I have put off writing about this condition for the longest time because I don't want it to seem that I am looking for sympathy, I'm not. Anyone who has Fibro is only looking for understanding of something they barely understand themselves.
I was diagnosed in late January 2014 after suffering with sharp stabbing pains in my left breast for about three or four months. Eventually fearing the worst I went to our Doctor who pushed and prodded and then after a lot of questions 'blithely' said "You have Fibromyalgia". He prescribed pain pills and that was that. Me being totally unaware and clueless what it was thought, hmm ok in a few days it will go away. Guess what I couldn't be more wrong and never in a million years considered it was going to be a lifelong condition. Obviously as the years have gone on, after absolutely tons of research and talking to Doctors and others I now have a much better idea of what I am dealing with.
FIBROMYALGIA can be described as a Rheumatic disorder that causes muscles tenderness, widespread pain and chronic fatigue, in a nutshell, let me say this though, it is a mighty big nutshell. There are over 200 different symptoms which can appear in Fibro. It involves the brain and nervous system and can impact virtually every part of your body, symptoms can come and go, get more or less intense, seemingly at random. In the past Doctors passed it off as 'It's all in your mind' because there is no cause / reason for a
particular symptom to appear at times, nowadays there is much research being done and a lot more understanding of the condition.
Often you will hear of someone saying they are having a 'flare' which mildly put means the pain and / or fatigue are much worse than usual and can be set off by any one of dozens of incidents. Travel, emotional stress, exercise, being unwell i.e., having the flu, overdoing things when you feel good one day can flatten you for a number of days afterwards. A light touch can feel like a punch, clothing /bras can cause your skin to become hypersensitive and unbelievably sore. Bright lights, loud noises all seem amplified. Itching is another 'doozy' - for no gly. Having said that the majority of medication I take is Vitamins. He discovered my Vitamin D, Vitamin B's, Magnesium and a couple of others were way off the scale and as a result I take very high doses of those particular ones. He also does an Inflammation blood test which shows what my inflammation levels are, these have a direct correlation to the pain / fatigue I may be experiencing. At my last test the inflammation levels were five times higher than any previous test. I have made major adjustments to my diet and lifestyle, all to the good in dealing with some of the ongoing, persistent symptoms eg. IBS, glucose levels etc. Basically each individual has to find an understanding, knowledgeable Doctor and what causes certain pain or flares and where possible work to eliminate those sources.
As I go along with this page I will share some of MY management tips as well as giving links to further information. Please note that what I share on this page is purely my experience and by no means a medical opinion.
Further reading
www.verywellhealth.com/how-can-I-explain-fibromyalgia-715807
www.prohealth.com/library/a-letter-for-people-who-ask-you-about-fibromyalgia-32936
FIBRO SPOON THEORY.
I am one of those people who tends to go full out until everything is 'done'. I can't do that anymore but keep forgetting in my quest to complete all that needs doing. For example a day out in town doing the
shopping and other household chores will leave me running on about 10% strength the following day/s and here's where I am getting it wrong, because of re charging, I battle to sit until that day's work is done and so it goes. Apologies for the rant, sometimes it helps getting perspective when you get to see it in writing. In Fibromyalgia circles they call it using up all your spoons which is an interesting theory. They work on the assumption that we all have for example ten spoons of energy per day and everything we do uses up spoons of energy, what will take a 'normal' person one spoon i.e. Getting out of bed and getting dressed, can take us five or even more spoons. We still only have ten per day so that means less spoons
required in order just to complete normal for asks that require many spoons. It is beyond frustrating
because it goes contrary to my nature and usually leaves me feeling guilty when I sit down, so this is the
balance/pacing part I have to work out. Some things just have to be done, others can be put off and it's trying to get the balance right, clearly I'm not very good at that at the moment. I'm a work in progress haha.
FIBRO BATH REMEDY.
One of the 'tricks' I've learnt (and have not done for ages) which helps with general body pain and aches is to take a 20 min HOT bath into which you add : one cup of Bicarbonate of Soda, a handful of Epsom Salts and 10 drops of Lavender Essential oil. This combo definitely eases some of the pain as well as being very relaxing.
FIBRO FATIGUE.
Definitely one of the nastier symptoms of Fibro. This week it was like a tsunami of exhaustion just rolled over me. We had been into the city on Monday and were running around for the entire day, I find tiredness is one of my day to day battles and generally I manage to pace myself fairly well. But by Monday evening I was incredibly sore and every movment felt like I was moving through wet cement. When Tuesday dawned the thought of actually getting up and dressed was almost too much to deal with. I got dressed and tidied up very slowly and then spent the rest of the day on my bed, even holding a book was hard work and made my arm muscles burn. As I am learning to be kinder to myself, I did not try
and do more than was absolutely necessary and spent Wednesday in the same way, at last yesterday I started feeling a little better and today I actually got things done. Woohooo.
There are different ways of explaining FIbro Fatigue becaus it is not anything like a 'normal' person feeling exhausted. One of the best descriptions I've seen is comparing it to the analogy of a mobile phone battery, that is never fully charged. No matter how long you sleep / leave the battery charging it never reaches 100%. The moment you wake up / unplug ththe phone and start your daily activities / start using different apps, each activity / app chews up battery power and before long you are empty, then you repeat the cycle. I have noticed that certain activities use a LOT more battery power than they should I.e. Taking a shower and washing my hair, drying / styling my hair, small and everyday things we take for granted. I suppose this is where pacing comes into effect and yet there are days when one can accomplish much more, Fibro really exemplifies the meaning of taking life one day at a time .
Definitely one of the nastier symptoms of Fibro. This week it was like a tsunami of exhaustion just rolled over me. We had been into the city on Monday and were running around for the entire day, I find tiredness is one of my day to day battles and generally I manage to pace myself fairly well. But by Monday evening I was incredibly sore and every movment felt like I was moving through wet cement. When Tuesday dawned the thought of actually getting up and dressed was almost too much to deal with. I got dressed and tidied up very slowly and then spent the rest of the day on my bed, even holding a book was hard work and made my arm muscles burn. As I am learning to be kinder to myself, I did not try
and do more than was absolutely necessary and spent Wednesday in the same way, at last yesterday I started feeling a little better and today I actually got things done. Woohooo.
There are different ways of explaining FIbro Fatigue becaus it is not anything like a 'normal' person feeling exhausted. One of the best descriptions I've seen is comparing it to the analogy of a mobile phone battery, that is never fully charged. No matter how long you sleep / leave the battery charging it never reaches 100%. The moment you wake up / unplug ththe phone and start your daily activities / start using different apps, each activity / app chews up battery power and before long you are empty, then you repeat the cycle. I have noticed that certain activities use a LOT more battery power than they should I.e. Taking a shower and washing my hair, drying / styling my hair, small and everyday things we take for granted. I suppose this is where pacing comes into effect and yet there are days when one can accomplish much more, Fibro really exemplifies the meaning of taking life one day at a time .
THE best explanation I've ever heard, and thank you Joe Reed.
https://m.youtube.com/watch?feature=youtu.be&v=mzkB0HW6U2M
https://m.youtube.com/watch?feature=youtu.be&v=mzkB0HW6U2M
An excellent watch on the many symptoms of Fibromyalgia.
https://youtu.be/ihEgDT084fM
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