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!! πŸ˜‚

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 illπŸ€’. 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!!

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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…….,,

Can’t sleep pre surgery

I thought I’d cut the pain pills down to help with post surgery pain but, what an idiot!! I’ve been in agony for the past 3 days. I did not realise just how much pain in was in where I was fused before, my neck (current collapsed discs) and where I’d fractured my knee.

Now I’m not an idiot I know damn well if I didn’t have fibro, none of my pain would be this bad!! It amplifies all pain, even making non painful things painful, such as touch and even the wind blowing the hairs on your body. Yep this is true, during a flare up.

I am well into flare up territory due to high stress levels. Knowing just how that last fusion not only stopped from being in a wheelchair, but also caused me to develop fibro, which is just one of the most annoying conditions ever.

Anyway, I keep telling myself it’s not cancer, I won’t die, it’s not progressive, focus on the good not the bad.

Up in 5 1/2 hours, do best try to sleep!! Speak later all!

β€˜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.

Success at improving fibromyalgia symptoms

It has taken me a couple of years of blood, sweat and tears to find out what affects my fibromyalgia. We all have similar symptoms and similar causes of flare ups, but we are all different and a symptom you may have I may not and vice versa.

Flare ups are caused by a number of factors:-

  • Stress and anxiety
  • Insomnia
  • Illness
  • Surgery
  • Certain foods and drinks
  • Doing too much
  • Doing too little

I have introduced a few things to my life that have made a positive difference:-

  • Mindfulness meditation
  • Massage
  • Gentle exercise
  • Positive thinking and affirmations
  • Pacing my activities
  • Hot tub/hot baths
  • A healthier organic diet using 90/10 ratio; 10% being not healthy and organic πŸ˜‚
  • A strict bedtime routine
  • Stretching

I made big changes to my diet which has made a huge difference and affected the following symptoms by either reducing or eradicating them completely:-

  • Removing tingling and numbness
  • Reduction and almost an elimination of anxiety
  • Reduction in insomnia
  • Elimination of diarrhoea and nausea
  • Improved by ability to cope with stressful situations
  • Reduced my negative moods
  • Reduced my fatigue
  • Loss of 25 pounds in weight

In order to find out what food affected me I had to go onto what is called a diagnostic diet for 2 weeks. I basically lived on hunter and gatherer foods and drinks. No caffeine, alcohol, processed food etc and the only meat and fish I could eat is what you’d be able to kill when we were cavemen and women, certain vegetables (green and cauliflower, I added this in as I love it) and berries, kiwi and seeds. The foods I could eat are highlighted in pink on this picture.

then I extended this for another week and could eat as much a liked!!

I got migraines, headaches, cravings and felt awful, the consultant explained it was down to withdrawals. After the 5th day I started to feel much better, in fact I felt great, had more energy and started to sleep more than my usual 3 hours a night!

After 3 weeks I slowly, 1 day at a time, started to introduce one food item a day, I ate it for breakfast along with the diagnostic foods too, then again at lunchtime and kept a diary of any reactions plus any overnight weight gain. If I had a reaction it was very severe and usually was a headache, numbness, tingling, fatigue, diarrhoea, muscle pain or weakness, or a combination of the above. I’d also put weight on overnight which is not actual fat but my body reacting to the food; water retention. I then waited till the flare up passed and continued to reintroduce food one at a time. The list of foods I tried after the initial diagnostic diet are in the picture below. All apart from the ones I crossed out as I had already stopped eating these some years ago.

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ome foods I can eat rarely as these do not cause a major flare up of symptoms but minor ones, are the following:-

  • Diary
  • Wheat
  • Gluten
  • Low sugar items
  • Caffeine

Foods I cannot eat as they dramatically affect my symptoms the I had reduced or eradicated are the following:-

  • Alcohol
  • Sugar
  • Any processed foods
  • Anything containing E numbers, MSG or anything artificial
  • Eggs (due to the conditions their parents are raised according to my consultant. Poor living conditions, fed a poor diet and given hormones)
  • Chicken (same reason as above)

I don’t eat a lot of red meat but love turkey nom nom. I also don’t eat many ‘other’ white foods like pasta or rice, opting for the occasional wholewheat option or substitutes, occasionally eating white potatoes and switching to non MSG organic gravy. We make all our own sauces now not ones that are pre-made unless free from additives and chemicals.

I can however eat crisps with no additives yummy and very dark chocolate πŸ€—.

Milk upsets my stomach but I can get away with a little bit so I use a substitute, oat milk is lovely and I can use coconut and almond but not soy due to hormone issues (cysts and Endometriosis). I can drink coffee as long as it’s not Jarred and it’s freshly brewed β˜•οΈ.

Alcohol makes me very ill apart from the odd gin but I quit last December as I really cannot see the point, whether this lasts all year who knows πŸ˜‚. I cannot eat mango or bananas as they cause a mini flare as they contain too many natural sugars.

The worst reactions I get are from MSG and sugar. The fatigue and muscle pain are very extreme.

My consultant explained to me that once you go 3 weeks on a very bland diagnostic diet it’s like a reset to the system, so any foods you reintroduce create a much more severe reaction that I wouldn’t have spotted on my previous diet.

Am I an angel πŸ˜‡ nope. I do still fall off the wagon but at least I can pinpoint why and this keeps me positive.

The other things I changed was my bedtime routine. I wear uv glasses as move away from the tv at least half an hour before bed to help calm my nervous system, increase my natural melatonin (blue light reduction) and reduce overstimulation of my brain. I meditate for 10-20 minutes before bed using my headspace app and headphones. I have about 5 different subjects on the go at once πŸ‘ŒπŸ™. This new activity has helped improve my mental health and negative thinking and helped me remove unhelpful thoughts πŸ’­, I just tend to laugh at myself now. I do however allow myself the occasional cry 😭. As I find it helps clear my head and move on from whatever is bothering me at the time, there are no positives in bottling up negative feelings.

Immobility has worsened my morning stiffness and muscle aches and increased my fatigue so much I struggle to walk more than 20 metres or use the stairs in my house! You need to find the right gentle exercise and persevere. I used to be super fit and have muscles pre fibromyalgia, it took me years to accept that I can never train like that anymore. But it doesn’t matter as health has to come first. I find doing gentle interval training on my power plate works wonders for me. Yes I hurt a few days after, but I am going to hurt anyway πŸ˜‚ might as well be hurting from doing something than doing nothing. Find out what works for you; walking, swimming, yoga, stretching, Pilates, biking, whatever, just don’t make the same mistake I have and stop moving. It’s better to ache from moving than hurting from not!!!!!!!!!

I started slow, just a few mins once a week and now I’m up to 5 mins 3 times a week and I will continue to increase this gradually. Everyone has to exercise to stay healthy, you will hurt so just slow it down.

Learning self hypnosis and NLP techniques is also important too, use positive language, behaviours and thoughts. I used to moan constantly but all it did was make myself feel worse. Now I focus on the positives, even on really bad days like today, I’ve been up all night with back pain but at least I’m still breathing and I have a 90 minute massage today and half day off work yay. Yes I’ll be struggling to walk tomorrow as the massage is painful the day after but it’s great for my stiff tired muscles and exercises them.

I know it’s hard and I know how you feel, you want to give up, but what is the alternative? Life is too precious so grab it by both hands, by the neck if you have to πŸ˜‚ and start making some changes to how you live; keep a food log, try the diagnostic diet and eat healthier, use a pacing diary so you know how much you can manage before fatigue kicks in (takes me about 48 hours to kick in) get moving, train you mind like you would your body. If you don’t change your life you will never feel any different!

Take care and ask any questions as I am completely open and honest, no one knows how you feel but someone with fibromyalgia. You can improve your symptoms even if it’s not your primary condition like me. If I can do it so can you πŸ‘πŸ’–