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A Hidden Pain and Silent Fog: Fibromyalgia

Dangers of positive thinking

Good news, Bad news

 

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).

Back Pain

Photo from NHS website

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?

Fibro fog

Picture from Craig Martin Illustrations

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?

Time to stop for a whileI’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!

 

Update: I’ve set up a page to record all the useful information and people that I find in my fibromyalgia journey.  I’d love to hear more from fellow sufferers either here or on that page.

 

 

 

41 comments to A Hidden Pain and Silent Fog: Fibromyalgia

  • Hi Lisa,
    Aww honey I want to give you a big hug!
    I hadn’t noticed you any differently but wow what a lot is going on for you.

    Nothing you can’t handle and simply /gently transform I know you!

    I am so glad you’re committing to yourself first and that you will take the time you need.

    I recommend Kris Carrs work on anti-inflammatory eating, http://kriscarr.com/about/
    She’s a gem and I’ve been juicing since I met her recently noticing the difference in my energy levels.
    Her books CrazySexyKitchen and CrazySexyDiet may interest you.

    I’m looking forward to tea with you in the new year and in the meantime I’m only a tweet away!

    Hugs xxx

    • MummyWhisperer

      Thank you Grace, I think that you are right that there is a huge part of this that will be nutrition based – she looks like an amazing woman. I’ll definitely look up her books.

    • Grace I went to her website to check it out as I firmly believe in juicing and have a good one. LOVE her website and I recognise her. She is the lady who has been in some “Hungry 4 Change” videos – right? xx

  • Oh my darling. I know this condition well. Two friends suffer from it and I have also given Healing for it to clients. Both say that has helped. In my experience it’s emotional underneath anyhow. You have the experience and ability to get underneath that condition and heal it, but you’ll need medication and help to be able to do it, because it takes energy reserve. I am going back to practising in January and starting a new blog for it to help people like you who are suffering to do this sort of thing and perhaps we can tie something up? Please know I’ll do anything to help and, in the meanwhile, am glad you’re taking action, owning your stuff and doing what suits you. Am always here if you need any kind of intuitive support / direct help when you’re struggling. Will give you my phone number. XXX

    • MummyWhisperer

      Thank you Anya – a few people in ‘our line of work’ were a bit lacking in understanding that I need to address some of the symptoms first before literally having the energy to go further, so it’s lovely to hear from you that I’m right in going about it this way.
      Thank you lovely – I would love to meet up some time soon.

  • We shall not talk about it, we shall do it – coffee at yours or mine with love and a gentle hug in the meantime. xxx

  • Oh Lisa, I am so sorry you are having these problems. I haven’t been much around ither as my dad has been dieagnosed with brain tumor, had an operation and now waiting for chemo…looks like this is one of the worse autumns in our lives. Anyway, I hope you get better soon and wish you a speedy recovery xxx

    • MummyWhisperer

      You’re situation is much worse than mine @Mirka – how tough to be so far away and have him ill. Sending you and him lots of love & healing hugs xx

  • Oh Lisa, that all sounds terrible. No wonder you have been a little occupied of late. So much to deal with. I can do very little to help other than send healing thoughts and tell you to take all the time you need. Your health is so much more important than anything else.

  • Claire

    That sounds awful. I’m sorry to hear you’ve been in such pain. I wish you all the best, sending healing thoughts your way. Have fun with the meditating ;-) Have you thought about crystal heailng? xx

    • MummyWhisperer

      Funnily enough Claire my local crystal shop did send me some ideas on crystals and I have bought myself a rather lovely ring and goddess necklace to wear all the time. I don’t know if they help, but they are very lovely and I feel better for them!

  • I was diagnosed with M.E several years ago. For me it was good news as it meant I wasnt going mad and there actually was something wrong with me. Since then it has made me make several changes like no meat, no alcohol and going self employed. I have hopefully managed it enough for me to come off my medication too. Although M.E isnt Fibro I would say try and remain as positive as you can and listen to your body.

    • MummyWhisperer

      Yes I know what you mean especially with the Fibrofog. I agree, I think there are lots of similarities between ME and Fibromyalgia and I’m suspecing that sugar and alcohol are going to be banned from my life soon too, got lots of reading to do first.

  • Sorry to hear you have been unwell. Your blog was one of the first ones I started reading when I got into blogging and I’ve always enjoyed it and find it very inspiring! I think that you are right to take some time for yourself though as sometimes that is what your body needs. I hope that you are feeling much better soon!

    • MummyWhisperer

      Thank you lovely Hertfordshire mummy! Hope you are still enjoying blogging – I pop by every now and again. We must get you along to a blogging meetup soon.

  • Interested to know what medication they have put you on. I’m on Nortryptaline for nerve issues, it was a good move away from amitryptraline which was a brain fogger extraordinaire.

    • MummyWhisperer

      That’s really interesting @Kelloggsville. I’m on amytrypaline which I think has helped with the jaw pain, but I’m feeling awful today on the increased amount – like it will make me faint :o(

  • I am so sorry to hear this, Lisa. If I am ever down your way and have time to look you out, I’ll do my best to meet you for coffee. I have an NCT friend over your way.

  • I really believe an anti-candida diet may help. I only say that as I can’t help but notice you have mentioned IBS too. I haven’t heard of the things that Grace Kelly recommends in the very first comment but will certainly now be looking into them.
    Getting alkaline may help too, as pain always disappears when we are alkaline.
    You can do this! If anyone can YOU can. You’re always a shining light to us all.
    Take care and take time for YOU.
    Much love,
    Liska
    xx

    • MummyWhisperer

      Thank you lovely Liska, and you know what they say ‘whatever you see in others is because it is a reflection of you’ – right back atcha shining light!

  • CBT, amitriptylline (10mg), sleep, and acceptance. Give me a date to come and sympathise with you!! Soon! I’m a survivor – it never goes away but I’m totally happy with mine now!

    • MummyWhisperer

      Thank you @actuallymummy – they’ve put me on the list for CBT which I had many many years ago (it’s what got me interested in personal development in the first place). Not sure the Amytriptiline is agreeing with me, but it does seem to have helped the jaw pain. See you soon!

  • Jenny paulin

    My mum and my MIL (if I were married) both suffer with this condition so I understand what you have been through and what you will go through. I think you have been very sensible to make a plan of attack I hope you stick to it. (Hugs) x x

    • MummyWhisperer

      @Jenny do you find that yours and your MIL symptoms are really similar or different? It seems such a weird illness. Keep your eye on what I try out, just incase it might work for you two as well or give some clues for improving symptoms.

  • Hi Lisa, I haven’t ‘known’ you long online but just wanted to say thank you for all the love, support and wishes you have sent my way in that short time, you are obviously a very, very special and caring person, and I have been bowled over by how very supportive you are to so many, but I hope you can take this time to be kind to yourself, sending you lots of love and best wishes for taking things day by day and crossing things off your list :) xxx

    • MummyWhisperer

      Ahh thank you @Linda yes I will do my best – in fact this has been a big wake up call. I’ve learnt that it’s wise to help the people who ask for help and not go looking for people to help ;o) Remember I’m always here lovely when you have your dark times – just waiting to be asked.

  • So so so very pleased to hear that you’re putting yourself first without eliminating everything that you enjoy.
    Hope you’re ok and you know where I am if you want to let off a bit of steam xx

  • Hi Lisa, sorry to hear about your diagnosis but it must be a relief to finally know. I have a close friend who has fibromyalgia and she’s gotten it under control to the point that it doesn’t really affect her day to day. Sending hugs…

    • MummyWhisperer

      Ooh @Jen that is wonderful to hear – I keep trying to be positive, especially as I have so many years in the ‘healing’ business, but there are so many awful stories out there I do get a little down (especially in the mornings when it hurts most).

  • Oh my, I am so sorry to hear this Lisa! How dreadful. I am “glad” to hear that you at least were able to get to the bottom of what is wrong, but still, your life just sounds really hard right now. I think you are being amazing and strong and wonderful. And I think it is great that you are stepping back for more you and kids time. Big hugs to you. I hope you manage to control it at least a little and that the fog goes and you can live better again.

  • sorry to hear this Lisa. I hope you get all the pain under control & you start to feel like your old self again..big hugs to you x

    • MummyWhisperer

      hello gorgeous @crazykitchen, you’ll be glad to hear that I found a handbag (not quite the same) that I love and treated myself to it. Hope to see you at a blogging thing again soon and giggle all night long again!

  • hi lovely, am so sorry to read this, if i can help in even a small way let me know,

    sending love x

    • MummyWhisperer

      Oh @northernmum that’s so sweet of you, when I look at your little ones and their problems I remind myself how ‘easy’ I’ve got it – at least it’s me and not them. Good luck with your new career ventrure, I have absolutely NO DOUBT that you will succeed, because you are that kind of person!

  • sherry

    Hi,
    thank you for your post on Fibromyalgia.
    Like you, I was an overachiever, single mother,multitasking wonder until two rear end collisions stopped me in my tracks. After months of excruciating pain, and debilitating fatigue I wasn’t getting better.After endless tests, everything from depression and MS and early Alzheimer test were done with no conclusive evidence. After endless scans and tests I was diagnosed with Chronic pain disorder and Fibromyalgia. At the time I was going to University, to pursue my dream of being an arts Professor. I became more and more crippled until I finally had to give up.I was so exhausted and in so much pain that I couldn’t imagine how I could continue.It was devastating for me.I couldn’t walk more than a block or two at most and even holding the telephone was painful for more than a minute or two.

    Big Pharma to the rescue and endless rounds of medications were tried which further robbed me of my sense of self, on some I couldn’t even speak, let alone remember a simple phone number. The Doctors gave up, as they couldn’t help me either.

    I finally decided I would do what I could do.So I went to a Naturopath and was tested for everything that could shed light on the chronic inflammation.I discovered I had several food allergies including all wheat, corn,beef,shellfish,pineapple,asparagus.So I began to eliminate all the foods on the list and started to notice less swelling in my hands and feet.I spent thousands on massage acupuncture,new age everything, meditation, prayer, self talk, psychotherapy, EMDR…I mean, I did it all, with the same determination with which I have lived my life, and overcome many obstacles in the past, but I still had brutal pain and was in desperation even considering the Morphine patch.

    One day I met a woman who also had fibromyalgia as well.She told me I needed to try medical marijuana, that it had changed her life. At first I was reluctant, as I had never been a ‘drug’ user. After some consideration, I decided to ask my Doctor.He thought it was a brilliant idea for me.He told me several of his chronic pain patients had been able to throw away their pain medication.So I went to the Compassionate Society.I discovered that they offered cookies, medicinal oil as well as the kind you smoke.I have asthma so smoking was not an option for me.After trying the cookies, which are made with wheat I tried the oil.Miraculously for the first time in 8 years I was sleeping like a baby!I was waking refreshed and in no time, my pain went from an 8 out of 10 most days to maybe a 3 out of 10 most !!
    I couldn’t believe a medication that cost about $10.00 per month could give me back my life?Why weren’t they shouting it from the rooftops??The Cymbalta cost around $300.00 for a prescription and it didn’t work, neither did Gabapentin or Amytriptaline.

    All I take are 4 gel caps of oil, which is made from olive oil and cannibas before I go to bed.That’s it.If you are a Fibromyalgia or Chronic pain sufferer, I strongly recommend that you try this.There are no side affects other than a reduction in your pain and depression,heavenly sleep and a new lease on life.Of course there is the stigma that the uneducated have about this ancient herb that has been used for centuries medicinally.Yes people abuse it, they also routinely abuse opiates which are prescribed to millions daily, that shouldn’t mean that those who need it shouldn’t use it.
    All the best,
    Sherry

    • MummyWhisperer

      Wow Sherry that is a fascinating story, thank you so much for sharing so much of it. When I read on the forums about the american fibro people struggling to get pain medication I feel so much for their difficult situation. We pay here in the UK, but not as much.

      I’ve not used recreational drugs, but I have nothing against it and wouldn’t be against something so natural (As long as not smoked, as I gave up smoking at 26 and don’t want to reawaken that expensive problem!).

      I’ve done a quick google search and I don’t think that we are able to get hold of it in the UK. But it did say that if you can prove that you need it medically and are caught with the drug that you don’t get charged.

      Your story is a warning to me that I will listen to – the amitryptiline is working for me at the moment, it’s not a long term option.

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