Post holiday pain

It’s very easy to blame everything on fibro, but it’s important to remember that when we age, we will get more aches and pains, we will feel more fatigued. With fibro those aches and pains WILL feel more painful, as that is what the condition does. You can more here about his fibro impacts ageing.

My husband has a good way of keeping me in check; he explains that are we had been on a day out, he sometimes feels achy and tired, which makes me feel better as it’s natural (especially when not exercising) to feel stiff and sore a lot, your muscles aren’t getting used as they should be. He also explains that if I don’t move much I will still hurt, so I might as well go out and at least do something.

The reasons why I hurt post holiday can be attributed to the following:-

  • Poor food choices; eating sugary, rich food.
  • Overeating and gaining weight; I gained 10 pounds in 14 days; most of this will be water retention from the food.
  • Drinking alcohol including cocktails (sugary).
  • Doing more activities.
  • Sitting in uncomfortable chairs for too long a period.
  • The sun and heat.
  • The cabins were cleaned twice a day; so I suspect exposure to chemicals in an enclosed area.
  • Flying – jetlag
  • Dehydration.

I am sure there are others. It takes me about 5-7 days to recover. Plus as I’m in so much pain and my fatigue and sleep is poor, I am not moving around much; this affects my back and neck pain, increases muscle stiffness and fibro type muscle pain. You can read more about the effect on fibro with holidays here.

I will not becoming immobile it stop having holidays, I just need to be sensible.

Bear these things in mind; these are what I have found that flare up my fibro:-

  • Flying over time zones of more than 2 hours time difference.
  • Flying anywhere as cannot queue, painful to sit, food is poor in airport and on planes.
  • Too much heat and sun.
  • Poor food and drink choices
  • Dehydration
  • Exposure to chemicals (cleaning products are the worst).
  • Not pacing activities. Doing too much.
  • Not going to bed and waking up at set times, sleeping less hours.
  • Carrying luggage and bags.

I could go on………

Cruising for me is ideal, you don’t have to fly or you can just fly home. Everything you need is onboard, you don’t have to go out on the stops if you feel ill. I also shaved up for premium seats which were brilliant.

I cannot ever see me doing a package holiday again, it just makes me too ill afterwards. I also cannot stand the heat anymore, sunburn with fibro is excruciating, it’s like scolding your skin with boiling water and makes you feel like you have the flu……….

So what can you do when you return…….

  • Increase water intake
  • Eat fresh as much as possible
  • Reduce or ditch caffeine
  • No drinking alcohol.
  • Rest
  • Increase daily walks or exercise by 5 minutes each day, after 2nd day of total rest.
  • Short term use of painkillers I.e. 3 days!!
  • Re-establish set times for going to bed and waking up.
  • Slowly unpack luggage and ask for help with washing and ironing.

It’s been 5 days since I returned home; I lost a nights sleep on the flight, am in agony from sitting too long on the plane. My fibro is bad due to exhaustion from walkingtoo much, heat and sun, plus poor choices in food and drinks. I am now back on a fresh diet, no alcohol, reduced caffeine intake. Rested for 4 days, now increasing movement. I am very positive as I know this will pass and it has been worth it to get the memories I now have. Fibro will not stop me from having a life, I just have to work with it and not against it. It will always be with me, my body needs a friend right now and I am going to look after it as much as I can.

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Going on holiday with fibromyalgia and spinal challenges

I used to go away twice a year prior to developing fibro, even with my back issues I still went away. Journeys are hell with fibro as this makes my back pain and stiffness worse.

One of the worst things is flying, especially long distance. The last time I did a long haul flight in 2015 it was awful. I was actually crying by the time we landed and spent most of the next 3/4 days in bed………

You might have to change your holiday routine, destinations, activities and duration. Try to cut out driving, you will cause yourself fatigue, muscle stiffness and pain for days to follow. Flying is extremely challenging. Queuing, sitting in uncomfortable seating, waiting, over reliance on processed fast foods and alcohol intake. All this amplified your fibro symptoms, along with night time flights robbing you of much needed rest. I now burn in the sun very easily, within minutes and my skin swells up. My forehead swelled last year…….

It’s important to chose your holiday wisely, stick to fresh healthy food, lots of bottled water. DO NOT DRINK ALCOHOL IN THE DAY OR SUN AT ALL. In face the more you avoid it altogether the better you will feel. My skin is very very painful to touch on the torso when I’ve drank alcohol. You can read more about why our bodies hurt to touch after drinking here.

Top tips

  • Avoid long haul flights
  • Upgrade if you can afford it
  • Take extra medication
  • Stick to healthy natural foods, not processed.
  • Drink lots of water
  • Avoid alcohol
  • Take a heat/cold pad
  • Keep out the sun (be sensible)
  • Take a sun hat
  • Get someone else to drive if possible
  • Wear flat shoes
  • Keep walking to a minimum
  • Take time to rest
  • Try to go to bed and get up at the same time
  • Use organic sun cream
  • Take anti histamines
  • Use organic beauty products
  • Ask for mobility support at airports
  • Ask for easy access rooms in hotels
  • Allow time to rest before and after the holiday
  • Arrange for help packing, housework and shopping in your return
  • Book a holiday that is suitable for your needs
  • Don’t do activities that will exhaust you or cause you to flare up

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 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