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.
@FootprintsNoBoundariesByShruti
3 жыл бұрын
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.
@Dulcimerist
3 жыл бұрын
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.
@LadyPashta
Жыл бұрын
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.
@DJKD
2 ай бұрын
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.
@shirleypitts6927
3 ай бұрын
With EDS its helpful to keep the nervous system very strong and healthy.
@desireeadrian5722
3 жыл бұрын
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.
@FootprintsNoBoundariesByShruti
3 жыл бұрын
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 :)
@CamandRenae
2 жыл бұрын
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.
@FootprintsNoBoundariesByShruti
2 жыл бұрын
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.
@mauddib7830
3 жыл бұрын
In-between ACDF spinal surgerys. Gettinsurgery. This may help me thank you.
@FootprintsNoBoundariesByShruti
3 жыл бұрын
Good luck with that! I hope your recovery goes well. :)
@mjclaudianava5397
3 ай бұрын
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
@oye_sandy6913
3 жыл бұрын
I m also suffering from ehlers danol syndrome , can I end it any how? 🥺
@Dulcimerist
3 жыл бұрын
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
3 жыл бұрын
I don't have but is there any medicine for it?
@Dulcimerist
3 жыл бұрын
@@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?
@oye_sandy6913
3 жыл бұрын
I'm suffering from elastic skin ☹️
@oye_sandy6913
3 жыл бұрын
My skin is too elastic and it's look like a old man's skin ☹️
Пікірлер: 20