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
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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.

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!!

One week post op

The last 48 hours have been hell. The pain in the right hand side of my body, neck, shoulders and head have been worse than the first fusion. The reasons for this is that the lower spine I could rest by just laying on the bed. When your neck has been cut open it hurts even to hold my head up, it hurts to swallow, indigestion hurts and I feel bruised inside. This is normal and I am under no illusions that the pain is going to get worse, as I try to undertake my physio exercises.

Ha ha I must have started this post the day before yesterday and then forgot, it was hurting me to text.

I am glad to say today that I feel much better. I think the Oxy is well and truly in my system now. I’m sleeping better than I have done in a long time. I’d never take this stuff for fibro, I can see that you could get in a cycle of constantly increasing your dosage. I can imagine wearing off it is like absolute hell, much worse than tramadol or morphine.

The little dog has been cuddling nonstop, under my sofa blanket and everything lol. He’s so cute and has kept me entertained whilst I am home alone.

Anyway so far so good. The first week has been hell, resting is important, no cleaning, keeping my right arm rested but also not just sitting on my backside all day long. This weekend I want to start walking, build up my strength.

Again I forgot to post this from earlier and now it’s 12.30 at night and I cannot sleep!!

I had pushed fibro to the back of my mind since the operation and today I’ve had a big reminder that it’s still there!! I ate some chocolate cake left over from my daughter which is full of gluten and sugar, the pain in my neck, shoulder, arms and hands is unbearable and I’m struggling to get comfortable. I know it’s my fibro as my lower back is hurting and I have this flu type feeling, a mini flare up. What an absolute tit, I have to stick to my plan, stay healthy. I have a sugar and gluten free cake I’ve been eating fine all week so I should have stuck that that. I’m sure my daughter will be telling me I told you so!! πŸ˜‚

I know some of you probably have not figured out just how much your diet impacts on fibro, I didn’t believe it myself until I went on the diagnostic diet. I could not believe the difference in how I felt once I’d figured out which food types made me illπŸ€’. Here are some good groups that CAN affect your condition and increase some symptoms here.

I know some of you will have tried ‘diets’ I fu@@ing hate that word! Diets don’t work, full-stop.

You have to change your eating and drinking habits and make it permanent. Trust me; cutting out a few foods is pointless if you are leaving several other ‘trigger’ foods in your meal planning. Also when you go onto a strict eating/drinking regime the flare ups are more severe but last hours not days/weeks; why? Because you figure out what you ate/drink to make you ill and stop, thus cutting off the intake of that trigger food/drink.

You are what you eat; eat shit and feel shit!! Eat more fresh food, cut out foods full of sugar; yes, even some fruits, mango makes me feel ill as it’s full of sugar.

I need to eat healthy even more right now, I’m trying to recover from one of the worst surgeries I’ve ever had and being silly is not going to help me. Tonight I will hardly sleep which means more pain tomorrow, no energy, negative thinking and more pain! All this for a piece of bloody cake!!

Changing pain

General anaesthetic (GA)is never good for the digestive system, if you know what I mean! I’ve doubled up on laxidos and last night had my favourite Indian takeaway, but to no avail πŸ˜‚.

I feel quite comfortable, the morphine is helping really well, I’ve doubled up on the tablets and the Oramorph liquid. I slept pretty well, feel very positive. The pain is changing, it hurts to breathe, I have bad indigestion, but this is normal after a GA.

Ha ha I wrote the above yesterday!! This is now, 3.30am on a Saturday morning. I am shattered, can’t sleep as never can on lots of meds, neck and back is uncomfortable! Might get up and chill out, motorbike racing is on tv soon πŸ‘. I could always have a mid-morning snooze! I keep forgetting that the op was only 3 days ago and not 3 weeks ago.

My body clock is all over the place, I need to relax, as this is why I am off work!! I’d love a massage but could not get comfy yet in any one position…….

Stuff it I’m going downstairs, might do some meditation, listen to some music and relax. Maybe have a posh coffee β˜•οΈ.

I am so god damn sore arghhhhhhhh, yet I am soooooo tired. My eyes are rolling whilst typing this πŸ˜‚πŸ˜‚. Speak soon all

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’–