my fibro journey

Decision made

I spent a lot of time thinking and after a really bad week (couldn’t walk by the end of most days) I decided to move in with mum.

I’m going to be positive. I can not only focus on learning to live with fibro, I can save money too and look at some alternative therapies.

Also, my meds are up to 200mg pregaballin, I’ve been referred for CBT and also joining a local fibro support group.

Once at mum’s I will look at the other elements in my life and see what needs to change.

Today I upper my meds, so slightly off my face so will sign off!

Be positive.
X

Diary - 17th August 2012

Day 2 of 100mg pregaballin and so far so good. The first night wasn’t much fun and the day after wasn’t much better. Mood swings, tears a s tantrums. But today was a much better day - bad headache and general tiredness, but I can handle that.

Here’s to hoping that tomorrow is even better and it doesn’t effect going back to work!

Decisions decisions

I’m currently trying to make a big decision - do I move back in with my mother?

I’m 33, I work in a senior role, I’m in a relationship, but I’m finding living alone very hard. I struggle to look after the flat - working 5 days a week totally wipes me out. And because I live in a studio I feel like I’m confined to a box in the evenings and at weekends - I’m finding that it’s causing me a lot of stress that I don’t need.

There are quite a few reasons why this would be a good idea; I just worry that people will think I’ve failed.

It’s moments like this that make me realise how much this condition has changed my life.

Diary - 15 August 2012

I’m really happy today, managed to get this Friday off so I can get three full days of settling in to my new dose of Pregabalin.

I’d tried this weekend, but I did it all wrong - started Saturday - and felt smashed for 24 hours! Currently on 50mg, moving on to 100mg a day.

I’ve been told that feeling off my face (stoned like feeling, can’t get up, losing balance) is all normal and normally settles after two weeks….

TWO WEEKS?! I have to work!! Well, lets hope these three days will get me over the more heavy side effects.

I’ll keep you posted on how it goes….!!

My typical work day

It’s important you understand what a normal day is like with fibro.

I consider myself to be very lucky as I can still get to work - there many who can’t.

Here is a diary of what my normal work day is like.

6.00am - Wake up. Need to spend next 30 minutes stretching my body and flexing my joints

6.30am - Get coffee on, need the caffeine to help me get through my medication hangover 

6.40am - Have a bath, hopefully the warm water will help my joints. Can’t have it too hot as it will feel like my skin is burning

7.00am - Do make up. This can take up to 30 minutes as I sometimes have the shakes

7.30am - Dry hair. Find this really difficult as I can’t hold the heavy hairdryer too high.

8.00am - Finally ready to get to work

8.40am - Arrive at work. Look back at the to-do list I made the previous day (this is essential, otherwise I don’t know what I’m going to do).

9.00am - Make my breakfast in the office (find it hard to face food when I wake).

10.30am - Need to get up and walk. Legs are twitching and my limbs ache

12.30pm - I’m ravenous, must have lunch (side effect of medication - hungry all the time!!)

1.00pm - Realise that I have an impending deadline - can feel a panic attack coming on. Even though I know everything is in order and on schedule, my body aches and I get shooting pains up my arm.

2.00pm - Clients are in, need to make them tea. Realise that my hands are too week and struggle to pick up the mugs. Have to ask colleague to help me.

2.30pm - It’s my turn to present in the meeting. I get confused and stumble my words - don’t think clients have noticed, try to get back on track.

3.00pm - Delivery of boxes have arrived - again I need to ask for help to move them.

4.00pm - My wrists are giving in and making a cracking noise, typing is becoming painful.

5.00pm - It’s time to plan the next day at work. Feel happy I’ve planned and ticked off things - it’s the only way I can get through work.

6.00pm - Work day is over, I now have to face the commute home (normally standing all the way).

6.45pm - I’m back and exhausted. I can’t bring myself to cook so I pick up something from the local takeaway.

7.00pm - I look at my flat - I really need to tidy but have no energy. My legs have frozen and my eyelids are drooping.

7.10pm - Get in PJs and climb in to bed. I make sure I have my dinner, meds and water with me.

7.30pm - Take my meds and get rested. My body is throbbing and I feel like I’m sinking in the bed.

9.00pm - Can feel my tablets kicking in; sleepy and dopey. 

10.00pm - I finally fall asleep.

2.00am - I wake up.

4.00am - I wake up.

6.00am - I get up for work.

Medication

Back again!

At the moment I am on 30mg of amitriptyline (anti-depressant), and 50mg of pregabalin (for epilepsy and neuropathic pain). 

When this all started I was put on amitriptyline and co-codamol, but I was having terrible side effects with the codeine.

The amitriptyline is meant to make me sleep - which it does. But as with most of these drugs, makes me very dozy. The pregabalin just makes me feel like I am super stoned, like nothing can make me move. 

The weekend just gone I upped my pregabalin dose, but it totally ruined my weekend. I couldn’t do anything at all, not even walk without wanting to fall over.

So this weekend I will try to up my dose again - I’ll keep you posted.

My symptoms

Everyone suffers from different symptoms, but we all suffer from the core issue of the  pain across (up-to) 18 points around the body. Below are my symptoms:

- Deep pain in my joints, mostly hips, knees, shoulders, wrists and jaw
- Deep pain in my thighs and across my chest
- Cracking and crunching in my wrists and ankles
- Heat sensitivity - hot water, even someone’s hot skin will make me feel like my skin is burning
- Insomnia
- Headaches
- Foggy head
- Difficulty in articulating myself
- IBS
- Heavy legs
- Restless legs
- Tingling in fingers
- Pain in ankles and difficulty walking 
- Lack of concentration
- Lightning bolt like headaches, shooting from one side of the head to the other
- Shakes
- Arm and leg spasms (these happen in my sleep, nearly punched boyfriend)
- Constantly tired

I’m sure I’ve missed something and I will add to the list when I remember!

I’ve had most conditions that could have these symptoms ruled out through blood tests and x-rays. All of these together, plus having nearly all 18 pressure points lead to the diagnosis of fibromyalgia.
 

How it all started….

Hi!

I hope that this will be useful to people who are trying to find out more about fibromyalgia.

I have created a page all about fibro, so I won’t bore you here, but what I will do is start at the beginning. 

I’m 33, female and work/live in central London. I’ve always been a hyper, bouncy person to be around. Very rarely am I tired or short for words to say.

Over a few months from Xmas last year I started to have one thing after another wrong with me, first asthma, then flu then gastric flu… I felt awful and could never truly recover. Then I then started a new job and noticed my right wrist was sore.

It progressively got worse over the next six weeks. I also started to notice my eyesight was deteriorating, I had bad insomnia and had problems gripping things (opening jars etc). Then one day I woke and couldn’t move; I was in immense pain. My boyfriend tried to hug me and even that hurt.

I saw the emergency doctor who sent me for lots of blood tests to rule other things out. I was signed off for a week. I was so upset - I had to have a week off in my new job, I couldn’t understand what was wrong with me and feared the worst.

My mum has fibro and I was starting to add all my symptoms together. I spoke to the doc and told them. At that point they treated me like it was in my head and that I should rule everything else out. I was terrified - I couldn’t even write properly for shakes and inability to grip the pen.

I was put on a drug called Amitriptyline, first at 10mg a day, and told to let that kick in. What I wasn’t told was that it doesn’t work straight away, so when I woke the next day off my face and in even more pain I flipped. I was rushed to A&E.

I listed all of my symptoms, and was in tears as I could see on the paper just how much my handwriting had changed. The doctor who saw me told me there was nothing wrong with me - but my fiolic acid levels were low. I was then told that the drug could take a couple of weeks to really kick in. So I spent the rest of the week trying to get over the drug’s side effects (mostly feeling drunk).

I returned to work a week later and was thrown deep in to work and had to run a conference. I was waking at 6am, taking an hour to get out of the bed, getting to work and once the day was done, going home and getting straight in to bed (eating in bed most of the time).

I was finally referred to a rheumatologist. I went with my mum (who’s had fibro for 17 years) and I did all the tests. My pressure points made me yelp when pressed. He sent me for X-rays to rule out rheumatoid arthritis, but even he said that he was sure it was fibro.

In the weeks running up to being diagnosed I spent most weekends stuck in bed unable to move. I was terrified what might happen to me work-wise. I would run on adrenaline during the working week, but my weekends were lost. I found that as time passed I found it hard and harder to walk. I was exhausted all the time.

I was also very teary; I was (and still am) missing my old life - tap dancing, zumba, going for long walks and all night partying…all of it had to stop immediately. 

While this was all going on I decided to see a nutritionist off the back of a friend telling me how her ME was cured though changing her diet. I was recommended to start a more paleo kind of diet - rid my body of the foods that ferment in my body and encourage bad bacteria. I was very good at the start, but then I went on holiday and it all went out of the window. It was clear that without a proper diagnosis I just couldn’t stick to anything. 

Soon the results were back and I went for another appointment - he diagnosed me as suffering from fribromyalgia. He suggested that I started taking a medicine called Pregabalin, also known as Lyrica. 

This combined with the Amitriptyline, could help.

I’m currently on 30mg of Amitriptyline and 50mg of Pregabalin a day. I was urged to go up to 100mg, which I tried, and found myself glued to the bed with an insane migraine. I won’t go on about the meds here as I want to spend some time on this later.

So right now I’m trying the meds and still working full time. My next few posts will cover my symptoms, work and personal life, diet, family history and meds.

x