Living With M.E & Fibromyalgia

Today, I am getting very personal about something that is not very well understood. It’s hard Living With M.E & Fibromyalgia
Something that has changed my life since first having it, the relapses and my last relapse which has left my life completely changed.

Gone are the days of being able to have fun, go out spur of the moment, watch a film in the cinema, go for a drink with friends, heck even having a brew with a loved one.

This is because I suffer from Myalgic Encephalomyelitis, also known as M.E.

Where It Started

It started when I was about 4, I had glandular fever I never recovered from.

Then at 11, I was stuck down with tonsillitis and ended up having an ambulance come for me because I was so ill.
Since then it got even worse.

I went through high school being tired all the time, several trips to the GP in the space of about 4 years never came up with anything, just the usual… try and sleep more, it’s hormones…

Along with tiredness, I always had a sore throat, aches and felt unwell on and off. Until a GP said it could be M.E. 

When I had my firstborn at 17, I suffered a really bad relapse and could barely walk, talk or do general daily things.
This got better after about 6 months, but I was still constantly exhausted.
I was in and out of jobs, having ‘good days’ and ‘bad days’

For the next 9 years, I was in and out of the doctors so much with a number of things, nothing ever relating to M.E in their eyes.
My Mum was worried so when I was 21 she googled my symptoms and that is where we heard about M.E again, so my Mum took me to the doctors, only to be told it was not M.E, it did not exist.
I was apparently depressed, put on anti-depressants that actually made me depressed.
So 3 months later, after feeling very suicidal… I stopped them.

I also have chronic back pain, I thought it was completely unrelated. I’ve managed this over the years with natural alternatives. One alternative is gummies for pain, they can help cope with the pain more and in some people, decrease the amount of pain they are in.

Many trips to the GP eventually led me to where I am now.

Many medications that did not work, make me feel better or anything.

I had my youngest in January this year (2014) the first few weeks I was so exhausted, I could barely lift my head off the pillow, as I had a newborn, I had to push past the pain and exhaustion and look after my darling boy.

I started going back to the GP where first I was prescribed 8/500mg co-codamol for my back pain.
This worked for a few weeks then I could feel the pain again.

On another trip to the GP and I was given Tramadol. Oh boy, were these evil!
They made my exhaustion so bad, I couldn’t walk.
I was so confused, I am anyway but these made me worse.

Booked in to see a different GP who decided it was a throat infection (Sore throats are a big symptom of M.E)
The month of antibiotics, nasal spray and there was no difference.

Rang GP again, back on cocodamol but 30/500 and naproxen.
No idea what was wrong with me.

Went in for a blood test to see if I had thyroid problems, came back absolutely fine.
All my hormones were good.

GP then decided I have M.E and sent off for a billion blood tests (I had 9 in space of a month)
Everything came back fine, apart from I had high ESR, meaning high levels of inflammation.

So I had to write down a list of everything I have going on and here it is for you to see:

Exhaustion – Some days so extreme, I struggle to get out of bed. Feels like I haven’t slept for a week
Back pain – Flairs up, some days have seen walking like John Wayne. Can be in so much agony, I am reduced to tears.
Tinnitus – Originally diagnosed with Ménière’s disease at 21
Headache – I have this every day, some days worse than others
Stiffness in the morning – Was originally blamed on my bed, new expensive mattress and several others… still the same problem
Joint aches – especially my knees, this feels more like when you have flu
Muscle spasms – My legs twitch especially after walking somewhere
Limited ability to walk far – Can only walk for 10 minutes then have to stop as the pain from the back is bad
Pains in legs and hips – Again, related to back pain – diagnosed with sciatica but seeing a physiotherapist for it
Blurred vision – If I don’t get 8 or more hours of sleep, I end up with blurred vision. I wear glasses so not an eyesight issue, they checked, it’s fine.
Sore throat – I get these most days, why? Apparently very common with M.E
Swollen glands – As above
Sensitive to light and noise – Tinny noises really hurt as does bright light
IBS – Mainly constipation but can change at the drop of a hat to diarrhoea. Stomach spasms and pain
Mood swings – Unknown as to why, been told it was depression, yet I don’t feel depressed.
Confusion, forgetfulness, mind blanks and feels like brain fog – Well says it all. I’m forgetful, clumsy and sit there sometimes as a zombie. Having a conversation longer than 5 minutes is hard.
Muscle aches – Just like flu. I get these most days.
Nightmares – Not good!

I have seemingly lost all my friends because I can no longer go out anymore without being in considerable pain or absolutely exhausted, I’m now a lonely shell of myself.
I do have friends that still message me and see if I am okay, but getting to meet them for coffee or something I find really hard.
With being so knackered, having to clean, cook and look after my family too… the thought of going toilet knackers me so getting ready and going out is hard work.

However, I have made fabulous friends online, through blogging, beauty groups and social networking.

A few do keep me going and I am so glad for their support, even a few are going through similar things.

I am sure there is more, but at the moment, this is all I can remember.

I have ‘bad days’ which means I need help from family, I have good days but this is not your average good day, believe me! My Mum for example, a good day for her is getting up feeling refreshed, full of energy and gets all her housework, shopping is done and still have loads of energy to spare.
Me..? Oh, I manage to wash dishes, do a bit of cooking, look after the little one and I’m so exhausted for the next couple of days.

My GP advised I need to exercise, until I explained I have tried and the next day I am in agony, so exhausted and feel rubbish.
He advised not to. Just try gentle exercise like walking up and downstairs (I have to anyway) and raising legs when lying down.

I did this… no difference made.

Back to the docs for me, the pain was unbearable. Was put on Nortriptyline also to help me sleep as I suffer from nightmares recently.

Did not help for the pain, but meant I slept through and wasn’t so exhausted in the morning.

Then back to GP again as still in so much pain. I was put on Gabapentin, which I had to slow up my dose every few days.
After 3 days, I started with an awful headache and nausea which lasted the whole 2 weeks I was on them, and 2 weeks after I stopped them.
I turned into a wreck, I was depressed, angry and completely lost my head whilst on them.
Straight off them and feeling better for it. Frustrating Living With M.E & Fibromyalgia

I am now back on 30/500mg Cocoadmol, 500mg Naproxen and 25mg Nortriptyline.

I have also had Fibromyalgia mentioned but have to go M.E clinic before they can refer me to someone else for that.

Still in pain but coping a lot better now someone believes me.

I have got my head around the fact I will never get better, there isn’t a cure and no tablet to help me whatsoever.
It’s learning to live with it being this severe,

A typical day for me is waking up exhausted, stiff and sore.
I get up some days and feed the little one, or my partner does this whilst I rest for a little while.
I clean up, make dinner for everyone, rest again.
Go on the pc, blog for a bit, look around at what people are doing.
Make tea, rest.
Bath, feed and put the little one to bed.
Rest.
Fall asleep and have nightmares, or keep waking through the night.
And repeat.

I have no energy to do much more, go out or see people.

I can’t even make it around a shop without being in pain, I just want to constantly sit down and rest.

I am just so exhausted! I hate Living With M.E & Fibromyalgia

I was referred to the M.E clinic in August and also a physiotherapist.
I have my physiotherapy appointment for October but still nothing from the M.E clinic as yet.
How long it will take to be seen… who knows.

So this is the start of my journey now to get the help I need, whether it works or not is another story.

As more things progress, I will update this post so you can all see how it can either be helped… or become a huge waste of time.

Who knows – let’s see!

If you want more information, here is a few websites that are so valuable.

M.E Association
Action for M.E

If you think you have this or already have this, waiting for a diagnosis or anything you think that I could help with… please use my contact me buttons, message me and let’s have a brew and a chat (Online of course) day or night, I am here!

Even comment with your story, I am doing this to make people more aware it is an invisible illness, but we suffer from it. So here I am Living With M.E & Fibromyalgia

*UPDATE*

So I have now been diagnosed with Fibromyalgia too, however, my GP stated he can do nothing to help, apart from giving me stronger painkillers.

No referrals to pain clinics, rheumatologists, nothing!

Feeling quite lost now and still awaiting my referral to come through for the M.E clinic, but of course, taking its sweet time.

Time to see a new GP!!

I now have terrible pains down my legs, especially in my right knee. Like electric shocks so of course, linked to sciatica and nothing helps.

Looking for products that will help with the aches and stiffness, I will update once I found them 😉