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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Grieving for your past life is healthy

It took me over a year to accept my failing health from when it started to get worse. I’d already had a back operation in 2014 and it took over 2 years to recover, I’m not fully recovered and still have pain issues. It was only after I started to develop fibro in the latter half of 2015 that I realised that my life would never be the same. I was working on a very stressful project and suffered some bullying at work, I wasn’t recovered from the fusion and I developed fibromyalgia. The condition got worse until I found myself on a massive amount of medications, mentally ill and feeling suicidal and questioning whether I could continue to work………

Since the diagnosis, which took another 6months and that is fast as it often takes an average of 3 years to get diagnosed. I’ve had to have a double cervical fusion ( fusions now) and laminectomy and now await a date to have the back of my neck bone removed…….it’s been very challenging and trying to hold down a full time job is exhausting and frustrating.

It took me a long time, well over a year to accept that my past life will never be a part of my present life. It is vital you allow yourself to grieve, it’s the same as losing a loved one, you’ll never feel any better than you do at that moment unless your grieve. It involves a lot of tears, heartache, honesty with your loved ones and work (off applicable).

You have to change your lifestyle, give up some of your activities, agree ongoing support and most importantly focus your priority of improving your mental health.

You cannot continue doing what you did before fibro you have to change, I know you don’t want to but it’s not possible if your symptoms are getting worse. Only when you get on top of the symptoms and reduce them, then maybe just maybe you might be able to get back to normal……… read someone else’s story about grieving for your past life here.

Don’t forget you will also have times when your symptoms improve and worsen; things like illness, injury, stress, operations, overdoing things, insomnia, bad choices in food and drink…..all of these things will affect your symptoms. Some of these things you can avoid and others you won’t, but you can always control how you react to them.

It’s been a while since I posted

It had been a while since I posted, I have been focusing hard on recovering from the recent double cervical fusion and getting back to work.

I am back at work starting an 8 week rehabilitation; I do 1 days worth of hours split over 5 days for 2 weeks, then increase a day a week and so on. I should be back in work full time by w/c 8/10/18.

It has been hard, I am fatigued, found it hard to concentrate at work and I still cannot get out of bed early. I have a nerve pain issue in my left arm which started a couple weeks ago. This is causing permanent pain with unbearable spasms. I have weakness in my fingers and hand too. I am back at the hospital next week to try to find out why this started 3 months after my latest surgery. This pain is multiple times worse than before the surgery. My consultant says this is NOT normal. It could be permanent nerve damage (but this would have started earlier), maybe something has migrated in my neck or one of my other discs above or below the double fusion is affecting my nerves (I bloody hope not!), or I’ve done something to flare it up (not that I know of).

Since the operation my fatigue has improved, in fact a range of my fibro symptoms seem to have improved. This is the conclusion from a study here…….The surgical treatment of cervical myelopathy due to spinal cord or caudal brainstem compression in patients carrying the diagnosis of fibromyalgia can result in a significant improvement in a wide array of symptoms. Minimizing those symptoms translates into a measurable improvement in quality of life. A detailed neurological examination should be incorporated into the evaluation of every patient considered to have fibromyalgia. The finding of cervical myelopathy warrants radiological investigation to exclude a treatable cause. More intriguing, in view of these results, is the possibility that, in some patients, cervical myelopathy may be the underlying cause of the fibromyalgia syndrome. Here is the full study here

My fatigue, cognitive issues, headaches, overall skin sensitivity (pain when being touched by anything including clothes), muscle aches and headaches have all reduced significantly.

This is amazing and I thought impossible, but studies have proved this can be the case.

Now I just need to find out what’s wrong with this sudden nerve pain and weakness in my left arm, hand and fingers and hope I don’t need revision surgery. Hopefully this is nothing nasty and will settle.

Feeling more hopeful

I’ve had a rough week as you’ll know from reading my last blog. It’s important not to let this get you down too much. Life is full of ups and downs isn’t it? Some of it brought on by my slipping into bad food routines, forgetting to meditate and introducing new routines.

  • You have to stick to a strict routine; get some decent fresh groceries delivered, use a hot pot to overcook food, put in boxes in the fridge to warm up.
  • Don’t over rely on meds, they can increase fatigue and even pain as your body gets used to them. Try alternatives such as cbd or cannabis oil (if you can get hold of it).
  • You must exercise, every day. This will reduce pain and stiffness. Break it into 5 minutes every hour if needs be. Go for a walk, have a stretch, whatever it takes, but no sitting all day……..
  • Take vitamins (high end, not cheap China made). Vitamin B12 injections and folic acid (oral) have been amazing for me so far.
  • Meditate, as often as you can. I like to use YouTube in the day, Deepa Chopra is great, I used this yesterday here. I also use the Buddhify app here. It is free.

I have actually got a good system going with little reminders in my phone to make sure I stick to my routines. If I slip I feel the repercussions, sometimes this happens within hours or days, but I can tell the difference in flare ups now; was it food, reducing meds, bad food, inactivity or overdoing things?

Tackling fibro and pain relief can only be done by establishing a good routine, finding out what makes you feel worse and stopping doing those things. Finding out what makes you feel better and continuing doing these things at the right intervals.

Every single day I wake up I hate myself and I hate my life. I practise gratitude; I lay in bed look out the window, put a heat blanket on my neck, drink coffee (filter made with coconut milk), think about positive things. What makes me smile 😊, it can be anything, it’s your life, don’t let people tell you what to be grateful about, it might be something material. I love my motorbike and I’m so proud I passed my 3 tests first time and have the bike of my dreams, I’ve not been able to ride it in 3 months πŸ˜‚πŸ˜‚. But I will mines the blue one ☝️.

My little doggy

He cuddles me, licks my tears, follows me everywhere and sleeps with me too.

I don’t have many close friends anymore, I cannot socialise much and I needed to keep healthy, so I have just a handful that I see. That’s enough for me, they know how I feel and what I go through every day.

My family are great, my mum, dad, daughter and husband, very helpful.

I love nature and the Earth, we have lots of pets, which cost a fortune in electric and I sometimes curse them when I’m fatigued but I love them:-

  • Dog
  • 3 cats
  • Stingray
  • Tropical fish
  • Marine fish
  • Green day geckos
  • Pond fish
  • Anemones

It’s like a zoo!!

Do what makes you feel good and don’t let other peoples negative opinions away from your routine.

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!!

Bathing is hard workplace

So washing in the shower is painful, washing my hair causes pain for 2/3 days!! So I thought right stuff it I’m having a bath and I’ll wash my hair in there!! Even worse pain than the shower……..

That’s it I’m growing dreads!

I don’t use anything on my hair but organic products so it never gets to the point it desperately needs washing, I only need to wash it once a week so since my surgery 5 weeks ago I have washed it 3 times and every single time it’s been excruciatingly painful for a few days afterwards…….

My head used to itch like crazy when I developed fibro. I decided to switch all my hair and beauty products to organic ones and I’ve never looked back, no more itching, my hair seems to be growing quicker and now I only have to wash it every 5 or so days!! It’s a good job really as washing my hair is very painful.

I’m struggling to wash my body as I feel really stiff!! I bought a long handled brush to help me. I find it easier to stand in the shower than trying to climb in and out of the bath. I prefer baths though as I can soak in magnesium flakes, I find the shower very tiring as I have to stand in it. So it is best to alternate the 2 atm. It’s always best to look on the bright side, bathing isn’t impossible but getting dressed is a challenge as sometimes I cannot raise my right arm far or reach my feet. πŸ˜‚πŸ˜‚πŸ˜‚

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.