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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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.

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 ๐Ÿ˜– 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.

โ€˜Normalโ€™ people donโ€™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 ๐Ÿ˜‚
  • 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 ๐Ÿค—.

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 โ˜•๏ธ.

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 ๐Ÿ˜‚. 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 ๐Ÿ˜‡ 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 ๐Ÿ‘Œ๐Ÿ™. This new activity has helped improve my mental health and negative thinking and helped me remove unhelpful thoughts ๐Ÿ’ญ, I just tend to laugh at myself now. I do however allow myself the occasional cry ๐Ÿ˜ญ. 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 ๐Ÿ˜‚ 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 ๐Ÿ˜‚ 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 ๐Ÿ‘๐Ÿ’–

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!!

Fatigue and muscle weakness and pain getting worse

Sometimes it takes a while to realise that things are getting worse with your health.   I’ve been attending Download Festival now for 9 years and I noticed last year I was more tired and achy but this year was dreadful.  I only managed to walk into the arena once each day and I had to spend the rest of the time sat in the van.  I missed all the headliners.  The Disability camping was moved further away to a better site but it was a 50 minute round trip to the entrance on a hill.  I could not walk that far so when I went back to the camper I was done in.  Now I’ve always been able to walk around the festival but this year it was different.  I have took the decision next year not to go and I am going to start working on my fitness levels.  

I read an article about a woman that started doing intense interval training and it was by no means easy but she managed to reduce her fibro symptoms so much that she doesn’t feel that she has it anymore. I do believe this is possible and I can only imagine how ill she felt and how much blood, sweat and tears she shed.  Now obviously this is not an easy task but if one person can do it then it is possible and not impossible.  I used to do high intensity interval training even when my back was degenerating and it was only when I stopped training that my fibromyalgia symptoms started to come out.  I even trained after my fusion and it’s only when I started to hurt I slowed down training that I started to get more ill.  The less you move the worse it gets. 

Our bodies are not made to be immobile we were naturally born hunters always moving around, but as time goes on our lifestyles make us more unhealthy.  We have tv to watch, cars to move around, processed and fast food.  Drugs we can take to mask over health problems.

I am a real believer that food and exercise being the only medicines I need.  All medications have side effects and are not good for the mind or body.  I tried to come off anti depresssnts last year and use s more natural alternative and I became so ill after 3 months I went back into them.

Painkillers are not good for the body either and you get used to them so end up either on maximum dosage or on something stronger.

I have never suffered from such debilitating fatigue or muscle aches and weakness until this year and it’s getting worse.  Some days I can barely walk at all and I’m constantly having to rest after everything I do.  I have to plan all my activities to the finest detail so not to overload my nervous system.  I cannot stand loud music or bright lights and have to wear earplugs a lot, which is fine I have no problems with that.  I get sunburnt easier and my skin swells up so I bought some natural sun cream.  My scalp started to itch and I bought some special shampoo which reduced the itching.

The fatigue and muscle weakness is extreme.  I find myself doing less and less and from what I have noticed the fatigue, weakness and pain is getting worse.  It is a battle of the mind as our mind tells us to do less as we hurt, but it is the wrong decision.

The less you do the weaker the muscles get, but it is much more painful to exercise as muscle pain can be very extreme with fibromyalgia.  When I used to regularly work out I used to hurt from the gym but I liked it as I knew I was getting stronger.  But with fibro the pain is sometimes so bad after working out that it can make me cry and my whole body throbs and every attempt to move is excruciating.  In order to get stronger I have to keep pushing so the pain from working out will last weeks or even months.  You have to start slow, I have managed to do 3 ten minute workouts on the power plate this week.  Next week I am going to build up to 4.  I am also trying to walk every day and I have stopped using the lift at work and take the stairs.
Next year I am not doing the Download festival and I am hoping to get back into interval training.  I want to test out the theory of regular exercise reducing fibromyalgia.  Exercise can help reduce anxiety, depression, increase mental alertness, reduce insomnia, reduce muscle weakness and aches and pains.  Over time it can also help with fatigue.  In the short term it will get worse but what have I got to lose, I hurt anyway whether I move or not.  I have felt a dramatic worsening of physical symptoms from doing less exercise so my moving less to ease the symptoms have made it worse.  The only way to change what we have is to do something different so that it what I am going to do.  Here is some good tips of exercising with fibro here