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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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!! 😂

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 ill🤒. 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!!

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 😂.

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 👍. 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 ☕️.

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

Post surgery 2 ACDF

Well that was simple compared to a lumbar fusion surgery!! Only took just over 3 hours and not 5 like last time and that was for 2 discs. Had one nurse telling me no milk, got chatting about bikes to another and she fetched me 3 lattes and ice cream 😂😂😂😂.

I love this hospital!! They will do whatever they can to make you feel comfortable. I have my own special I V cocktail of morphine and tramadol which is great. Fantastic even. I’m so chilled out, been buzzing constantly for ice cream and lattes lol 😂

This cocktail is keeping my pain relief at bay and I feel super chilled 👍.

I’ve been naughty and asked for another ice cream 😂😂😂. Just thrown my head back to get my hair out of my face and forgot, arghhhhhhh that hurt!! 😂😂😂

The above is my sexy hospital look 😂😂😂. Ok doing well just starting to hurt now and visitors coming speak soon xx

‘Normal’ people don’t get it!!

It’s hard to explain to people just how draining it is to have fibromyalgia. Unless they have had the flu they cannot imagine a flare up. Unless they have had a hangover or a viral infection for months on end, they cannot imagine how we feel every day.

Mornings are the worst; the headache, unable to open my eyes, muscle aches so extreme that for a brief moment I wish I hadn’t woken up at all. The fatigue; it’s like you’ve slept for only a couple of hours at most. Then when you do get up, I can’t stand long enough to do my make-up, hair or anything else. If I couldn’t work from home every afternoon I would have to resign from work.

I’d love nothing more than to ride my motorbike to work, but I don’t have the energy to get changed twice before work, then again after work to get home.

When I finish work, some days I don’t eat as I don’t feel well enough to cook, I can’t stand long enough or cannot face doing the dishes as too tired. I can’t go out anywhere or do anything at night as I struggle to function, working has zapped all my energy.

I’m ashamed to admit it but when I’ve had a bad flare up I have not even been able to bathe for up to a week, sometimes not being able to get out of bed.

People say oh yeah they are tired too. But this isn’t about being tired……fatigue is extreme, it’s painful in the muscles even and it’s very hard on your mental health.

I never in a million years imagined feeling so ill for so long. Getting a simple cold that can knock me off my feet for a week, unable to look after myself. Never mind give any attention to family or friends.

I have sunk so low in the past I’m ashamed to say that I wanted to die, as I could never imagine living like this for the rest of my life. Not just the fibro, but having 4 collapsed discs, one removed and fused (which is how I developed fibro in the first place), now my spinal column is being crushed by 2 of my neck discs and crumbling facet joints, it’s excruciating.

Life can be cruel, but life is also beautiful. I used to take so many things for granted. Now I have learnt to get joy from the simple things in life. Friends that were toxic I let go, I have passed on some of my household duties to members of my family. I pay people to do jobs around the home I used to do myself. I’ve also bought my dream car and motorbike as I know I will most probably end up not being able to use either; as I get older.

You see, life goes so quickly and I realised I cannot spend any more time being sad and depressed. I needed to change and educate the people around me. If these people cannot accept the way I now or how I have to live, then I will let them go, no matter who they are!

I console myself by the fact I am not going to die, I don’t have cancer and there’s always people out there worse than me. Life is amazing and even with fibromyalgia and my spinal issues I can enjoy my time on this Earth.

You have to dig deep into your soul and move into acceptance, move out of the ‘why me?’. There is always a reason why we develop fibro; illness, chronic disease, car accident, spinal issues, viral infection, mental health issue, the list goes on and on. It’s not always easy to figure out the reason why, but when you do you realise it’s not your fault. Why do some people get illnesses and others don’t?

Life is too short to torture yourself, yes I still get bad days when I cry, but most of the time I feel happy. No matter how much pain I am in, no matter how fatigued I am. Life is going by so quickly, don’t spend it feeling sad, so less of the things that make you ill and more of the things that make you smile. Get rid of the people that make you feel worse and surround yourself with positive people.

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.

Diagnostic diet part 2 and Fibromyalgia 

As promised, I would send you an honest update on how my diagnostic diet is going.  I started before I spoke to the consultant and completely ditched all processed food, so nothing came out of a packet.  I lost 7 lbs in 2 weeks and felt so much better; less fatigue and reduced muscle pain.  

I went into the diagnostic diet for 2 weeks to cut down my diet to a very basic bland hunter gatherer type.  This basically removes all potential foods that could cause a reaction with my nervous system.


You only eat the highlighted foods for the first 2 weeks.  You track your symptoms and at first you feel worse; giving up coffee gave me a migraine.  I lost 12 pounds in 2 weeks!!  

After the first 2 weeks my daily headaches disappeared, my fatigue was reduced, my muscle pain went away and the nerve sensation issues I had like tingling, itching, pain upon touching disappeared.  

I was just coming out of a flare up when I started the diagnostic diet and my sleep was terrible; 7 hours over 3 nights.  I asked for 5 days worth of sleeping tablets and usually they take my sleep from 3/4 hours to 4/5 but this time they worked great.

It took about a week to get over stopping the sleeping tablets (this is why I don’t like to take them)! Now I’m sleeping much better, deeper and longer 5/6.5 hours. 👍

Switching to fresh food only I lost a total of 1 stone and 7lbs in a month and never went hungry.

My moods are better, less extreme and my menstrual cycle was less severe.  I haven’t had digestive issues either.

The next phase of my diet is to slowly start bringing in the rest foods not highlighted on the photo above, one by one and track symptoms.

So far I’ve been able to eat asparagus, grapes, veal, tuna steak and tomatoes.  

I’m still not able to exercise until I’ve finished the next month as this could skew the symptom tracker.

I can’t wait to restart proper exercising as I’m so weak, getting out of breath walking up hill or up or down steps.  I couldn’t even keep up with my 67 year old dad!

It’s not easy as you have to have willpower and you have to track everything; symptoms and weight, which will start to increase if my nervous system reacts to it.

I have a comprehensive stool analysis kit to do and send off but I need to wait till I get paid as it’s £160 for the analysis; 3 collections and I have strict guidelines to follow including mixing with liquids, dealing and posting lol.  I have a list of other tests to do too that I have to pay for as the NHS has refused, simple blood tests.

I am willing to do anything to feel better and the Airedale Allergy Clinic here have done more for me than the NHS have in over 3 years.  The NHS don’t have the funding or support to investigate or locate cures for conditions like Fibromyalgia.  The US are way out front in this area as it’s about making money and a cure or even medications or treatments would rake in millions.  GPs are trained to give us meds and there aren’t any specialists only pain or arthritic specialists available in the UK, we are sent to these for more band aid treatments for our symptoms.  What we need is locating and dealing with the root cause!! 


Feel free to ask me any questions!  Or join my page here for more insights and research sharing.