At the end of 2012 after 9 months of thinking I had a bad back I was diagnosed with Fibromyalgia. It was a shock as it’s a more permanent problem than a bad back, but good news in that I now know what I’m working on.
I seemed to have it worse than a few people I know, but a hell of a lot better than others (read here for my symptoms).
It’s unclear what causes Fibro, but I suspect that for me it was a combination of many years of sleep problems (different from Fibro sleep problems) leaving me open to two lymph infections, added to a cancer scare and lot of stress after my daughter was born 3yrs ago. I suspect that there is a little genetic pre-disposition as well.
My plan is to document my story. I’m hoping to atleast improve my symptoms and learn to manage the illness. At best I would love to find a way to remove all my symptoms, but lets see how I do.
In the meantime I have already met loads of people struggling with the Fibromyalgia or a combination of Fibro and something else. It’s such a weird illness, that I wanted to share all their blogs, so that other suffers can find stories of people to help them with their challenges as well.
Key Things You Need To Know
One thing I’m sure of is that it is different for everyone, so there is NO ONE ANSWER.
But there are also similarities, which give clues about the routes to try out.
Fibro is always SECONDARY to something else e.g. Thyroid disease, M.E, Chronic Fatigue syndrome etc. If it appears like you don’t have a primary problem, then it is probably adrenal fatigue, which isn’t officially recognised by some in the medical profession.
What I’m concerned about is that with the recession, the only option for many people will be the Dr one, which means drugs, possibly if you are lucky some CBT (cognitive behavioural therapy) and encouragement to exercise. That’s why I’m going to document everything, in the hope that I save some people time and money.
I found this really in-depth, if slightly long article that which explains the role of the Thalamus gland in Fibromyalgia and a 1hr blogtalkradio show about the role of the amygdala and this great combination of posts from ChronicFatigue.com.
I’ve created this Fibromyalgia Pinterest board of the interesting posts that I liked the best. Check them out, they won’t all be relevant to you, but some will be, and it will save you some hours of googling!
The Areas You Will Need To Consider For Improvement
- Drugs: especially to improve sleep, and for some they help reduce the inflammation. I tried them to give me a bit of a break/rest, but long term I’m unconvinced.
- Sleep: Improving your sleep is a the priority, I’ve always been full of tips for surviving on little sleep and improving sleep. But as a priority I need my sleep to not just be improved, but brilliant.
- Exercise: I’ve always exercised, but less so since the pain arrived. How difficult it is to know that you have to move despite the fact that it hurts, because otherwise it will hurt more. But move too much and it will hurt worse. Finding the ones that work for me will be difficult, especially fitting it in with a busy life and 2 kids. Do not PUSH through the pain, however also do not STOP.
- Hydration: always important, and mine is pretty good, but I mustn’t take my eye off the ball.
- Nutrition & Supplementation: There is so much information, that it’s really confusing. I’m a big fan of healthy eating already and take supplements, but I would admit to having been a lover of sugar (i.e. biscuits) and that is poison to everyone, but worse for us.
- Stress Relieving/Relaxation: the NHS have offered me some CBT and being ‘in the business’, I’m trying some other things too. I’m also trying a different type of meditation, so we’ll see how that goes.
- Hormones: There is definitely a hormonal aspect to it, so hormones are worth looking at separately, even though nutrition and supplements may be the solution for them.
At the end of the day, the key seems to be to Know Myself and improve my Intuition about what will work for me, plus be willing to try something and fail.
Are we just more ‘sensitive’?
I’ve always prided myself on being a pretty together person. But maybe I’m not so together? Maybe my body, brain and spirit need a load more downtime than I thought?
I’ve come to understand that stress isn’t just emotional worries. My body feels stress or pressure when it eats stuff that isn’t good for it or that it doesn’t like. It feels overwhelmed in large groups of loud people. It doesn’t like being surrounded by mess. It doesn’t deal with being over-excited for too long either. But this has given me a clue – that I can calm my body by using all of my senses – sound (music), smell (love incense), sight (pretty stuff in my house, touch (baths, cuddles) and the sixth sense (i.e. listen to my intuition more).
A lovely blogger who was once a homeopath sent me this information when I was diagnosed, and of all the information I got it was the most useful (although big thanks to everyone who tried to help):
In both cases, the patients were very much the ’golden children’ in their family who actually found life and the sadness of life too painful. They were both incredibly smart and super sensitive; it’s as if their body pains were trying to make them occupy their bodies and be here; they needed to learn to nourish themselves, not other people’s expectations of themselves if that makes any sense.
Once I stopped fighting the pain, and focussed more on my body, I do think that I started to improve much more quickly.
There seem to be a lot of Fibromyalgia groups, I wonder why? As I plough my way through them, I’ll put them here with a description.
A fab list of people on twitter hosted by @May12th (awareness day)
Fibro Daily - a great website with many stories of people with Fibromyalgia
Here is a list of all my posts about Fibromyalgia:
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