Watching this video has made me realise how unknowledgable I am about my EDS diagnosis. I do a lot of the the things you have mentioned but didn't realise the direct connection to eds. Went and found my mouth guard as I get a lot of migraines. I haven't worn them in over a year.
Hi Vanessa, I'm so glad you have found the video helpful. I actually have a detailed video on mouth guards coming up in a couple of weeks. I hope that helps too.
Definitely learn all you can about your EDS, as sadly most doctors are clueless about it. I have hypermobile type Ehlers Danlos syndrome, and had to empower myself with knowledge in order to teach my doctors how to effectively treat me so that I could get better. I used to be completely bedridden from my hEDS, but learned all I could and worked with my doctors to get out of that situation. Sorry you get migraines. Do you also have POTS/dysautonomia? Beta blockers, Clonidine, or Guanfacine can be prescribed off-label for migraine prevention, and can also treat EDS POTS/dysautonomia by reducing the tachycardia and calming the sympathetic nervous system so that it doesn't trigger fainting.
Thank you so much for sharing your experience and what has helped you. I was only diagnosed 3 months ago, now connecting the dots throughout my 39 years of life. This brought me to tears, knowing that I’m not alone in what I am feeling/experiencing and to give myself grace for the low days when I just don’t have any spoons left to give. I chose to remove gluten over a year ago. It was dairy that I thought I could do “dairy-minimal,” but my doctor explained that just 1 dairy exposure can result in 3 weeks of inflammation. I haven’t broached massage as a therapy yet. Acupuncture was helping me, unfortunately insurance will only cover treatment for my ON/TN and Cervical spine pain, so it’s not whole body treatment. Perhaps I need to see someone out of pocket to help balance. I have been seeing a chiropractor who is familiar with EDS and THAT has been tremendously helpful! He is treating full body, adjusting literally from head-to-toe. Many of my lower extremity pains have been reduced greatly and it’s been just about a month of weekly visits.
Hi Desiree - thank you for taking the time to share all this. I hope it encourages many like us who get diagnosed late in life and suddenly find themselves "connecting the dots". It isn't an easy thing to do, but it helps because it allows our doctors to treat us with an improved wholesome approach rather than only looking at specific isolated areas. I do wish insurance covered everything you needed support in but I am glad you've got a chiropractor who is familiar with what you need. I hope you continue to find the right treatment - Good luck :)
Everyone needs to stop being so negative about painkillers. If I didn't have mine, I wouldn't be able to function. HEDS is different in everyone, as you know, and it's very painful for me. I injured myself in my mid-30s and it never healed or never healed right because I have hEDS. Up until then, my pain was not often and usually tolerable. (I didn't even know I had hEDS until doctors couldn't figure out WHY I was having so much pain and I started looking for myself). Painkillers are not evil and they are not as bad as people make them out to be. When you have severe pain, painkillers don't make you "high", so there is nothing to get addicted to any more than a diabetic could become addicted to their insulin.
Exactly. Under treatment is not heroic. Appropriate treatment should be just as acceptable as any other medication that is prescribed and monitored by a doctor. The stigma is very harmful. It is unhelpful to make it seem like pain medications are worse than suffering pain. For most, taking the appropriate dose for severe and debilitating pain is necessary and doesn’t result in severe side effects at all.
My fiancé deals with this pretty bad and she got diagnosed when younger, we have moved states and she hasn’t gotten care in a long time. We have no idea what doctor to go to, a lot of primary docs don’t even know what EDS is.
Hi Cam, It's so tough to get an EDS diagnosis. Although I am in India (that do online consultations), but I have consulted clinics/doctors in London who may be able to help better online. I recently wrote about this and you can check in out just in case it helps: allthingsendometriosis.com/doctors-treat-ehlers-danlos-syndrome-pots-fibromyalgia/ I hope your fiancé gets the treatment she needs.
Salut ! Merci pour tes conseils. Pour ma part, j’utilise des vêtements compressifs sur mesure qui m’aident en cas de douleurs, et l’oxygène. Je fais du yoga 🧘🏻♀️1x/semaine, je cours 1x/semaine, je passe mon temps à boire de l’eau, et j’évite de manger des fruits après les repas. J’adore les goûters, mais je suis habituée depuis toute petite à avoir ma dose de sucre et ça me revigore. Cependant, ce n’est pas recommandé. J’ignore quel travail font les Ehlers-Danlos, moi je suis perdue avec ça. (Au niveau Professionnel)…je cherche toujours ma voie… J’adore l’astrologie, la musique, la peinture. Je peux faire plein de choses mais pas trop longtemps. (Je me fatigue vite). J’ai également remarqué que manger trop de pain fatigue énormément , et que le système hormonal (le cycle féminin) avait clairement un lien avec les douleurs. Le pire pour moi, ce sont les repas de famille interminables. Sinon, comme tu dis, il faut se créer des petites routines. Je vois régulièrement psychologue, kinesiologue, et l’idéal c’est de faire de la fasciathérapie (mais pas remboursée en France, hélas). Et surtout, si j’ai bien un conseil à donner c’est de ne pas vous faire craquer par un chiropracteur ou ostéopathe parce que c’est à cause de ça que je suis « rouillée » aujourd’hui.
Hi, I am in love with a guy who has EDS and mitochondrial disease as an adult. I met him through a dating app. I want to know the chances of this disease being passed down cause he is rejecting my love due to his anxiety
I also have Ehlers Danlos syndrome. Do you have a team of doctors who are knowledgeable about EDS so that they can treat your EDS symptoms? Symptom management is key.
@@oye_sandy6913 Yes, there are a lot of different medications that can help treat the various health issues that are caused by EDS. Which specific health issues caused by your EDS need to be managed? Dysautonomia, digestive issues, fatigue, pain, other issues? What are the most severe aspects of your EDS that interfere with your quality of life the most?
![Physiotherapy & Exercise to Manage Ehlers-Danlos Syndrome Part 2 [CC]](http://i.ytimg.com/vi/pyBNEfP_1es/mqdefault.jpg)
![Physiotherapy & Exercise to Manage Ehlers-Danlos Syndrome Part 2 [CC]](/img/tr.png)
![6 Things I Didn't Know About Hypermobile Ehlers-Danlos Syndrome [CC]](http://i.ytimg.com/vi/TZIHvWsK8Ys/mqdefault.jpg)
![My Endometriosis Story | How I Was Diagnosed with Endometriosis [CC]](http://i.ytimg.com/vi/Cfs_XoWhMTA/mqdefault.jpg)
![Does Chronic Illness Change You? | Spoonie Thoughts [CC]](/img/n.gif)
Watching this video has made me realise how unknowledgable I am about my EDS diagnosis. I do a lot of the the things you have mentioned but didn't realise the direct connection to eds. Went and found my mouth guard as I get a lot of migraines. I haven't worn them in over a year.
Hi Vanessa, I'm so glad you have found the video helpful. I actually have a detailed video on mouth guards coming up in a couple of weeks. I hope that helps too.
Definitely learn all you can about your EDS, as sadly most doctors are clueless about it. I have hypermobile type Ehlers Danlos syndrome, and had to empower myself with knowledge in order to teach my doctors how to effectively treat me so that I could get better. I used to be completely bedridden from my hEDS, but learned all I could and worked with my doctors to get out of that situation.
Sorry you get migraines. Do you also have POTS/dysautonomia? Beta blockers, Clonidine, or Guanfacine can be prescribed off-label for migraine prevention, and can also treat EDS POTS/dysautonomia by reducing the tachycardia and calming the sympathetic nervous system so that it doesn't trigger fainting.
Thank you so much for sharing your experience and what has helped you. I was only diagnosed 3 months ago, now connecting the dots throughout my 39 years of life. This brought me to tears, knowing that I’m not alone in what I am feeling/experiencing and to give myself grace for the low days when I just don’t have any spoons left to give.
I chose to remove gluten over a year ago. It was dairy that I thought I could do “dairy-minimal,” but my doctor explained that just 1 dairy exposure can result in 3 weeks of inflammation.
I haven’t broached massage as a therapy yet. Acupuncture was helping me, unfortunately insurance will only cover treatment for my ON/TN and Cervical spine pain, so it’s not whole body treatment. Perhaps I need to see someone out of pocket to help balance. I have been seeing a chiropractor who is familiar with EDS and THAT has been tremendously helpful! He is treating full body, adjusting literally from head-to-toe. Many of my lower extremity pains have been reduced greatly and it’s been just about a month of weekly visits.
Hi Desiree - thank you for taking the time to share all this. I hope it encourages many like us who get diagnosed late in life and suddenly find themselves "connecting the dots". It isn't an easy thing to do, but it helps because it allows our doctors to treat us with an improved wholesome approach rather than only looking at specific isolated areas.
I do wish insurance covered everything you needed support in but I am glad you've got a chiropractor who is familiar with what you need.
I hope you continue to find the right treatment - Good luck :)
Everyone needs to stop being so negative about painkillers. If I didn't have mine, I wouldn't be able to function. HEDS is different in everyone, as you know, and it's very painful for me. I injured myself in my mid-30s and it never healed or never healed right because I have hEDS. Up until then, my pain was not often and usually tolerable. (I didn't even know I had hEDS until doctors couldn't figure out WHY I was having so much pain and I started looking for myself).
Painkillers are not evil and they are not as bad as people make them out to be. When you have severe pain, painkillers don't make you "high", so there is nothing to get addicted to any more than a diabetic could become addicted to their insulin.
Exactly. Under treatment is not heroic. Appropriate treatment should be just as acceptable as any other medication that is prescribed and monitored by a doctor. The stigma is very harmful. It is unhelpful to make it seem like pain medications are worse than suffering pain. For most, taking the appropriate dose for severe and debilitating pain is necessary and doesn’t result in severe side effects at all.
With EDS its helpful to keep the nervous system very strong and healthy.
My fiancé deals with this pretty bad and she got diagnosed when younger, we have moved states and she hasn’t gotten care in a long time. We have no idea what doctor to go to, a lot of primary docs don’t even know what EDS is.
Hi Cam,
It's so tough to get an EDS diagnosis.
Although I am in India (that do online consultations), but I have consulted clinics/doctors in London who may be able to help better online.
I recently wrote about this and you can check in out just in case it helps:
allthingsendometriosis.com/doctors-treat-ehlers-danlos-syndrome-pots-fibromyalgia/
I hope your fiancé gets the treatment she needs.
Salut ! Merci pour tes conseils. Pour ma part, j’utilise des vêtements compressifs sur mesure qui m’aident en cas de douleurs, et l’oxygène. Je fais du yoga 🧘🏻♀️1x/semaine, je cours 1x/semaine, je passe mon temps à boire de l’eau, et j’évite de manger des fruits après les repas. J’adore les goûters, mais je suis habituée depuis toute petite à avoir ma dose de sucre et ça me revigore. Cependant, ce n’est pas recommandé.
J’ignore quel travail font les Ehlers-Danlos, moi je suis perdue avec ça. (Au niveau Professionnel)…je cherche toujours ma voie…
J’adore l’astrologie, la musique, la peinture. Je peux faire plein de choses mais pas trop longtemps. (Je me fatigue vite). J’ai également remarqué que manger trop de pain fatigue énormément , et que le système hormonal (le cycle féminin) avait clairement un lien avec les douleurs. Le pire pour moi, ce sont les repas de famille interminables. Sinon, comme tu dis, il faut se créer des petites routines. Je vois régulièrement psychologue, kinesiologue, et l’idéal c’est de faire de la fasciathérapie (mais pas remboursée en France, hélas).
Et surtout, si j’ai bien un conseil à donner c’est de ne pas vous faire craquer par un chiropracteur ou ostéopathe parce que c’est à cause de ça que je suis « rouillée » aujourd’hui.
In-between ACDF spinal surgerys.
Gettinsurgery.
This may help me thank you.
Good luck with that! I hope your recovery goes well. :)
Hi, I am in love with a guy who has EDS and mitochondrial disease as an adult. I met him through a dating app. I want to know the chances of this disease being passed down cause he is rejecting my love due to his anxiety
This is great. I just need to rob one bank a month now to afford these options
I m also suffering from ehlers danol syndrome , can I end it any how? 🥺
I also have Ehlers Danlos syndrome. Do you have a team of doctors who are knowledgeable about EDS so that they can treat your EDS symptoms? Symptom management is key.
I don't have but is there any medicine for it?
@@oye_sandy6913 Yes, there are a lot of different medications that can help treat the various health issues that are caused by EDS. Which specific health issues caused by your EDS need to be managed? Dysautonomia, digestive issues, fatigue, pain, other issues? What are the most severe aspects of your EDS that interfere with your quality of life the most?
I'm suffering from elastic skin ☹️
My skin is too elastic and it's look like a old man's skin ☹️
My boyfriend tells me I'm selfish for going to hot yoga or sleeping 8 houra as a single mom w EDS, no support & previous stroke