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.
The 1st of October marked 11 months since I received my stem cell treatment at Infusio, Frankfurt. I shared a really positive stem cell therapy update last month but, unfortunately, I’ve had a bit of a challenging time since then.
Recovering From A Cold Virus
In my last post, I chatted about my trip to Disneyland Paris and that I woke up with a cold the day after I got back home. I spent a few days in bed recovering from this.
Thankfully, I then began to feel better. I started going back out for walks with my dog the following week and felt I was getting back on track.
My husband Ross and I then spent a lovely Saturday morning going for a woodland walk. After which, we stopped at an organic shop for tea and cake.
I was celebrating the fact that– for once– I had experienced a “normal” cold and my body had fought well to overcome it.
I felt good that morning but, all of a sudden, later in the day I was hit with symptoms. This was not post-exertion malaise like I used to suffer from.
It felt completely different and I knew I hadn’t pushed myself or gone beyond my energy limitations that morning. As soon as it hit, I knew exactly what it was.
The culprit: hormones.
Having A Challenging Time With My Hormones
I’ll admit that I’ve been moaning about hormones for a few months now in my stem cell treatment updates. It really is an area of my health that is evidently out of balance and it’s become obvious I need to do something about it.
To be completely honest, this is not a new issue for me. I think it’s long been there and Infusio actually highlighted this. My endocrine system was top of the list of problems when I had my first Global Diagnostics scan.
Prior to treatment at Infusio, I actually blamed my Fibromyalgia and Lyme Disease diagnoses for my symptoms. When you feel unwell then go through periods of feeling worse, it’s easy to think it’s due to your chronic illnesses flaring up.
As my health has improved, it’s become more evident that there is a pattern to these symptoms that correlates with my monthly cycle. It’s not Lyme or Fibromyalgia getting worse (though they have probably contributed to the cause of the problem).
But, rather, a hormonal issue that needs to be addressed. I guess I had hoped my stem cells might help to bring all of this into balance but it’s becoming clear that I need additional help.
From up to a week before my period and right through, I’ve been getting bad PMS symptoms and I feel utterly crap and exhausted.
The symptoms I have been experiencing each month include:
- Pain in my abdomen and lower back
- Mood changes
- Sore/tender boobs
- Feeling flu-like
This time it hit a week before my period started and, as I said, it hit me hard. It was honestly like someone had flipped a switch and I went from feeling good to not being able to keep my eyes open!
The exhaustion this month has been terrible. I’ve been so, so sleepy!
I actually got myself quite upset over it because the change was so sudden. I’m finding the flip between doing so well to feeling unwell is hitting me hard mentally.
You would think that– after years of chronic illness– I would be able to get a handle on things like this. But, when it feels like you’ve had the carpet pulled from under your feet it’s never easy to take.
There was one morning, in particular, where I got myself in a bit of a state. This was because I had plans to go out and watch my husband have his first wakeboarding lesson.
I felt truly awful when I woke up. The worst I have in a long time.
But, I defiantly decided to drag myself up and go because I didn’t want to let my hormones ruin things for me. After years of missing out, I was pissed off at the thought of missing out yet again!
As it turned out, I managed okay thanks to the help of ibuprofen and I thankfully felt better as the day went on.
It was actually a nice reminder that, despite feeling poorly, I am still miles away from how sick I used to be. I would have never even managed to get out of bed if this had happened even a year ago.
Falling Into A Negative Mindset
Logically I knew how I was feeling was down to my hormones. However, I still had to be very mindful of my thoughts.
It’s far too easy to fall into a negative and anxious mindset. After being chronically ill for so many years, it’s only natural to worry about falling back into illness again.
I was actually quite frustrated with myself that these thoughts came into my head as I had only just begun to feel like these worries had finally left me. I think it goes to show that mental health is a constant work in progress.
Being at 11 months post stem cell treatment, the expectations are that I should be doing well. My mind started whirring, “Why am I not doing well? Am I going to continue to get worse? Have the stem cells not worked?”
Putting Things Into Perspective
I had to consciously think “STOP!“.
Instead of letting anxiety take over me, I made the conscious decision to place my focus elsewhere. I started thinking more rationally. Which inspired me to write this Instagram post.
Realistically, I knew my symptoms were not due to a re-activation of Lyme or my health getting worse. So why was I worrying about my stem cells not working?!
It’s damn evident that they’ve done a good job. And, just because I’ve had stem cell treatment, it doesn’t make me immune from other issues cropping during my recovery that need to be addressed.
And, as I said, this really wasn’t anything new either. It had just become more apparent since my other symptoms have improved.
These symptoms include:
- Being incredibly sleep
- My hair has been falling out in handfuls when washing it
- Eyebrows thinning
- Temperature dysregulation: going from being too cold to heating up and sweating
- Heart palpitations
- Cold hands and feet
- Muscle aches
- Dry skin
Could my thyroid be out of whack?
Checking My Thyroid
Thankfully, I was actually due for my annual thyroid check at my GP and had a blood test booked. A week later and I had heard nothing back.
No news is good news where my GP is concerned, so this meant he considered my results to be fine. Given my symptoms, I’m not convinced though.
To be honest, after all the hassle I went through trying to get help with my thyroid last year, I’ve lost trust in the NHS. They only check thyroid stimulating hormone (TSH) and, if I’m lucky, my GP may have checked thyroxine (T4) too.
However, there is much more to thyroid health.
For peace of mind, I wanted to look at everything and know for sure. There’s no point in struggling on when something as simple as adjusting my dose of levothyroxine could help.
Hormone Testing Results
I sent the results of these into Infusio who passed them on to an endocrinologist to look at. So I’ve had a little wait to find out the results.
Nadine at Infusio got back to me a couple of days ago to let me know that I did have an issue with these hormones. I have oestrogen dominance.
This is where there is excess oestrogen in comparison to progesterone. This is likely why I’ve been experiencing PMS symptoms.
It also turns out that oestrogen dominance can cause a problem with thyroid hormones too. So, I guess my intuition was on to something!
Infusio has recommended a treatment for me to try and balance my oestrogen and progesterone. Nadine also said that, depending on the results on my thyroid test, I may need to adjust my levothyroxine dosage.
I don’t want to share the what Infusio has recommended to me as this has been based on my symptoms and blood tests. Hormones are complicated so what may help me could be the wrong thing for someone else to take.
If you are an Infusio patient reading this and you are going through something similar, definitely reach out to them and ask for help.
I know it will take time, but I am hopeful that once I get my hormones back into balance things will improve again.
I have my fingers tightly crossed that doing so will also finally see me have stable health!
- Do I wish I had stem cell therapy for Lyme Disease sooner?
- How Natalie’s undiagnosed Lyme Disease caused Lupus
- Recovering from Fibromyalgia, CFS & Chronic Lyme Disease
Find all of my Infusio posts here.
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