nogluten
Member
My girlfriend and her mother both suffer from hEDS.
Both have seen lots of doctors but I'll mainly address my girlfriend.
I think her true underlying condition is just hEDS and it's comorbities, but doctors have diagnosed her with Fibromyalga, Pain??, and said her joints look arthritic in her late teens(she's 20 now). An important note is that all these issues really started to become more significant at puberty, making me think the rise of estrogen is reinforcing the issue.
Her symptoms:
- Migraines: she gets severe migraines a couple times per week that get worse with light exposure and are more common if she hasn't eaten is some time.
- Body pain: if under stress(mental of physical) she'll get flare ups where she'll experience pain(nerve pain?) in her whole body often accompanied by the migraine.\\
- Extreme fatigue: she regularly gets very fatigued, can't focus and doesn't want to do anything
- Long and sleep: she sleeps roughly 12hrs a day and still doesn't feel well rested after, frequently wakes up at night
- Joints ache: especially before a storm her knees will hurt
- Joint dislocation: due to the hEds joint dislocation happens sometimes
My theories:
- hEDS: I think this one is obvious, I think the joint paint and dislocation can at least by partially explained by this genetic disorder
- MCAS: I've read that this is a very common issue for people with eds. She gets very bad reactions to high histamine foods like alcohol and she regularly uses antihistamines to relieve her pain.
- Hypothyroid: This might be a stretch but after her mother got Lyme disease she developed Hashimoto's, this could be unrelated but I wonder if my girlfriend is predisposed to be hypothyroid since she presents a lot of the symptoms. I'm insisting she test for it.
- Nutritional deficiency: This one is more vague but I wonder if genetic/epigenetic changes have led to a distorted mineral balance or hormonal state that could be addressed with supplimentation
- Endotoxin: I think it could explain some of the waking up at night and bad mood
- Depression: She experienced significant depression in her life because of these medical issues
Drugs/Supplements she currently takes:
- Norethindrone: A progestin for birth control, I don't think it's great to take but she wants to be on it and said that it actually alleviated her symptoms so I assume some of the overlapping effects with Progesterone might be calming her nervous system in some way
- Cymbalta: Apparently this was the game changer for her and made the biggest change from her symptoms being unbearable to just bad. Significant reductions in pain, apparently SSRI's had no effect and apparently as a norepinephrine reuptake inhibitor this is commonly useful for hEds and works on nerve pain?
- Hydroxozine: Antihistamine, alleviates some of the pain, similar to benadryl but a bit better. Makes me suspect some sort of histamine intolerance like MCAS
- Magnesium: Recently prescribed, no noticeable benefit yet
- Vitamin B2: Recently prescribed, no noticeable benefit either
- Vitamin D: Takes it occasionally but she hasn't mentioned it helping, although she gets very little sunlight
I was thinking that Thyroid supplementation and switching to a low histamine diet could help but I'd appreciate any other ideas, anything that lowers serotonin probably helps too. These symptoms seem to be very common in people with Ehlers Danlos but I can't find much on the subject. I don't think ray has even touched on it in any of his videos or articles at least.
Both have seen lots of doctors but I'll mainly address my girlfriend.
I think her true underlying condition is just hEDS and it's comorbities, but doctors have diagnosed her with Fibromyalga, Pain??, and said her joints look arthritic in her late teens(she's 20 now). An important note is that all these issues really started to become more significant at puberty, making me think the rise of estrogen is reinforcing the issue.
Her symptoms:
- Migraines: she gets severe migraines a couple times per week that get worse with light exposure and are more common if she hasn't eaten is some time.
- Body pain: if under stress(mental of physical) she'll get flare ups where she'll experience pain(nerve pain?) in her whole body often accompanied by the migraine.\\
- Extreme fatigue: she regularly gets very fatigued, can't focus and doesn't want to do anything
- Long and sleep: she sleeps roughly 12hrs a day and still doesn't feel well rested after, frequently wakes up at night
- Joints ache: especially before a storm her knees will hurt
- Joint dislocation: due to the hEds joint dislocation happens sometimes
My theories:
- hEDS: I think this one is obvious, I think the joint paint and dislocation can at least by partially explained by this genetic disorder
- MCAS: I've read that this is a very common issue for people with eds. She gets very bad reactions to high histamine foods like alcohol and she regularly uses antihistamines to relieve her pain.
- Hypothyroid: This might be a stretch but after her mother got Lyme disease she developed Hashimoto's, this could be unrelated but I wonder if my girlfriend is predisposed to be hypothyroid since she presents a lot of the symptoms. I'm insisting she test for it.
- Nutritional deficiency: This one is more vague but I wonder if genetic/epigenetic changes have led to a distorted mineral balance or hormonal state that could be addressed with supplimentation
- Endotoxin: I think it could explain some of the waking up at night and bad mood
- Depression: She experienced significant depression in her life because of these medical issues
Drugs/Supplements she currently takes:
- Norethindrone: A progestin for birth control, I don't think it's great to take but she wants to be on it and said that it actually alleviated her symptoms so I assume some of the overlapping effects with Progesterone might be calming her nervous system in some way
- Cymbalta: Apparently this was the game changer for her and made the biggest change from her symptoms being unbearable to just bad. Significant reductions in pain, apparently SSRI's had no effect and apparently as a norepinephrine reuptake inhibitor this is commonly useful for hEds and works on nerve pain?
- Hydroxozine: Antihistamine, alleviates some of the pain, similar to benadryl but a bit better. Makes me suspect some sort of histamine intolerance like MCAS
- Magnesium: Recently prescribed, no noticeable benefit yet
- Vitamin B2: Recently prescribed, no noticeable benefit either
- Vitamin D: Takes it occasionally but she hasn't mentioned it helping, although she gets very little sunlight
I was thinking that Thyroid supplementation and switching to a low histamine diet could help but I'd appreciate any other ideas, anything that lowers serotonin probably helps too. These symptoms seem to be very common in people with Ehlers Danlos but I can't find much on the subject. I don't think ray has even touched on it in any of his videos or articles at least.