I would constantly be exhausted and I thought everyone felt like that until I was told that it’s not how it should be. Over the years I have tried to figure out how endometriosis and Ehlers-Danlos syndrome influence the chronic fatigue I have. This is what this post is about…
So here I am this teenager, wondering why I can’t get my body moving, why am I exhausted all the time, why do I need to constantly give myself a pep-talk to get things done despite really wanting to.
Why is it that the surprise of spontaneous plans don’t work well with my mind and body?
Why is everything such a task?
Am I lazy? Because no one else was feeling the exhaustion I was.
I am a teenager, I should have enthusiasm.
I went about my teenage years and my early twenties believing I was lazy despite being very active in school and work. But yet, I felt I had to drag my body everywhere.
I needed to be organised in my day if I had to get through it.
I never thought fatigue could be a symptom of a medical condition.
With all the doctors I had met, no one told me.
As this feeling dragged through to my early twenties and I moved from London to Mumbai I started questioning doctors – nothing changed.
Whether these were doctors in London or Mumbai – fatigue as a symptom was never on top of their list of symptoms that required treating yet medication added to the drowsiness.
It was all a vicious circle that I needed to get out of but before I did that, I needed to understand the basics.
What is Fatigue?
Very basically explained, fatigue is lack of energy – this can be mental or physical.
What is Chronic Fatigue Syndrome?
When fatigue last for longer than six months and is not caused by a diagnosable disease.
“chronic severe fatigue for at least five to six months not caused by a diagnosable disease and at least four other specific symptoms such as cognitive impairment, muscle and/or joint pains, new types of headaches, tender lymph nodes, sore throat, unrefreshing sleep, and malaise after exercise that occur at the same time or after the development of severe fatigue.”
Now this is where I start to question, are endometriosis and/or ehlers-danlos syndrome causing my fatigue because these are the two conditions that I have been diagnosed with.
Can Endometriosis Cause Fatigue?
Whenever you are facing any medical condition, your immune system is constantly in battle with it. The same goes for when you’re dealing with endometriosis.
My endo doctor had explained that when you have endometriosis, inflammatory toxins (cytokines) are released by the tissue – this process causes fatigue.
This obviously is aside from the fatigue you will feel from having to deal with pain (dysmenorrhea) and heavy bleeding (menorrhagia) because of the endometriosis.
Next obvious question to mind was…
Can Ehlers-Danlos Cause Fatigue?
Chronic fatigue is well spoken about in those who have Hypermobile-EDS.
Dr Alan Hakim, Inge De Wandele, Chris O’Callaghan, Alan Pocinki, and Peter Rowe say here:
“Chronic fatigue is an important contributor to impaired health-related quality of life in Ehlers-Danlos syndrome.”
“The evaluation of chronic fatigue in EDS needs to include a careful clinical examination and laboratory testing to exclude common causes of fatigue including anemia, hypothyroidisim, and chronic infection, as well as dysfunction of major physiological or organ systems. Other problems that commonly contribute to fatigue in EDS include sleep disorders, chronic pain, deconditioning, cardiovascular autonomic dysfunction, bowel and bladder dysfunction, psychological issues, and nutritional deficiencies.”
This to me means that any one (if not more than one) of the additional issues that come along with ehlers-danlos are the cause for the constant fatigue felt by EDS patients.
So we’ve established that both endometriosis and ehlers-danlos syndrome play their role in causing chronic fatigue but what can you do about it?
Read Here For:
- My Experience: Connecting Endometriosis and Ehlers-Danlos Syndrome
- Endometriosis and Adenomyosis Natural Pain Relief – My Journey
How to Treat Endometriosis and Ehlers-Danlos Related Chronic Fatigue
Logically one would believe that after identifying the reason for chronic fatigue – you treat that and the fatigue should go away.
Such as, excision surgery for endometriosis should reduce fatigue, but what we forget is that any debilitating condition creates a pattern in a patient.
For example, I had excision surgery after 24 years of having endometriosis.
Your body is conditioned to living a certain way – regaining muscle strength will take time – the immune system will need its time to rework itself – the diet, supplements, exercise will require their time too… then the habits we have are a mental thing – this mental conditioning needs to be re-conditioned too.
All this needs to be done consciously as recovery begins post surgery.
But… there’s always a but isn’t there…
Endometriosis may not always come with one medical condition.
Like with me, it may be accompanied by adenomyosis, osteoporosis, Ehlers-Danlos syndrome, POTS, arthritis and painful bladder syndrome.
All of these and more are contributors to chronic fatigue.
So I may have done what I could for the endometriosis, but I still have chronic fatigue and I still need to continue fighting it.
How I Fight Chronic Fatigue
1. Planning My Day
– I write down a to-do list a day before to make sure I am mentally prepared of my day ahead.
Surprise plans don’t work too well with me because my mind and body don’t feel prepared.
If you don’t do this already then please give it a go – because as you do it consistently, you will notice a natural helpful change in how you’re able to manage your day.
2. Pace Myself
– when I put together that to-do list, I look to not overwhelm myself.
I look to target the most important things during the times I feel most alert.
If I am unable to complete planned work then I don’t beat myself up about it.
If I have to exert further by stepping out the house, then I try not going out on consecutive days or I look to work out times of additional rest.
I have to remember to respect my body and its needs, otherwise I’ll burn out pretty fast.
3. Herbal / Green Tea
– after waking, showering, breakfast – I feel I have spent all the energy I had and that’s when I usually have herbal or green tea.
It cant either be mint tea or ginger turmeric tea which are anti-inflammatory and have antioxidants.
This tends to uplift my energy and sees me through to lunch time before I need to rest or nap.
I always get my teas from Bushwick Tea and they have kindly offered to give a 10% discount to all of you on any of their organic teas if you use my code: ATE10
4. Diet
– in my earlier posts I have explained the importance of my endometriosis and EDS friendly diet.
I went on to make six changes and have kept away from foods and beverages that don’t provide me with nutritional value or add to my pains.
Read here about: My Diet for Endometriosis & Ehlers Danlos Syndrome
If I eat well then I am doing my best to avoid anemia. Additionally, I am improving bone strength and blood circulation amongst other important things that could be a contributing factor to my fatigue.
Please see a nutritionist who will work on a plan that suits your body.
5. Physiotherapy
– my physiotherapist and I have a plan which caters specifically to my medical conditions and how I am feeling each day.
I avoid doing anything that pushes my limits to an extent that invites more fatigue and pain.
Instead, gentle strength building and regular movement is what helps me most, including walking, light stretches, aqua therapy and resistance band work.
Anyone with a medical issue should see a physiotherapist – they’ll be able to create a schedule for you based on your needs. Also, please don’t feel bad if you can’t do some exercises on some days – those days are bound to happen and this is about helping your fatigue, not adding to it.
6. Rest
– whether I am sleepy or not, I look to lie down in the afternoons. Short naps work better for me than night sleep.
I usually have some episode of pain by being in one position for too long at night which means I wake up quite often, therefore short afternoon naps help to rejuvenate me for the evenings.
7. Use an Aid
– I use walking sticks to help me get around along with various braces for my legs, arms, wrists and fingers.
Earlier I disliked wheelchairs and my sticks but over time I have come to accept the fact that they help me be independent and even help reduce the exertion I put my body through.
If you feel you need an aid to assist you, it will be worth speaking to your doctor or physiotherapist about this.
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8. Time Off
– resting, being unwell, feeling tired and not being able to do much can make us feel guilty at times.
This cycle of thinking of what we would like to do and can’t do can contribute to our mental fatigue.
So I say, switch off from all those thoughts – watch something that interests you, read if that’s your thing, take care of a plant, paint, listen to music, sing, play an instrument, meditate, apply a face pack… try to do at least something that makes you feel nice.
Personally, I get a lot of joy from doing all of these things and that joy helps me rejuvenate.
I believe it really helps us feel better and alive.
Please remember: Doing all of these eight things doesn’t take away my fatigue but helps me to recognise, readjust and cope with it better. I feel more in-tune with my body and that definitely eases things for me.
I still have to give myself that pep-talk every single day – but now I don’t mind it because it helps to keep me moving plus I know I am doing things that show love and respect to my body.
It’s also important that we remember that chronic fatigue is a tough thing to handle and often dismissed or made fun off – but if that’s what you’re experiencing, don’t think of yourself as ‘lazy’ like I did – instead speak to your doctor – see how they can help you.
Please remember that nothing mentioned here can substitute medical advice from a medical professional. Everything I speak of is just a reflection of what I feel, experience and understand.
If you have any insights on chronic fatigue and wish to share, then please do in the comments below.
If you like what I put out and are an Instagram person then check out my handle.
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Disclaimer: I am not a medical professional. I am a patient and have created this platform to share my experiences. This is all purely informative and in no way am I providing medical advice. Please consult a medical professional.
I can definitely vouch for EDS causing fatigue! Really great list of resources to help Shruti- I found physiotherapy so helpful as well. Really strengthened my muscles to help with joint issues and I think it has helped with pain too.
Some really good advice here. It can be so hard for other people to understand the extent to which you need to plan things around fatigue!
Great post Shruti! I don’t really classify myself as having chronic fatigue, but I have super unreliable sleep needs and have been taking a lot of naps lately(side effect of one of my migraine medications is fatigue/tiredness). I use a fair percentage of these techniques and do my best to stay rested and to be kind to myself.
It’s always good to double-check things, because as you mentioned chronic fatigue can be a side effect of your conditions, but knowing if there’s anything contributing to it can reduce those symptoms and improve your quality of life. With Covid-19 and everything, I haven’t been up to changing up my meds, and I’ve also recognized that part of the sleepiness has to do with stress, being home, and other factors – on the days I’m really focused on things, I’m not so sleepy, it’s just on the days that are low-energy anyway I end up taking naps. I’ve concluded to myself that at some point I’ll work on finding a better solution if the tiredness gets worse, I’ve just decided that it’s pretty low-priority for me right now!
Thanks for taking the time and effort and courage to share. It’s so helpful for others to know and also know that they are not alone.