Saturday, 18 May 2013

My Fibromyalgia Symptoms

Today's post I am going to go into depth about my symptoms and how Fibromyalgia really does affect me on a daily basis. Most people I know haven't heard of Fibromyalgia and those who have think you just have some pain here and there but nothing too bad. So I thought I'd explain the extent of my condition and hopefully others can relate as I know every single person with Fibromyalgia has different severity and different symptoms.

Be warned this is a very long blog post!

This is the best diagram I have found that explains all my symptoms:
(bearing in mind I am a girl, so some of these symptoms will only apply to females)

I will use a scale to show how much the symptom affects me using ticks ().
meaning not so much
meaning a lot

I am also going to explain other illnesses I have that are caused from Fibromyalgia:
Hyper-Mobility Syndrome
Chronic Fatigue Syndrome
Irritable Bowel Syndrome

Pain ✓ - I suffer with chronic widespread pain all over my body. There is not a day where I am not in pain in some part of my body. The pain is in my joints, muscles and ligaments. However Fibromyalgia does not cause damage to them or mean there is anything wrong with them, they just hurt. The best way to describe the pain is as if I've done a very vigorous workout and it's the aching/hurting pain you get the next day, however it never goes away. The pain moves around my body, so one day my knees may be the worst so I struggle to walk/stand but the next my arms might be the worst and picking things up or carrying will be difficult. So just because I can do something one day, doesn't mean I can the next.

Weight Gain  - It's only started to be a problem for me the last two years. I haven't changed my diet and I've been unable to exercise since I was 13 (I'm now 20) but my weight has changed a lot in the past two years. I do blame a lot of it on my body turning into a woman but I went from 8st to just over 10st in two years. As this is quite a lot in a short time for no real reason my doctor does seem to think it may be linked to my Fibromyalgia or my medication. I have to watch what I eat every single day as if I put anymore weight on I'll struggle to loose it as I can't exercise properly to burn it off.

Cold Symptoms  - This is one of the symptoms I struggle with the most as it affects me all day, every day. I always have the symptoms off a cold minus the runny nose and sneezing. Every day I have a fuzzy head, tickley/sore throat, aching/tingling all over my body and no energy at all. It makes everyday things so hard because it never goes away. At least colds actually go after a few days.

Sensitivity ✓ - I have a few sensitivities to things. The first one is a Chemical Sensitivity. I have an intolerance to alcohol. It causes food poisoning like symptoms after I have any amount and no I'm not hungover or a light weight (sick of them 'jokes'). If alcohol comes into contact with my skin it also causes redness and itching. I also have to be careful when taking certain medications as it can also cause me problems. I also suffer with Light and Sound Sensitivity. Light can cause the back of my eyes to ache and give me a headache. Even if it's not sunny I have to have my visor down in the car or sunglasses on.  I am very sensitive to sound, especially base or high pitched. It can give me an instant headache if too loud. 

Chronic Headaches  - I suffer with headaches on a daily basis, they range from minor to severe and quite often migraine. This is normally due to my other symptoms such as cold symptoms and light and sound sensitivity. 

Fatigue ✓ - As well as Fibromyalgia causes fatigue, I was also diagnosed with Chronic Fatigue Syndrome. This is just a very extreme case of fatigue. It is common for a lot of people to be diagnosed with this illness but for most normal people it is only temporary due to them being very busy or run down and will go away. However for me it is always there. Fatigue is also a very hard symptom to cope with. I wake up everyday feeling as though I've had no sleep and could do straight back to sleep for another 12 hours. I never wake up feeling refreshed or energized. However fatigue isn't just tiredness, it's a lack of energy. Some days I can't get out of bed or do the simplest tasks. It can make day-to-day life very difficult if I have lots to do. 

Cognitive Impairment ✓ - Cognitive impairment is a big symptom that no one really understands until you experience as it's very hard to explain. A common name for it is 'Fibro Fog' as it just feels like your head is full of fog. I struggle to concentrate and to think. Sometimes the easiest of questions are hard to answer if I can think straight. I have an awful memory and constantly forget things. It can also sometimes cause dizzy spells where I just have to sit down for 10 mins because I can't get my balance or go to feel faint. 

Anxiety and Depression ✓ - I wouldn't say this is a symptom of Fibromyalgia but it is caused from having Fibromyalgia. Being is constant pain and feeling chronically ill with no real help can be so upsetting. Especially as I've had it since I was 13 and all it's done it get worse from them. Myself and Doctors can't seen my condition getting better anytime soon which is a very daunting thought as I probably will have this condition for the rest of my life.

Muscular Problems ✓ - This comes back to the pain as my muscles is where I feel most of my pain. However as well as pain, my muscles also feel weak. I am so weak and struggle to carry or lift things. Some of it is down to my lack of exercise but a lot of it stems from the Fibromyalgia. I struggle to lift the easiest of things e.g. Kettle, Pans and even a handbag some days. I also suffer with muscle twitting, this could just be a big twitch every now and again which can sometimes be painful. Or they could be a spell of twitches where a particular muscle will sort of spasm and twitch constantly for a while which can leave my muscles so achey and sore.

Joints  - My joints don't affect me as much as my muscles. It's only really my main joints that can affect me e.g. knees, elbows and hips. Every now and again my hip can feel as if it's about to come out of place but this feeling doesn't last long. A common symptom of Fibromyalgia is morning stiffness in joints but luckily I don't really suffer with this as I also have a condition called Hyper-Mobility Syndrome which means my joints bend more than they should which contributes to my joint and ligament pain. This stops my joints from getting stiff but can often cause more pain. 

Urinary ✓ - I am very prone to Urinary Tract Infection's (UTI) and they can come at any time. My ticks would be a lot high for this if I hadn't started to get them under control. I have started drinking plenty of water and making sure I have a glass of water before bed. If I don't have a big wee in the morning I will get a UTI. Quite often they have also spread into my Bladder and Kidneys which is an awful infection.

Digestive System ✓ - I suffer with a lot of indigestion so I have to eat very slow and always have a packet of Rennies in my handbag. I also have nausea most days where I just feel queezy. It can be after food of because I'm hungry but I do quite often feel sick for no reason. I also have a condition called Irritable Bowel Syndrome which my Fibromyalgia causes. This causes chronic abdominal pain, discomfort, bloating, and alteration of bowel habits. And as horrible as it is, it does cause a lot of wind which can cause discomfort if it becomes trapped. 

Dysmenorrhea ✓ - This to me is just a very posh word used for very bad periods. I have rated it as a 3 for the pure fact it only happens once a month. Sorry men I know you probably don't want to be reading this but I told myself I'd be honest and say all the symptoms I suffer with from my Fibromyalgia (and hopefully other women can relate). I have suffered with very painful and heavy periods since I started. I used to have to have days off school due to the pain, so my doctor tried to regulate them with the Contraceptive Pill since I was 13/14. However my doctor now thinks that they are linked to my Fibromyalgia as period pains are the muscles inside a females reproductive system working. Fibromyalgia can cause women to have more painful periods because Fibromyalgia pain can affect all muscles including your reproductive system ones. I am dreading giving birth if this is the case. I asked my doctor for the implant as in most cases it stops periods all together, but he fears that for me it may do the opposite and make them irregular and more common. 

Chest Pain ✓ - Before I was diagnosed with Fibromyalgia I was rushed to hospital a couple of times with severe chest pains, to the point where I was nearly passing out and the pain would spread to my back, up my neck and down my arms. Which of course I used to go into panic mode and think I was having a heart attack or a stroke. I was diagnosed with Costochondritis which is severe chest pains. The pain occurs down the center of my chest and in between the ribs. I have this pain on a daily basis but as I know it's not dangerous I don't panic so much now. It causes me to have an irregular breathing pattern. For a normal person, when they breath in their chest will expand and when they breath out their chest will deflate. For me due to the pain in my chest and ribs, I pull my chest in when I breath in because taking a deep breath causes the chest pains to be worse. This means I don't take in enough oxygen and makes my breaths very short and often. I was given breathing exercises that I do at night before bed to try and help improve the length of my breaths and to make my chest go in and out the normal ways.

Skin ✓ - I don't often suffer with skin problems but I can occasionally get an unexplainable rash on my arms and legs. Nothing Hydro-cortisone cream doesn't sort out. However the rashes can get quite itchy

Joint of Jaw ✓ - I suffer a lot on a daily basis with the joint in my jaw. It is constantly very painful when opening and closing my mouth and can make opening my mouth wide very difficult at times. However my Hyper-Mobility does enable me to put my fist in my mouth if I'm having a good day with my jaw. Eating can sometimes be very painful, especially if the food is chewy as it'll cause pain. I often suffer with my jaw locking or feeling like it will pop out of place. This is a horrible feeling as I panic when my jaw locks that it won't go back. After reading numerous blogs, forums and websites, problems with the joint in the jaw is becoming a very common symptom of Fibromyalgia.

Eyes ✓ - I have worn glasses since I was a very little girl (thanks to my dad's brilliant genes!). However Fibromyalgia can cause my eyes to go quite blurry sometimes which plays havoc with my eye prescriptions as it can make my eyesight worse for a short time but then next time I go to the opticians it'll be better. So I have to keep on top of my optician appointments and contact lense prescriptions. 

Anti-Depressant Side Effects  - I take Anti-Depressants not because I am depressed but because they help my Fibromyalgia symptoms. I am on a type called Venlafaxine which is an Anti-Anxiety type normally used to treat depression, anxiety, panic and phobia. I use it because it can help block the pain signals from the brain and ease my pain. It also helps relax me before bed as I can get quite tense and worked up if I am in a lot of pain. However it does cause some very nasty side effects. I am on a fast releasing form so when it nears the time of day to take them again they start to wear off. When this happens I suffer with what I call 'brain zaps' because they literally feel like electric zaps in my brain that shock down my body. They cause cognitive impairments and exaggerate my 'Fibro Fog'. Once I have taken my dose again these ware off. However if I miss a dose they are unbearable and I won't be able to get out of bed. Another side effect I suffer from the Anti-Depressants is involuntary jaw movement. Luckily I don't look like I'm gurning but it causes my jaw to clench which causes pain and makes the joint in my jaw a lot worse. It can also cause a lot of tooth ache so I have to be very conscious of this side effect and often have to try and hold my teeth apart. 

That concludes my Fibromyalgia Symptoms. I apologise for the very lengthy post, but I did warn you at the beginning. I would love to know if anyone else suffers with similar symptoms and problems or if there are any different symptoms anyone else has.

I wanted to do this post as May is Fibromyalgia Awareness Month and Sunday 12th May was National Fibromyalgia Awareness Day. I used Facebook, Twitter and Instagram to try and promote the awareness day and hopefully help spread the word to people that haven't heard of the illness. 

There is a lot of speculation from Doctors as there is no tests or scans that will show Fibromyalgia, which makes diagnosis very difficult. Also it causes some Doctors to not even believe in it. I experienced a lot of this when trying to get diagnosed as a lot of Doctors believed I was making it up because they couldn't see the illness, it must not be real. But I can tell you it is very real!!

Unless you have experienced the pain and symptoms of Fibromyalgia, you will never understand. This is why it's caused the Invisible Illness because you can't see that someone has it. Awareness needs to be raised to help increase support so that more research will go into the illness. America is miles ahead on research for Fibromyalgia than in the UK because more people suffer with it due to the larger population which means that more people needed answers, facts, treatment and help. This needs to happen in the UK.

As purple is the ribbon colour for Fibromyalgia, I decided to buy a purple bracelet.

Sunday, 17 March 2013

Want to contact me?

Since starting my blog I have had a few people asking me questions or leaving me messages which have been so amazing and inspiring. 
Therefore I have decided to set up an email and Twitter account for people to contact me.

For any private messages or questions you would like to ask me relating to Fibromyalgia, please email me on: 

Or follow and tweet me on Twitter:


I am hoping my Twitter page will be a place to communicate with people that follow and read my blog and to start a place where I can meet other sufferers of Fibromyalgia.

I am also thinking of starting a Facebook page, so that might be coming soon!

Saturday, 16 March 2013

Why I dress like a boy...

I was looking through my blog posts and they are all mainly writing, so this time I wanted to try and incorporate some pictures...

I have often thought to myself when I look in the mirror that I am dressed like a boy. Don't get me wrong, I am a girly, girl. I love make up, getting dressed up and having my hair down and curly. 
I would praise anyone with Fibromyalgia that can make an effort like some normal girls do every single day!

I would love to get up and put all my favorite make up on, and have my hair down and straighten/curl it and wear my favorite clothes everyday, but quite frankly I prefer my sleep.
If you have Fibromyalgia you will understand how exhausting it is and how important sleep is. So for me an extra hour in bed in the morning before work will always win over getting up and making myself look nice.

Most girls would love long, thick hair and I am very lucky that I do have long, thick hair.
When washing, drying and styling your hair can leave you in agony having long, thick hair is a nightmare!
I never want to wash my hair because I know my arms will be throbbing in pain afterwards. So I try to wash my hair as little as possible, one/twice a week. Quite often my mum has to wash and dry it for me because I don't have the energy or I'm already in too much pain.
This means I have my hair tied up every single day. Some girls probably think 'why does she always have her hair tied up?' but it's because I'd rather stay in bed longer in the morning and it hurts my arms too much to do anything with it. 
I even cut it short into a bob when I was 17 to see if that helped but that was harder as I couldn't just tie it up so I had to style it every morning. Luckily it's grown back now and is just as long as it used to be. 

If you have Fibromyalgia and could tame this hair every morning, I would give you a medal.

If you have any quick and easy hair styling tips, they would be very much appreciated!

Most girls wear gorgeous clothes that are the latest trends from the high street shops as their everyday wardrobe. 
The one word to sum up my everyday style is comfort!
I live in hoodies, tracksuit bottoms, chinos, jeans, trainers/pumps/high-tops and generally baggy, comfy clothes. 
This is where I dress like a boy. 
Me and my boyfriend often laugh as we end up dressing similar. But I would much rather wear nice comfy clothes than be uncomfortable in the latest trends and fashionable clothes.
As I am in so much pain and ache so much everyday, I get very agitated. If my legs are aching the last thing I want to wear is jeans. If I am in a lot of pain I also get very hot and flustered, this means wearing anything tight would just stress me out and make me worse. This is why I wear baggy tops and hoodies. Walking any distance can leave me exhausted and in agony so wearing comfortable shoes is one of the most important things for me. My favorite is high tops, they are padded and cushioned so they are comfy and warm. Plus they go up your ankle and give me that extra support. 

It doesn't help that I have a HUGE love for trainers, pumps and high-tops.
I would much prefer to spend £60 on a pair of trainers I'd wear everyday than a pair of heels I'd wear every now and again to go out. 

These are the latest on my 'wish-list'!

I am very lucky as I have an amazing boyfriend that doesn't care what I wear as long as I'm happy. Don't know how he puts up with me when I turn up looking like a chav, wearing my favorite hoody and trackie bottoms with my hair shoved up and no make-up on.
As for work wear I keep things pretty much the same, black/grey chinos with a baggy top and cardigan/jacket with flat shoes. It amazes me that girls want to wear heels to work. And again my hair is tied up everyday, with minimal make-up. This is purely for two reasons, I want longer in bed in the morning and I sit in a chair all day so I want to be comfy.

Even though I dress like a boy pretty much everyday, I am the complete opposite if I am going out at night or going to a special occasion. This is when the girly girl side of me comes out. I love wearing gorgeous dresses and heels, fake tanning, putting all my favorite make-up on including my fav red lippy, and having my hair done all long and curly. I probably look like a completely different person. This is because it's normally a one off or special occasion. I only tend to go out once a month, if that, because I am always just too tired and achey. I would much rather snuggle on the sofa.
When I am going out, my mum tends to help me with my hair because I would be in so much pain if I had to wash, dry and style it myself. I make sure I fake tan the night before. Then I can relax and take my time doing my make up. 


Everyday Outfit                  Going Out Outfit
(Hair tied up, Hoody, Baggy Top, Pants and Trainers)         (Dress, Heels, Hair Curly, Make-up and Fake Tan)

Definitely look like a completely different person!

As long as I'm happy and comfy then that's all that matters.
You should never care what anyone else thinks, it's my health and standard of living that is more important.

I try and do everything possible to make everyday life easier for me and if that means dressing like a boy then so be it!

Sunday, 10 March 2013

My Big Fat Rant...

Lately something has really been bugging me so I need to have a big fat rant to get it out of my system.

Due to my Firbomyalgia I only work 16 hours a week. This works out as 4 hours a day over 4 days in the week. So to full time workers who do 35+ hours a week, I can see why this doesn't seem much at all. 


I am sick to death of people saying comments to me about how little I work. A few common examples...

"I wish I was going home at 1:30pm!"

"It's alright for you, you've had a lie in before you came to work!"

"How are you tired? You only work 4 hours a day!"
"How are you tired? You've hardly done anything today!"

"It's alright for some getting a day off in the week!"

and the one that really gets on my nerves...

"Your lucky you only work part-time!"

In what way am I lucky?
I have a debilitating illness that affects my everyday life and causes me excruciating pain and fatigue, yet I am somehow lucky!

Yes, I may only work 4 hours a day but to me it feels like forever
Just 4 hours of work will leave me so tired and feeling so ill that I have to go home and get back into bed. There is rarely a day when I have been to work and not gone home for a nap straight afterwards.
I even have special pyjamas, eye mask, alarm and fur blanket for my afternoon naps!

Yes, I have a day off in the week but I mostly spend this in bed, resting, recovering and saving my energy to get me through the rest of the week. 

However, a lot of people are surprised to know that I don't just have the one job. I am very lucky that I have been making handmade hair accessories for a company for 5 years now. I make these from home and can amazingly do them in bed while I watch tv and films. I would not be able to cope without this small extra income. And yes I accept bragging rights for how good my second job is, especially as one of the shops the bows are sold in is harrods! 
(so even when I'm at home, I don't stop working)

I have also recently finished my nail technician training and have started doing a few treatments here and there to earn some extra money. As I do anything and everything I can to be able to work more than 16 hours a week. However, bows and nails do have to come second to my main job and illness as sometimes I am too tired and ill to do them.

A lot of people don't realise how debilitating and crippling Fibromyalgia can be. A lot of people with this condition have had to give up work all together. I am at a stage with my illness where I do manage to work even if they are limited hours and I have to push myself to do it. So don't be surprised if you say a comment about how little I work and I get an urge to punch you in the face!

My new response that tends to shut people up immediately when they say remarks like the ones above is...

"Well why don't you get a disability or debilitating illness and then you can work as little as me?!"

I would do anything to be able to work full time!!!

Rant over.

Monday, 14 January 2013

8 Months Later...

I can't believe the last time I wrote a post was 10th May 2012, these past eight months have gone unbelievable quick! I hope that people who used to be able to relate to my blog still have the link saved somewhere as your support was amazing!

A lot has happened in those eight months and I am still in at my 'new' job which is brilliant news, as my problems with my old job were causing my Fibromyalgia to worsen. I was stuck in a rut and if I'm honest I couldn't see things getting better at the time, but luckily they did.

If I have learnt anything about my Fibromyalgia, it's that the happier you are with your life the easier it becomes to manage. The pain, fatigue and general feeling ill will never go away BUT the happier I am with things the more I am willing to cope with it and push myself to do more. If I'm doing something I really want to do, the pain that comes after is worth it.

This has been a huge eye opener for me as life is too short to be unhappy especially if you have a debilitating illness. Now I quite enjoy my job and the people that I work with which means getting out of bed isn't as bad. I have amazing friends who understand when I can and can't do things. But most of all my boyfriend and my family have been incredible at helping me see things more positively. 

It is so easy when you have a disability to just let it get the better of you and give up, which is what I did. I was so depressed and upset all the time, thinking why me? Why do I have to have this illness? Then I came to realise even though I can't imagine being in anymore pain and how hard it is to cope with sometimes, there is always someone worse than you.

Don't get me wrong, it's not all fine and dandy. I still have days where I feel so unwell and in that much pain I struggle to move and I don't want to get out of bed. I still get upset especially with people who don't understand an invisible illness. But I'm slowly learning to just accept it as it is just something I'll have to put up with.

My new years resolution is positivity, as it's amazing how your way of thinking can change your life.

I am currently looking into different supplements for Fibromyalgia, and will be the topic of my next post.
If you have any to recommend or have heard have helped please let me know.