I've been diagnosed with Fibromyalgia: Hidden Pain and a Silent Fog

I have some news.

It has good bits and not so good bits, but that’s life heh!

It explains why I’ve been a little quiet (but you may not have noticed).

It explains why I’ve been a bit flakey and unreliable (I hope you haven’t noticed).

It’s also about the next 6 months

What’s been going on?

I’ve been struggling with ‘back pain’ since January, which just seemed to get worse and worse. I’ve tried a very experienced Osteopath and her Physiotherapist, then an Acupuncturist.

I also started looking at potential emotional stressors, as my opinion is that there is always an emotional/mental aspect to an illness, as well as a nutritional/environmental/genetic/physical reason (I’m going to someone who does a form of behavioural kinesiology that I used to be a practitioner of).

But it got worse and worse, and then I realised that I had gone from just a general tired lethargy to being properly depressed, isolated, feeling hopeless and miserable, as the pain was excruciating.

So I went to the doctor. It took me a while because of the receptionists and ridiculous booking policy. But I got some anti-inflammatories, that helped to turn the pain levels down.

I was so frustrated with myself. 13 years ago when I had a lovely little Reiki practice, I used to be able to turn a bad back (one that needed surgery) around in under 3 months. I couldn’t believe that I couldn’t fix myself. Of course this didn’t help!

I was also beginning to worry that I didn’t have a bad back, because my Dad died after 6 months of a bad back from cancer.

Then I decided to try a Pilates studio who did a mixture of Pilates and Osteopathy called Osteolates, which at last seemed to make a dent in the pain. After I had to go back to the doctor for more pills, the Pilates guy had a talk with me and told me to go back and get more help.

The doctor listened and then said ‘have you heard of Fibromyalgia?’.

And so it is a few weeks later after some tests that I now understand, not just why my back hurts, but also why my tummy has been worse and I needed the probiotics and why I’ve gone from being quite organised, to being so flakey that I can look at my diary and STILL double book something.

What’s Fibromalgia?

It’s the nerves basically being over sensitive and feeling more pain. They aren’t sure what causes it.

For me it is pains down both arms, hips, legs, across my shoulders, right hand side of my back, left hand side of my neck, sometimes head, right hand side of my jaw, and a feeling of something trapped behind my left hand shoulder.

It’s really bad in the morning, and I HAVE to have a warm shower to get moving. It will ease off by mid-afternoon, but is awful in bed at night, so has disturbed my already disturbed sleep.

Others have it a loss less, and it’s more of a tingling or lack of sensation in hands and feet, which is scarily reminiscent of MS.

Some have it a lot more and can hardly work or move with it; I’m very lucky this is not me and I’m focussed on improving my symptoms, so that I don’t end up debilitated by it. (It’s not however a degenerative or terminal illness luckily).

I also have had a return of my old IBS symptoms and worse sleep (they don’t know if sleep is the cause or bad sleep happens because of Fibromalgia).

Worst of all is the fibre-fog which had me forgetting 2 appointments with a health visitor, and Curly Headed Boy one day telling me off for being so disorganised.

At first I was a bit shell shocked as it seems a much more complicated thing to tackle than just a bad back. I’m also not very keen on ‘labels’. But now I’m getting my head around it, I think that Im much better off knowing, as I can now make some changes. I’m really lucky my doctor was aware of it and open to it, because many aren’t.

So my plan?

I’m backing off work big time for the next 6 months:

Paid blog posts are too much effort if you do them properly, they also add to the list of ‘To dos’.
I’m still on facebook and twitter; but I’ll be around a lot less
I have an existing client who I will continue to support as she doesn’t need weekly help, but I wont take any more on.
I won’t be publishing the second edition of my book or the paperback.
I won’t be finishing my new book ‘Lose Weight the healthy way without diets or bootcamps‘.
This also takes the pressure off finding a nursery for Little Dimples (which has been disastrous).

I’m going to play more with the kids and have tea with mates more.

I’ll keep blogging once or twice a week because I love it and doing my monthly Lifestyle feature for Radio Verulam.

The doctor has just started me on some pills to give me better sleep and help with the pain. They are actually a mild-antidepressant when taken in bigger quantities, so I don’t think I want to stay on for too long. But a break and a chance for my body to recover seems like a good idea. Apparently it also confirms the diagnosis, if they work (which after one night I’m pretty sure they do).

The dentist has referred me to the hospital to see if they can help me with the jaw pain. Apparently my teeth are wonderful, which must be down to the little water-spray gadget I got from Britmums live, as I’ve always been rubbish at flossing!

I’ve improved enough to start going to the Pilates classes at the studio (rather than 1to1’s), so I’ll stick with that to keep my spine moving and get my core stronger. Non-pounding exercise is meant to help a lot, so I need to gradually add 3 more things per week.

I’m going to start ‘meditating‘ once a week, which is meant to be great for stress (which escalates the pain dramatically); but I’ve found a fun way, which I’ll tell you all about (it’s slightly wacky!).

I’m going to meet with a few other people who also have it to swap stories and ideas on how to tackle it.

I might look at hypnotherapy to improve my sleep as I had it once at 26 and it lasted brilliantly for 10yrs. I know loads about sleep improvement, because I’ve had so little for so long, but it would be easier to just sleep! We’ve also moved the beds around in the house and bought me a new bed to make it easier.

The doctor is going to put me down for some CBT (cognitive behavioural therapy) which is meant to help loads with dealing with the pain.

I have a huge belief in the power of nutrition, so at some point I’m going to have to face a big change in the way I eat; probably once some of the other bits and pieces are in place. I have been a big fan of the Food hospital on channel 4 and they definitely had both eating plans for improving neurological issues and also inflammation (which are the main symptoms).

I’ll keep up with the kinesiology to dig up any emotional/mental aspects, which I suspect are from a long time ago.

Sooooo …

I’m sorry if I’ve not always been very ‘present’ recently; it’s been because of the pain that I got bored of mentioning and the fog that has clouded me from the world.

If you need me I’m always here at the end of my blog/facebook/twitter and I love to help, so it will ‘help me to help you’ (hows about coming over for a cuppa instead?). So never feel bad about asking. However, I’m not going to look for people to help.

If I don’t get involved with your event, charity, project or other thingy, it’s not because I don’t love you, it’s just that I’m taking some time out for me.

I was a bit embarrassed that I’ve gotten myself into such a state, but it’s daft to worry about that right? At least some of you Mums out there will see what can happen when you keep trying to juggle all the balls, just because you’ve been able to in the past.

Luckily I never pretended I was perfect, and hopefully my blog posts about my improvement (the power of positive thinking and all that), will help other people.

If you know anyone with one of ‘those’ illnesses which are difficult to diagnose like Fibromalgia, M.E. or CFS (chronic fatigue syndrome), then you might want to point them in this direction for a while. I’d also love to hear of any blogs that you know.

Hopefully at the end of all this I’ll be a lot stronger and ready to take over the world with my books again!