Latest steps with the Fibromyalgia

I had big plans to try and write lots of really informative posts about fibro, to try and really give people a good idea of what fibro is like and help other sufferers learn more about the condition if they are newer and looking for more info.

If you didn’t see my first post on it then I’ll link it HERE – It’s just a basic run down of some of the symptoms that I deal with having fibromyalgia. Even the title shows you that I was planning on doing so much with it, that was supposed to be post #1 of many. Turns out, though, that whenever I come to talk about it in any real depth, to get into the emotions and the actual issues involved… I reach a sort of blockade. 

I did think, though, that I could maybe type up a couple of paragraphs about what’s been going on recently in terms of doctors and things.

I saw a specialist in Bath a couple of weeks ago and he did a number of checks on different parts of my body, we ran through my symptoms, talked about it all and he confirmed that I have what he said was a ‘very active case of fibro’ – I have no idea what that means but I guess there’s no harm in getting some confirmation sometimes.

 But after that all he could offer me was a place on a course they run in Bath – It took us two hours to get to Bath, and two hours to get home. My Grandparents had to sacrifice their day and my mum had to look after Ethan, which she won’t be able to do once she starts her new job. It really is Not all that possible for me to go to Bath on a weekly basis for a course that sounds very similar to the one that a previous doctor has told me she didn’t think would work for me… The doctor I saw in Bath was good, though, he seemed a little perplexed as to why I was sent to him when I couldn’t participate in the one thing he had to offer (I say seemed, I mean that he actually outright asked me why I’d been sent to see him) but he did suggest a couple of things to my GP to try out.

Well the stack of medication is now far bigger than the one above. I’m on a further pain medication called Pregabalin or Lyrica. It’s something I’ve heard mixed opinions on but on my second day taking it I definitely feel an improvement – I’m not pain free but it’s definitely taken even more of an edge off of it than the co-codamol and tramadol do (both of which I am taking along side the pregabalin)

The thing is, with these medications, is that sometimes they’ll seem fab for a week and then the effects get lesser and lesser. As such there’s such a big chance that in a week or so time I’ll have lost the help I’ve gained from these – I hope I won’t because I am loving the difference, I’ve had tears in my eyes over the differences it has made in certain areas of my life. But, if it doesn’t last then I will, at least, enjoy the time that I do have with things being slightly improved.

As for the courses – I won’t turn down help, I need help, this condition isn’t going anywhere and I have to live with it. But they’re going to have to wait until Ethan is in school so that child care, at least, isn’t an issue.

My blood tests all came up fine so there’s no answer to why I passed out a couple of months ago – It’s great to know there’s nothing big wrong but it’s scary to know that this could just happen again. I just need to be even more careful – The fibro means I have to force myself to go slower, to not push myself, but if I get even the slightest inkling of one of the funny turns that lead me towards passing out then I have to just stop and wait for it to pass.

All in all – The lyrica has helped a little, and I hope it stays that way. I’ve not been posting much recently, I know there was a string of posting every day but they were scheduled a while back, I’ve barely blogged in a couple of weeks. That’s down to the fibro, I’ve been suffering from tremendous, very regular headaches, the exhaustion has been pretty consuming and the pain has been really bad – And, so, I’m sure you’ll understand that’s why the blog hasn’t been moving forward as well as I’d like. But I’m not going anywhere, I may take breaks from time to time but this blog is one of the things that helps keep me sane whilst I battle this condition and so I’m not giving it up for any reason.

5 Comments

  1. Hollie Skerry October 29, 2013 / 7:45 pm

    Ugh, Fybromyalgia is not a fun condition to deal with at all. I work in a chemist, and it's surprising how many people in the area have been diagnosed with it recently. It's definitely becoming a more recognized diagnosis here, so hopefully that means that there'll be more of a headway with the pain management side of things. I hope the Lyrica keeps on helping, it's pretty heavy duty but I know a lot of people who have had a lot of success taking it, so my fingers are crossed that you do too! x

  2. Sharon Taylor October 29, 2013 / 8:12 pm

    I've always been curious about the condition as a friends partner suffers from it but I would never think to ask him anything about it.

    I've spent the last couple of years on either Co-codamol or Tramadol and they make me weird, I swap between the two as I was getting used to the effects although Tramadol on its own has been fine after my surgery and being on morphine for a while. I can't get through a day without Tramadol, I can barely move without taking it first thing although I'm never completely pain free. Now I'm back at work I'm exhausted and in pain but I'm fortunate as I know I should get better (but I'm the same with my blog updating, I'm so tired and sore, I have no energy but I'm trying to be normal).

    I really hope you can find a much simpler way to deal and help much closer to home. It's important that you look after yourself, not meaning to state the obvious, hopefully you can find a combination that you don't get used to but I understand it just isn't that simple.

    Sharon xx

  3. Carrie October 30, 2013 / 1:20 pm

    Thank you for sharing a very personal post with us. I suffer from ME/CFS and was treated by a specialist at Bath, I found them so much friendlier and more helpful than other doctors elsewhere! I realise the conditions are obviously very different, but if it helps at all, I went through a phase of passing out, my blood pressure would drop for no reason, and they couldn't seem to find a cause, but it stopped after a few months and I haven't fainted in over a year now. I feel like I can't talk about my health on my own blog for some reason, so I think it is so brave of you to post this, and I am so grateful that you have, as although I am so sorry you suffer with this, it often makes me feel a little bit better to realise it's not just me.
    Thank you, and much love,
    Carrie xx

  4. Anonymous October 30, 2013 / 10:42 pm

    This is a really touching post. Fibro is a horrible illness. I got diagnosed 2 years ago but been unwell for at least 6 years. Remember that you are not alone in your pain and fatigue. I have benefited from joining support groups and online forums. Hugs x

  5. admin January 1, 2014 / 2:33 pm

    I cannot believe I don't have a comment up here – I am sure I replied but so annoyed I haven't!

    Thank you, everyone, for your replies, they're fantastic and it's amazing how much the support of people online can help 🙂 xx

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