Last Updated on December 22, 2023 by melissanreynolds
I thought it would be helpful to provide an overview of where I am at as we end 2023 and move into 2024.
It’s been a big year.
For the first half of the year I was struggling enormously with the endometriosis. My blood test results deteriorated every time they tested, I was too thin, my face looked emaciated and I dreaded every single period. It was a nightmare. I would be relatively well for about two weeks of the month and then for around two weeks it was awful.
The only way I held on was because I knew I had my specialist appointment. Then I knew I was waiting for the operation.
Major Surgery
At the end of June I had a hysterectomy and endometriosis excision surgery. I shared the whole story here.
The physical recovery was as expected and in fact so good in the earliest weeks that I thought I would skate by. But the adrenaline seemed to wear off after a couple of weeks. It was difficult.
The orthostatic intolerance got worse. My heart rate would go super high just standing in my house. I was exhausted.
It was a simultaneous relief to have removed the traumatic periods but I was still below baseline.
More Diagnoses
I had a diagnosis of only fibromyalgia for many years. I found out last year that they actually diagnosed CFS as a “long term” condition before the fibromyalgia!
In last two years we realised I have endometriosis, interstitial cystitis (like UTI without the infection), my sacroiliac joints go out of place, orthostatic intolerance bordering on POTS and at least mild hypermobility.
I wonder how many people have “just” fibromyalgia or if we’ve just been ignored. And how many people have conditions that are just so undertreated when they could be getting better.
Treatments
For now I have a rigorous holistic plan that I follow
- Sleep hygiene and medication
- Movement
- Hydration
- Daily yoga nidra
- Gentle stretching
- Low dose Naltrexone
- Chiropractic support
- Self-care
- A non-negotiable pain plan that’s really helped (if the pain is at a certain level on the pain scale then there’s a corresponding action i have to take without fluttering about hoping it will ease on its own)
- Pacing
- Trying to keep stress low etc.
What’s Next
However I can’t shake the feeling that I’ve made so much progress in the past 12 years that I need to keep pushing for treatment for these conditions – the OI/POTS in particular has gone no further than a GP who googled a medication to give to me and I ultimately declined it due to the risks and low expected benefit. I do the “lifestyle” recommendations for it.
I’m just tired of fighting. Of paying to see the Dr and getting to discuss one thing at a time and leaving with no further help. We had to pay out of pocket for the operation earlier this year because the public system is so inundated there was no hope of adequate treatment soon, so I can’t pay for anything additional.
It’s summer now and my heartrate was 130 sitting quietly with the kids yesterday. Then after remaining high so long my chest hurts. So I know I need to be mindful of this.
The Chiropractor (the next big thing)
I started seeing a chiropractor in October. Initially I just wanted an assessment as to whether the lower back pain was degenerative and showing on x-rays. But upon discussion with her, and hearing her theory on the nervous system (and it matching with mine). I decided to embark upon treatment.
It has really been helping. It turned out that the intense lower back pain was caused by my sacroiliac joints being out of place. The gentle adjustments have been helping them to stay in and have reduced my pain from 6-7/10 to around 3-4/10! No more heavy duty anti-inflammatories.
The adjustments (using the gentle activator technique) have been helping my neck and back too. More than even the intramuscular needling I’ve sworn by for several years. I’m doing less all day every day to try and manage the pain (ineffectually). Meaning I have more time for what brings me joy.
On my last visit of the year the chiropractor said she believes, that with the danger messages bombarding my nervous system (from very real, structural issues like the sacroiliac joints being out of place) my body will find equilibrium and I will experience wellness.
I sure hope so.
I’ve created the conditions for it to happen. Learning to engage my parasympathetic nervous system, getting the best sleep I possibly can, learning to pace well, moving gently, hydrating and getting adequate nutrition and working on other conditions.
That is so important – diagnosing and treating other conditions! By removing the endometriosis and heavy periods and starting to manage the orthostatic intolerance and bladder issues better, I reduce the danger signals to my nervous system.
There’s still much work ahead of me. But I am hopeful.
Goals for 2024
- Continue my healthy habits and treatments as above
- Continue with chiropractic
- Try an elimination diet (something I’m eating is clearly bothering my joints and bladder)
- Build strength with gentle strength training exercises (will literally start at 5 minutes)
If you’re keen on joining the journey – grab my free Best Ways to Treat Fibromyalgia eBook and join the email list.
