For a long time now, I have used the analogy of a broken puzzle to describe recovery from fibromyalgia and CFS. Discovering what each individual puzzle piece is and finding a way to fit them all together is how I visualise rebuilding my health.
I have made a lot of progress in the last 18 months and I have thankfully found strategies and therapies that have helped me to identify and piece parts of my puzzle back together. However, for a long time now, I have felt as though there was a piece missing and I had no idea what it was.
All I knew was I felt as though my recovery had stalled and I had no idea how to start moving forward again.
Please note that there is an update to what I have written in this post at the end of the article
Stalled in my recovery
Although I completely appreciate that any forward progress is a privilege, I found myself feeling frustrated that my recovery had stalled. I also feared that I had perhaps progressed as far as I was ever going to.
I had made good progress with a lot of my symptoms; many had decreased in severity and frequency, with some no longer being an issue for me at all. My sticking point seemed to be related to poor stamina and unrelenting fatigue.
Although these had improved compared to my starting point, they were ultimately the reason why I felt I had stalled. Due to these symptoms, I couldn’t seem to progress any further than I had. And the most frustrating part about it was I felt like I was capable of doing more than I was actually able to.
As I mentioned in a previous post, my frustration surrounding my situation was the reason I decided to try Hyperbaric Oxygen Therapy (HBOT). I had hoped it would be the catalyst I needed to start moving forward again but, unfortunately for me, it did the opposite and I experienced a big setback.
On top of experiencing a flare-up of all of my usual symptoms, I also experienced a lot of problems with my chest and lungs and these persisted even after I had recovered from my flare-up. I was finding I was getting out of breath really easily, I developed a dry cough, I felt irritation in my lungs, my chest could felt tight, sore and– at its worst– it honestly felt like someone was sitting on me and crushing my chest. By nighttime, I also had developed a slight wheeze most nights.
Now, I think it’s important to say that I have no idea if the HBOT had anything to do with this. It could have exacerbated these symptoms, but equally, this all happened as we headed into summer so there could have been many factors attributing to my symptoms.
If I am being totally honest, I have suffered from breathlessness to one extent or another for a long time. When my health crashed in 2014, leaving me essentially bedbound, I would get breathless from simply trying to get out of my bed. The only time I would, therefore, get out of bed (with the help of my husband) was to do a slow, agonising shuffle to the bathroom. I used to say I was so lacking in energy that even breathing was difficult!
At the time I remember it felt like someone was literally sitting on my chest, similar to what I experienced recently. However, my whole body kind of felt that way. I could also experience pain and irritation in my chest but not once did I think it was anything beyond fibromyalgia/CFS.
I did bring it up with my doctor but I didn’t make a big deal of it (poor communication on my part) and nothing was ever said. I think because I was so poorly with fibromyalgia/CFS a lot of my problems were put down to the fact I was very de-conditioned.
Visiting my GP and a new diagnosis?
I made an appointment with my GP to discuss these issues and after listening to my chest and getting me to perform a peak-flow test, he suggested it was a possibility that I had asthma. Interestingly, it states in my medical records: “1992- asthma resolved”.
Neither I or my mum have any recollection of me being diagnosed with asthma. I certainly never got an inhaler or was treated in any way. This probably worked in my favour though as it was a very straight-forward appointment.
I was told to make an appointment for a lung function test and was given a blue reliever inhaler to use anytime I felt wheezy or chesty in the meantime. My GP said that if I had asthma, the blue inhaler would help and if I didn’t, it wouldn’t make any difference to me.
I have to say, using this inhaler made me feel so much better. My brain then went off at a hundred miles an hour pouring over the possibility that asthma had been my problem all along. What if I had been oxygen deprived and that’s why I crashed? What if I didn’t have CFS?
That was answered very quickly when I stupidly went and overdid things and had to pay for it with post-exertion malaise (PEM) over the following days. Although I don’t think asthma played a significant role in the decline of my health, it certainly hasn’t helped and it has certainly put up a block for me progressing and moving forward now.
Lung Function Test
I had my lung function test a couple of weeks ago, which I found totally exhausting. This involved breathing into a machine; first normally to establish a baseline and then as hard and fast as I could multiple times. Although I wasn’t very chesty that day, I sounded like a seal barking when I breathed out!
I was then given Ventolin (blue inhaler) to see if it made a difference to my breathing. My results were all within normal range but the Ventolin did seem to make a slight positive difference and so my test results, combined with my symptoms, led to me getting an asthma diagnosis.
I was prescribed a preventer inhaler (brown inhaler) as I had been reliant on my blue inhaler enough to suggest that my symptoms were poorly controlled and I had inflammation in my lungs.
My hopes going forward
I certainly feel like I am finding things much easier to do than I did prior to my asthma diagnosis. I am therefore hopeful that discovering this puzzle piece will help me to move forward in my recovery.
That being said, I need to be careful and not get too carried away, even if I am feeling well. I still need to remember that I have energy limitations and stepping out with them will result in me experiencing PEM. It is going to be important to continue building myself up slowly; consistency over intensity will be key.
Pin for later:
During the first week I used my preventer inhaler, I felt like I was feeling a positive difference. However, after around a week to 10 days I was all of a sudden floored with really bad fatigue. I felt very unwell and assumed that I had picked up a virus. I even had a few days where my breathing was pretty bad, so I concluded I must have had a respiratory virus, which in turn was flaring my asthma.
Long-story-short, my symptoms did not improve and I continued to feel awful for a further couple of weeks. I then got oral thrush, which frustrated me as I had always been religious about rinsing my mouth and brushing my teeth after using my steroid inhaler. It was at that point I twigged that perhaps it wasn’t a virus and that I was actually having a bad reaction to the preventer inhaler.
I stopped taking it and the following week I had a review appointment with my GP. He concluded that I probably didn’t have asthma, given the reaction I had to my inhaler, plus the fact my lung function test results were all within normal range. He suggested that my breathing issues may have been due to a virus in the first place or an environmental trigger.
He suggested I keep my blue inhaler handy, monitor my breathing going into winter (the cold, damp weather would be a trigger for asthma) and that I should see him again if I experience any difficulties.
Unfortunately, all of this caused me to suffer a big setback that took weeks to get over. However, one of the positives to come out of this setback is that it prompted me to have a consultation at Breakspear Medical. Following this, I learned that I actually have an active Lyme disease infection. Silver linings and all that, although this one wasn’t a very welcome one!