Wednesday, 2 November 2011

An Introduction To Me...

My name is Sarah Cartwright and I am a 19 year old girl from North Wales and I have Fibromyalgia.
I was diagnosed with FM around two years ago but I have had my symptoms since I was 13 so I have had FM for about six or seven years now. 
(wow, I didn't realise it was that long!)

The best way I have heard to describe the problems I face with my condition is that I have the mindset of a normal 19 year old girl but my body just won't do what I want it to. This is the most frustrating part. I want to go out partying until the early hours, I want to go shopping all day and blow my wages, I want to be able to work full time and I just want a normal life but my body has other ideas.

First I'll try and explain the severity of my symptoms as Fibromyalgia (FM) can affect people in very different ways from being able to lead a normal life with hardly any problems to being completely crippled with it and having to spend most of their time in bed or in a wheel chair. For me I'm probably smack bang in the middle.

I suffer with chronic severe pain all over my body in my muscles and joints, which never goes away or eases off. So you can try and understand how bad it is I'll list all the places it affects me:

Toes, Heels, Ankles, Shins, Calves, Knees, Thighs, Groins, Hips, Lower Back, Down my Spine, Upper Back, Stomach, Ribs, Chest, Shoulders, Upper Arms, Elbows, Lower Arms, Wrists, Knuckles, Fingers, Neck and Jaw. 

So pretty much every part of my body. I have the most pain in my elbows, back and thighs and knees which as you can imagine makes walking and standing very difficult. Any sort of psychical activity will leave me in agony the next day, and yes this includes dancing the night away unfortunately. My symptoms only show half of their severity at the time of activity as they don't come out properly until the next day. This is why a lot of people don't understand how much pain I am in because I can have a dance on a night out, but they don't see me in bed unable to get up the next day. For any normal 19 year old girl shopping is heaven, for me it is a nightmare. The walking, trying to look through clothes, carrying bags and trying on clothes just sounds like a day in bed waiting to happen. So for me I avoid it at all costs and internet shopping has become my life saver. As you can imagine this gets me very down and I do suffer from extreme mood swings, depression and anxiety from not being able to do all the things everyone else my age is doing. This also includes working full time. I tried it and gave it my best but I just physically could not do it and it actually breaks my heart as I am definitely not the type to sit back at home and have the government pay for me. So I do work part time (as hard as that is sometimes too) and from home when I have the energy to.

Not only does Fibromyalgia cause me severe chronic pain but also chronic fatigue. This isn't just tiredness it's actually having no energy to do the simplest tasks. Some days I struggle so much to just get myself out of bed and make breakfast never mind go out and do things. After any amount of sleep I just wake up feeling not refreshed and like I could go back to sleep for another 10 hours. This is where I struggle to work as I lose concentration as I'm so tired, I have no energy at work and to do simple tasks. 

As well as both of these a new problem I have been having to deal with over the last two years has been feeling generally ill. You know when you are beginning to get a cold or a virus and you ache all over, you feel a little tingly but it's not a nice feeling, you have that annoying headache that's only just there and the horrible feeling in your throat that's not quite a sore throat. Well I feel like that every single day on top of my pain and fatigue which a lot of people don't realise or understand.

I have all my symptoms all day, everyday and there is never a time when they are not present. I have just become so used to putting on a brave face. When I am with my friends I am always laughing and joking like my normal or should I say old bubbly self. When I'm on a night out I try to fight through the anger and pain to dance with the girls and have a good time. When I'm in work I put on my telephone voice to hide the upset and fatigue I feel. As soon as I get home I let my shield down and I am miserable, I really don't know how my family put up with me but they are so understanding. They let me shout and snap at them and lock myself in my room, then they talk to me and hug me when I need comfort. I would not be able to cope without my supportive family and understanding friends. 

I wanted to write this blog as a relief for myself to just be able to just say how I'm feeling and what I've had to accomplish everyday so that I don't bottle things up. As well as for others who suffer with the same condition to know they are not the only ones out there. As Fibromyalgia is medically known to affect older people I have found it very hard to sympathise with other people with this condition as my doctor and his colleagues have never seen it in someone from the age of 13 which is why I was so hard to diagnose. So I am hoping there are others like me and we can confide in each other.


  1. I love that your writing a blog.
    Firstly you are a wonderful writer, I think this has the potential to be a wonderful tool for you personally.
    Secondly this is an overwhelmingly powerful piece of shows things are sometimes easier to write than to say. I guess youve just proved that.

    Theres something behind everyones smile...even more for you SC and thank you for letting me in behind yours.
    Yours always Liz

  2. Hi Sarah!
    My name is Tena and I`m 22.
    I have fibromyagia for a year now.
    I understand every single word you wrote because that is exactly what I feel almost every day in the past year.
    Every part of my life is suffering because of my FM.
    I live in Croatia and I have been to several doctors but I`m stil not takeing any medications because I want to find out everything that I can about FM and then decide what medications to take.
    This month I have been to a psychiatrist and she wants me to drink duloxetin - cymbalta.

    Are you taking any meds? How are your doctors treating you?


  3. Hi Tenna!

    It's so nice to hear that someone else so young knows what I'm going through. It's so tough to get people to understand who don't know what it's like.

    I have tried quite a few medicines but with very little success. I have tried Gabapentin, Pregabolin, Diclofenac, Naproxen which are all different types of nerve medication for things such as Parkinsons or Epilepsy. But unfortunately they didn't help me with my symptoms. But I have read that all these medicines have helped others so I would definitely recommend a try in case they do have a better effect on you.

    I am currently on an anti-depressant called Venlaflaxine which is an adrenaline based tablet, the only thing it is helping me for is my sleep and it does help slightly with my anxiety that I suffer with from being so ill all the time.

    I have heard of Duloxetine, I'm sure it's a similar anti-depressant to Venlaflaxine which I am on now. It helps me relax before bed to help me sleep and stay asleep through the night. It also just helps me generally stay calm. As it is the only tablet that has done something for me I would recommend Duloxetine or Venlafaxine to you to try but only if you wanted to as going on anti-depressants can be a very daunting thing.

    Does any of that help at all? The only other treatments I have tried have been the usual things of Physiotherapy, Swimming, Gradual Exercise and seeing a Psychologist.


  4. Croatia is a small country and due to that there aren`t many people with FM - or even people that know that they have FM because it is hard to diagnose it- so it is so hard for me to find anybody with FM and talk.
    My body aches so much, mostly my upper and low back,neck, knees and sometimes my feet.
    The only thing that can help me and make me feel better for about two hours (if I`m lucky) is back massage.

    Sometimes if I walked too much or if I was sitting for a few hours it starts to hurt so much and I want to screem, and then if I get a back massage it`s such a relief.
    But only for a short time.
    Sorry if I`m writing all this stuff - but it`s so great to finally be able to say what`s it like - to someone who understands.
    Because, my friends or parents, no matter how much they try - can`t understand how I feel.
    I can`t sit for too long, I can`t walk for to long, I can`t dance or even get up from the couch when my phone is ringing in the other room.

    But unlike you, I have some better days - when my pain is a little bit weaker but that isn`t comforting when I know that probably next morning will be so painful and I will not be able to go to my university or have some coffee with my friends.

    I stil don`t understand which doctor is the one for FM, is it psychiatrist or is it rheumatologist or what.

    I was offerd from my rheumatologist to take pregabalin but I refused it because of it`s side effects.
    Duloxetin is the first medication that I`m thinking about.

    Has Physiotherapy helped you?
    What about exercice?
    I started yoga a month ago and I feel maybe a little bit better, the pain is the same but I feel more hmmm I don`t know the english word for this, I feel more open and flexible :)

    So glad you answered!


  5. Don't worry about saying anything, talking about things is like a relief to me and I will always be here to talk if you ever needed to as that's the whole reason I've started this blog to try and find people going through the same thing. You seem to have the most pain in the exact same places as me. I find for my back that putting heat on it helps take the edge off. So I use this wheat bag that I can put in the microwave to put on my back or hot bubble baths. But these do only help a tiny bit and temporarily :(

    I've not tried a back massage before, I've always been too worried that it will hurt. What type of massage do you get?

    Yeah I get that same problem from walking or sitting too long. It's so frustrating! As for my job I am sat down all day which puts me in so much pain afterwards. People don't realise how much it affects the everyday things that people do, like you say going to university or meeting friends for a coffee.

    Yes my friends and family are so good with me too but like you say they can't understand fully what we're going through. So it is so good to find someone who knows exactly what it's like.

    Yes Pregabalin has a lot of side effects as well as Gapapentin but they do work for some people, suppose it's only worse it if the effects of it are working well enough to put up with the side effects but they did nothing for me.

    Yes if I were you I would definitely look into Duloxetin, and have a good chat with your doctor about it first as I had a lot of sessions with my doctor before we finally decided to give anti-depressants a try.

    Physiotherapy did help a little, but I think my feel of massages came from Physio as they would try and loosen the muscles in my back and it was painful. With exercise it does help but not straight away as anything physical hurts us, so things like little 10-15 minute walks once or twice a week or maybe a half an hour swim once a week. It just helps me keep my muscles moving as I do have to spend a lot of time in bed trying to rest and recuperate.


  6. Hi,
    concerning massage... what helps me the most it trigger point massage in the upper part of my back, but also classic back massage in the lower part of my back because there I feel horrible pain in my ligaments/tendon that are around my spine or even wider, almost where my ribs are, little below.
    But I feel relief only for an hour or two after a massage.

    I realised that for a year now I wake up every morning in such pain and now that started to be my normal.
    That is so frustrating.
    The other day I was walking up the stairs with my friend and I said how much I hate stairs because of my knees and asked her does she ever feel pain in her knees...she was like a-a never, she never felt pain in the knees going up the stairs and for me that is a normal thing.

    One more thing, I wanted to ask you before did Psychotherapy help you but because I`m not so good in english I wrote Physiotherapy :).
    So did Psychotherapy help?

    I`m also gluten free for a month now because I read what a lot of FM people said that helped them- and some of them said that going gluten free was the best thing that happend to them.
    Now, I don`t believe that gluten free will cure me or that my pain will go 100% away, but since I`m GF i have so much more energy and Im less tired.
    Concerning pain- it didn`t go away but in the last year I was just sitting at home in pain and did nothing, but in the last month I starded yoga and gluten free diet - and I feel about 30% better.

    So, I believe anything is worth a try, and maybe something- someday will take our pain away and cure us.


  7. I'll definitely have to try a massage, as I'm really struggling at the moment. I've been signed off work with stress and I've also got the flu on top of everything so really not coping.

    No your english was correct, it was Physio-Therapy that I had. It was done at the local hospital. It's just where I had help with gradual exercises aimed for specific areas and muscles. At the start it did help, but then it slowly made my pain worse and the doctor would always say to push through it as it will help long term but it just got too painful.

    I have heard of trying gluten free foods so I went to my doctor and I had a gluten and wheat intolerence test but nothing came back so my doctor didn't think it would have much of an effect on me, but I have tried to eat a lot better to give me more energy.

    Does the yoga help? I did look into that at one point but just never got round to it? I've also herd that pilates is a good exercise to try.


  8. I just have to say that I am so glad to have found you. I have been looking for a source or blog dealing with someone around my age with fibromyalgia, and the search has been painfully futile.

    You are a wonderful writer, btw.

  9. Fiona, that's so good to hear. Makes writing this worth it as sometimes I worry people won't want to read it! If you ever need to talk or have any questions, I'm here!


  10. I'm so glad that there are people my age who are also going through the same thing! (I'm 20.) And I just want to let you know that you are not alone, I have had it since 14/15 so I know how it feels to be really young and thinking... 'fuck, I've got another 60 years of this!'

    Alice x

  11. It's so reassuring knowing there are others who know how I feel. That's the whole reason I started this blog because I didn't know anyone. Are you from the UK Alice? x

  12. Hi,
    I wanted to let you know I UNDERSTAND everything you are going through.
    I was diagnosed at age 20 and I am 44 now. Everything you are talking about
    is something you will have to learn to deal with and what a cost it is.
    I am honestly sorry others have to live with Fibromyalgia. I was diagnosed when
    Fibromyalgia wasn't a word Doctors knew... I only read a small amount of your blog but
    it is nice, and you are able to articulate very well what you are enduring.
    I can tell you that I have been through nearly every treatment there is and learning what works and what doesn't is a journey. I seen you are on anti-depressants. Please pay attention the the side effects it can cause... I tried them when I was your age as well. Everything ends up making Fibromyalgia worse within time. I recently made a blog but I am not sure if I am going to keep it up or just journal... Feels weird to not know if I am talking to myself :)
    I will tell you the despair one goes through living with Fibromyalgia is horrendous.
    I also wanted to say being honest about how you are feeling is very important.
    I have had to be a chameleon for my family most of my life due to their not wanting to see or accept anything is wrong with me... Because I look good therefore I must be good!
    I have had to deal with other peoples misconceptions about me for many years. A funny thought I sometimes want to say to them is... Yes, I was put on total disability at age 20 because I wanted it. No proof was needed they just signed the papers.
    Keep your blog going you need to have something to keep focus on :)