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.
This was some great advice I had from my acting manager and colleague at work.
I had a little cry at work as I had stopped taking the ‘pill’ that I went on to help my endometriosis and like any Fibromyalgia sufferer, anything I put into my body has much more dramatic side effects. I did not realise how much this tiny little pill had affected me until I agreed to stop taking it as my abdominal pain had reduced and I was suffering some side effects from its use.
I felt dreadful and very over emotional. You see it’s not just the physical symptoms that are tough to deal with but the effects this condition has on our mental health in my opinion is much more detrimental.
My colleague commented on how I spent much of my day rushing around, spending time in back to back meetings with little breathing room and I had in fact either skipped meals (very rare) or had them at my desk and no break away from my work, this was on a more regular basis. She pointed out that no one will thank me for working myself into being ill and it’s not something to put on my gravestone that I was a hard worker and that it is just a means to pay the mortgage, clearly a fibro flare was happening on a much regular basis. She was right, I knew it myself but I guess I needed to hear it from someone else.
It is very difficult trying to strike a balance between working in a competitive environment and striving to do a ‘good’ job where you are expected to be seen as a rising star and also saying ‘no’ so as not to affect your health. At work we are continually expected to do over and above our roles in order just to achieve a ‘good’ rating in our yearly review but this does often mean having to say ‘no’ to other things we may be expected to do. My diary is always very full and leaves little room to do anything else, to take on extra work on top of my day job and keep my hours to within a manageable level is a daily challenge and one I quite frankly am exhausted from.
I would recommend having regular 121s with your manager and explaining a few things to set and agree expectations. From April I will have a new manager and the first session I will be setting up with him is to talk over me, my health and agree expectations and set up much more regular 121s than the 3 a year the business requires. So here are my tips:-
- Explain what Fibromyalgia is, don’t drown your manager with symptoms but split the main areas into physical symptoms and psychological symptoms. Here are my main ones below that affect me in and out of work
- Insomnia, fatigue caused from sleeping an average of 4 hours sleep, 6 for when I take a sleeping tablet once every 4/5 days.
- Muscle stiffness and pain in my back, hips, neck and shoulders, worse in a morning.
- Increased pain sensitivity and painful trigger points.
- Nerve pain all over my body including extreme sensitivities to food, light, sound and heat causing numbness, burning, pins and needles and dizziness.
- Cognitive problems such as short and long term memory loss, concentration issues brain fog, inability to multi-task
- Anxiety, depression, confidence issues and increase in the ‘fight’ response due to nervous system responses to stimulus.
- IBS and digestive issues.
- Explain what you are doing at work and at home to alleviate your symptoms, mine being:-
- Non medicinal treatments such as massage, uv glasses, yoga and meditation
- Hired a cleaner and learnt to pace my activities in and out of work. Severely reduced activities outside of work to save my energy to be able to attend work.
- Plan in extra breaks at work, hydraulic desk and lighter tablet for travelling. Moved to a local role with less travel and a less stressful environment.
- Flex hours and work from home where necessary. Book leave if notice a fibro flare is starting.
- Do not be afraid to ask for help or say ‘no’, always put pacing and health management first no matter what.
- Work slower, keep notes. Don’t be afraid to ask people to clarify points and work expectations.
- Agree expectations between you both. What does your manager expect, need and want from you. What does ‘good’ look like? What do you expect, need and want from your line manager.
- Very important is to agree the ‘reasonable adjustments’ that you need to enable you to remain healthy and achieve your goals. For example if you struggle with travel, can the meeting be undertaken by video/phone conference. Is there specialist equipment you need? If you struggle with your cognitive behaviour then you might want to refrain from group presentations or being singled out when being asked questions in a public forum.
I hope you have found the above useful and if you have any questions/concerns then please do ask.
Read here for my hot tips on surviving work with this condition!!
I had a particularly rough day yesterday. I felt really negative and I seemed to slip into a dark hole. I wasn’t expecting it but I knew something was happening which is why I opted to work from home. It wasn’t just exhaustion!
Like an idiot I worked from my bed, it was not comfortable for long. I woke up this morning feeling like I’d been hit around the top half of my body with a baseball bat!! Next time I will sit at a desk and take more rests.
I had a very depressive day, I couldn’t bring myself to meditate and didn’t want to talk to anyone at all. I even went to sleep at 8.10PM on my own as my daughter was at her dads. I did manage 6 hours sleep in the 10 hours I was in bed. Yay.
It isn’t healthy shutting ourselves away or sitting hunched up in bed all day, we must keep mobile or the stiffness sets in and boy did I feel it today.
Working with this condition is by far the hardest thing I’ve ever had to do. The exhaustion, stiffness, aches and pains (my fusion still hurts), mental grogginess, anxiety and depression is tough. Giving up my dream job was hard, I was do good at it, but once this condition started to get worse I couldn’t do what was expected of me.
Do you all still work? What changes did you make to your working conditions?
Did you have to quit your job?
I won’t give up until I cannot get out of bed and I will not allow that to happen.
So, what did I do st work to improve my symptoms:-
- I was honest about my condition
- I work from home when I need to
- I book annual leave when I need a rest, I’ve learned from mindfulness and keeping diaries for pacing when I’m about to have a Fibro attack
- I am strict about working hours
- I will not skip lunch
- I drink a minimum of 3 litres of water a day
- I eat breakfast and lunch and I ensure I make my food as organic as possibly
- Don’t eat takeaways or food on the go from the canteen unless organic
- I do not drink any flavoured sweetened drinks
- I only drink one coffee a day
- I keep an action log
- I block out activities I need to do in my diary
- I have a hydraulic desk and specialist spinal chair
- I gave a lightweight laptop and a tablet for travelling
- I will not have meetings later than 3pm
- I try not to undertake back to back meetings I try to leave a 15 minute gap between meetings
- I have refused to travel to a meeting in London and insist on conference facilities until I feel stronger
- I registered for a disabled parking space
- I listen to a 10 minute mindfulness recording each lunch time
- I fetch a drink or go for a walk each hour to stretch my legs
Read some more useful tips here
Well I’m sat on the train on my way back from London. It’s a 2 hour train ride and a 15 minute bus journey to the 2 London offices. It’s only Tramadol that’s took the pain levels from 8/10 to a 6/10. My whole lower spine, upper back and shoulders (where I had my rucksack) right hip, groin and leg are hurting real bad. I also feel like I have flu as I have that achy feeling all over. I felt my stress levels increase as I sat in the train as I was in so much pain, I also felt the stress increase the pain in my back.
Mindfulness has taught me to concentrate on the ‘now’ I mean this will pass, just let the negative thoughts come and go and scan my body and surroundings and enjoy the moment.
I undertook 2 mindfulness sessions on my headspace app as it doesn’t need Internet access so dodgy train signals won’t disturb me and my stress levels have reduced. The Tramadol has took the edge off the pain and I’m enjoying writing this blog, looking at the sunshine and the fact my dad is collecting me in an hour with my daughter and hopefully my mum.
Tonight will consist of rest, heat and my daughter will warm up my food my husband has left me already cooked in the fridge as he is working away.
What this experience has taught me is that I am not yet strong enough to travel to London but 4 months ago I did not have the strength to even contemplate it.
So when you have a bad day remember how far you’ve come and let it guide you to where you’ll be in another 4 months.
There was a time when I was itching to work in a high pressured role and travel around the country meeting new people. I loved the buzz of working with people in Operations and supporting big changes at work. But now on my list of ‘what’s important’ my career is right at the very bottom. I do not have enough energy to even think about advancing or even remaining in my current role. It has been a real hard decision to step away from a job I love, I job I applied and successfully gained, jumping up 2 grades at work, but in the grand scheme of things it isn’t important. How many times have we put work before our health? It’s not possible anymore.
I’m excited about this new role, I have a chance to shape it into something special I hope I have the energy to do it. Right now I’m just coming out of a Fibro attack, but I know what caused it and I’m dealing with it. Plenty of rest. Mindfulness yoga, mindfulness and heat.
Oh and I’ve started watching the Sons of Anarchy again!! Ha ha
Charlie Hunnam, the natural Fibromyalgia treatment 😀
Boy I must have been fidgeting bad. I went to bed at 9.45 and my Fitbit didn’t even register I was in bed till after midnight. But I managed 4 hours sleep and that was with a zopiclone 7mg tablet, these things used to knock me out cold.
I woke up feeling like I had the worst hangover ever as usual and zopiclone don’t make you feel groggy they aren’t that type of sleeper!! I got up after talking myself into it 45 minutes later than planned at 6.45am and went to work.
I was supposed to be starting a new job today but the team are busy or on holiday so I was left to my own devices, I started to build my personal development review.
I felt awful, overtired, couldn’t think straight, hurt all over, particularly in my lower back and my skin feels like it has pins and needles all over, grrrrrr. I ended up taking 2 cocodamol which worked for about 3 hours oh and my hot water bottle. Why can I have a few hit water bottles and wrap them all around my body?
But I made it to 2pm, still 2.2 hours of a full day, still on shorter days…….
I feel awful now, I have no energy, pain all over, feel like I have flu and have pins and needles all over my body but I feel chilled and content. Contemplating a hot bath with magnesium salts lots of them!
Maybe just maybe I might eat that Blueberry muffin in the fridge 😂😂. But first my ankle and back physio exercises need doing and my mindfulness practise session 👌
Hopefully I can fit in a mindfulness yoga session after my bath for that brief moment of reduced pain 😇