Thread by @LoveInYourTummy

Today is the 6-year anniversary of the start of my spontaneous spinal CSF leak. It resulted in me being bedridden/housebound for 3 months. It also led to the realisation that I have hypermobile Ehlers-Danlos syndrome. I experimented with nutrition and it changed my health/life /1

Before my CSF leak and nutritional changes, I had daily symptoms associated with my hypermobile Ehlers-Danlos syndrome (hEDS) and associated co-morbidities. So here is an explanation of the difference that a nutritional approach to managing my symptoms has had on my life /2

Before nutritional changes:
I regularly had musculoskeletal pain, in different muscles/joints. I would get tired easily, had weak muscles, and was often fatigued
After nutritional changes:
No longer have muscle/joint pain, have more energy, and I’m fitter than I’ve ever been /3

Before nutritional changes:
I have a history of multiple knee dislocations/surgeries/knee pain. When walking longer than ~30mins I needed a brace on my left knee
After nutritional changes:
Walked this far on holiday in 2019 with no knee brace & only minor knee twinge on 1 day /4

Before nutritional changes:
Unpredictable daily gastrointestinal symptoms, which could include a mixture of IBS, pain and indigestion.
After nutritional changes:
I have ‘normal’ gut function - symptoms only triggered if I deviate from what I now know can keep them at bay /5

Before nutritional changes:
Regular daily symptoms associated with autonomic dysfunction, especially reactive hypoglycaemia - feeling nauseous, sweaty, shaky, brain fog & lightheaded when hungry
After nutritional changes:
Only a handful of episodes of this in the last 6 years /6

Before nutritional changes:
Autonomic dysfunction included feeling dizzy or lightheaded when going from lying to standing very quickly e.g. getting out of bed. Skin flushed and needed to lie down after a hot shower
After nutritional changes:
Don’t experience these any more /7

Before nutritional changes:
Since age ~15y, during winter or spring (most years but not every), I developed seasonal asthma (sometimes a chest infection) requiring reliever/preventer inhalers (often antibiotics)
After nutritional changes:
Haven’t used inhalers or ABs for 6 yrs /8

Before nutritional changes:
History of eczema, irritant contact dermatitis, broken skin & prone to skin infections - needed intermittent steroid creams, antihistamines & occasional antibiotics
After nutritional changes:
No steroid creams for 6 yrs. Rarely even need emollients /9

Before nutritional changes:
Regularly had dry, itchy skin, rashes and severe reactions to insect bites, and reactions to sun. History of dermatographism
After nutritional changes:
One solitary dose of an antihistamine for prickly heat on holiday in 2016 /10

Before nutritional changes:
Poor wound healing, easy bruising, petechiae, even from carrying shoulder bags or minor bumps
After nutritional changes:
Skin heals much faster, don’t bruise as often, not as severe /11

Before nutritional changes:
A history of headaches, and at the time of starting my nutritional medicine experiment, living with daily symptoms of a spontaneous spinal CSF leak
After nutritional changes:
Recovered from spinal CSF leak and rebound high pressure headaches /12

Before nutritional changes:
Experienced migraines in my teens and twenties and worked my way through a variety of different prescription and over-the-counter (OTC) medicines
After nutritional changes:
Occasional mild migraine-like headaches, managed with OTC pain relief /13

Before nutritional changes:
Visited 2 different GPs at practice relatively regularly for a plethora of reasons - both know me well
After nutritional changes:
Been to see GP twice in 6 yrs (2 GPs)
1st said: “You know your body well, don’t you?”
2nd said: “Long time, no see!” /14

I was symptomatic for nearly 4 decades before I discovered how to use a nutritional approach to manage my symptoms. I made my discoveries whilst studying for an MSc in nutritional medicine.
I completed research for my nutritional medicine MSc on nutrition in hEDS. /15

https://twitter.com/LoveInYourTummy/status/984513151713579009

None of the doctors with a specialist interest in hypermobility disorders and Ehlers-Danlos syndromes have advised me about how to manage my symptoms. I figured things out for myself and tested my own ideas and hypotheses on myself /16

I’ve been able to massively reduce my need to take both prescription & over-the-counter medicines over the last 6 years. As a pharmacist and nutritionist, I know this is a very unusual achievement. I know that what I’m doing is not recognised by most doctors as a way forward /17

It isn’t straightforward or simple to use a nutritional approach to managing hEDS. It took me having 2 pharmacy degrees, a nutritional medicine MSc, and being a patient in my 40s to know enough to be able to figure out what I have discovered. Doctors don’t know what I know /18

Why don’t doctors know what I know? I have studied nutrition and I have experimented and tested my ideas on myself, as a hEDS patient.
Most doctors haven’t studied nutrition and would need to obtain ethical approval to test hypotheses or conduct research on patients with hEDS /19

I am and remain convinced that I’m not the only person with hEDS and associated co-morbidities who could benefit from a nutritional approach to managing symptoms. But I am definitely in the minority in terms of who understands how nutrition can potentially help /20

I know that I am still at risk of developing a plethora of different symptoms and illnesses, which I know could happen. But being able to avoid prescription medicines for 6 years, needs to be taken seriously, and studied, and not dismissed as a chance event. /21

I know that there has been very little research on this topic. I have been trying to change that, but have come up against repeated blocks and challenges because doctors (and others) are not taking nutritional medicine seriously enough. /22

Whilst doctors and people with an interest in EDS maintain this attitude, and continue to dismiss nutrition as a possible management option, there will be little progress. Some people who may be helped by a nutritional approach, will needlessly continue to be symptomatic /23

I believe there should be debate on the topic. If you are a doctor and you are not taking nutrition seriously, please offer your ideas/opinions to me as to *why* you think a nutritional approach to symptom management in hEDS and associated co-morbidities cannot work /24

If you are a patient, please ask your doctor(s), and the organisations with an interest in hypermobility disorders and Ehlers-Danlos syndromes, why they are not taking nutritional medicine more seriously, or studying this topic.

Change is needed.

Thanks for reading! /end