain meats, all fish, green vegetables and seeds and berries plus no caffeine for 3 weeks. This is the purest basic paleo (caveman) diet there is.

You can only eat the pink foods above but as much as you want to for 3 weeks. For the first 3 days you feel absolutely dreadful as your body craves all the other stuff you have been eating and drinking. I had a bad migraine and had to take 2 days off work!! But then I felt fantastic!!

After 3 weeks you can try adding one food in a day for 2 meals; breakfast and lunch; if you feel well continue to eat it, if you gain weight the day after (water retention) don’t eat it again. If you feel ill; increased muscles pain or fatigue don’t eat it. If you only get a mild symptom that goes quickly then it’s an occasional food!!

These foods are what I started introducing first…….

The ones I crossed out I don’t eat anyway. The above foods have a high risk of you having a reaction.

I felt absolutely amazing on the diagnostic diet and lost 29 pounds in weight. But any food that causes a flare up, the reaction is so severe now it’s puts me in bed in agony, but it’s short lived as I don’t eat it again.

Foods I cannot eat without getting ill are:-

  • Anything containing large amounts of sugar
  • White rice or white pasta
  • Alcohol
  • White bread
  • Any processed foods
  • Eggs
  • Chicken unless it’s organic
  • Anything containing ‘E’ numbers
  • Anything containing gum
  • Anything containing MSG
  • High sugar fruit such as mango
  • No processed sauces, tins or jars

Foods I can eat rarely but never more than 2 days in a row:-

  • Anything containing potatoes
  • Indian takeaway
  • Brown bread
  • Brown rice or pasta
  • Nightshade foods
  • Crisps
  • Dark chocolate (above 85%)
  • Any diary
  • Plain vanilla ice cream

I can however eat any meat but not too much red, any fish, any vegetables and fruit that is not high in sugar. I can eat organic snacks such as fruit bars etc….. organic tins, jars and sauces.

I know some of you may think that you don’t have the energy to cook fresh all the time, but you have to get creative and overcook so you can save meals to warm up other nights, use a big slow cooker and let it cook itself. Or failing that get someone else to cook, my husband does all the cooking and when he’s away he over cooks foods and saves them into containers so I can warm them up to save my energy.

Symptoms that have reduced or in some instances disappeared:-

  • Fatigue
  • Gastrointestinal issues
  • Monthly pains
  • Moodiness
  • Headaches
  • Muscle pain
  • Fatigue
  • Itching
  • Rashes
  • Brain fog
  • Insomnia

Etc

If I eat something my body does not like some of the symptoms above get so severe and come on within an hour of eating it, is very severe but lasts a shorter time.

What I did not realise is that due to me eating foods and drinking alcohol constantly this is why I always felt ill, could only sleep 0-3 hours a night and could not stop having bad flare ups, they were increasing and becoming more severe.

This is why diets or just cutting out one or two foods don’t work, you have to give yourself 3 weeks on the bland diet to clear out your system and remove all toxins. Then take another month to add one food in a day, not several at once. It’s not easy but I have had a better result from changing my diet than any pill I’ve tried and believe me I have tried them all.

Why don’t you try it? What’s stopping you? If you don’t do something different you’ll never change your symptoms or the severity of your fibro. You need to find what works for you and stick with it.

Am I a saint? No bloody way I drank gin this weekend, first time in 4 months and ate 2 takeaways but food I know I can eat such as lamb and fish. Yes I feel fatigued and have muscle pain but it will go……..

Why does this work? Because we absorb food into our immune system, glands and nervous system through our intestinal wall it’s that simple. Bad food makes you feel shit! Good food reduces symptoms.. …. read here for more info and try it out.

Anxiety, Depression and Fibromyalgia 

Apart from fatigue anxiety is second on my worst symptom list, certain activities make it worse and I think I’ve finally figured out why, from my personal experiences.  When I am getting ready to go out, see family, go out for a meal or whatever we obviously have emotions of maybe anticipation or excitement etc and think with over fibromyalgia our over stimulated nervous system confuses these feelings and we internally confuse these feeling into feelings of anxiety.  I get panicky, breathless, heart racing and anxious.  Once you recognise this pattern it can be controlled.  Don’t let these feelings stop you from going out and living, it may feel easier just not to go out but then we are giving in to this condition.  Recognising the symptoms, learn not to fight it, but use relaxation techniques and deep breathing helps. 

What I have also noticed is that the sensory over load from loud music and busy places can also cause anxiety.  I had to run out of a friends house the other week as the music was too loud.  

I tend to use ear plugs now that are especially made for noise reduction.  You can still hear conversations but it cuts out the bass and loudness. 


Depression is a part of fibromyalgia caused by the loss of your previous pre-fibromyalgia life, loss of friends, suffering constant pain, stiffness, anxiety, itching, skin sensitivity, food and chemical sensitivity.  I stopped taking anti depressants last year and thought I was coping well but it hit me like a train.  I asked the doctor to go back on them but at a reduced dosage of 20mg instead of 30mg.  I feel so much happier.  It’s well researched that a low dose of anti depressants increases serotonin and can reduce pain.  Why do you think doctors prescribe Amitrypyline for pain relief at night.  I don’t use this medication as the side effects were not worth the positives of taking the medicine.  Read here for more info 


All medication cause side effects as they are designed to change how we think and feel so always weight up the positives against the negatives and make your own decisions. DO NOT TAKE MEDICATIONS JUST BECAUSE THEY ARE RECOMMENDED.  Not all doctors understand Fibromyalgia they are General Practitioners not fibro experts.  I gave up several medications last year and I can categorically state my symptoms have reduced.  It’s a personal choice so make sure you do your research and always give meds a minimum of 2 months to get the full effect. 

Citalopram and Fibromyalgia study here. 

I have found my spirit

Something happened to me 2 weeks ago, I was travelling home on my motorbike and I’d been having a hard time with withdrawing off all my fibromyalgia medications, crying every day and generally feeling very disturbed, lonely and depressed. But one day whilst riding home, I felt free, different, like I’d dropped something off on the way home. I got home and after locking up my bike I just sat in the house smiling, knowing I felt different but not really understanding what had happened.


I thought about this most of the night and I thought maybe this was due to the transition of coming off a number of regular medications, which quite frankly didn’t work or did for a short period of time and transitioning to natural supplementation.  I mean what else could it be?  Acceptance, maybe my mind had shifted by undertaking mindfulness practises every day with yoga and meditation?  Maybe it was a combination of everything?

Well whatever it is it’s like it all clicked into place.  I’ll be honest since that day the fibromyalgia really hasn’t bothered me too much as long as I stick to the plan.  What plan is this you might ask?  It’s my plan.  Something I’m working on for me, something I will share with the world once I prove it works and something I dream about doing as a profession.  This is why I’ve been given the gift of fibromyalgia after my spinal fusion. It’s to learn optimum health, the meaning of my life and to help others, thats what I feel happened to me 2 weeks ago.


So what are my tips for starting your plan?  Tackle the number one problem; stress. Work on your diet, you must find the right exercise for you and do it every day and find the right supplementation. Retrain your brain using mindfulness meditation, self hypnosis and other techniques. It takes blood, sweat and tears but one day the weight will come off your shoulders too.

You’ll never cure fibromyalgia but you’ll learn to live with it like I have, even maybe learn to love it ÔŁĄ´ŞĆ. Sound crazy?  Not at all, do you love yourself?  Learn to love the condition and help your body cope using the power of your mind.  Your body deserves that. 

Tips for managing stress:-

  • Don’t worry about the things that are out of your control (for example developing this condition, just accept it)
  • Take things one step it day at a time (don’t worry about tomorrow or next week, use mindfulness to bring you back to the present time)
  • Prepare for stressful events by taking 5-10 minutes to focus and calm your mind. (Close your eyes and visualise your favourite place, taking in all the sights, sounds, smells and turn up everything including the colours and noises)
  • Try and look as change as positive or as a challenge, instead of assuming it is an hindrance.  (List down the positives of what the change could bring)
  • Ask yourself what you can learn from things, and how you can inspire or motivate people from your experience. (Is there a friend or someone in a focus group who is having a hard time that can benefit from what you have learnt?)
  • Share your worries or concerns with like-minded people.  You are not looking for sympathy, but empathy. (Sharing with a focus group or friends can be empowering)
  • Take a 5 minute walk if you can.  Walking and stretching can renew your energy.  (I walk every day for at least 5 minutes and do mindfulness yoga daily.  It’s relaxing and clears your mind).
  • Remember to eat (fibromyalgia makes your nervous system over sensitive so how often you eat and what you eat makes a massive difference to how you feel both mentally and physically, make it natural, organic and small meals every 3 hours).
  • Try and set realistic goals – but don’t push yourself, you have been through enough already (your goals can be simple enough to be achievable and you need to have them pinned up somewhere where you see them).
  • Journal your thoughts or begin a simple blog.  Reaching out to others who have been through similar experiences can be life changing (I do this both on WordPress and on Facebook, my sites are not to share negativity but to share my experiences with others but also to allow me and others to laugh at the ups and downs on finding my path, you need to write down the purpose of your blogging, this will keep you focused). 

Working with fibromyalgia

I had a particularly rough day yesterday.  I felt really negative and I seemed to slip into a dark hole.  I wasn’t expecting it but I knew something was happening which is why I opted to work from home.  It wasn’t just exhaustion!

Like an idiot I worked from my bed, it was not comfortable for long.  I woke up this morning feeling like I’d been hit around the top half of my body with a baseball bat!!  Next time I will sit at a desk and take more rests.

I had a very depressive day, I couldn’t bring myself to meditate and didn’t want to talk to anyone at all. I even went to sleep at 8.10PM on my own as my daughter was at her dads.  I did manage 6 hours sleep in the 10 hours I was in bed. Yay.

It isn’t healthy shutting ourselves away or sitting hunched up in bed all day, we must keep mobile or the stiffness sets in and boy did I feel it today.

Working with this condition is by far the hardest thing I’ve ever had to do.  The exhaustion, stiffness, aches and pains (my fusion still hurts), mental grogginess, anxiety and depression is tough.  Giving up my dream job was hard, I was do good at it, but once this condition started to get worse I couldn’t do what was expected of me.

Do you all still work?  What changes did you make to your working conditions?

Did you have to quit your job?

I won’t give up until I cannot get out of bed and I will not allow that to happen. 

So, what did I do st work to improve my symptoms:-

  • I was honest about my condition
  • I work from home when I need to
  • I book annual leave when I need a rest, I’ve learned from mindfulness and keeping diaries for pacing when I’m about to have a Fibro attack
  • I am strict about working hours
  • I will not skip lunch
  • I drink a minimum of 3 litres of water a day
  • I eat breakfast and lunch and I ensure I make my food as organic as possibly
  • Don’t eat takeaways or food on the go from the canteen unless organic
  • I do not drink any flavoured sweetened drinks
  • I only drink one coffee a day
  • I keep an action log
  • I block out activities I need to do in my diary
  • I have a hydraulic desk and specialist spinal chair
  • I gave a lightweight laptop and a tablet for travelling
  • I will not have meetings later than 3pm
  • I try not to undertake back to back meetings I try to leave a 15 minute gap between meetings
  • I have refused to travel to a meeting in London and insist on conference facilities until I feel stronger
  • I registered for a disabled parking space
  • I listen to a 10 minute mindfulness recording each lunch time
  • I fetch a drink or go for a walk each hour to stretch my legs

Read some more useful tips here 

Patience with our ‘wild minds’

I have been reading chapter 4 of my Mindfulness for Health book by Vidyamala Burch (read the reviews here)  about how our mind wanders whilst we try to meditate and why it does the same when we are in pain.  If we try to force the mind to be still it will kick and resist and we get exhausted by the struggle, if however we let it roam and follow it with our awareness, it will settle down of it’s own accord.  Our minds struggle as we oppose it, if we are patient and focus our awareness in the minds struggle, then it will become calm.  We can then refocus on the breath or body and the mind starts to get curious about the object of you refutation.  It will become gently calm, yet alert and vibrant.


The other reason why our minds refuse to settle, especially if our bodies are in pain or highly stressed while we meditate.  It is natural for the mind to avoid unpleasant sensations in the body.  It will want to distract especially after chronic pain sufferers are told ‘keep yourself busy, and distract yourselves’ only to stop and be in agony!!  We try to avert the pain.  Pay attention to your thoughts, see how it bounces around and drags up past troubling memories and then exploits them in the future, creating stress and anxiety.  Just notice them and give these thoughts and feelings names, but not judging them and then coax your mind back to the breath or your body and continue meditating. 


Think of your thoughts as passing clouds in a beautiful blue sky.  You notice them and let them go and the blue sky is always there.