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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3 weeks post op

Well what can I say? I feel pretty darn good! I know for those of you that may be reading this and potentially getting mentally prepared for major surgery yourself, you may be thinking really? Yes, really!! I have also managed to cut both meds; immediate release and prolonged release Oxy down by a lot!! Half on the prolonged and more than treble on the immediate release.

Much of recovering from surgery is your mindset!! Don’t be too hard on yourself, talk through issues with a friendly face, arrange to keep work informed, meditate every chance you get, even if it’s just deep breathing……….

The medication can however make you complacent and temp you as it has me, to do more than you should; when the meds wear off I hurt, ache πŸ˜– then I know I shouldn’t have done it. Like stretching over and shutting the windows above my head, or pushing or pulling something like a clothes basket or shaking blankets out to dry etc…..

Don’t do any exercise until after your 6 week check up and always check with the physio first. I couldn’t do much at my first physio appointment as I was still sore. My consultant doesn’t believe in neck collars as they restrict movement and can actually delay recovery, causing stiffness. Car journeys are painful and I’m not allowed to drive yet, I possibly should be okay from next week.

My neck feels much more sore and achy now I’ve cut down my meds, which is probably a good thing as it stops me doing too much. But it is particularly annoying at night time. I’ve been using ice packs and am now able to use heat on the rear of my neck, upper back and shoulders, but not on my wound.

My fibromyalgia is not too bad as the Oxycodone is keeping it under wraps, but I know that once I wean off it will return and as I still need my lower back fusing I will still have pain. The Osteoarthritis in my neck isn’t cured either, it will still also still cause me neck pain and stiffness.

I have found a great website with information on fitness post fusion with a blog of useful information. The reason I had this surgery was not only to reduce pain, but to allow me to restart exercising again. Yoga yes and I’m hoping to restart HIIT too, with either light weights or just bodyweight exercises. The website I mentioned is here.

Me using my PEMF machine to help fusing.

My Fitbit targets complete…..

I can not recommend a Fitbit Versa enough, my old Fitbit got wet and broke and I lost the other somewhere lol. This new one is waterproof and is more like a smart watch.

Two weeks post op

Car journeys are painful, every time the car jerks around it’s hell. Physio was rough; I cannot do much, so going back in 10 days. I’m starting to sit in a chair each day and I’m walking and doing neck exercises. I managed to go for a walk today with the dog; I just held the lead in my left hand. I was shattered when I returned and was snoozing all afternoon and slept for an hour.

My little doggy has really helped!! He has been really careful round my neck wound.

It’s important to be careful and not to overdo things with the side of your neck that’s been cut open.

Also keep the scar covered in the sun β˜€οΈ

Mentally I feel really good, I think some of that is down to the Oxy, everyone knows they make you feel great. I’m hoping that I can continue this without taking them……..but I know the pain is going to be tough to deal with once I’m off these. I tried cutting back yesterday and was hurting. I’ve cut down the immediate release by half today, still dosing at the same times just cut down by half dosage.

Been out a couple of days, to mums in a taxi and back, felt ill so had to come straight home, went to a gala near our house, let Dave hold the dog lead.

Took him for his first walk today since the operation and looking to increases this to twice a day shortly. Need to take it slow as still recovering.

Still have issues swallowing, still have to look down to swallow. Still having to use a straw, but it’s all good.

So far so good, it’s important to make a plan with goals for recovery, but don’t forget to reassess daily and listen to your body, not other people 😍

Ouch

Tried to shut the window and hurt my neck whoops. Chef closed the window as he heard me crying!! Don’t think I particularly hurt it, it’s just that the iv meds have worn off. I’m hurting like hell. It’s pulling, throbbing, can’t turn head to right, it’s aching……….

I can’t brush my teeth with my right arm, can’t push the bed trolley off my bed 😒. You get complacent with these things. ‘Oooooh it’s not that bad!! Then the meds wear off and me sitting in the chair, strolling around, brushing teeth etc. I’m now in a lot of pain’. Not much I can do as only so many meds you can take. I wish they had put on the morphine pump like they promised!!

Oh well πŸ˜” might have to get the music on my headphones and start meditating!! Can’t wait to get home and maybe ask the doctor for a pain patch!! Better than popping 12-16 pills a day; deffo don’t want to get up to 25 plus a day again……….. at least it’s constant relief πŸ‘

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.

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’–

I don’t want to take morphine

I injured my knee by stupidly taking out my armour due to it being very hot 27 degrees on my bike training day.  I had a fantastic lesson and was feeling very confident for my test which I had booked in about 10 days time.  I was on my last practise run and came off the big motorbike bashing the inside of my left knee on the bike.  My leg swelled and I rested it, my leg went black but I thought it would heal.

I went to work in London and walked a short distance to my hotel as the weather was beautiful.  Half way back my leg was very painful and I could barely walk.  I checked into the hotel and struggled up to my room.  I sat on the bed and my leg swelled, the knee looked like it had a bone sticking out on the inside.  6 hours in A&E in London is hell,iv Morphine and gas to get an X-ray, no break but a ligament injury.  I was released at 2.30am on crutches wearing a leg brace for the next month.

Anyway the point of this story is that I’ve had to stop exercising and the use of the crutches has resulted in my fibro returning back to the levels it was at about 15 months ago!

Tramadol and Oramorph are not touching the knee pain so the doctor has put me onto Morphine tablets, they have helped but I’m still in tramadol withdrawal which is horrendous.

I am not staying on Morphine and the last few months of my increasing painkiller consumption has made me realise they are no good long term.  I don’t just have fibromyalgia and the my meds are to reduce the pain I have from a number of conditions, I only developed fibro due to the back surgery I had.  I have degenerative disc disease, spondylolisthesis, endometriosis and pelvic congestion.  The pain I get from these conditions are made worse through having fibro.  Where do I go from here back onto Fentanyl patches?  No bloody way!!

First thing I’m going to do is speak to the doctor and ask them for medical help to get off these meds.  I’m going to revert back to the strategy I started last year; mindfulness yoga, meditation and very very slowly build lung up my exercise to interval training again plus I need to overhaul my diet.  Anyone with fibro knows how painful it is restarting exercising as the muscle aches are intense, nothing like anyone can imagine, it’s like having the flu but ten times worse!

Food is a very underestimated medicine.  Eat shit and feel shit!!  Fibro makes us very sensitive to food ingredients and if you read what you eat, some of the contents and unrecognisable.

Once I feel well enough to start exercising again I’ll post up what I’m doing and let you know how I get on with coming off meds again!!