Fibromyalgia – 12 Months On From Diagnosis

On 22 August 2013 my life changed forever.  I was diagnosed with Fibromyalgia by my GP.  She hadn’t wanted to give me such a diagnosis and had tried to prove it was anything but this.  I can’t begin to tell you how many blood tests I’d had.  It was no surprise to me, I’d already decided it had to be Fibromyalgia, I had many of the symptoms linked to the diagnosis and the pain I was experiencing was pretty horrific, it had been proved I didn’t have kidney stones and I’d already had my gallbladder and stones removed by surgery and that hadn’t stopped the pain, it had got much worse soon after that operation.

So what happens in life now?  How would this diagnosis change my life?  I was a busy working wife and mum with lots of great hobbies including Clandestine Cake Club and I also befriended for a local charity. I’d just started a new job and gone full time for the first time in 20 years!

Looking back the diagnosis hit me very hard mentally.  It was very raw and I cried a lot when I tried to talk about me and how I felt.  I did even more research finding out as much as I could.  The one good point I kept coming across was that Fibromyalgia isn’t degenerative and that I would have better days if I learned how to pace myself.  I still cry a lot but I think it’s a good release and isn’t always a negative act!

Physically my legs seemed to partly shut down.  I think that my head was trying to look after me.  I still felt able to go at my usual pace but I was quickly hit by pain and fatigue.  I think that by my legs slowing down it stopped me so that I wouldn’t hurt myself and become very ill with a shutdown.  I found I could hardly walk, when I did move I walked very slow.  I had to get a walking stick to give me some support and help to balance.  So from August to October it was a stiff learning curve.  I managed to keep up at work and tried to just push through despite my legs which constantly slowed me down.  In October 2013 my diagnosis was confirmed by a Rheumatologist at Chapel Allerton Hospital in Leeds.  He arranged for me to have a steroid injection in my bottom to try and get my legs working.  I’d told him my idea that my head had shut my legs down but he didn’t agree.

After my steroid injection I was quite ill for a few days. Once the injection kicked in I had my legs back.  Sounds good but it was in fact pretty scary, I could walk at a more normal speed but I couldn’t walk far, I’d spurt off for 25 metres then come to a standstill as fatigue kicked in!  I also started having really strong pains and muscle spasms in my legs.  This continued for around 8 weeks.  Faster legs, more fatigue and more pain.  My feet and toes would have muscle spasms that would last for up to an hour a time.  Once a muscle spasm went from my hip, I’d find that 5 minutes later my calf would go then sometimes my calf would be in spasm then my toes and top of my foot at the same time.  Nothing helped.  My medication at that time was the highest dose of co-codamol, naproxen and paracetamol.  This was when my GP changed me onto tramadol with the naproxen and paracetamol and that did make a difference.  I found that naproxen could stop the muscle spasms being so painful so I’d take them on a teatime as soon as the spasms started.  I worked out in time that I was best taking my tramadol as I went to bed rather than at teatime.

By Christmas I was starting to cope a bit better.  It had been a very hard four months but especially since October.  Finally the effects of the steroid injection had gone, the pains weren’t as constant in my legs and my legs were back to a normal speed which meant I didn’t have fatigue kicking in after walking 20-25 metres.  Usually this was my limit but occasionally with my walking stick I could walk a little bit further though usually that would cause fatigue the next day.  The furthest I’ve managed to walk in the last year has probably been just under quarter of a mile, I did suffer the next day but luckily it was over Christmas when I was on leave from work.

For Christmas we ran away! Mr C and I picked up the Curly One from Newcastle where he was at Uni and we rented a cottage in Northumbria.  We enjoyed time out, nice food, watching movies, walks on the beach and lots of down time.  This definitely helped to recharge my batteries!

Life carried on.  Bad days and slightly better days.  I continued to work full time and while at work I still felt like me.  At home I couldn’t do much, Mr C needed to cook, clean and sometimes help me get dressed!  I found the nights and mornings were the worst.  Nights involved pain and insomnia.  Some nights it was my pyjamas or quilt hurting my body.  Just the slightest touch can cause severe pain when you have Fibromyalgia.  My body laid on the bed caused pain.  I don’t like night time.  I used to love going to bed and would often say ‘oh me bed’ as I snuggled down, I haven’t felt like that now for a long time.  Bed = Pain.

I thought I was doing well, trying to pace myself day to day. Then in April 2014 I hit shut down.  Never a nice feeling.  I think part of it was physical and part emotional that caused this.  I slept for around ten days.  I felt ‘nothingness.’  Nothing mattered!  I didn’t feel suicidal or depressed, it’s different to that, I just felt nothing!   I laid life less in bed sometimes sleeping.  I had no energy.  I didn’t want to talk to anyone, I didn’t want to do anything.

I was off work for six weeks.  Two weeks of being quite ill then four weeks trying to get back to being me!  By that I mean trying to get up earlier every day, getting dressed every day and then eventually trying to do small tasks.  I knew I couldn’t just go back to work as I’d have risked shut down again!  I then had a phased return to work in June as I’d got some holiday booked and then I worked four days until mid August.

In July and early August 2014 I attended a NHS Expert Patient Programme in Fibromyalgia at the St George Centre in Leeds.  I wasn’t sure what to expect but I have learned a lot of new coping strategies and it’s confirmed that people with Fibromyalgia are usually over-achievers and that self management is the best way forward.  GP’s and consultants are needed to diagnose Fibromyalgia and give us the medications needed to try and get through every day but after that it really is up to me to try and manage with my diagnosis on a day to day basis!  The best thing about the NHS EPP course is the friends who I take away with me.  I met some amazing ladies and they understand, as much as my family and friends try and understand, no one can fully realise what is involved with the diagnosis of Fibromyalgia unless they too suffer themselves! We’ve got an official reunion booked in for early December but hopefully we’ll all be in touch by email, text and meeting in person for coffee etc.  To be given the gift of friends who have the same diagnosis is an amazing thing to take forward into life!

The main thing is learn to pace yourself and ask for help.  Talk to other people who have Fibromyalgia, look for groups who meet locally or via social media. Remember that everyone has different symptoms and that you won’t necessarily get them all!  Don’t sit and let life pass you by, you can still live an amazing life just remember to go a bit slower!  Don’t let anyone tell you not to work, it’s good to feel needed and to have social interaction.

Help can come from your gp, physiotherapist, rheumatologist in respect of medication.  If you’re still in pain ask what else is available.  For pain I take Tramadol, Amitryptiline, Naproxen and Paracetamol, this is all prescribed by my GP along with Colpermin that I take for IBS symptoms.  I take extra vitamins including slow release vitamin C and calcium with added vitamin D and magnesium.   My painkillers don’t get rid of all of the pain but they do make it more bearable so that I can continue to work and do nice things.

I’ve discovered Bowen Theapy, Langelotti Tri Therapy, EFT and Hypnotherapy.  Each of these has given me support and relief from my Fibromyalgia.  Nothing will cure me but if I can find a way of reducing my levels and being able to sleep better then it’s something that I think is of benefit to me and hopefully other Fibromyalgia sufferers.

We are all different so what works for me with medications and holistic therapies might not work for someone else!

One of the best things in my life is Clandestine Cake Club. Lynn Hill, the founder and my ‘cake lovelies’ (you know who you are!) help to keep my mind on cake rather than myself!  Being able to organise events and meet up with friends new and old over cake and a coffee or two is a brilliant idea!

Just getting out of bed is still a struggle every day, but within a couple of hours I feel almost human, I just have to get up earlier and let everything warm up and start moving in it’s own time, oh and take all my meds!

So what for my future?  I actually have no idea!  My aim is to continue to work full time, to be happy and healthy at work.  I’d like to start to travel a bit more again!  I need to remember that I can no longer go through life at whirlwind speed, I need to take my time, enjoy myself, not put too much pressure on myself and make sure I rest!

There is help and support out there for people with Fibromyalgia though  ou have to spend quite a lot of research time online to find it.

  • Walking sticks and wheelchairs don’t mean you’ve given in, it just means that sometimes you need support and other times you need to rest your legs.
  • Grab handles by exterior doors can help as can some in your bathroom.  Non slip mats are a huge help in the bath and shower.
  • Personal Independence Payment is the new Disability Living Allowance, you might be able to claim this if you have Fibromyalgia, ring the DWP to start a claim.  It can take up to 12 months for a decision.  There is a care and a mobility element to this benefit.
  • If you work you might be able to get support from Access to Work.
  • If you are not able to work you might be entitled to ESA (used to be incapacity benefit), you will need to see a DEA at your local job centre.
  • Blue Badge for parking, if you get standard mobility allowance on PIP you will be entitled to a Blue Badge, if not you can apply through your local council.
  • Free bus pass.  This will automatically be generated if you get a Blue Badge due to getting PIP.  You will still be able to apply if you are in receipt of other benefits.
  • If you enjoy going to the cinema, apply for a CEA card.  When you pay full price a friend/family member can go with you free of charge. It’s due to the reasonable adjustments of the cinema, in case of emergency your ‘carer’ is responsible for you www.ceacard.co.uk
  • Disabled railcard can save you money on all rail journeys.
  • There are lots of other things you might be able to get help with if you don’t work and have Fibromyalgia, if you’re not sure look online and ask for help and support from the DWP and your local council.
  • The CAB is a useful source of help and support.
  • If you have to pay for your prescriptions get a Pre Payment Card as it will save you money over the months.  You can pay annually or monthly.
  • If you live or travel in London you can get a disability element added to your Oyster card, you can also apply to be exempt from Congestion Charges.
  • One of the best resources is www.gov.uk and if you’re not sure look for things in a search engine such as www.google.co.uk
  • Bowen Therapy – I go to Kim Holmes at Yorkshire Body Clinic www.yorkshirebodyclinic.co.uk    www.bowen-therapy.co.uk
  • Langellotti Tri Therapy from The Muscle Whisperer – Sophia Kupse  www.themusclewhisperer.co.uk

I’m still me  I just have to look at life in a different way!

Mr C has been amazing, he’s had to do so much more and has even been seen pushing me in a wheelchair around stately homes and castles!  The Curly One has now Graduated from University and is back at home, I think he’ll find it hard some days realising I can’t do as much as I could but I am so lucky to have two amazing men in my life and they are a huge support with cleaning, gardening and cooking when I’m too tired after a busy day at work!

Shortly after diagnosis one of my friends told me to remember that ‘Steady wins the Race!’

 snail

Sharon x

22.08.2014

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