It’s a fact; when you have fibromyalgia you will experience setbacks from time-to-time. Even if you have been managing your condition well for a while, a flare up can still occur and knock you flat on your face. It is a part of the condition and something that we need to accept can happen when we over-do things. It may seem unexpected but there is almost always a cause. Sometimes it will be glaringly obvious, such as eating food you know doesn’t agree with you, other times you might be left feeling clueless. I personally try not to over think it if I am unsure of the cause and instead focus on what I can do to make myself feel better. It is only natural to get upset about it and to feel frustrated and angry. Flare ups can be scary and sometimes leave you wondering if you will be stuck feeling this way. It can be hard to envision your health ever improving, especially if it drags on for weeks.
I have just experienced this first hand. I was doing so well for so long and had reached a point where I knew it was definitely possible to live well with fibromyalgia. I was feeling so strong that I made a return to work a couple of weeks ago. This was something that I previously worried would not be possible for me. I expected it to set me back a little bit initially but I was honestly not prepared for the reaction my body had. Returning to work knocked me for six. Pain, which had been so minimal, returned. Fatigue, which had also been manageable, floored me. Night sweats, chest pain, fibro fog, pins and needles and balance issues made an appearance. I had forgotten all about them for a while! I then started to stress about it, which made the situation even worse. After the initial upset, I managed to calm myself down and look at the situation rationally. Yes, I was feeling pretty terrible but I wasn’t as bad as I was the previous time this happened to me. I turned my focus towards getting myself better and I am pleased to say that after a week I am beginning to pick up again. This is a real positive as last time it took me weeks to see any improvement. I have learned that how you handle a flare up is incredibly important. Here, I want to share some advice with you on how to handle a set back:
This is the most important thing that you can do for yourself but it is often the most difficult (due to pressures that you place upon yourself). By nature, we want to push and battle on through, especially when we are working. While you may manage to do this from time-to-time, you are actually doing yourself no favours at all. Your symptoms may subside slightly but you will find that you don’t quite recover to the same level as before. A flare up is essentially your body’s way of saying it is not coping. If you keep on pushing, which is what I did for a long time, flares will occur more often and eventually your body will reach a point where it is in a constant flare. At this point your body is running on adrenaline and eventually this will lead to collapse. This is exactly what happened to me. Please take my advice; stop and rest. Allow your body the time it needs to recover when you experience a flare.
2. Listen to your body
As I mentioned, a flare up is your body’s way of saying it is not coping. You need to listen to your body and your intuition on what is right for you. The aim is to minimise and overcome your symptoms. If you are tired, rest; sleep as often as you need to. I personally find that I sleep for hours on end when I am in a flare. If you are in pain, use heat pads, go for a soak in the bath, meditate or do anything that you know helps you. Be guided by what your body wants and needs. I have only one exception to this: food. I used to be in the mindset that if you feel terrible then you should eat whatever you want as it will help you to feel better. What I have learned since then is that comfort foods only help your emotional side to feel better. They actually do the complete opposite for your body, which means your symptoms are exacerbated. When you are in a flare, you must view food differently. Certain foods, such as wheat, dairy and refined-sugar cause inflammation. When you are in a flare you are looking to reduce inflammation, not add to it. Be very careful about what you eat and choose foods that will nourish your body and help it to heal.
3. Remain calm and relaxed
Be vigilant about your breathing to ensure that you are breathing properly. If you are holding your breath or breathing rapidly then your pain will become worse. Meditate or take time out just to focus on your breathing. You want to keep yourself calm and relaxed to minimise stress. Stress should be considered the enemy as stress hormones wreak havoc in our bodies and make us feel so much worse. Try not to focus too much on your symptoms and distract yourself by doing activities you enjoy. For example, I will put on Disney films when I am in the early stages of a flare as I am not able to do much and struggle to concentrate but these are easy to watch, cheer me up and take my mind off things.
4. Accept it for what it is
Flare ups happen to us all. They should be viewed as a temporary setback. It is only natural to worry and question “is this what my life will be like from now on?” I have asked myself this exact question many times and even got to the point where I was ready to accept it. The problem is that stressing about your flare up will lead to an increase in cortisol and adrenaline levels in your body, making you feel a million times worse. You need to remain calm and try to not focus on your symptoms. Take on the attitude of “what will be will be” and trust that it can get better. Just look atmy story as an example. I know with certainty that I will be able to get back to that point again.
5. Embrace change
I am going to give you a bit of tough love here. If you are finding that you are constantly experiencing setbacks or feel as though you are in a constant flare then you need to change your life. The prospect of this is a scary one. If you are anything like me then it is something you will be in complete denial about and be unwilling to accept for a very long time. You will worry that change might not bring about any benefits. Pride will hold you back too as you don’t want to accept that you are no longer coping. When work is involved, it’s natural to be concerned about losing part of your identity or to feel like you would be giving up too much. I am not saying you have to give up work, I’m just saying that work might have to be different. I don’t have all the answers for you and I can’t tell you what you should do. Only you will know what’s right for you and you need to be guided by your intuition. All I can say with certainty is that is is possible to live well with this condition but to do that life needs to be at a slower pace. It’s up to you to decide as to whether that’s worth it or not.
WHAT IS FIBROMYALGIA?
Fibromyalgia is a chronic health condition characterised by widespread muscle pain, chronic fatigue and poor sleep. The pain can vary in location and intensity and is often described as stabbing, aching or burning. It affects all four quadrants of the body and many people feel like they “hurt all over”. In addition, people with fibromyalgia have ‘tender points’ in specific areas of the body. When these tender points are pressed it causes pain in someone with fibromyalgia, whereas a normal, healthy person would only feel pressure.
Tell Me More About the Pain
It is thought that the way the brain processes pain is different in people with fibromyalgia. Fibromyalgia sufferers become overly sensitive to pain and we find things painful that we really shouldn’t. For example, I find that touching my upper arms can be painful! The technical terms arehyperalgesia (being extremely sensitive to pain) and allodynia (feeling pain from something that shouldn’t be painful). In addition to being hypersensitive to pain, fibromyaglia sufferers can also be sensitive to noise, smells, chemicals, certain food and bright lights. I find I now have to wear yellow tinted glasses when driving in night time conditions, for example, because I cannot cope with the bright headlights from oncoming cars. These sensitivities can sometimes feel like a ‘sensory overload’ and can lead to flare ups of other fibromyalgia symptoms. Changes in the weather also interestingly can cause flare ups.
What is the Chronic Fatigue Like?
The fatigue can range from feeling tired to full on exhaustion similar to what you would experience if you were floored with the flu. I personally cannot remember the last time I felt full of energy or didn’t feel tired at some point during the day. At it’s worst I end up crashed on the sofa and can’t bring myself to do very much at all. It sucks big time! On a bad day even doing simple tasks can be draining or down right impossible. Pacing yourself is extremely important and if you over do it on a good day, you find yourself paying for this by feeling crappy and exhausted for days following it.
Poor Sleep Plays a Big Part
People with fibromyalgia generally do not sleep well and often do not get enough deep restorative sleep. So we go to bed tired and wake up damn tired too, which sucks. Insomnia can be a big problem and many people find it difficult to get to sleep but I personally don’t have that problem. I fall asleep easily but wake up a few times through the night. I’m only awake long enough to be able to see what time it is and I then drift off again. My sleep has certainly improved since having reflexology sessions and I have also found a difference through taking the supplement L-theanine. I used to be more restless through the night and I stopped dreaming too but this has improved and I can even have periods where I sleep really well. Despite all of this I still suffer from fatigue, just not as severe as it was previously, and wake up feeling tired.
Are There any Other Symptoms?
Unfortunately there is a whole list of them!
» Cognitive problems, often referred to as ‘Fibro Fog’. Fibromyalgia messes with your brain big time! Let’s see… inability to concentrate, forgetting things, confusion, difficulty learning new things or recalling information. And my personal bug bear- saying the wrong damn thing without even meaning to. This can be saying a random word you don’t mean to say, muddling up the letters in words so that you come out with jargon or putting the start/end of different words together and coming out with nonsense. Fibromyalgia can make the intelligent person feel embarrassed and like a bit of a twat at times!
» Headaches– anywhere from mild discomfort to a full blown migraine.
» Hot flushes and feeling cold to the core. Your body cannot regulate temperature properly. Hello to feeling like you are going through ‘the change’ only to be frozen and looking for your hot water bottle the next minute.
» Tinnitus– an annoying, persistent ringing in your ears.
» Restless leg syndrome– feeling like you want to chop your legs off because of horrible, unpleasant sensations in your legs.
» IBS type symptoms.
» Bladder issues. Some days I think my bladder just likes to mess with me. I urgently have to pee a zillion times when there really is no need!
» Itchiness and skin irritability.
» Feeling low… well wouldn’t you be at times if you had to contend with all of the above?
This All Sounds Horrible! What Causes it?
Fibromyalgia is scarily common. It is thought to affect 1 in 20 people worldwide. Despite this it is a condition that is not properly understood. Heck some doctors argue it does not even exist (bullshit to that!). It primarily affects woman (though men can also suffer from it too) and there may be a genetic predisposition towards developing fibromyalgia. It is believed to be triggered by a physical or emotional trauma but often the cause may be unexplained. In addition to what I mentioned above regarding the brain processing pain differently, people with fibromyalgia have been found to have lower than normal levels of certain hormones (serotonin, dopamine and noradrenaline). This may play a key role in the cause of fibromyalgia.