JazTee

Member
Joined
Aug 25, 2020
Messages
20
Hi all,

I recently posted a thread here: (Feeling Terrible at 22) where I basically listed all my symptoms and recieved some amazing advice for my metabolism, overall dietary health etc. I suggest reading this post first to get an insight into my lifestyle and health.
(TL-DR; I basically starved & binged most of my childhood, ****88 up my metabolism, ate 95% PUFA diet, over-exercised & under-exercised, traumatic childhood, basically the recipe for disaster).

I went to the hospital today (rheumatology dep) to see about my severe joint pain and fatigue. The Dr did a very thorough physical examination and has diagnosed me with Hypermobile Ehlers-Danlos Syndrome. I have also had bloods taken to double check the inflammation they found in my blood 6 weeks ago - just to see if I have an inflammatory condition or something ontop of the hEDS. I have spent the past 2 hours doing research into the condition and, yeah, all of my symptoms match up. It's nice to know that I'm not just being sensitive and that my pain is actually real and I do have a condition that causes me to be exhausted and that I'm not just lazy.

Though, I can't find much information about its treatment. It's a connective tissue disorder - so I'm just wondering, should I try increasing my gelatine/collagen intake to see if it'll help? I'm also on the way of healing my metabloism at the same time so I am eating about 2,000+ calories a day and trying really hard to nourish my body and not over-excercise. So I have a lot to think about in terms of my health at the moment. Kinda freaking out a bit, but trying to use this diagnosis as direction and motivation and not a burden.

If anyone has any suggestions about what I could possibly do to help my hEDS that would be great. I really love hiking and walking - and I don't want to get to the point where I can't walk anymore because I'm already suffering with my joints and energy and currently spending 2-3 days in bed or on the sofa every week. I really need to fix this and I need to be active and healthy - just as we all want to on here. I'm extremely nervous that I am more prone to developing arthritis and could end up with arthritis in my 30s. So kind of feel a lot of pressure to fix myself while I'm in my 20s.

Thanks so much everyone.

Have a great day!

-Jaz
 

dilantinoid

Member
Joined
Mar 27, 2015
Messages
289
I have this too. Not the most severe form.

Have you tested TGB BETA 1 & MMP9 levels ?

minocycline helps me
 

5-HTupid

New Member
Joined
Sep 16, 2016
Messages
1
Hi Jaz,

I'll offer my own experience in case it might help you. I was diagnosed with hEDS a while ago after many years of chronic fatigue, pain, gut problems, orthostatic intolerance, etc.

B1/Thiamine has been a huge help and I wish, wish, wish I had experimented with high doses (500mg+ daily) years ago. I guess I never suspected a deficiency as I always took some kind of B complex supplement, but apparently I need hundreds of times the official RDA (which is about a mg). I add the pure powder to my drinks throughout the day, as the whole dose in one go can irritate my stomach. I've found this makes a big difference to my energy levels and crucially has, I believe, allowed me to tolerate thyroid. Having known I was "sub-clinically" hypothyroid for as long as I've been unwell, I first experimented with thyroid supplementation years ago and persisted with it over the years, but any more than a small amount always made me feel worse, sometimes much worse. The vitamin deficiency seems to have been the problem – I interpret that my adverse reactions to thyroid were due to increased metabolism creating too great a need for B1 that I didn't have.

This experience has rammed home the dangers of supplementing with thyroid in the presence of nutrient deficiencies, but has also finally confirmed to me first-hand that thyroid really is as much of a heavy lifter as I'd always read it was. I am still increasing my dose – slowly – with great results. Not cured by any means (I also have MCAS and have to be very careful to avoid triggers) but no longer debilitated and still improving.

Progesterone is certainly very helpful, I take it during my luteal phase and on the occasions that I've been without it, my PMS is dramatically worse. It seems to me that EDS people are very estrogen dominant in general.

K2 is another thing that seems to help. If I remember correctly, Peat has recommended K supplementation and a little DHEA for EDS. He has said that in elderly people, DHEA can help rebuild the connective tissue.

You probably are more prone to developing arthritis and I would try not to worry too much about this. The great thing about viewing health from a "bioenergetic" perspective is seeing that disease states are not fixed or irreversible. True, the environment is very bad and in reality chronic conditions are most often not reversed, but physiology is fluid and imo just understanding this can go a long way to reduce the sense of helplessness that often accompanies diagnosis and keeps people sick.
 

Recoen

Member
Joined
Jun 8, 2020
Messages
592
I was diagnosed with hEDS, POTs, and MCAS among other things. The things I described in your other thread have helped me the most.
 
Similar threads
Thread starter Title Forum Replies Date
M Bile deficiency / Gilbert syndrome (chronic too high bilirubin) Ask For Help or Advice 3
Pina Topical Lung T3 Treatment COVID-19 Acute Respiratory Distress Syndrome Thyroid and Hormones 0
GelatinGoblin Has Peat talked about Euthyroid Sick Syndrome? Ask For Help or Advice 1
D A case of Wilson's syndrome with normal tests Minerals 51
Q Is Vitamin D induced serotonin syndrome possible? Please hear me out... Ask For Help or Advice 60
ecstatichamster De Quervain's syndrome - Dr. Peat wrong? Symptoms, Causes 16
Lokzo Are Spexin levels associated with metabolic syndrome? - PUBMED 2020 Scientific Studies 0
A Chronic Fatigue Syndrome is a metabolic disorder Metabolism 55
Mito Specific Bacterium In The Gut Linked To Irritable Bowel Syndrome (IBS) Articles & Scientific Studies 0
L Klinefelter's Syndrome Help Ask For Help or Advice 1
haidut Irritable Bowel Syndrome (IBS) Caused By Histamine And Serotonin Scientific Studies 3
J Had Extreme Reaction To Milk And Vitamin D. Maybe Milk Alkali Syndrome? Milk 26
E Bad Symptoms After Orgasm-Post Orgasmic Illness Syndrome Male Issues 17
TheBeard Why I Prescribe Antibiotics To Patients With Chronic Fatigue Syndrome, Fibromyalgia, Multiple Chemic Supplements, Pharmaceutical Drugs 20
orewashin Healing Midbrain Damage (chronic Fatigue Syndrome) Health 81
haidut Estrogen Directly Causes Polycystic Ovary Syndrome (PCOS) Scientific Studies 23
Thorsten91 Marfan Syndrome Cancer, Degenerative Diseases 1
Hans The High Acetylcholine Syndrome Articles & Scientific Studies 41
caspar Mast Cell Activation Syndrome And Quercetin Supplements 3
T Post Finasteride Syndrome And Low Insuline Male Issues 0
J Post Dutasteride Syndrome Blood Work, Labs 1
Mito COVID-19 And Metabolic Syndrome – An Association Too DIfficult To Ignore Articles & Scientific Studies 1
md_a Reactive Oxygen Species In Acute Respiratory Distress Syndrome (ARDS) Scientific Studies 1
md_a How Coronavirus Kills: Acute Respiratory Distress Syndrome (ARDS) Scientific Studies 40
J Finally Cured From Post Finasteride Syndrome Male Issues 1918
haidut Progesterone May Treat Diabetes, Obesity, And Metabolic Syndrome Scientific Studies 6
haidut Down Syndrome (DS) Cognitive Handicap Is Due To (cellular) Stress, May Be Reversible Scientific Studies 7
E Post Orgasmic Illness Syndrome Male Issues 71
W Chronic Fatigue Syndrome: Mitchondria, Lactate, Oxidative Stress, Anaerobic Scientific Studies 33
A Article On How Auto-brewery System (ABS), Aka Gut Fermentation Syndrome Can Cause DUI Digestion 0
P Post Finasteride Syndrome, No-Fap “Flatlines”, Leech Therapy, Hair Loss Hair & Nails 3
GutFeeling Severe Serotonin Syndrome Induced By Mirtazapine Monotherapy Scientific Studies 1
W Chronic Fatigue Syndrome/ M.E. Switch To Anaerobic, Don't Replicate First Day Exercise Scientific Studies 5
Inaut GRAPHIC - A Visual Representation Of Hans Selye’s G.A.S (general Adaption Syndrome) Scientific Studies 0
mayweatherking Babies Display ‘Werewolf Syndrome’ After Getting Minoxidil By Mistake Supplements 5
L Neuroendocrine And Immune Disequilibrium As A Probable Link Between Metabolic Syndrome And Carcinoge Articles & Scientific Studies 2
Amazoniac The Skin Function: A Factor Of Anti-metabolic Syndrome Skin 6
R Dietary Carbohydrate Restriction Improves Metabolic Syndrome Independent Of Weight Loss Scientific Studies 2
Y Methylene Blue Induced Serotonin Syndrome At 400mcg Dose Ask For Help or Advice 42
Lokzo Cyproheptadine May Increase Height In Those With Growth Hormone Insensitivity Syndrome (GHIS) Scientific Studies 0
TheBeard Water Malabsorption Syndrome? Digestion, Gut Flora 27
Lokzo Role Of Dietary Histidine In The Prevention Of Obesity And Metabolic Syndrome Scientific Studies 6
K Diagnosed With Thoracic Outlet Syndrome. Is Vegan The Answer? Diet 10
K Arterial Thoracic Outlet Syndrome And Back Pain Ask For Help or Advice 26
K Recommended Diet For Someone With Arterial Thoracic Outlet Syndrome? Diet 10
A Could I Get Reye's Syndrome? Ask For Help or Advice 1
Captain_Coconut ANTI-FATIGUE EFFECT OF D-LIMONENE ON CHRONIC FATIGUE SYNDROME IN MICE Supplements 27
B Low Libido/ED From Low T3 Syndrome Male Issues 0
BearWithMe Anterior Cutaneous Nerve Entrapment Syndrome Ask For Help or Advice 4
ecstatichamster Tell Me More About Milk Alkali Syndrome Dairy 7

Similar threads

Top