Fibro, CFS and me ....
Updated: Aug 28, 2020
Fibromyaligia, CFS and me…..
Fibromyalgia and chronic fatigue often come hand in hand. The cause of fibromyalgia is still being investigated but an estimated 3-6% of the worlds population are affected by it. 75-90% of these individuals who have fibromyalgia are women. It also occurs in men and children of all ethnic groups.
So, what is fibromyalgia ?
Fibromyalgia is a long term chronic condition. In the past there used to be a stigma around fibromyalgia and it was even questioned by professionals whether it was real. It is a condition that can be hard to understand and I was in denial for a while. There are many avenues you go through before being diagnosed as fibromyalgia mimics many other conditions. For this reason many people have been mis-diagnoised. There is no test for fibromyalgia, it is a journey of elimination.
Fibromyalgia, for me, causes problems with my sleep and cognitive ability (known as brain fog). I tend to have a lot of pain in my muscles and even the slightest touch to my skin causes a burning sensation. I have a high level of fatigue where at my most difficult times I would have to lay on my bed after a quick shower. Fibromyalgia, as I’m finding out, is difficult to treat. I have been through a range of therapies, medications and major lifestyle changes to help manage my symptoms. Fibromyalgia affects my energy levels and because of this I feel robbed of my social life.
I remember a doctor describing fibromyalgia to me and this is how he described it. Imagine your brain has a wall around it. Every time you walk, move or touch something the nerves send a pain message to your brain. This message is greeted by the wall who decides if this pain message needs to go to the brain. The wall will bounce back any message it feels are a part of everyday life. I don’t have this wall, I feel every pain message. My brain over reacts and misinterpret these signals.
Fibro fog is something that frightens me at times. It causes me to have short term memory lapses. I will often forget I have put something on the stove or I’ve left the tap running. I can also have trouble concentrating, stumble over my words and be less alert than normal. IBS is another symptom I suffer from.
How did I get fibromyalgia ?
Triggers, my trigger was stress. The latest research also suggests a possible genetic disposition. Stress has left long lasting effects on my body and can cause what is know as a fibromyalgia flare up if I’m not careful. When I have a flare up my nervous system really over reacts to normal pain signals, even wearing shoes can hurt.
Chronic Fatigue Syndrome/M.E
Like fibromyalgia, CFS/ME is a life long condition with a wide range of symptoms. Chronic fatigue can affect anyone even children but like fibromyalgia its more common in women and tends to develop between the ages of 20-40 years old. I was diagnosed in my early thirties.
There are so many symptoms linked to this chronic illness and I suffer from the following-
Muscle and joint pain
Problems with my thinking, memory and concentration. This has an impact on my speech, I often can’t find the right word to use or my speech can become muddled.
Feeling dizzy and sometimes sick.
Unfortunately too much exercise can make my symptoms worse, I have to be careful to find a balance but no two days are the same.
There is no test for CFS/ME and a diagnosis is based on your symptoms along with a blood and urine test to rule out any other cause. I remember talking with the doctor and explaining to him that on that particular day we were going into town. I explained that I didn’t feel anxious about going into town, I didn’t feel depressed, I literally had no energy to even stand for let alone walk. At this point I had already been diagnosed with fibromyalgia.
I had blood test to rule anything else out and after a few more consultations I received the diagnosis of CFS/ME.
Treating CFS/ME is not dissimilar to fibromyalgia. I had a few O.T sessions where we discussed coming to terms with my diagnosis alongside looking after myself. Self-care is really important and the hardest part for me was having to start putting myself first. Putting myself first took me a while and being able to accept help but there is a possibility I maybe a wheelchair user in the future if i am not careful.
There can be many triggers for CFS/ME from illness to problems with your immune system. My trigger was mental health, stress and emotional trauma from the journey I was on with my children.
Treatment & Self-care
If I’m going to be honest it took me a while to accept that I had fibromyalgia and CFS/ME, it was even harder to accept that they are a lifetime condition. Having two chronic illnesses has turned my life upside down. My social life is very restricted and I tend to avoid going out in the evening because the consequence would be a day in bed. I have to pace myself each day, pick what are my priorities and what can wait. On my worst days I haven’t even managed to get myself dressed and one occasion it took me over twenty minutes to put a pair of trousers on.
I practice mindfulness daily. I’ve learnt to live in the moment and not in the past or future. I've spent many a day worrying about forthcoming appointments, tests and results that I missed so much around me. I’ve also learnt to pick my battles with what is worth pursuing and what I have no control over. This really helps my stress levels as I’ve learnt that I can’t take on the world, I’m only human.
One of the hardest thing for me to do was to become a little selfish. I was the person always inviting family over for lunch or a cuppa, I was the one always helping people out and putting them before my own needs. To keep myself well I now put myself first, I have to make sure my needs are met first because if I don’t it could mean a painful relapse.
Medication, I’m slowly coming off my medication. I was previously on 60mg in the morning and 40mg at night in order to survive but I wasn’t surviving. The medication minimised my pain level but left me in a zombie like state which also resulted in a lot of weight gain. I made the decision in July to withdraw off my medication. I’m completely medication free at night and I’ve reduced myself from 60mg to 20mg every other day in the morning. Ive opted to try turmeric capsules as a form of natural pain relief. I feel I have my life back again, I’m more active and the weight is slowly coming off. I do have a level of pain return but it is very manageable.
Asking for and accepting help is something I’ve had to learn to gracefully do. My friends will tell you I still struggle with this but accepting help when offered is paramount to keeping well (and sane).
These chronic conditions are part of me but don’t define me. I can hide them quite well and only the closest to me will be able to tell when I’m having a bad day but don’t we all get those bad days ? I would be completely lost without my parents and close friends. Its very true when they say in your time of need you know who your real friends are and for these friends I’m truly thankful.