Learn why I am feeling disconnected from my fibromyalgia diagnosis
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I’ve been wanting to write this post for a couple of weeks but each time I start to write, I stop. I worry that if I write it, it will alienate me from you. I have been blogging about fibromyalgia ever since I got my fibromyalgia diagnosis in 2013. Recently, though, I’ve struggled to write about it.

The reason is that I am starting to feel disconnected from my fibromyalgia diagnosis. And, it scares me to write that. It’s been part of my life for so long. But, I’m beginning to feel like it doesn’t fit anymore.

my fibromyalgia diagnosis

For anyone who doesn’t know my story, I was diagnosed with fibromyalgia in 2013. This diagnosis came after two years of suffering from symptoms and being told that there was nothing wrong. My fibromyalgia diagnosis was like a lightbulb moment. Suddenly, everything made sense!

I was content knowing that I finally had an answer to my problems. I put my focus into improving my life with fibromyalgia and learning how to live with it. Then things changed for me. I started to get new symptoms.

Learning I had Lyme Disease

My health deteriorated to the point where I was bedbound by the autumn of 2014. I was suffering from horrific fatigue, I felt so ill and flu-like, plus I had an array of other symptoms. My life changed completely and I lost my independence.

Long-story-short, I eventually found out that I had Lyme Disease in September 2016. Last year, in October 2017, I had stem cell treatment at Infusio, Frankfurt. This treatment was to repair the damage caused to my body from years of living with Lyme Disease.

How stem cells have helped my pain

What I didn’t count on, was just how quickly this treatment would help to ease my fibromyalgia pain. For the past few weeks, I have felt very disconnected from my fibromyalgia diagnosis.

I am 10-weeks post-treatment and recently my all-over, constant, draining fibromyalgia pain has not been present. Sometimes, I am not in any pain at all.

That’s not to say I am not completely free from pain, though. I do still experience pain, but it tends to be localised, it changes in location and it’s not there all of the time. This fits more with Lyme Disease.

I am sure as I go through healing I will continue to experience pain. But, the change in how my pain feels has been incredible.

However, this change has made me feel distanced from my fibromyalgia diagnosis. How can I say I have fibromyalgia if I don’t experience the defining feature of the condition?

Feeling a disconnect with my blog

For me, this is obviously a massive positive. But, it’s also strange. I’ve built up a blog that revolves around writing about chronic pain and fibromyalgia. And, I don’t know what to do going forward. At the moment, I feel disconnected from this blog too.

I worry that people won’t take me seriously if I write about fibromyalgia if I no longer fit that diagnosis myself. I worry that people will no longer be able to relate to me and what I write. I worry people will decide I never had fibromyalgia in the first place (since we are told it is a life-long condition by doctors) and therefore I am in no place to be writing about it.

I realised though, that, at the end of the day this is my blog. It’s up to me what I write about and it’s up to you to decide whether you want to read it. Though I feel distanced from fibromyalgia right now, I am still sick and recovering from Lyme Disease (and the CFS it has caused).

I, therefore, still have a lot to write and share about chronic illness. And, I will continue to do so. But what about fibromyalgia?

Where I see my blog going in 2018

The truth is, I’m not sure if I will want to continue to write specifically about fibro. I think the thing about my blog is it revolves around my life. It will continue to grow and evolve as much as I do. My life has changed so much since the day I started writing. And, so has this blog.

I feel like I have backed my blog up into a niche topic and, in some ways, this has quashed my creativity. Going forward, I can see what I write about changing. I may continue to share helpful information about living with chronic pain if I have something worth saying. But, it might be something entirely different.

Right now, I honestly don’t know. All I know is that I will only be writing about things I feel passionate about. I want to write enthusiastically and share my thoughts without worrying about whether it fits into a specific niche.

I will continue to write honestly

Whatever I write, the one thing I can promise is that I will continue to share my honest thoughts. Honesty has always been at the forefront of my writing.  I, therefore, felt I needed to share how I’m feeling at the moment with you.

I’ve found it hard to put into words and I apologise this post has been a bit rambly. But, I feel it would be weird to move forward with my writing without sharing this.


Have you ever felt disconnected from your diagnosis? What are your thoughts? I’d love to have a discussion about this with you in the comments.

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24 Comments

  1. I have a question. A lot of people that I’ve talked to with Lyme think their diagnosis with Fibro was actually just their Lyme disease. Do you think that could be your case? I’m so glad how much this treatment has helped you. As someone with Lyme disease, this gives me a bit of hope. 🙂 I also HOPE you continue writing about chronic pain in some form, but I don’t think you have to feel confined to write about just that. Write about whatever your passions are! xx

    • Hey Chelsea. That’s a good question. The answer is I don’t and won’t ever know. But, I have a couple of theories about it. The first is that Lyme Disease has been the underlying cause of my fibromyalgia and CFS symptoms all along. And, my immune system was compromised enough in 2014 for it to really take hold and cause the severe deterioration in my health.

      The other theory I have is that other infections were causing my fibro and CFS symptoms initially (not helped by things like gut problems, stress etc). Then I was infected with Lyme & co in 2014, which was the straw that broke the camel’s back so to speak. My immune system couldn’t cope and I got really sick.

      The one thing I am certain about is that my Lyme would have been diagnosed much earlier if I wasn’t first diagnosed with fibro. Every new symptom I developed was blamed on fibro and this definitely got in the way of me being diagnosed properly. I do feel strongly that everyone with fibro and CFS should consider the possibility of Lyme Disease.

      Thank you, I think I might continue to write about it if there is anything I feel passionate about. But, like you say, writing about what I am passionate about will be the key 🙂

  2. I feel really disconnected from my diagnosis as well, which is interesting because I have another chronic illness that defines my life pretty radically. I am on LDN and it handles my pain almost completely. My fibromyalgia is, simply, not me. It’s like a bad knee – it springs up from time to time. I know that’s because of my medication, though; I’ve gone off of it for a week and was sidelined pretty badly.

    Live your life honestly and authentically. Be happy that your pain is handled. That’s where I’m at.

    • Hey Savannah, thanks for sharing your views. I like what you say about living honestly and authentically. I think that’s exactly why I wrote this post. I am thrilled with the improvements I am seeing but it’s made me really think about this blog and where I am at. Did your fibromyalgia diagnosis come before the diagnosis of the other illness?

      • Sorry, super late response to this because of a death in the family.

        No, my fibromyalgia came after my other chronic illness. And actually, in the last few weeks, they’ve sort of swapped because my pain ramped up due to the stress of the death in the family. Joy! “Chronic illness” as an umbrella might just be what I’m dealing with and not necessarily the specific one.

        • Hi, Savannah. I am so sorry to hear about your loss. I can appreciate that stress will have negatively affected how you feel. There can be so much overlap that sometimes individual ‘labels’ are difficult.

  3. Hello. I started following you when I was diagnosed with fibro. I knew something was wrong with me but doctors wouldn’t listen. Once I got a diagnosis I went to the internet to find answers. There are days sometimes months that I feel great but the flare ups are a reminder that I’m not well.
    I would say blog about anything you want but do continue blogging about your journey with fibro or lyme. If one day you are pain free it will only be inspiration for the rest of us. ????

    • Hey Fabi! Thank you for reading my blog and for your encouragement. I fully intend to keep writing about chronic illness and my recovery from Lyme and CFS. I’m just not sure if I’ll specifically write about fibro going forward but we will see 🙂 It will depend on whether I feel I have anything to say. I really hope that people feel that way if I do get to that point. But, I guess my worry is people won’t realise all that I’ve been through and jump to their own conclusions. I have seen that there can be a lot of negativity on the internet towards people who have recovered. So I guess a part of me worries about that. It’s probably silly of me though. I’m definitely an over thinker!

  4. Hello Donna, please don’t give up writing about jour journey;whether you write about Fibro or not. You are such an inspiration. I love reading what you have to say. It’s like having the next instalment of a novel that I encouraged you to write ages ago. The element of chronic fatigue within the Fibro is more of a problem for me, though the pain is still there all over my body ; admittedly it’s not severe everyday but it’s there nonetheless. I am seriously considering obtaining tests for Lyme disease, though my doctor is not open to this idea when I broached the subject., he said there is no cure for Lyme! I also want to say that doctors do not know everything! There are so many avenues to explore in getting as well as we can be or even a cure. Just because the NHS doesn’t deem it possible to treat or cure our problem doesn’t make it right.

    I have tried conventional treatments, which I hasten to add have made not a jot to my symptoms and have only caused more problems. I am trying all things to be well. I use essential oils with Laser therapy on my joints. If I could afford more regular treatments with the laser then I truly believe I could be free of pain altogether! So good luck to those who have found relief by whatever means available to them. God bless you. X

    • Thank you so much for your kind comments and support Josephine. I will keep writing about my health journey. it’s more that I don’t know if fibromyalgia will be a specific focus for me. I think it will be more Lyme Disease, CFS and chronic illness in general. That said, a lot of it will no doubt still apply to fibro 🙂 It’s such a shame that your doctor is not supportive. To be honest, it’s odd to hear that your doctor’s view is it can’t be cured as I hear from too many people that their doctors in the UK think that a short course of antibiotics is sufficient and chronic Lyme doesn’t exist. To be totally honest with you, the ELISA test that the NHS use is not the best. I’d definitely look further into Lyme though. The book ‘Unlocking Lyme’ by Dr Rawls is very good. I’d recommend giving it a read. If you want to pursue testing out with the NHS, I’d recommend looking at armin labs in Germany. If you read this post by Spoonie Sophia, it will give you more information on how to go about that. There are lots of tests they offer for Lyme and different co-infections, which can be overwhelming. The elispot for borrelia would be the starting point 🙂 I think it’s great that you are thinking outside the box and realise the potential of different treatments. It sounds like the laser is doing good things for you. I really want to try essential oils. Once I am into the next phase of my healing with stem cells I am going to look into it (right now the motto is less is more :)).

  5. I write a lot about FM as well. But I also have a joint hypermobility syndrome diagnosis from when I was a kid… and it causes pain, fatigue, insomnia and comorbid conditions. I often question whether I have FM or not, or both. And it is really hard to say one way or the other to be honest. But I do know doctors will at least treat me for FM since they have no real experience or knowledge about joint hypermobility conditions, aside from the fact they make you hypermobile. And that means at least that diagnosis gets me somewhere in regards to treatment. I am on tramadol which is used for both. Exercise, which is recommended for both… very carefully for the hypermobility though. I do have FM characteristics and it is comorbid with hypermobility syndromes, so I could have both. But I do wonder at times. As a result sometimes I just blog about chronic pain, in general, and chronic illness, in general.

    • I can imagine there must be such an overlap of symptoms it would be hard to know what is causing your pain. The good thing is that, regardless of what is causing it, you are getting treatment that helps. I think I am also feeling this disconnect because my fibromyalgia got in the way of me getting the right treatment for a long time (everything was blamed on it rather than realising there was more to the story). But, at the end of the day, so long as I am getting the right help now it doesn’t really matter what the label is I guess. I think I will be doing the same as you, focusing on chronic pain and illness in general rather than it being specifically geared towards fibro.

  6. This disconnected thing feels unfamiliar, but it’s really wonderful. You’re moving. My son died 16 years ago. Two years ago his birthday went by without me noticing. Freaked me out. But you know there are stages of grief and stages of illness. We can grieve the depths of our disability and pain while we move to a different stage. Donna, you are a really good writer. I hope you keep blogging. About anything. You have that great survival ability to float above your pain and miseries and look for patterns and share what you see. Keep doing it. Maybe less about fibro and more about life and love and family. You have a refreshing sense of humor and sense of the absurd. Keep seeing it and writing about it. I’m reading you now damn it.

    • Hey, Danny. Moving forward is a really good perspective and I think you are spot on there. I’m so sorry to hear about your son. I can imagine that specific dates would hold a lot of grief, so as much as it freaked you it I see it as a positive thing and I hope you do too. You are so right about the different stages of grief. There are a lot of emotions that are involved in chronic illness and I’m continually processing and working through them. I will most definitely continue to blog and thanks so much for your kind comments. It will very much be more geared towards my healing and things I am passionate about. Moving forward it will be chronic illness, in general, more than specifically about fibro. I think, though, that this will be a positive thing in the end and I hope it will free me up more creatively 🙂

  7. I feel disconnected from my fibromyalgia diagnosis too. After much effort I pushed for some kind of answer as to why I had body pain and CFS, and fibromyalgia seemed to be a catchall diagnosis by the doctor. Something that sort of fit so I could have some kind of answer and go away. But was it really helpful? Not really. My pain is transient and not always symmetrical. Some days it is worse than others. But was it pain due to a problem with my nerves? I now know it is likely pain due to gut issues and malabsorption. I think, like you, the actual root cause of “fibromyalgia” varies and the solution will be unique. I think more and more people are discovering that their symptoms are caused by something like Lyme Disease, thyroid, autoimmune, adrenal issues, etc. All of these things manifest differently for individuals and doctors struggle with this. The reality is there is not a one size fits all in diagnostic criteria. It takes an open-minded and experienced physician to think outside the box. Such a thing is rare in the United States as I’m sure it is in the UK.

    I think for many of us, we are on a journey of health and healing. Our stories will evolve and your story will evolve. Please keep sharing, we are traveling with you.

    • I think that you hit the nail on the head there when you talk about whether your diagnosis was helpful. In some ways, it has been a hindrance to me because it stopped me from learning I had Lyme Disease (all my symptoms were put down to fibro). I absolutely agree that the root cause will vary for each individual too. For me, it has been infections and the resulting damage to my immune system etc. For others, it could be completely different. I wish there were more doctors who looked outside the box. Unfortunately, the constraints of the medical system here just don’t make that a possibility. Thank you so much for your comment 🙂

  8. Dear Donna,

    It’s something I’ve thought of and worried about as well! Mine is more of – I set up my blog because I also wanted to get back in touch with what I love, i.e. writing, and was worried it was purely selfish.

    Here’s a question that helps me out though: “What can I do to help others through my blog?”

    Even if you’re feeling better (and I’m super happy to hear that!!), that doesn’t discount the experiences and scars you have earned. Neither does it mean that your experiences and knowledge from them are no longer valid. If anything, they’re even more valuable because you are living proof that *something* worked!

    I truly hope to stay in touch with you – doesn’t matter if your blog angle changes. Change is a natural part of life anyway so that’s great 🙂 xx

    • That’s a great question and definitely one I aim to do. I think I do want to get back to writing a little more for me too and finding a bit of a balance there 🙂 That’s a great perspective Sheryl and one I will keep in mind moving forward, thank you. I will be continuing to read your blog and I am sure we will keep in touch 🙂 xx

  9. Julie-Ann Henry Reply

    Hi Donna (and all)

    I noticed a while ago you were feeling a disconnect with Fibromyalgia because your focus seemed to be mostly Lyme related. It was interesting for me to follow your journey and thought process…To introduce myself, I got sick in 2005 and was bed ridden for almost a year and in 2007 diagnosed with Fibromyalgia. I have been doing in depth research ever since and was determined to ‘find the cure’. Needless to say, I haven’t, because not even the doctors know what really is going on with all these chronic illnesses. I have noticed a huge increase in Lyme Disease diagnoses and I have to wonder…is this just another label given to us because nobody knows for sure what is going on? Is my Fibro really something else? Then I realised…it doesn’t matter…whatever label you give it, your body is not well, it is in a state of dis-ease, so I focus on healing from (chronic) illness/disease, and as and when the symptoms come up I deal with them in as natural a way as possible. There may be many questions in life we will not be able to answer or put a name to and that’s ok. I think in the end we all have to go with our gut (and that’s a good place to start re healing lol) and do what we feel is right for us and our health. While we all have chronic illness/Fibromyalgia/Lymes/whatever, we most likely got to that state through a combination of different choices/actions, so it makes sense that our healing journeys will differ. In the end I think it’s being the happiest, strongest version of yourself at that moment that counts…
    Thank you for your honesty and don’t worry about the labels. As you say, this is your blog about your journey 🙂 enjoy it xx

    • You are very observant Julie-Ann. I have been feeling this way for a while and, I guess, it’s stronger now that my symptoms are changing and improving. It didn’t feel right to write about it until now and I am glad that so many of you have been understanding and supportive. I would bet my money that a number of people diagnosed with fibro have Lyme Disease, particularly those whose health has progressively declined. I don’t think it’s the case for everyone though and I never like say much on it in case it sounds like I’m pushing some sort of agenda. I do think that it’s worth people educating themselves about Lyme though. I will say that, unlike fibro that has no definitive cause, there is one for Lyme Disease– the bacteria Borrelia burgdoferi. The unfortunate part is that Lyme tests are not very reliable. And, there’s is also a bigger picture that needs to be looked at. For Borrelia to make someone really sick, they have to be immune compromised. Which ties in with the state of disease you mention. But that’s a whole other blog post in itself 🙂

      You are right about labels, though. So long as you are getting access to treatment that helps you (whether that’s natural supplements or something else) it doesn’t really matter what the label is. A diagnosis is only a starting point. Listening to our gut (and healing it :)) is a powerful thing. My intuition and curious/questioning mind is what drives me and keeps me moving forward. I’d be silly not to listen to it.

      P.S if you do want to read more about Lyme, I’d recommend a book called “Unlocking Lyme” by Dr Bill Rawls. The basis of the book is what you share here– healing from a state of disease. It’s a really interesting read 🙂

  10. Hi Donna,

    Thanks so much for writing this. I’ve thought about this alot too. Through hard work my pain is mostly under control except when I have flares unexpectedly or under stress. And I went through a period where I noticed my writing on fibromyalgia changed. But I think it’s still important to share because everyone is at a different place in their own journey and we never know who will benefit from us sharing our experiences. I struggled with knowing what to blog about when things evened out and got a bit better. WhenI was first diagnosed, fatigue and pain were my primary worries. Pain is still there, but now it is mainly debilitating fatigue but also IBS issues have become more prominent… It’s like that with chronic illness isn’t it? up and down, down and up. What matters is you blog honestly, and that means everything x

    • Hey, Alisha! It’s great to hear that your pain is mostly under control. I definitely feel it is easier to write about it when you are in the thick of it. But, you are so right. We are all in a different place and that’s okay. Like you say, we never know who may benefit from us sharing our experiences. Chronic illness is definitely a roller coaster ride for sure! x

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