Living With Fibromyalgia

Thursday, 14 March 2013

On the outside I look like a perfectly normal young woman. I'm 5ft10in, overweight, decently dressed with bright lipstick and curled hair most days. When I present myself outside I look normal but I don't feel well. I am in constant and consistent pain that is managed mostly by strong painkillers that I have to have blood tests with to check they aren't damaging my liver. I have Fibromyalgia and the reality of life with it is not what it seems.

So before I go into my experience with Fibromyalgia you may want to know what it is. It's described as a long term chronic condition which causes pain all over the body. Symptoms of Fibromyalgia alongside the widespread pain include muscle stiffness, irritable bowel syndrome, difficulty sleeping, headaches and 'Fibro fog' which is when your brain basically goes to pot - kettle in the fridge kind of issues.

I've had widespread pain for around ten years. As a teenager I was described as lazy as I often didn't get out of bed until midday missing school as my mother worked in the mornings or laying in bed until the afternoon on weekends. My parents dismissed it as laziness coupled with generally being a teenager. I was diagnosed with Fibromyalgia when I was 20 - six years after developing the symptoms and refusal from the doctor to refer me to a Rheumatologist. When I fell pregnant the pain seemed to ease up and I was told that often pregnancy can cause Fibromyalgia (FM as we shall now call it) to go into remission. As soon as I stopped breast feeding the pain came back and oh, it came back with a vengeance.

That was four years ago and since then I've been living on a cocktail of sixteen pills per day, keeping a sleep diary, keeping a food diary and limiting my intake of foods, cutting out certain food groups for periods to see if it helps, exercising moderately to keep active but nothing happens. Nothing takes away the pain. The doctors say to exercise but on a bad day I can barely walk five steps without needing to sit down. Today I took a bath and needed to sit down after sitting in the bath. I have no energy. I have burning pain in most of my muscles when I'm sitting, standing, walking, eating; it doesn't stop, it's just varying degrees of pain and reliance on pain management.

I try not to talk about it too much as it seems like I'm moaning. Which I am, of course I am, but nobody likes a moaner. So I get on with it as best I can. I stand up and say to myself that I can totally do this and even if I have to limit my activity for the day I will be productive. I may struggle to dress myself but I will bear the pain to dress my daughters. I may struggle to lift a pan of water some days but I have an amazing supportive partner who does it for me.

Which brings me to this part - the boyfriend. He deserves a paragraph of his own because he is an absolute gem. He takes the pressure off me to do everything, he'll massage me if I'm well enough to take it, he'll spur me on and help me out of the bath. He is there for me to whine to, to cry on, to laugh with, to shake off the dust of the day and say "Love, we'll start again tomorrow". He doesn't fully understand the illness. He doesn't understand why it's so variable and why nobody can cure it. He gets frustrated and angry at the situation and I can completely see why. It may be difficult for me but I have the pain to focus on getting through, a boyfriend, daughters...I have motivation. He only has love for me to help. He can't take the pain away or force me to do something. He can't lead a normal life in the weeks I have a flare up as he becomes the head of the house overseeing everything. I love him for all that he does and he loves me for trying.

I hate this illness. I hate forgetting things I just said or getting confused mid conversation because my mind has been covered in a 'fog'. I hate waking up feeling like what I imagine someone would feel at 90. I'm 24 years old, I will live my life but living with FM is not pleasant. It is difficult and painful and tiring (God, exhausting) yet I will continue to try to make friends with the indecipherable beast. I will stand side by side with it and we'll do this together seemingly in pain or not at all. I may have to live with this but I won't let it run my life.

* I can click pretty much every joint in my body thanks to this too. Freaky party trick but at least I have one.

21 comments:

  1. You are very strong young woman. I have great respect for you and other who live whith chrinic illness and pain.
    Love Laura x

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    1. I don't believe that I am strong. I believe that you do what you can in life and when life throws you an illness, you cope. With Tramadol.

      Thank you for your kind words. They mean so much during painful times xo.

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  2. Wow... your symptoms sound identical to mine. I'm waiting to see a Rheumatologist at the moment, after over a year :( xx
    Gemma | ♥ Miss Makeup Magpie ♥

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    1. I'm so sorry to hear you're unwell also. My Rheumatologist was poor and I waited for months for my appointment. He diagnosed me and I've not seen him since. I sincerely hope you find your diagnosis and answers soon. Feel free to email me if you ever need to vent or talk xo.

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  3. repect my love. does wine help? we'll test it out. x

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  4. I can relate to so much of what you said, as i too suffer with fm and have been been bedbound at times in my life :/ you are so lucky to have a supportive boyfriend, this seems to be a deal breaker for any relationship for me right now and i defo wouldnt be able to manage kids lol i dont know how you do it! ooh man yeah i know what you mean talking to someone and mind going blank, feel so stupid :( ohh and always having to cancel plans because you just dont feel up to it.. sigh! stay strong xxx

    justaddicingandsprinkles.blogspot.co.uk

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    1. I am so sorry you're going through this too. I've been bedbound for days too and as we both know, it can be soul destroying. We are warriors and we'll carry on. Feel free to email me if you need to vent xo

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  5. I really feel for you sweet heart, life is sometime really cruel and unfair! xxx

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    1. Thank you. It's hard but life doesn't stop for pain as much as I wish it would sometimes xo.

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  6. I never really understand the difference between chronic fatigue, I have almost all of the same symptoms as you and have been told it is atypical of chronic fatigue. Odd.

    I live with the horrible pain daily, and I know how distressing and life-changing it can be. But I also know how much a supportive partner can help. Sounds like you have a gem!

    xx

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    1. Chronic fatigue from my understanding has less pain, more fatigue and no trigger points on the body. Do you have a diagnosis of CFS? xo

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  7. So sorry to hear you suffer with this :( I was also assumed to be lazy and in a constant daydream throughout my teenage years and after a lot of stress and hassle and yelling at the nhs I was diagnosed with it 5 years ago. This year has been the first time I've been able to work full-time thanks to an incredible treatment called the Bowen Technique. It's expensive but after 4 sessions I felt like a new person and I have so much energy now so totally worth it. I still have bad days, IBS is bad but the body pain and exhaustion is so much better and I can even go running! I saw Eloise Gynn in Cardiff - http://www.bowencardiff.co.uk - she's awesome. I'm not sure how close to Cardiff you live but thought I'd recommend in case you're nearby. Take care x x x

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    1. Thank you for the details. I did try to email her but the email won't go through. If you have any other contact details for her please get in touch. I'd love to try the therapy she specialises in xo.

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  8. Aww I had no idea you live with this :( An old friend of mine has either that, or something similar, I know it's horrendous :( Why are Drs so useless at diagnosing things when you're young? Mine were the same with my underactive thyroid - I'd been symptomatic since I was about 14/15 but everytime I went to the Drs to say how exhausted I felt they said it was hormonal (which it kinda is), but they never did the one bloodtest to check until I was 30!!!!!!!! Finally I'm on medication, but I lost out on 15ish years of opting out of doing stuff because I was so tired :(

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    1. I guess because the condition is so variable the first thing they think is that it's in your head which is understandable but so frustrating. I felt like I lost a lot of my life suffering but the good days make up for the bad lately and I'm so grateful for them. Do you still have severe fatigue now? xo

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  9. It's scary how much I can relate to this post! I have something which is either chronic fatigue syndrome or lupus and have the same symptoms of exhaustion and sore muscles and joints as you. I spend 3 months bed-ridden last year and that was the first time the doctors believed that there was actually something wrong with me (I've had these symptoms for almost 4 years now). Unfortunately they won't know whether it is chronic fatigue or lupus until (and this is a if/when circumstance) I have another flare up. Whatever it is that I have, it has severely affected my immune system and I get sick all the time. I also can't drink alcohol at all because my liver doesn't cope with it and I end up bedridden for weeks. I am lucky enough not to have constant pain with it. I can't imagine how you cope with that on top of the exhaustion and all the rest of it. You are an incredible person, that is for sure!

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    1. I hope you get a diagnosis soon. 3 months being bedridden is my idea of hell. The longest I have been truly bedridden is 2 weeks and it was two weeks and I was so depressed it was unreal so I have the greatest respect for you. A friend of mine has lupus and it sounds horrendous. I can drink but I can relate with the affected immune system. I have to take a cocktail of vitamins to make myself a fraction of the healthy person most people are and a cold can knock me out for weeks. If I ever catch the flu it's guaranteed I'll be hospitalised as it affects me so badly. I am so sorry you can relate to so much. Nobody should ever feel so terrible.

      xo.

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  10. Thank you so much for sharing this and I'm sorry to hear about how much pain you're in. The doctors think I might have FM, not that my Rheumotologist told me I found out he suspected from my GP who mentioned it was in my notes. I've had nothing but trouble since I started going for my Chostochondritis, they never seem to be on your side! I'm very lucky my pain isn't too bad at the moment, some days I can still be pretty okay. I love how you aren't letting your pain run your life, it's very inspiring and I really hope to do the same :)

    xx

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  11. Awr bless you Laura this sounds awful! Good on you for being so strong and its nice to hear that you have a decent partner to support you when times are hard. x

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  12. Such an honest post hon - thanks so much for sharing. I work for Great Ormond Street Hospital and regularly see kids with chronic, painful conditions. Their courage and resilience always inspires me, as does yours. Keep your chin up chick and so glad you have a wonderful fella to lighten the load x

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