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 😍

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 

Post Christmas Fibro Flare

I really don’t feel as bad as I expected to feel.  Obviously I’m not feeling like I could cope with a full day of ‘doing stuff’ either!!

Yes I am chronically exhausted and need to rest, my sleep is not great and my head doesn’t feel like it belongs to me.  I can’t control my body temperature and my IBS is terrible.  But I still don’t feel as ill as I thought I would.

I mean let’s be honest Christmas can be a nightmare for those of us with a chronic condition.  Overeating ‘bad’ food, drinking alcohol, having to go out and travel and spend days at a time at social events which all impact negatively on our nervous systems.  I mean the worse people get over Christmas is a hangover and maybe a couple of pounds of extra weight whereas someone with fibromyalgia we can end up with the mother of all flare ups, not being able to get dressed, go out or even cook for ourselves.  The intense nerve pain, digestive issues, depression, skin itching, insomnia, stiffness, headaches etc etc, the list goes on and can be so debilitating it can ensure we housebound for days, sometimes weeks.

It’s important to reflect on this; there is a reason why we feel like this:-

  • We have no paced our activities and just dived in head first, not wanting to let people down.
  • We have drank alcohol which is a very bad idea with this condition
  • We have not ate healthily (a Christmas dinner or 3 is not all healthy!)
  • We stayed up later and get up later which ruins our sleep routine
  • We have watched much more tv and used our phones more which has disrupted our production of the sleep chemical melatonin
  • We have travelled much more than normal which exhausts our bodies
  • Social occasions tire us out too!

It’s important to acknowledge why we are having a flare and then get back on our plan.  By now you should have worked out what that is right?

Ditch the non healthy food and treats, stop drinking booze, rest, go to bed and get up at your planned times, pop on those uv glasses once it gets dark and don’t forget your vitamins, 2-3 litres of water a day, meditate and exercise daily, you will soon recover and feel more like you.

I think the reason I don’t feel as bad as I thought I would and the flare is not as bad as I’ve had in the past is that my head is in a good place and I know this won’t last .  I’m enjoying the opportunity to rest, watch some films and eat healthy nutritious food whilst smiling about the best Christmas I’ve had since getting seriously ill 4 years ago.

Happy new year everyone 

What a year!!

I was just thinking to myself whilst sat on the train to London (only the second time I’ve made this trip in the last year) how far I’ve come.

It’s easy to sit here concentrating on the pain in my spine, my upset (not very sociable) sensitive digestive system or the fatigue but where is that going to get me?  I’d rather sit here looking out the window admiring the beauty of the world, the fact I’ve managed to keep hold of my employment and how I planned a year ago to move out of my very highly demanding role of spending 4 days a week in London (6 hours round trip).  To now successfully obtaining a local job at the same grade leading a team less than 2 miles from home.  I’ve weaned of all regular meds, found 2 fantastic super fibromyalgia supplements that work.  Altered my diet.  Found mindfulness meditation and yoga (I love these).

It’s easy to focus on what we can’t do but that just makes us more sad, the mind does not understand these are only passing thoughts, if we continue to focus on them we get sad, even depressed and guess what our physical symptoms get worse!!

If we focus on positivity, our brain, our mind soaks this up and everything becomes much better.  We feel happier, our pain reduces, some of even all of our symptoms improve.  I could barely work a year ago and this week I am back in work full time.  
I am by no means cured as there is no cure for Fibromyalgia but YOU CAN learn to live a happy healthy life!  It took me a good 6 months to figure out what I needed to do and another 6 months to change ALL aspects of my life, things that you may not be willing to change and I may first I found it hard but whenever temptation sets in I remember how these things make me feel and I say no and if people don’t like it then screw them.

Put yourself first always, you are no good to anyone, partner, kids, work colleagues if you’re ill, but get yourself well and everyone benefits.

I’ll share in more detail how I got myself well in coming weeks…………