‘Normal’ people don’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.

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Processed food, poor food choices and fibro

I never expected foods to affect fibro as much as it does for me. We all know that fibro is all about how our nervous systems work. I like to think of it as a very sensitive short circuiting computer system. Our nervous system has its tentacles in everything in our bodies, whether it be physically or psychologically, read here for more in-depth details.

You already know that if you go on an alcohol and takeaway binge that you will feel tired and sluggish for a few days. With fibro it’s the same, only foods and drinks you never thought would affect you, will.

Diets don’t work with fibro either you must remove all potential food groups and stick to a basic diet of certain meats, all fish, green vegetables and seeds and berries plus no caffeine for 3 weeks. This is the purest basic paleo (caveman) diet there is.

You can only eat the pink foods above but as much as you want to for 3 weeks. For the first 3 days you feel absolutely dreadful as your body craves all the other stuff you have been eating and drinking. I had a bad migraine and had to take 2 days off work!! But then I felt fantastic!!

After 3 weeks you can try adding one food in a day for 2 meals; breakfast and lunch; if you feel well continue to eat it, if you gain weight the day after (water retention) don’t eat it again. If you feel ill; increased muscles pain or fatigue don’t eat it. If you only get a mild symptom that goes quickly then it’s an occasional food!!

These foods are what I started introducing first…….

The ones I crossed out I don’t eat anyway. The above foods have a high risk of you having a reaction.

I felt absolutely amazing on the diagnostic diet and lost 29 pounds in weight. But any food that causes a flare up, the reaction is so severe now it’s puts me in bed in agony, but it’s short lived as I don’t eat it again.

Foods I cannot eat without getting ill are:-

  • Anything containing large amounts of sugar
  • White rice or white pasta
  • Alcohol
  • White bread
  • Any processed foods
  • Eggs
  • Chicken unless it’s organic
  • Anything containing ‘E’ numbers
  • Anything containing gum
  • Anything containing MSG
  • High sugar fruit such as mango
  • No processed sauces, tins or jars

Foods I can eat rarely but never more than 2 days in a row:-

  • Anything containing potatoes
  • Indian takeaway
  • Brown bread
  • Brown rice or pasta
  • Nightshade foods
  • Crisps
  • Dark chocolate (above 85%)
  • Any diary
  • Plain vanilla ice cream

I can however eat any meat but not too much red, any fish, any vegetables and fruit that is not high in sugar. I can eat organic snacks such as fruit bars etc….. organic tins, jars and sauces.

I know some of you may think that you don’t have the energy to cook fresh all the time, but you have to get creative and overcook so you can save meals to warm up other nights, use a big slow cooker and let it cook itself. Or failing that get someone else to cook, my husband does all the cooking and when he’s away he over cooks foods and saves them into containers so I can warm them up to save my energy.

Symptoms that have reduced or in some instances disappeared:-

  • Fatigue
  • Gastrointestinal issues
  • Monthly pains
  • Moodiness
  • Headaches
  • Muscle pain
  • Fatigue
  • Itching
  • Rashes
  • Brain fog
  • Insomnia

Etc

If I eat something my body does not like some of the symptoms above get so severe and come on within an hour of eating it, is very severe but lasts a shorter time.

What I did not realise is that due to me eating foods and drinking alcohol constantly this is why I always felt ill, could only sleep 0-3 hours a night and could not stop having bad flare ups, they were increasing and becoming more severe.

This is why diets or just cutting out one or two foods don’t work, you have to give yourself 3 weeks on the bland diet to clear out your system and remove all toxins. Then take another month to add one food in a day, not several at once. It’s not easy but I have had a better result from changing my diet than any pill I’ve tried and believe me I have tried them all.

Why don’t you try it? What’s stopping you? If you don’t do something different you’ll never change your symptoms or the severity of your fibro. You need to find what works for you and stick with it.

Am I a saint? No bloody way I drank gin this weekend, first time in 4 months and ate 2 takeaways but food I know I can eat such as lamb and fish. Yes I feel fatigued and have muscle pain but it will go……..

Why does this work? Because we absorb food into our immune system, glands and nervous system through our intestinal wall it’s that simple. Bad food makes you feel shit! Good food reduces symptoms.. …. read here for more info and try it out.

Diagnostic diet part 2 and Fibromyalgia 

As promised, I would send you an honest update on how my diagnostic diet is going.  I started before I spoke to the consultant and completely ditched all processed food, so nothing came out of a packet.  I lost 7 lbs in 2 weeks and felt so much better; less fatigue and reduced muscle pain.  

I went into the diagnostic diet for 2 weeks to cut down my diet to a very basic bland hunter gatherer type.  This basically removes all potential foods that could cause a reaction with my nervous system.


You only eat the highlighted foods for the first 2 weeks.  You track your symptoms and at first you feel worse; giving up coffee gave me a migraine.  I lost 12 pounds in 2 weeks!!  

After the first 2 weeks my daily headaches disappeared, my fatigue was reduced, my muscle pain went away and the nerve sensation issues I had like tingling, itching, pain upon touching disappeared.  

I was just coming out of a flare up when I started the diagnostic diet and my sleep was terrible; 7 hours over 3 nights.  I asked for 5 days worth of sleeping tablets and usually they take my sleep from 3/4 hours to 4/5 but this time they worked great.

It took about a week to get over stopping the sleeping tablets (this is why I don’t like to take them)! Now I’m sleeping much better, deeper and longer 5/6.5 hours. 👍

Switching to fresh food only I lost a total of 1 stone and 7lbs in a month and never went hungry.

My moods are better, less extreme and my menstrual cycle was less severe.  I haven’t had digestive issues either.

The next phase of my diet is to slowly start bringing in the rest foods not highlighted on the photo above, one by one and track symptoms.

So far I’ve been able to eat asparagus, grapes, veal, tuna steak and tomatoes.  

I’m still not able to exercise until I’ve finished the next month as this could skew the symptom tracker.

I can’t wait to restart proper exercising as I’m so weak, getting out of breath walking up hill or up or down steps.  I couldn’t even keep up with my 67 year old dad!

It’s not easy as you have to have willpower and you have to track everything; symptoms and weight, which will start to increase if my nervous system reacts to it.

I have a comprehensive stool analysis kit to do and send off but I need to wait till I get paid as it’s £160 for the analysis; 3 collections and I have strict guidelines to follow including mixing with liquids, dealing and posting lol.  I have a list of other tests to do too that I have to pay for as the NHS has refused, simple blood tests.

I am willing to do anything to feel better and the Airedale Allergy Clinic here have done more for me than the NHS have in over 3 years.  The NHS don’t have the funding or support to investigate or locate cures for conditions like Fibromyalgia.  The US are way out front in this area as it’s about making money and a cure or even medications or treatments would rake in millions.  GPs are trained to give us meds and there aren’t any specialists only pain or arthritic specialists available in the UK, we are sent to these for more band aid treatments for our symptoms.  What we need is locating and dealing with the root cause!! 


Feel free to ask me any questions!  Or join my page here for more insights and research sharing.  

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!!

Trying to have a life and fibromyalgia gets in the way, sometimes

So I’m due at a 3 day festival this weekend.  I have a nice warm comfy camper to sleep in but the constant rain does cause havoc on my already fragile spine and fibromyalgia.  Last year was torrential rain and flooding for the whole weekend.  At this moment I don’t want to go I am so fatigued I hurt all over, even blinking hurts and writing this on my phone hurts.  I have 0 energy and today I spent my lunch break laid in the back of my camper in the car park at work just with my eyes closed resting.


The fatigue is crippling.  The constant rain is making my nervous system very over sensitive and I just want to curl up in bed for a couple of days.

I went to a gig at the weekend and I was having a great time watching a band I bought my husband tickets for last Christmas but I was overconfident and drank more than my upper limit of 3 beers and the 7 hour round trip has given me crippling fatigue, muscle and body aches and an awful headache.  I cannot make conversation and nothing is easing the pain.  It always takes 2 days to kick in.

I have to go to London for 2 days for work tomorrow and quite frankly I’m dreading it as I’m already feeling like I have the flu, I don’t it’s a flare up.

I need to focus my mind, think positive, it will pass.  I know I can do the festival I just need to do it on my terms.  Thankfully we have a couple of friends coming with us to keep my husband entertained so I can have plenty of rest.

No one knows how fatigue feels with fibro it’s like just starting off with flu and having the worst hangover ever and you also fell downstairs the day before so you feel bruised all over and it hurts to touch skin, I reckon that sums it up.  

It takes an hour to get in the bath that someone else to run for you then you have to rest after you’ve had a bath as your energy has gone 😂

So I’m going to get straight into bed and do some mindfulness and get focused.  Mind over matter.  I can get through London think of it as a mini break and the festival a holiday!! 

I can then moan some more next week and feel sorry for myself even more!

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 

The silly season and Fibromyalgia 

I wanted to share some of my tips for surviving Christmas with this condition.  In the sat I’ll be honest I’ve been a right miserable sod as I focused on what I couldn’t do not on what I could do or asked for help!!

If you choose to drink alcohol then don’t expect to have a healthy Christmas, I am going to be brutally honest, alcohol and fibro go together like chalk and cheese.  It’s seriously bad for you, your mind and your body, your already oversensitive nervous  system will make you pay, here’s what happens to me:-

  • Palpitations
  • Overheat or am freezing
  • Numbness in parts of my body
  • Pins and needles
  • Panic attacks
  • Confusion
  • Insomnia
  • Diarrhoea 
  • Indigestion
  • Pain under arms and on my upper stomach when touched 
  • Depression
  • Anxiety

I am sure they are more!!  I used to be able to drink shandy but in the past month I cannot.  It’s your choice but ask yourself why you do it if it makes you feel ill?  Peer pressure, don’t want to look a party pooper?  Personally I’d rather feel healthy.  Do your research on google 

Okay let’s go onto the second thing that affects fibromyalgia; food.  Many of you might not have made that connection but I have my keeping detailed food diarys, food affects our nervous systems in more extreme ways than a person without this condition as we have sensitive nervous systems.  Not only does it affect my nervous system but I now have an inflamed bowel that I am having an exploratory operation for next week, it really is not worth eating shit food or drinks!  Okay here’s some of the food that affects me in a negative way and I’ll give you a few symptoms of what it does to me:-

  • Red meat
  • Cows milk
  • Alcohol
  • Coffee
  • Sugar
  • Anything containing sugar; cereals, dessert, chocolate etc
  • Cheap takeaways, fast food such as McDonalds, KFC and Chinese takeaways
  • Too much chilli 🌶 
  • Fizzy drinks
  • White rice 
  • Pasta
  • White processed bread
  • Processed, packaged cheap food that contains chemicals
  • MSG (found in many foods; Chinese chemical that enhances the taste buds in humans)
  • Too much cheese

I am sure there is more!!

I am not a saint, I’ve slipped up this Christmas, wanting to join in with my colleagues and friends at work, who have been absolute stars ⭐️ I’ve eaten canteen Xmas dinner, been out for s meal and ate red meat and had 2 shandys on two occasions and boy have I been ill, not just with fibromyalgia but also my inflamed bowel has not reacted well to the ‘crap’ food.

I’ve had to take 2 tramadol each morning and I have gone hit more than 3 days and I’m afraid that my body is now needing it to feel normal.  It just goes to show how dependant our bodies get with these pills, the pain from fibromyalgia is extreme, I know that.  But I need to get my nutrition back on track and wean back off these stupid tablets.  One thing I won’t do no matter how ill I feel I will not take more than 2 a day!!

Do not let your condition get you down, it can be controlled, you have to stick with the plan!