I have to be honest fatigue and anxiety are two of my most crippling symptoms at the moment. I have had a busy weekend with a motorbike lesson Saturday morning, loading up the campervan for camping and unloading on return then I went out on my motorbike 3 miles to watch a stunt show for 2 hours. Monday I felt great, Tuesday and Wednesday morning I have felt by far the worse I have ever felt in terms of fatigue.
I open my eyes and the stiffness and pain is extreme I feel it in every part of my body all over my skin, like I’m severely bruised, I cry lots more out of frustration I guess. I struggle out of bed and it takes me between 90-120 minutes of waiting for my tramadoland the caffeine from my coffee to kick in. I hate this feeling more than anything it’s horrible, getting into work is a massive struggle, today I have booked a days annual leave as I don’t even have the energy to get up. I’ve been laid in bed for 3 hours now!!
Fatigue is a difficult one it’s all about pacing and you have to keep a diary of activities to learn how much you can do and when to rest to reduce fatigue flare ups, fatigue never kicks in straight away it takes my body 48-72 hours for it to kick in but when it does it floors me. It’s a frustrating experience as I really had fun with my family this weekend and now I am paying the price.
Tips for controlling fatigue which I do not always follow hence why I am feeling ill today:-
- Learn pacing; this means stretching out activities over a longer period. I’ll give you an example I used to hoover the whole house in one go, now I have a lightweight rechargeable hoover and I do a room a night.
- Find easier ways to do things. All my shopping is done online and delivered, any other essentials are fetched by my daughter and husband
- Hire a cleaner or ask a family member or friend to help. I am a proper clean freak so clutter and dirt stress me out so I pay my daughter a wage to clean.
- Find ways to rest and this does not necessarily mean go to sleep, napping messes up your sleep health. It means finding a way to relax which could be watching tv, reading a book, doing some crafts, sitting in the sun, etc etc
- Meditate, get on the sofa and put on a YouTube and look up mindfulness meditation close your eyes, switch off your phone and follow the instructions.
- If you are feeling down then have a good cry and get it out your system then move on, it’s my favourite way of getting all the frustration out! Don’t let it ruin your day!
- Stay positive, focus on what you have and what you can do not what you can’t. I know this is hard but life is beautiful and when fatigue kicks in it’s overwhelming but we all have great things in our life even if it’s just the blue sky and sun today.
- Keep telling yourself it will pass because it always does. If needs be write it down ‘it will pass’ on an A4 sheet of paper and stick it on the wall to remind you.
- Increase your painkillers to help you get through the flare up but remember to reduce back down or you could end up on a slippery slope of ever increasing pain meds.
- Take a hot bath, not a shower and use magnesium flakes as they soak in your skin, at first you will itch and go redbut as your magnesium levels increase in your body this will stop.
- Eat healthier than ever before, poor diet choices will increase fatigue.
- Do not drink any alcohol as this will make you feel worse!! The alcohol turns to sugar and is toxic to your liver it will only prolong the fatigue.
- Get a massage it releases and removes toxins in the body and you will feel the benefit later on in the day.
- Go and sit in the sun and top up your vitamin D levels naturally.
- Remember your vitamins.
- Talk to someone about how you feel, sharing your experience helps. Why do you think I have my fibro page I need you more than you need me!!
Take a look at this site it’s got great tips and logs to help you plan living with fibro here
I find there are a few reasons our bodies hurt, for me I’ve put them in to 3 categories:-
- Psychological; for instance when I get stressed or I am under pressure, say from work, my brain then relays this into physical pain into my weak spots – my spine.
- Not using pacing; doing too many activities and not resting enough, again my brain warns me by creating physical pain, mostly into my weak spots, my spine or all over aches and pains in my muscles or skin pain by touch, allodynia.
- An injury, say from twisting my body or falling over. I find that with fibro I hurt a lot by just simple acts I performed before I had fibro which might never have caused any lasting pain.
It’s important to understand which of these we feel during a flare up. For example when I developed fibromyalgia and I didn’t know I had it and I was sure I had another serious problem with my back. The pain was actually my heightened sensitivity to pain and the fact I was trying to undertake lots of activities such as before I had back surgery. But when I learnt I had developed fibro I realised that my back did not need further investigation and that I had to learn to pace myself and I understood that my brain was increasing the pain signals through my nervous system instead of in a non fibro sufferer reducing the pain signals.
An example would be falling and hurting your ankle with a sprain that Fibromyalgia could increase the pain and symptoms such as touch and to feel more like a break. It took my sprained ankle 2 years to heal instead of a normal 3-9 months, even for a bad sprain!
Plus when you understand how pacing works, you can begin to understand your limits and reduce activities to a level that flare ups are rare and manageable. Keeping logs and diaries are a great way to help you learn about your condition, body and reduce the boom or bust scenarios. Please read here for more information.
The above shows you how boom or bust works and learning to pace activities will help to reduce or even eliminate these.
Now I’m not an expert, I came home yesterday in tears as I pushed myself too hard this week at work. I called my new manager and asked to come and see me this week as I needed to talk through my new role, his and my expectations and make it clear I will not risk my health for work. He agreed and seemed generally caring, which is a start.
I have tried to deal with fibromyalgia by popping pain pills but this treatment does not work. Eventually our brains get used to them and then you have to keep moving onto stronger medications. I weaned off 5 tablets and now find that I deal with fibro much better by just taking them during flare ups, as they seem to actually work and the rest of the time I use a holistic approach, I’ll give you a brief run down of done of the things I use:-
- Regular massage
- Magnesium flakes in my bath
- Mindfulness and meditation
- Pacing, spreading out activities with regular rest
- I use a hydraulic desk and spinal chair at work so I can work standing and sitting
- Heat, I have hot water bottles everywhere
- I take a varied amount of natural minerals and vitamins
- I use positive affirmations all the time, by saying out loud positive things such as I love mornings, I am going to have a great day today
- I use essential oils in a device click here
I am not sure where you are on your journey with fibromyalgia, but if you understand why you get flare ups and increased pain you can learn to reduce or remove these episodes.
Ha if I knew that I’d be a millionaire!! Now here’s the thing; Fibromyalgia causes insomnia and insomnia is one of many drivers in increasing fibromyalgia symptoms. I once read an article about some controlled tests that were performed on ‘healthy’ volunteers; they were kept awake or continuously awoken over several days and then tested how they felt mentally and physically whilst also performing cognitive tests, all of the volunteers showed symptoms of fibromyalgia, even down to increased levels of pain.
I go through periods of insomnia and I track my progress with a Fitbit. I actually only used to sleep 3-4 hours a day until I established healthier pre sleep activities and then I increased that average to 5-6 hours, I will go into that in more detail in a second. But then insomnia creeps back in and my average drops back down to 3-4 hours. Read more here
You’re probably wondering what I did differently to help me sleep? These are what I can remember:-
- Reduced caffeine intake to 1 cup a day (I’ve gone back to 2is this why I now cannot sleep?)
- I quit drinking alcohol
- I never eat within 3 hours of going to sleep
- I have a warm bath with magnesium flakes every night before bed
- I take a vitamin super supplement each night that includes melatonin, chamomile and 5htp amongst others
- I undertake some form of exercise 4/5 times a week either yoga or my power plate, yes even when I feel rubbish, mind over matter
- I practise meditation daily, especially at night (now this has most definitely slipped off my radar just before bed, I need to start doing it before bed again)
- I wear UV glasses when it gets dark to cut out the blue light from the tv and my phone
- I drink 2-3 litres of water a day but never 90 minutes before bed
- My bedroom is kept cool at around 19 degrees maximum
- My bedroom is completely dark with blackout curtains
- I wear earplugs for complete quiet
- I quit taking medication every night for insomnia
- Reduced consumption of chemicals by using organic
- Reduced consumption of non natural foods, do not underestimate the effects of a poor diet!!
Now around 3 weeks ago I started to feel ill like I had some kind of virus, it wasn’t a cold or flu (thankfully my immune system always fights these off plus I take a super supplements with 21 different vitamins in). Ever since I had this short lasting virus I have not slept for more than 2-4 hours a night and this has set off many fibromyalgia symptoms;
- Restless legs
- Nerve pain
- Muscle aches and stiffness (like having the flu coming on)
- Mood swings
- Pins and needles or burning on my skin all over
- Cognitive issues; memory and concentration issues
- And one of the worst; fatigue which I feel like I’ve got a constant hangover, coming down with flu type feeling
All this just because I cannot sleep!!
It’s a vicious circle as sleep deprivation increases symptoms of fibromyalgia and fibromyalgia causes insomnia. Due to having a near miss in my car I even asked my doctor for a couple of sleeping tablets, but they did not work 😂, I have to laugh.
So what should I do, give in, quit, start feeling sorry for myself? No, that won’t solve anything. I will tackle this problem like I do every other problem, by being practical. The solution does NOT lie in regular meds again, it lies within me. I just need to figure this out. I’m going to cut down my caffeine to one a day at 6.30am, stop watching tv half hour before bed and do some meditation/mindfulness yoga and when I cannot sleep I am going to start getting up and meditating rather than tossing and turning in bed all night.
The hardest thing about having insomnia is not being able to sleep in my own bed as I keep my husband awake 😦
If you read this and can relate don’t give up, don’t resort to meds as that’s just a bandaid, use them sparingly and take a long look at your daily activities and lifestyle as the key to removing insomnia will be in there somewhere.
I feel like I’ve lost 3 years of my life to being ill; gave up my job and chosen career path, stopped my hobbies, quit lifting weights, lots of friends lost, nights out cancelled, holidays abroad cancelled, hypnotherapy business closed.
It is easy to read that and get depressed but what’s the point, seriously what’s the point? I can’t change anything in the past, I can only shape the present. I’m not even worrying about the future either, I really don’t care that much as I know the plans I make in the present will shape my future, anything I cannot control I’m not even thinking about.
Whilst my husband was in bed New Years Eve with flu I made a pact with my body, no more will I bow down to fibromyalgia, I will learn to love this condition and I will do the things I want to do (within reason) and whilst I was thinking this I realised that there has been some positives in the last 3 years that I would never have been through if I hadn’t have developed this condition; learning to say no to others, putting myself first, letting go off toxic people, moving into a better local job and no more travelling 3/4 days a week. Practising mindfulness meditation and yoga. Ditching all my regular medications, eating healthier, quitting regular alcohol drinking, reconnecting with lost friends. Learning holistic therapies to use on myself. Recruiting a masseuse for fortnightly treatments. Finding my super fibromyalgia supplements from USA that have made me feel better than I’ve felt for years!
Our minds always focus on the negatives in a bad situation but if you look hard enough there’s always a positive.
This year is going to be amazing and I’m going to keep it healthy and make sure I give back my love to my family and friends the support I’ve needed over the past 3 1/2 years since my back operation.
It’s took a year of changes to every aspect of my life to get me here but I have proved that I can learn to love Fibromyalgia ❤️
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
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…………
This should come as no surprise to anyone right? I recently decided to come off several online support groups as I personally found that commiserating with others was actually making me feel worse and very negative about my personal situation of living with this condition. That’s my personal choice and I’m sure others have felt the same on many occasions.
I’m a very positive individual and this condition has really pushed my resilience to the maximum. I use a number of techniques to help me through the tough times that I’d like to share………..
Laughing is a great free medicine and even when I’m having a flare up I have a collection of comedians that I know when I put them on to watch I’ll end up crying with laughter, this releases endorphins and increases my pain threshold.
Mindfulness Meditation; closing my eyes and deep breathing in through my nose and out through my mouth whilst undertaking a full body scan down from my head to my feet, taking in all the feelings from my body, not judging just acknowledging them and continuing to move on. I do this very slowly over about 5-10 minutes.
Mindfulness walking, no phone nothing, just walking, deep breathing and taking in the air and enjoying that particular moment, taking in the sights and sounds. Clearing my mind.
Repeating positive affirmations in my mind, out loud and even on paper, for example; I love my body, I am feeling healthier every day, I am loved, I love life, I feel great etc oh and the most important one first thing in a morning is I am going to have a great day today.
Undertaking mindfulness yoga it’s so relaxing and really helps my stiffness and pain. Search on YouTube there are loads of free workouts 👍
When I’m feeling negative and stressed all of my symptoms feel worse so it is important that I keep positive and use a wide range of techniques. What do you do? Read more about research here