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 because I felt I could now stick 2 fingers up at the people who said I was ‘just a bit stressed’!.
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 in 2010. I suspect that there is a little genetic pre-disposition as well.
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. Hopefully my blogs will point people at helpful options without spending all the money that I had to do.
Having appeared to manage my Fibro really well, so that although I was limited, it didn’t appear so to the outside world, a couple of really bad shocks and working too hard left me bed ridden for the summer of 2015.
From there it became obvious that there was something else going on, and at the end of 2015 I was clinically diagnosed with Lyme disease. So it was the Lyme disease that was causing my Fibromyalgia – in fact I now suspect that many Fibro/CFS/M.E sufferers will have Lyme or some kind of virus/infection.
Key Things You Need To Know About Fibro
- 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. Accidents, Chronic pain conditions, Thyroid disease, M.E, Chronic Fatigue syndrome, Adrenal Fatigue and of course Lyme Disease etc.
- The ‘Spoon Theory‘ is a must read to help you learn to pace.
- 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
- 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!
- This is about the fact that there are more nerve fibres in the blood vessels of our hands – suggesting we are born with a pre-disposition to Fibro.
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: You may never be able to exercise the way you did before, and you certainly don’t want to PUSH through the pain. However you must exercise, I recommend Pilates, Yoga, swimming and walking. But strengthening your muscles and improving your flexibility is key to reducing the pain.
- 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 – I get pain within a couple of hours of eating a sweet or biscuit.
- Stress Relieving/Relaxation: the NHS offered me some CBT and being ‘in the business’, I tried some other things too. What helped the most for me was Shamanic meditation.
- 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. I started to consider the Fibro as a ‘guide’ who was trying to teach me what I actually wanted to do, rather than being a people pleaser.
There seem to be a lot of Fibromyalgia groups, be careful, as it can be depressing and overwhelming.
- A fab list of people on twitter hosted by @May12th (awareness day)
- Fibromyalgia Association UK
- Fibromyalgia Network and their FB page.
- UK Fibromyalgia
- Fibromyalgia Support Net
- Fibro Daily – a great website with many stories of people with Fibromyalgia
One of the problems with Lyme is that by the time you realise you have it, you are probably also affected quite badly cognitively, which makes it tough to understand!
Things you need to know:
- Lyme is called the ‘great imitator’, there are suggestions that a large amount of illnesses are actually Lyme e.g. Fibro, M.E, M.S, Alzheimers, Parkinsons, ALS etc.
- It’s not really ‘just Lyme’, it actually comes with a pile of different combinations of Co-infections.
- It can come from more than just a tick bite.
- There are suggestions it can be passed to children and via sex. See John Caudwell’s information and story about his whole family being diagnosed.
- There are loads of politics, and it seems that the NHS barely recognises chronic lyme at this point, so you are unlikely to get medical treatment from your Dr as they will get into trouble. There is a list of reviews, that you will be able to get hold of, if you ask in Lyme groups.
- For a clinical diagnosis, fill out this questionnaire from Dr Horowitz.
- There are many reasons why the NHS tests will fail, and you may need to get tests done with Armin labs or others.
- There are private medical options in the UK, Europe and USA, but it’s going to cost you from £2-£60k. This will entail double anti-biotics for a couple of years, that have to be swapped and switched in order to catch the Lyme in it’s many different disguises. If any bugs are left at the end of the treatment, they will be able to just start all over again and your immune system may have been damaged by the antibiotics, so you need a Dr who will also take action to boost your immune system.
- Treatment is complex because the bugs can mutate and shift to avoid being killed off
- The other option is to rebuild your immune system so that it can fight off the bugs via herbal protocols or naturopathy.
- Killing off too many bugs at once can make you very ill, as they release a toxin when killed. This is called a Herxheimer reaction. Don’t confuse this with a ‘healing crisis’ when going to a holistic therapist and make sure that they understand that a ‘healing crisis’ can be dangerous for you.
Sources of information
- Lyme Disease Action
- Lyme Disease UK
- LymeCo charity run by John Caudwell’s organisation
- Lots of Facebook groups – but beware, they can be overloading, so try some and see what you think.
- Dr Horowitz’s book ‘How can I get better’, mainly antibiotics, loads of information about the different bugs, some complementary or herbal options.
- Armin Labs in germany for tests (I haven’t had these done)
- A YouTube playlist I’ve created, which I will keep adding to.
Here is a list of all my posts about Fibromyalgia and Lyme:
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