If you are new to my blog, my name is Donna and I have lived with Fibromyalgia, CFS and Lyme Disease for a number of years. In October/November of 2017, I received stem cell treatment at Infusio in Frankfurt. I’ve been documenting my treatment and progress on this blog.
Find all of my Infusio posts here.
Life got in the way so I’m a couple of weeks late writing this post. The 1st of August marked 9 months since I received my stem cell treatment at Infusio, Frankfurt. Time is certainly flying by!
In my last update, I shared that I had a really good month in June but that I’d had some symptoms crop up as I headed into July.
I didn’t go into it too much in that post as I had hoped they would pass in a few days. However, they actually stuck around for about three weeks.
The Symptoms I Dealt With in July
The symptoms started suddenly, though I did have a few little warning signs in the week prior. I always find that I get pins and needles, tingling and electric shock-type feelings in the run-up to what I call a ‘healing crisis’.
This time my neurological healing symptoms were mostly GI-related. I remember that they started on a Wednesday.
I woke up feeling heavy and tired that morning and I decided I needed to take the day slowly. By late afternoon, I had a bad headache and went to my bed.
Things Got Progressively Worse as the Day Went on
I remember being a bit comatose when my husband got in from work at around 6 pm. It had been a while since I’d been in full “zombie mode” so I assured him that I was okay and that I’d probably be fine after getting something to eat.
Before he could even bring my dinner to me, the room was spinning. I had vertigo and felt very nauseous. I couldn’t lift my head off the pillow.
It was horrible.
Luckily, I was able to get to sleep and— though I was still dizzy— the vertigo was gone by the following morning.
My Symptoms Fluctuated Over The Following Weeks
What followed was around 3 weeks of fluctuating symptoms. Some days were worse than others and symptoms could even vary in severity within the same day.
I could start the day feeling lousy but have the symptoms ease off by the evening or vice versa. There was no rhyme or reason to them and I just had to go with the flow of things.
My symptoms included feeling fatigued, heavy, off-balance/dizzy, unwell and I was nauseous most of the time with occasional stomach cramps (regardless of what I ate).
I also had some bother with my ears again; they were painful at times and occasionally I’d experience reduced hearing in one for a short time.
The most concerning symptom I had during this time, though, was that my resting heart rate dropped. There were a few times over a 48 hour period where my resting heart rate was down to 47 and I felt unwell.
47 is about 10 beats per minute lower than what’s normal for me. I have no idea what that was all about but it thankfully passed. If it had continued I would have got myself checked out for sure.
Keeping a Positive Mindset
In the name of staying positive, I told myself that all of these symptoms were a sign of my vagus nerve repairing. Don’t ask me why I thought this because the answer is very woo— it was just something that popped into my head and I decided to go along with it!
In all seriousness, I think this thought came to me because I’d read a lot about neuro repair and the involvement of the vagus nerve. Whether or not my vagus nerve was repairing, though… who knows?!
Either way, thinking in this way helped with my mindset and stopped me from worrying about my symptoms.
As they were slowly getting better I didn’t feel I needed any help or reassurance from Infusio. I simply allowed whatever was happening to ride its course.
Patience is honestly one of your biggest allies when healing.
An Additional Problem
What didn’t help during this time was that I also got a UTI (no idea if this was related to everything else or not).
It wasn’t something I was willing to try natural remedies with (as I’ve had a horrific experience with a UTI in the past) so I got straight on the phone to my GP and I was prescribed 3 days of antibiotics.
I really don’t like antibiotics as they knock me for six and leave me feeling pretty terrible. I don’t tolerate them well at all but I knew this was the best thing for me to do.
I ensured that I had a restful few days while taking the antibiotics to allow my body time to fight the infection and recover.
Bad Days Are Nothing Like They Used TO be
The important point I want to make here, though, is that— even though there were many “down” days during July— I wasn’t completely incapacitated.
I did spend a couple of days in bed while I was taking the antibiotics (simply because they made me feel so wiped out) but otherwise I’d get up and just take the day slowly.
Sure, I didn’t feel great at times and it sucked. But I could still get out of bed and function. There were days where I could even go out and do stuff despite feeling crappy.
So, even though it wasn’t nice to experience, it’s still progress and pales in comparison to what it was like living with Lyme. There’s just no comparison really!
I also had the odd “good day” within this time period when my symptoms subsided and I got a little break from them. I took advantage of these when they happened and did some amazing things (which I’ll list at the bottom of this post).
Questioning Hormone Issues
This month, I also started to question if I could have problems with my hormones. I’ve been tracking my symptoms for the past few months and I’ve realised that my highs and lows seem to correlate with my monthly cycle.
Latterly, I’ve been getting really bad PMS symptoms too. From a few days before and throughout my period, I am completely exhausted (which incidentally feels different from CFS/Lyme fatigue).
I’ve also been really grumpy and irritable, experienced sleep disturbances and had painful cramps. Such a joy!
Wee side note: sorry Ross and Mum for having to deal with me haha!
I got in touch with Infusio to ask about this and I was advised to recheck my hormones. I was told that if the ratio of oestrogen to progesterone is out of whack, this could be causing my symptoms. I’m planning on checking these through Medichecks soon.
I’m hopeful that if I get to the bottom of this issue my health may become more stable. Fingers crossed anyway!
Getting a Reprieve From Symptoms
Heading into August, I got a reprieve from the above-mentioned neuro healing symptoms and I’ve actually been pretty busy! It’s been amazing to be able to say yes to things and not have to worry about it.
I’ve had days where I’ve been out for a few hours and my health hasn’t even crossed my mind, which is something that could honestly make me cry with happiness.
Admittedly, I have been pushing myself a bit much, though, and I’m feeling it now. When I’ve overdone it, I tend to feel a little flu-like, fatigued and I get a lot of pressure across the front of my head and sinuses with a sore throat.
I feel as though I’ve exerted more energy in these past two weeks than what was in my body’s reserves. So, right now, I’m taking things easy and allowing my body time to recover and play catch up.
Ideally, I shouldn’t push myself so hard but in a way, it’s been amazing to see how much I’ve been able to do.
I obviously don’t recommend this and it goes against the advice I would hand out. But, I guess testing the boundaries every now and again can be quite insightful.
My body is definitely a lot more resilient now than it was before I had treatment at Infusio. It’s helped that I’ve been able to build up muscle and that I’m now much fitter (though still a lot to work on there!).
One big improvement I’ve noticed in the last few weeks is that— despite everything else that’s been going on— my cognitive function has improved a lot.
I’m remembering things much better and long-term memories have come back to me too. That last point is such a relief and makes me so happy because I honestly couldn’t remember anything for so long!
And, as silly as this may sound, I’ve been forcing myself to do things like basic maths simply because I can do it now.
Before, even trying to do the simplest of sums felt impossible. My brain would just go completely blank and I’d feel like such an idiot.
I still have days where I’m forgetful or muddle up my words. They just aren’t as common and things don’t feel so foggy anymore.
Things Are Pretty Good
Overall, life is still good despite the blips and challenges I’m experiencing at times.
I’m always someone who likes to put things into perspective (as it’s easy to forget where you’ve come from). Years ago when I was at my worst, I’d have given anything to feel like I do now (even on my “bad” days).
It’s like night and day and, for that, I’m so grateful.
I wouldn’t yet consider myself to be in remission/fully recovered but I definitely feel like I’m headed there. My symptoms used to be all-consuming and I had to constantly consider my health in every decision I made.
Now, I feel as though my health issues have been pushed to the footnotes. Rather than being a huge part of me, I visualise my chronic illnesses as being much a smaller and separate entity to myself.
Sure, I still have to think about it at times but I can go through my day-to-day life now without really having to worry about how I will be affected. And, that’s everything to me.
I honestly feel like I’m gaining so much of myself back and it’s been truly wonderful to experience.
My Achievements This past Month
As I’ve chatted a lot about neuro healing symptoms in this post, I thought I’d finish it positively by also sharing some of my achievements from July and the beginning of August:
- At the beginning of July, I went to see a musical with Ross and spent a few hours in Edinburgh before even going to see the show.
- I’m learning a new hobby and have had a couple of lessons (more on that in a future post when I’m ready to share).
- I saw the comedian Russell Howard at the Edinburgh Fringe Festival. This was a big win for me as normally I’d be at home missing out.
- I also had another couple of trips through to Edinburgh with my Mum where we went wedding dress shopping with my sister-in-law-to-be (very exciting!).
Moving Forward into Month 10
My plan going forward is to take my foot off the gas pedal and have a chilled out few weeks. I have a trip planned in September where I’ll be away for a few days and I want to make sure I’m feeling as strong as possible for that.
Despite the ups and downs of symptoms, I have really been enjoying my summer. It makes such a huge difference to finally feel like I am participating in life and doing the things I want to be doing.
- How my symptoms have changed in the 100 days after stem cells
- Stem cell therapy for Lyme Disease at Infusio: Procedure day
- Why I’m feeling disconnected from my Fibromyalgia diagnosis
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