An Uphill Struggle – On Fibromyalgia.

img_4947

I have started several posts with the sentence ‘lately, I’ve been struggling’ and it’s often true.

In fact, I could quite easily start many more posts with that.

Because it’s true, I do struggle, I struggle an awful lot.

Over the past year I have had to really come to terms with the fact that I have a chronic condition and probably will have for the rest of my life.

Whether it is a chronic pain condition, a chronic fatigue syndrome, arthritis, or all of these, I HAVE A CHRONIC HEALTH CONDITION.

There, I’ve said it and it’s written in caps lock so there really is no denying it!

For the time being, we’re calling it fibromyalgia which sort of is a mixture of the three. It also sounds nice and official which makes a change after years of having to say ‘well… I have this back problem… the doctors don’t know what it is…’ which never got taken seriously.

So I thought I’d write an informative post about the condition, so that I get it all out there in the open. I have talked about my condition before, if you want to read them (I promise it’s not too depressing) here are the links: Living With Chronic Pain – Part 1, and Living With Chronic Pain – Part 2.

Recently I read this post from Mary’s blog Fibromy-Awesome. It really touched me. And I just felt I had to write this.

Why did I decide to write this post? Honestly, I absolutely promise that it is not because I need a rant, I’m writing this almost for the opposite reason. Firstly many people have asked me questions about my condition and I’ve never really explained the symptoms I have, secondly I feel like I need to write this – it’s like catharsis, and thirdly I want to accept that my condition has gotten much much worse and then move on. Writing this is me saying, okay I have a condition and it sucks, but my life is about much more than that and I’m moving past it.

The NHS website defines fibromyalgia as such:

‘Fibromyalgia, also called fibromyalgia syndrome, is a long-term condition that causes pain all over the body. 

The name fibromyalgia comes from three Latin words:

  • ‘fibro’ meaning fibrous tissues, such as tendons (tissue that connects muscles to bones) and ligaments (tissue that connects bones to bones)
  • ‘my’ meaning muscles
  • ‘algia’ meaning pain

However, the pain of fibromyalgia does not just affect the muscles, ligaments and tendons, but is felt all over the body. It results in widespread pain and extreme tiredness. People with fibromyalgia may also have:

  • difficulty sleeping
  • headaches
  • irritable bowel syndrome (IBS)
  • muscle stiffness’
What does it all mean in terms of my life? Well here are some of the main symptoms I (and thousands like me) have to contend with every single day:

Pain

Ah my old friend pain. Here is a sad fact about my life, it actually almost makes me cry to think about it, I honestly don’t remember what it feels like to feel no pain. For me, this was the first part of my condition that I experienced. Essentially, I have been in constant pain for the last 3 years and experienced pain everyday for 2 and a half years before that. I wake up in pain and most days this just grows as it goes on. I go to bed in pain. So far, none of the pain killers, anti-inflammatory drugs, etc that I have been given have worked. I have learnt to deal with the pain and if I’m honest I think I will be in pain for the rest of my life. Pain seems to be something the body, or at least my body, can’t adapt to. I can’t ignore it, I can’t get used to it, it never goes away. I feel the pain most acutely in my hips, lower back, upper back, shoulders and neck: I have sharp stabbing, shooting pain up my spine throughout the day. My knees, ankles, arms, wrists and hands are, so far, less affected. The whole of my body constantly aches, many days I struggle to walk much, I can’t stand for any length of time at all, sitting upright causes my back huge amounts of pain and even lying down is no longer comfortable…

Fatigue

This is a newer factor for me, I’ve only really had problems with fatigue for the last year or so, and it’s only become serious since starting university. I struggle to sleep but I am on medication for that which does actually manage to knock me out for the night. But when I wake up, which is really difficult with the drugs (you win some, you lose some), I feel as though I haven’t slept. Most days I can gather up enough energy to go about my daily life, some days I actually feel pretty good and manage to live more normally, but some days I crash. I feel completely drained and exhausted, even lifting my arm feels like excruciating effort and I stay in bed for the entire day. This usually leaves me feeling completely weak, I am unsteady on my feet and last term I even collapsed twice – half from the pain, half from the exhaustion. The fatigue often brings on headaches, I usually have 3 or 4 a week (my pain also causes headaches).

Extreme Sensitivity

This is a difficult one to judge because it’s hard to remember what I experienced 5 years ago and differentiate that from what I experience now to figure out what is caused by my condition. I have become much more sensitive to bright light (e.g. overhead lights, bright sunlight, etc), it hurts my eyes, makes me feel tired and gives me headaches. The same goes with loud(ish) noises. I also experience hyperalgesia which is when you are extremely sensitive to pain, banging my toe or elbow is extremely painful and causes my back to jar. I also get cold very easily and the cold causes my joints to be more painful than usual.

Stiffness

I am, as I already mentioned, extremely stiff in the morning when I wake up and this often carries into the day. It makes sitting in lectures or sitting at my desk extremely painful. The stiffness and pain also causes a lot of tension in my muscles which in turn occasionally causes them to spasm which is where they contract tightly. Sometimes when this happens my knees buckle and I stumble, it’s difficult not to fall over. Lately I have also found that my hands spasm pretty painfully when I am writing by hand or typing. If I’m honest, this particularly worries me.

Cognitive Disturbance

This has in a way been the hardest symptom to deal with. Don’t get me wrong, the pain and the fatigue are awful to deal with, they have taken so much of my life. But this has really really affected my work and that is not easy to deal with, either at Sixth Form or at university. When things are particularly difficult I have trouble remembering even the simplest of facts, I have difficulties concentrating, I get dizzy and struggle with balance, my eye sight blurs slightly and my head spins pretty badly. The strength of my medication really doesn’t help with these issues. These cognitive disturbances get referred to as ‘fibro-fog’ (somewhat patronizing in my opinion) and they make reading difficult which I really hate, they also make working and revising very complicated and sometimes impossible tasks. Combined with my inability to sit at my desk too long from the pain and the exhaustion the fatigue brings, doing my work at university has been incredibly difficult and organisation is hard to keep on top of. I used to be the sort of person who did her work the day it was assigned, was super organised and had everything ‘just so’, as such this has been really difficult and hurtful to deal with.


I really don’t want this post to be just about me, and I certainly am not looking for any sympathy. What I want is to raise awareness about conditions like mine, these so-called ‘hidden illnesses’.

The other day I took the lift to go up two floors in Waterstones. I didn’t have my cane as I was with my mum and I could lean on her arm if I needed. As we got to the second floor there was a couple with a toddler in a pushchair waiting for the lift. My mum went past but then as I went past the guy exclaimed, in that loudly obnoxious voice people use when they’re feeling self-righteous, something like “Oh yeah, because you’re disabled!” and then proceeded to complain to the woman with him. Now to be honest, on that day I was really struggling so, unless one of them had a condition like mine, it would have actually been easier for them to carry the pushchair between them (it’s not like they’re very heavy!) down the two flights of stairs than it would have been for me to climb them. So although I wasn’t particularly upset by the experience, I was a little irritated. What if I had been a cancer sufferer going through chemo, or an AIDS patient, or a cystic fibrosis sufferer, a sufferer of clinical depression, or anything ‘hidden’ like that?

It’s just plain ignorance to act like that and it really made me think that we really shouldn’t judge people, you never know what they are going through behind closed doors.

Anyway, I really hope you have taken something from this post. It took a lot of energy and emotion to write and I feel pretty drained now. But actually, I am proud of myself for pushing through this, I am proud of myself for not giving up, I am proud of myself for what I have achieved.

img_4956

Tomorrow is my birthday (yay!) and I promise I will be back with a slightly easier to read and more uplifting post!

Did you learn something from this post?
What are your thoughts on ‘hidden illnesses’?
If you would like to, I’d love for you to share something ‘hidden’ that you struggle with!

Advertisements

41 comments

  1. Wow this was so informative, Sophie! I had no idea about half of these facts, thanks for sharing. You have no idea how much I admire your strength, it must be difficult to get through some days but you do it with a smile 🙂
    Hope you have a great night and happy early birthday too!!!!

  2. Wow, I had no idea what you were going through. I’m so sorry to hear that you have so much pain on a constant basis. That just doesn’t seem fair. It seems that you are trying to look on the bright side, or at least to accept that this is a part of your life, and for that I congratulate you. You will be able to help so many people with similar conditions by reaching out this way. I am positive of that.

    Hidden illnesses can be so frustrating! I don’t have any hidden illness, but I did have a very sharp, shooting upper back pain for about a year. Doctors could never figure out the problem, but eventually it went away. For years I’ve had a hip pain/lower back pain. I can’t walk all over campus without it hurting. I definitely can’t work out without it hurting. Can’t even do a squat! I always feel awkward in group exercise classes because I can’t do a lot of the moves they are doing since I feel so much pain when I do. They probably have no idea why I don’t do the moves.

    Happy early birthday!

    1. Thank you for such a thoughtful comment Allison, it means a lot! And thank you for the support, I am glad I come across as (mostly!) positive to you 🙂

      I’m really sorry you struggled with back pain and that you still get pain in your lower back and that you still struggle with pain there and in your hips 😦 I completely understand what you mean about feeling awkward in those situations, I’m just the same, even after all these years! Have you seen anyone about the pain you’re still having? You shouldn’t have to suffer!

      Thank you 🙂

  3. Honestly, I wasn’t going to read this because I get paranoid whenever I hear about anything medical that has to do with conditions, diseases, illnesses, ect. but it looked like you put a lot of time into it and I felt like you deserved people to know more about what you’re going through. I’m glad I read it though because I learned a lot and it really shows how you really don’t know what a person is going through on a daily basis. Especially via internet or if your a stranger on the elevator like your experience. You really are an inspiration and I love how you’re working to get past this and accept it. Thanks for sharing your story Sophie!

    1. I know what you mean there, I wouldn’t be offended if you hadn’t! But thank you, I did put a lot into it so it means a lot that you did read it 🙂 And thank you very much for your supportive comments, I’m really flattered that you think that!!

  4. You have taught me an enormous amount. My mom has fibromyalgia and I’ve never really understood what it is she goes through; you have managed to very succinctly let me know what an average day for her may be like. Mom was in her 50’s when she was diagnosed and was basically boarded from work due to the severity. My mother-in-law also has ME. What I see on a daily basis from them is also how they try very hard to not let it rule their lives in what they can and cannot do, I think for them age is more a factor than illness 😉

    I also have a few friends who suffer from other “unseen” conditions and it can be very frustrating and upsetting when people judge based only on what they can see.

    thank you for sharing xx

    1. Hey Lara, firstly welcome to my little blog! I am really glad that I have helped you to understand what your mother is going through, it’s not easy to explain it to someone who has never experienced anything like it, I definitely find it easier to write about. I am sorry for the suffering both your mother and your mother-in-law must go through!

      I am glad that you enjoyed the post 🙂

  5. I know you sometimes feel like your starting your posts with ‘I’ve been struggling’ but seriously, how you remain such a cheerful and generally upbeat person while fighting that condition is amazing. I think its great that you have been able to blog about this. Hope you have a wonderful birthday, you deserve it!

  6. This was so interesting and informative. I’ve heard of fibromyalgia but didn’t realise how multifaceted and debilatating it can be. I think it’s incredible how positive you manage to stay and how open you are about it on the blog.

    I don’t really have much experience with hidden illnesses. However, I did just find out I had glandular fever last term and that sometimes feels like a hidden one (and it’ll be a long run before it’s out my system). Even though the infectious part of it is over, I still get the fatigue that you describe (one day I’ll be fine, the next so shattered I want to go back to bed by 10 am) and a lot of general myalgia. It’s tough because I feel like people think I’m moaning about nothing when I’m having a bad day or that I’m putting it on for effect. It’s definitely frustrating.

    I hope you have a lovely day and wonderful birthday tomorrow!

    1. I’m glad you found it interesting to read Jessica! To be honest I hadn’t really heard about fibromyalgia until I started developing my condition, I don’t think it’s very well known as an illness. Thank you, I’m so grateful for the support 🙂

      I’m really sorry that you’re still experiencing so much fatigue 😦 A friend of mine has had glandular fever lately so I know that it isn’t much fun at all, I really hope the symptoms start clearing up soon!

      Thank you lovely!

  7. The last story about the elevator really touched me, as I screw up sometimes but overall I truly try to live my life being honest with me – It may have upset me as a mother with a stroller if, what looked like two capable people were using the elevator, however, I always try to think about their side of things. I think that’s the reason most people have lost their faith in humanity – they forget they’re human themselves 😉

    You can never know where someone else is coming from, so I never try to make it about me.

    Sophie, reading your posts on pain really make me feel so proud of you and my mom. I can’t imagine living like that. And to top it off, live like that trying to spread positivity and make a difference. You should be proud of yourself. I actually wished I could give you a hug when I read the words “I can’t remember what it feels like to not be in pain” > or something along those lines. I’m sorry girl.

    However, I know you didn’t want sympathy! you wanted to spread the love – so don’t worry I have something coming soon on my blog and I can’t wait for you to be apart of it 😉 you are making a difference and I’m happy for you.

    xox Tom is one lucky guy!

    1. Oh I would have completely understood his annoyance if we’d blocked them from the elevator or something, but we had come up and were getting out whereas they were waiting to go down! So we didn’t inconvenience them in anyway! But it’s in the past now 😛

      That’s my attitude, I’m glad you feel the same 🙂

      Thank you so much Ali, your support means a lot to me! Oh that sounds really exciting, I’m really flattered that you thought of me, I look forward to seeing it!

      Haha thanks 😉

  8. I think you’re so strong not just for striving through this but for your ability to be so open about yourself. I hope writing all of this down was a catharsis for you. Sometimes you just have to let your emotions out or they will devour all that’s good in you.

  9. First of all, Happy Birthday tomorrow! I will say it again anyway, but just wanted to mention it early 🙂
    And second, well wow. Thank you for sharing all of this Sophie. I have read about your experiences with the pain and related issues in other posts you have written but this is the most clear and understanding one thus far (for me anyway). I really did not know the extent of the pain you were experiencing, not at all in fact. And then I had no idea about the other issues as well- fatigue, sensitivity, stiffness and of course, cognitive problems. Well gosh lady I am just so sorry you are experiencing all of this… and I so wish I had something more useful to say.
    You have every right to feel frustrated with the elevator situation. I mean seriously, how can they possibly make a judgment on someone they have NO IDEA what is going on with them?! This makes ME MAD for you! Grrr.
    I learned so much from this and I truly appreciate your honesty. Thank you again and of course, stay strong and keep fighting ❤

    1. Thank you!!

      I’m really glad that it helped your understanding, that’s what I set out to do when I wrote it 🙂 And thank you so much for all of your support Tessa! It means a lot to me that you continuously write all of these kind words to me. I think a lot of people underestimate these sorts of conditions/illnesses and make judgements!

      Thank you again lovely, I hope you are doing well ❤

  10. Sophie,

    Thank you so much for being so strong and sharing your daily challenges! It’s good to read your in-depth explanation, as I know you mention your struggles but I didn’t know the extent. I’m so sorry you have to experience such pain, as I don’t know you in person, but you just seem like such a calm, caring and genuine person. And no one should make snap judgments about a person/a person’s capabilities. We ALL have hidden challenges of some sort (although of course some are more limiting than others), so who is anyone to judge? Stay as wonderful as you are, and know there are so many people wishing the best for you!

    1. Thank you for writing this lovely comment! I’m really glad it helped you get a bit more of an insight. Through being ill I have definitely learnt that you should never make snap judgement as there may be more going on in a person’s life than the eye can see.

      Thank you so much for your support Allie 🙂

  11. I have Fibromyalgia also. I have learned to not tell people because they just don’t understand. The worst part is when my own family doesn’t understand. Taking a shower each day is sometimes a chore. I do not know how I have been able to go to work every day. Here is an awesome analogy that helps explain: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/

    I didn’t write it but it has helped some people understand a little better.

    1. I am really sorry firstly that you suffer so much, and secondly that you don’t get the support that you should from your family. I know how difficult it is everyday and without help from other people it’s much much worse 😦

      Thank you so much for the link, I’ve never come across the website before and it’s brilliant. That article is amazing, I’ve bookmarked it and plan on showing it to all of my family and close friends!

      I hope things improve a little for you soon!

  12. Thank you for writing this, it confirms to me how strong and inspirational you are. Before I started reading your blog I had only vaguely heard of fibromyalgia and I really didn’t know what it was. I think it’s important to raise awareness because it’s all too easy to just see what’s on the surface and not understand that someone is in pain.
    From your blog I have learned to make sure that I treat everyone with consideration because it astounds me how inconsiderate and rude people can be.
    Also saw this and thought of you (and me): http://www.bbc.co.uk/news/magazine-17510163

    1. Oh thank you so much Sarah, that means a lot to me! I hadn’t heard of it at all until I started developing my condition, I definitely think awareness for these sort of permanent, life-altering conditions needs to be raised.

      I’m so glad that I’ve helped to spread that message, I definitely try to treat everyone I meet with consideration, even those who don’t appear to deserve it 😉

      Thank you so much for that link, I read it and it was incredibly interesting. I’m touched that you thought of me 🙂

  13. This is awesome that you were able to open up and share this. I have only briefly touched on this subject in classes for school, but never heard any personal stories. I wish I could reach out and hug you to take the pain away, that is one of the toughest things to read about.

    The people in the elevator, made me mad. I hope they tripped and scuffed their knee! Happy belated birthday, I hope it was wonderful!

  14. Wow, I really really admire you for all you’ve been through/are going through. Your strength and motivation really is giving me strength to push through the things I’m struggling with right now.

    My hidden struggle are my IBS issues. Because I have yet to have it formally diagnosed I still suffer a lot of stomach issues and pain. So 80% of meal times are accompanied with pain, so I can relate to having something wrong with you that isn’t visible on the outside.

    I hope your birthday was everything you wanted it to be!

    You’re truly an inspiration (just wanted you to know that) 🙂

    1. Oh thank you so much sweetie 🙂 I’m really flattered! I’m glad I help, even in only a small way!

      Oh no IBS isn’t really much fun, occasionally I deal with it mildly and my mother used to suffer really badly so I have an idea of what it’s like. Your case sounds really awful 😦 Are you seeing anyone for it?

      Thank you! And thank you again, I’m really touched 🙂

  15. Sophie, thanks so much for sharing this. I’m so sorry for what you’re going through, but you have such a great attitude, and I applaud you for that. I definitely cried reading this, but I know you’re strong and you have such a fantastic attitude and always seem to find the beauty in everyday life. Have a nice rest of your week!

    1. Thank you Anna, that means a lot to me! I’m so glad that you see me as strong 🙂 It’s nice to have it all recognised as I do really try everyday to have a positive attitude and pay attention to the wonderful things in life!

  16. Hi Sophie,
    My heart goes out to you and to some extent, I understand the pain you are going through. Imy friend also suffered from fibromyalgia for many mnay years. However, since she started using this amazing product called teviron negative ion clothes, she is almost 100% well. The most wonderful part is that she is almost pain free! I hope that you will check this product and give it a go because medically, there is no cure for your condition. Yet,after seeing my friend’s ‘near’ recovery, there is hope for all who suffer from F. So all th best.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s