Tuesday, 13 April 2021

FMT and ME: Part Four what happened next?

For the longest of times, my body just felt like it was going downhill. Sometimes it plateaued but even then I felt like I was fighting to keep it level before eventually heading into a downward spiral again, again and again. However, over the last couple of years, things have changed for me, thanks to trialling a treatment called Faecal Microbiota Transplant.


 The simplest way for me to describe the overall way my body has been feeling, since embarking on this treatment path, is that I started to feel more like the Rebeccah I used to be. This sounds strange, even to myself, as it is not like I have never not been 'Rebeccah', but for at least the last decade I did not feel like myself physically or mentally. I have felt this change in my body, a sense of recovery, since starting FMT. If you haven’t read my other posts in the serious you might want to check these out first: FMT and ME: A Bit on the SideFMT and ME: WhyFMT and ME: Part Two Trying To Fight Back and FMT and ME: Part Three Did It Work .


If you have read parts 1, 2 and 3 of my FMT and ME series you will see that I have made some physical improvements. But how has getting better physically manifested itself? How have any, some or all of my symptoms been affected?


Realistically it feels like quite a few of my symptoms have changed in a small way. The biggest thing that has changed is my energy levels - they have increased. Everything I usually do in my day-to-day life recently became a little easier some of the time. From sitting up in bed for longer periods, to coping with longer TV programs/films, to using the microwave, these things got easier.


Another important and hopefully permanent change was my delayed post-exertional-malaise (PEM). In my opinion, it is a key component to diagnosing M.E. and has a huge impact on all sufferer's lives. Other smaller symptoms (listed below) started to make improvements in July/August 2017 but I only found my PEM changing maybe a year on from then. I noticed the payback for things like being out of bed on the sofa for a little bit was still hitting me, but not as badly or for as long as before. I believe the improvement in this symptom is key to getting better. If this continues to improve then my quality of life should, fingers crossed, get better with it. Sadly, since initially writing the first draft of this blog post (now about two years ago) I saw this decrease again. I have to come to realise that I was still stuck in a very boom or bust way of life. My mindset had developed to always be pushing to my maximum. Not giving in so when I noticed improvements from the FMT, I pushed a little bit harder and I started to lose some progress and even see extra nerve pain return (although fast forward to now and I have got back on track, that is a story for another day)!

Other symptom Improvements

As I mentioned things were and are feeling easier now, but below are a few things I have noticed marked improvements in:


  • Muscle Power: This increase in energy has also directly affected my muscles. They do not feel any stronger, but I do feel like the extra energy is being sent to them, processed more efficiently and being utilised by them, giving them much need power. For example, an action that occurs a lot for me is lifting and pouring a kettle. It still feels just as heavy but it is easier now. Also, on the odd occasion where I have had to navigate an incline or ledge, I can feel the start of a little more power flooding into my calf muscles to help propel me, which means the pain in my hips and thighs afterwards is lessened and hangs around for a shorter period. 
  • Light sensitivity: I have noticed that I can cope for longer outside of my darkened bedroom and can occasionally take off my sunglasses for a few minutes when I am in a situation that doesn't have the curtains closed.
  • Headaches: My headache pattern and pain is variable but the intensity of the more painful ones seems to have lessened. I still suffer from headaches but they are less frequent, and the average headache is less painful and easier to shift, usually just through rest and painkillers.
  • Anxiety/stress: I have always had anxiety issues and was highly stressed even before I got ill, but I found my stress and anxiety, as with a lot of M.E. patients, got worse as I got worse. Initially, as I started to feel an increase in energy I felt a reduction in my anxiety levels. It was still there on a day-to-day basis at different levels, but it has calmed down overall. I started to feel more relaxed. I found my longed-for 'what will be with be' attitude becoming more and more insight. However, this improvement seemed to be short-lived and 2018 saw my anxiety and stress levels rocket again and I started suffering from low mood. I did manage to get my anxiety under enough control to start therapy sessions to help me deal with my mental health which I am managing over the phone. So I guess overall my anxiety has lowered a little. Although I still struggle with the physical and mental symptoms this creates daily,
  • Car sickness: I cannot quite believe the difference in this one symptom, it has almost disappeared. I used to suffer on all car journeys. I could last about 5 minutes, sitting in the front, on a straight road before I started to feel nauseous. Now, as long as we avoid long winding roads my car sickness is kept at bay. As you can imagine this makes a huge difference to my rare trips out to doctors appointments! Due to this change, my neurological physiotherapist has been able to give me some inner ear exercises to help keep this symptom at bay. I find when I am overtired my car sickness comes back however if I keep practising the inner ear exercises they seem to help me even on the worst days in the car.
  • Brain fog: Mentally is difficult to describe on paper and covers lots of aspects. I have seen an improvement in memory and concentration, allowing me to follow conversations better and watch films with less breaks! However another side of things I have seen improve is my sense of self. This is not depression or anxiety but a different side of mental health. 
  • Sense of self: This side of things is deeply linked with energy production, yet it is often seen just as mental health. When you are chronically ill it can feel like the illness is trying to, and sometimes, succeeding in stripping away parts of you. The illness did not take away my passions, interests, or dreams (some got stronger), but it took away my ability to work towards or achieve them. I just did not realise that for me, being able to work towards something I am passionate about, was a huge part of my identity and personality. I was too unwell to realise this part of me was slowly being diminished. Growing up I had always been that person who knew exactly what they wanted to do, so having that ripped away from me so cruelly dented a part of my personality. With my body now feeling a bit better, my mind can start to focus on things that might make me happy, whether they be new interests, old passions, being more interactive within the chronic illness community online or communicating more regularly with my friends. When you do not feel like yourself, whether you realise this or not, it is hard to engage in ones own passions or dreams and join in with other people fully. This partially a protection mechanism but mostly the inability of the body to spare energy for that side of life, and quite frankly we live in a world where we aren't taught what to do if we cannot be constantly achieving things. Now I have some more energy, even in a small way, it, in turn, helps the mental side of things. The things that make me, me.



 How has this happened? At the end of 2016, I embarked on changing my gut bacteria via Faecal Microbiota Transplant, FMT, and have been continuing the treatment ever since. Have a look at my post 'FMT and ME: Part One Why?' to see more about the decision to embark on this treatment. As I started to feel stronger my wonderful M.E. doctor (who constantly has new things to try and is the one who pointed me in the direction of FMT) started me on a new therapy called low-dose-naltrexone. This works for some people and not for others. In combination with the gut bacteria treatment, I have found it immensely helpful in overall pain levels, stomach pain and general energy levels. I still take this daily and it has had a positive long term effect on my health.

Moving Forward

 In October 2019 I did an FMT that saw the least side effects I have ever had and the initial benefits kicked in sooner. However, as I mentioned already, I realised that my situation was worsening again. I was still stuck in my boom and bust cycle. I do believe the FMT was the way forward to helo me and had gone some way into putting my body into a recovery mode but I was abusing it. Clearly, on its own, it is not going to be the thing that dramatically improves my situation, but I had this deep feeling within in me that if I stop pushing against my body and start pacing, that the two things combined could make a real difference. It would not be honest of me to say that I am not incredibly cross with myself for not realising this sooner. I thought I was getting good at pacing but I realised I am not. And this had to change. So in January 2020 I took the very brave step to reign myself in and stop bringing myself to the point of exhaustion. I am sick of not achieving anything but surviving. I stripped everything right back and worked out what my baseline is. I established what I can do daily without flaring up my symptoms. My body started to build energy reserves and start to heal itself so that I can slowly build up activity levels. Previously to 2020, my whole lifestyle was geared up to be able to leave the house once every 10 days or so. However, I was then worn out and when I had barely recovered from the previous outing I use up any energy I had gained to go out again. The sad thing is I rarely enjoyed my couple of hours of the house, as I was not well enough to be out. I am very lucky that the doctors and medical professionals around me also saw my pacing plan as a good idea and are supporting my decision. I have had some negative push back from those around me but one of the main reasons I have never done this before is because I'm always trying to meet other peoples expectations of me, especially those who fully do not understand or accept my illness see pacing as a negative. And yes, I am a people pleaser, but I am working on that.

New Diagnosis 

Another factor in this decision to try properly pacing is through a new diagnosis of Osteopenia (the pre-cursor to Osteoporosis), which is not great news at all. To reverse this, I need to not only take extra supplements but increase weight-bearing activities even such as being able to walk or stand for longer. I currently only manage between one hour and one hour and a half (broken up) throughout the day out of bed and if I want to increase this I need to build up some energy reserves. I know that by establishing a baseline I will be able to increase weight-bearing activity slowly. If I tried to do it within my boom and bust lifestyle I will cause myself to relapse.

What's next

At the time of writing the first draft of this piece, I had everything crossed that the difference I have noticed in my symptoms will be cemented and continue to improve with the implementation of real, proper pacing alongside continued FMT treatment. I will also be strict with myself and make sure I do my FMT treatments when I need them and not let other things take priority. I will ensure I have the energy for them. I fully believe that for me these are the key to improving my health. I am sad that I have finally had to admit that I'm not going to suddenly wake up 100% better and frustrated I did not realise sooner that I was still booming and busting. However, this realisation, acceptance and scary diagnosis of Osteopenia has made me see clearly that I should have tried real pacing alongside the treatment in the first place. I am trying not to dwell on this as I am one of few people that have tried FMT for M.E. and I am even ahead of a UK clinical trial that is going to begin soon at The Quadram Institue in Norwich, so I have had to do this largely on my own and develop my own treatment plan. It is no wonder I have made many mistakes along the way. 

For me the FMT has absolutely worked in reducing some symptoms, and I have only covered a few obvious ones here, and at the time of publishing this (April 2021), I am still doing FMT at home, although less regularly, and I have no doubt they have helped me personally. Some symptoms have stayed away and any relief from this horrendous illness is worth having!

The next part of my journey has been and is tough, physically and mentally, but highly beneficial. So please wish me luck and support and fingers crossed I can find a way to fit blogging into my baseline activity level to let you know how I am getting on!

(Number of FMTs December 2016 - April 2021: clinic + at home FMTs = 52/ at home FMTs = 43)

Other Posts in FMT and ME Series
FMT and ME: A Bit on the Side
FMT and ME: Why
FMT and ME: Part Two Trying To Fight Back
FMT and ME: Part Three Did It Work

I am not a medical professional and nothing here can be taken as medical or health advice, so check with your doctor before following any information in my blog.

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