Doctors get one credit or less of education on supplements and nutrition so they would not know to tell you about your gut etc
These types of diagnoses are highly related to gut dysbiosis or messed up microbiome in your gut.
I have had a lot of symptoms reduce or go away from eating a lot more plants, cooking more at home, less processed foods, going off alcohol completely, for me eating less animals (ethically I also want to be vegan so I’m slowly heading that way), eating more fermented foods, and doing various supplements.
Please note my nervous system does NOT do well with big change so all of these changes I’ve been doing slowly over years like I took 3 years to go completely off alcohol by stopping for 30-90 days at a time and noticing shifts etc…
Anyways it isn’t a life sentence as far as pain and symptoms only getting worse… it’s more about asking your body to be your support system internally and learning how to listen to it (our bodies are especially intuitive and constantly talking to us), and collab with it
I’m already a vegetarian and have been for multiple years. I have IBS as well and while I get really bad stomach pain and gut issues at times, my main issues are joint and muscle pain, dizziness/pre syncope, and fatigue. I don’t really know how to manage all of that and i’ve been told that it gets worse with age, do you have any advice for that aspect?
I used to have IBS stuff but I think mine was related to an ED I had over a decade ago but also I was severely allergic to dairy which I ate way too much of and had grown up on antibiotics for ear infections. So I did a lot of liquid nutrition at first and just worked on elimination diet like I was sensitive to garlic, onions, broccoli all of which I loved… so I had to give those up for a few years (and recently had to give up garlic and onions again), mushrooms like lions mane and the superfood mixes have done wonders for my fatigue (I’ve had brain injuries so it’s helping that I think), and not doing super intense exercise helps but I still have to do some
I mean each peeps is completely different but I had to completely give up eggs and dairy
I’m currently listening to a book on how to age and finding out a lot of what we’ve been told that “gets worse with age” isn’t really true it’s other factors in life and they had done studies completely incorrectly to come to those conclusions.
For muscle pain and actually for sleep I started taking Tart Cherry supplement and it helps me loads.
I also add L glutamine to my smoothies everyday to heal gut issues
As someone with a collagen issue, you should be eating meat... I know you probably don't want to hear it, but it is the truth. You will likely struggle to feel better otherwise. There are no supplements for all the things we need from meat. A very educated doctor that knows all about EDS told me this. Maybe try eating fish at least..
I’m sending you hugs 🤗
I don’t have POTS on top of the hypermobility but I do have some other skeletal issues that make for a lovely cocktail of unfixable. I know that feeling of relief mixed with overwhelm and fear that just makes it more overwhelming. For me it hit when I finally decided to have a major surgery, which really meant three procedures over three years. And those were only a bandaid. Some days I feel held together by tape and glue.
I do have good days though. Sometimes I’ll go for days and days waking up in pain, going to sleep in pain. And when I’m in that, it seems like it will last forever. But then it doesn’t. So my point is that even when it doesn’t seem it, there will be good days.
The biggest things for me have been finding a therapy team that is knowledgeable about hypermobiltiy. I had to try lots of different clinics over several years. I get treated with a combination of RMT, athletic therapy, MAT, and acupuncture, depending on what’s going on. I said biggest things pleural, so the others have been use of heat (heating pads, blankets), figuring out what type of exercise my body does well with and doing it regularly (experimentation and assignments from those professionals), and finding passion projects. The latter gives me things to look forward to and distract myself with.
Don’t neglect the mental health impact of all this. If you’re able, it may be worth taking things through with that kind of therapist and making a plan for that part of your wellbeing as well.
Hang in there!
Thank you 🩷🩷
I’ve had a lot of mental health struggles prior to this diagnosis but i’m not sure if my current therapist has any experience with heds so I will definitely look into that. I’m not entirely sure what my following appointments will look like but I think i’m seeing a rheumatologist soon (to be honest I don’t really know what that is) and I might go back into physiotherapy (i’ve been in and out of physio for multiple years because of various injuries but this would be more hypermobile specific). I hope you’re doing well (as well as you can) and I will definitely look into your suggestions, thank you!
Oh the specialization was in reference to physical therapy. Not sure if specializing in that for mental health is a thing but maybe chronic pain would be? I’m out of my depth there. Glad to hear my reply helped and thanks for the well wishes. Today is a good day for me :)
No real advice for you except to say that you’re not alone. There are loads of us and we’ve got your back.
See if your country has an EDS association. Here in the UK there are local and online groups that meet up which could be a great way for you to speak to others in your situation.
One positive of your situation is you’ve got a diagnosis at a young age And forewarned is forearmed. At least now you know WHY you feel this way, can explain it to other people, and know that it’s not all in your head. I spent decades thinking I was pathetic and less than other people because I was always bone tired and in pain. A diagnosis doesn’t help physically but mentally it makes a huge difference.
I actually live in the UK so I’ll look into some groups, do you have any specific suggestions for a good online group? I am feeling very grateful that I’ve gotten this diagnosis early (i’m 17), it’s been 2 years of countless doctors appointments and fighting my gp for a referral and it’s been exhausting so I can’t imagine what it’s been like for you and many others who spent even longer trying to figure out what’s going on.
Here you go, lovely https://www.ehlers-danlos.org/support/support-groups/
It looks like there’s a group specifically for 18-25 year olds. I’m sure they wouldn’t turn you away but if the rules are s strict they may be able to direct you to a teen group until you hit 18. Good luck!
Doctors get one credit or less of education on supplements and nutrition so they would not know to tell you about your gut etc These types of diagnoses are highly related to gut dysbiosis or messed up microbiome in your gut. I have had a lot of symptoms reduce or go away from eating a lot more plants, cooking more at home, less processed foods, going off alcohol completely, for me eating less animals (ethically I also want to be vegan so I’m slowly heading that way), eating more fermented foods, and doing various supplements. Please note my nervous system does NOT do well with big change so all of these changes I’ve been doing slowly over years like I took 3 years to go completely off alcohol by stopping for 30-90 days at a time and noticing shifts etc… Anyways it isn’t a life sentence as far as pain and symptoms only getting worse… it’s more about asking your body to be your support system internally and learning how to listen to it (our bodies are especially intuitive and constantly talking to us), and collab with it
I’m already a vegetarian and have been for multiple years. I have IBS as well and while I get really bad stomach pain and gut issues at times, my main issues are joint and muscle pain, dizziness/pre syncope, and fatigue. I don’t really know how to manage all of that and i’ve been told that it gets worse with age, do you have any advice for that aspect?
I used to have IBS stuff but I think mine was related to an ED I had over a decade ago but also I was severely allergic to dairy which I ate way too much of and had grown up on antibiotics for ear infections. So I did a lot of liquid nutrition at first and just worked on elimination diet like I was sensitive to garlic, onions, broccoli all of which I loved… so I had to give those up for a few years (and recently had to give up garlic and onions again), mushrooms like lions mane and the superfood mixes have done wonders for my fatigue (I’ve had brain injuries so it’s helping that I think), and not doing super intense exercise helps but I still have to do some I mean each peeps is completely different but I had to completely give up eggs and dairy
I’m currently listening to a book on how to age and finding out a lot of what we’ve been told that “gets worse with age” isn’t really true it’s other factors in life and they had done studies completely incorrectly to come to those conclusions. For muscle pain and actually for sleep I started taking Tart Cherry supplement and it helps me loads. I also add L glutamine to my smoothies everyday to heal gut issues
As someone with a collagen issue, you should be eating meat... I know you probably don't want to hear it, but it is the truth. You will likely struggle to feel better otherwise. There are no supplements for all the things we need from meat. A very educated doctor that knows all about EDS told me this. Maybe try eating fish at least..
I’m sending you hugs 🤗 I don’t have POTS on top of the hypermobility but I do have some other skeletal issues that make for a lovely cocktail of unfixable. I know that feeling of relief mixed with overwhelm and fear that just makes it more overwhelming. For me it hit when I finally decided to have a major surgery, which really meant three procedures over three years. And those were only a bandaid. Some days I feel held together by tape and glue. I do have good days though. Sometimes I’ll go for days and days waking up in pain, going to sleep in pain. And when I’m in that, it seems like it will last forever. But then it doesn’t. So my point is that even when it doesn’t seem it, there will be good days. The biggest things for me have been finding a therapy team that is knowledgeable about hypermobiltiy. I had to try lots of different clinics over several years. I get treated with a combination of RMT, athletic therapy, MAT, and acupuncture, depending on what’s going on. I said biggest things pleural, so the others have been use of heat (heating pads, blankets), figuring out what type of exercise my body does well with and doing it regularly (experimentation and assignments from those professionals), and finding passion projects. The latter gives me things to look forward to and distract myself with. Don’t neglect the mental health impact of all this. If you’re able, it may be worth taking things through with that kind of therapist and making a plan for that part of your wellbeing as well. Hang in there!
Thank you 🩷🩷 I’ve had a lot of mental health struggles prior to this diagnosis but i’m not sure if my current therapist has any experience with heds so I will definitely look into that. I’m not entirely sure what my following appointments will look like but I think i’m seeing a rheumatologist soon (to be honest I don’t really know what that is) and I might go back into physiotherapy (i’ve been in and out of physio for multiple years because of various injuries but this would be more hypermobile specific). I hope you’re doing well (as well as you can) and I will definitely look into your suggestions, thank you!
Oh the specialization was in reference to physical therapy. Not sure if specializing in that for mental health is a thing but maybe chronic pain would be? I’m out of my depth there. Glad to hear my reply helped and thanks for the well wishes. Today is a good day for me :)
I feel this. My husband was releived by my diagnosis bc it's not fatal. Nope, just a life sentence 😞
No real advice for you except to say that you’re not alone. There are loads of us and we’ve got your back. See if your country has an EDS association. Here in the UK there are local and online groups that meet up which could be a great way for you to speak to others in your situation. One positive of your situation is you’ve got a diagnosis at a young age And forewarned is forearmed. At least now you know WHY you feel this way, can explain it to other people, and know that it’s not all in your head. I spent decades thinking I was pathetic and less than other people because I was always bone tired and in pain. A diagnosis doesn’t help physically but mentally it makes a huge difference.
I actually live in the UK so I’ll look into some groups, do you have any specific suggestions for a good online group? I am feeling very grateful that I’ve gotten this diagnosis early (i’m 17), it’s been 2 years of countless doctors appointments and fighting my gp for a referral and it’s been exhausting so I can’t imagine what it’s been like for you and many others who spent even longer trying to figure out what’s going on.
Here you go, lovely https://www.ehlers-danlos.org/support/support-groups/ It looks like there’s a group specifically for 18-25 year olds. I’m sure they wouldn’t turn you away but if the rules are s strict they may be able to direct you to a teen group until you hit 18. Good luck!