Today I am having an ‘I’m going to get better day’. It’s been over seven years since my fibromyalgia diagnosis, since I realised I wasn’t going to have everything from life that I hoped, I am a long way down the path of learning to cope, but I don’t believe it’s a path that’ll ever end and that’s fine.

Since that first diagnosis my fibromyalgia has become a lot worse, I’ve developed any number of new conditions (more on that soon as there’s been some progress with working out what) and life has become harder than it was when I was diagnosed. And, of course, so has coping.

There’s a lot of ways to cope with a diagnosis of something chronic and a lot, for me, revolves around acceptance, about understanding your new limitations and learning to look forward to the new things your life has to offer. But some days you seem to forget that acceptance (and I know I’m not alone in this). Some days you decide you’re going to get better one day and you think about how your life will be when you do.

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If you’re a regular reader you’ll be aware that my health has been somewhat of a nightmare for a long time now. You’ll also have noticed that my posting has become even more sporadic than it has been in a long time. You wouldn’t be wrong to assume that these two things are linked.

My last health update was quite a hopeful one, not hopeful in terms of not being ill, that boat has sailed, but in terms of finding out answers, I didn’t have any yet, but I really thought I was close to understanding what was going on, I was wrong. If you’d like to see that post, to further understand the back story, you can find it here.

I’m going to try to keep this as, relatively, brief as I can but it’s long which, I appreciate can make it hard to read, but I promise it makes it a bit rubbish to live through too. I’ve put a super quick summary at the end but for more detail keep reading.

My new ‘Health Folder’ as a way to get everything in order and take back some control of how all over the place everything is

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I realised that I haven’t done a health update in a little while so I thought I’d write a post to let you all know where I am – I won’t go in to too much back story, if you want to know what’s got me up to this point then you can see my previous posts, there’s one from August 2016 here, and one from September 2016, here. The post may get a bit long so I’ll write a quick conclusion towards the end just so that, if you don’t have long, you can hop down there and get a simpler version.

Since last seeing my Neurologist I have had nerve testing to, finally, rule out Myasthaenia Gravis and I was pleased to discover that they were clear, so I don’t have that. Previously ruling out MG meant that my neuro felt that it was Functional Neurological Disorder but he’s not as sure, now, and wants me to see whether or not my Rheumatologist believes there could neurological complications with what I potentially have there. I’m not sure if I’m going to be signed off from my neuro, but for ┬ánow I’m not seeing him but if the rheumy stuff doesn’t bring answers then I’ll go back and ask again.

Regardless of what’s happening – There’s good things in life

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This is quite an unusual sort of post, for me, but an undoubtedly interesting one. As a sufferer of a number of chronic health conditions anything health related is intriguing and the idea of kits that test you from home are something that really caught my attention.

I was asked if I’d like to trial an Osentia home testing kit, which tests you for your risk of fragility fractures, a strong sign of osteoporosis. I’m not, as it happens, in the high risk category for osteoporosis; people’s bones begin to weaken in their mid 30’s and then risk increases as women reach the menopause. As such I was pretty sure that my test would give me the all clear, but considering there are so many things wrong with my body at the moment I thought it was a good chance in which to rule something else out!
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Oh now, how funny is that, I thought I should write a quick health update and wondered how long it had been since my last one. Popped over to check and it’s a month to the day, talk about timing. I have some more information regarding my neuro stuff, and after the photo is some information about the new condition that may have come to light (I kid you not). 

If you read my last health post, here, you’ll know I was facing a difficult fork in the road in which I may’ve had a health issue which was scary but treatable or one which is a little less scary but not treatable. Well I got my blood test results which told me it was the second of the two, still scary but not potentially fatal, but no tablets to help. 

How do I feel about that? Pretty numb right now, to be honest. I am seeing my neurologist in a few weeks and I will be running through things with him. I’ve been informed that it’s possible to still have the former condition, with negative blood tests, so I may see what his thoughts are on further testing (it involves needles and electric currents and anyone who knows me knows needles are a big big phobia of mine but if it helps get this all cleared up then I’ll do it). So I think I probably have my answer, but I’m going to hold off from explaining more as there’s still a chance there’s more to go before confirming for sure. 

Flower as a filler, isn’t it pretty!

So, anyway, yes, I got my blood test results which said I didn’t have one of the two neurological conditions. But the tests did show inflammation in my blood which may just have been some sort of infection (even just a mildly infected cut on my hand). A few weeks later, though, I developed a rash, on my face, in the shape of a butterfly. Anyone who knows anything about chronic health knows that that can signify the autoimmune disease, Lupus. I have a whole list of other symptoms which would tally with Lupus, and it would also explain inflammation in my blood. 

Hopefully it’s just a random rash, but I saw a locum gp who was absolutely fantastic (she really listened, she was ever so caring and really wanted to help) and she said that she thinks it is Lupus too. So, guess what? Yup, waiting for more blood test results! 

I am already seeing a rheumatologist in November to discuss some other things so, if blood tests do indicate an autoimmune disease then, hopefully, that appointment can be brought sooner or, if not, I can discuss this with them then. They’re going to love me, haha, I already had two things to discuss and now maybe one more.

So  yes. Neuro stuff is partially answered, but also maybe not. For now I am accepting that it’s FND but going to nudge for the chance of the further testing, just to put my mind at rest, regarding the MG. And now we’re on to the territory of autoimmune diseases. Hopefully my rash is random and my new symptoms could be explained by one of my original conditions but, for now, it’s more of the waiting game. 

Sorry, bit of a non-update, but another explanation as to why I’m a bit here and there and all over the place at the moment, It’s hard to get any real focus when your mind is taken up by all of these maybe’s, by things that could potentially be life changing or could be nothing at all (the neurological stuff is definitely something, but the autoimmune could still not be). 

I really appreciate the understanding of the friends that I’m a bit absent with. I appreciate the understanding of the companies that I’ve been trialling products for. And I appreciate all the lovely supportive comments from people, both longer standing friends and readers who I’ve not come across before. 

Thank you

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