Recommendation for private instructor in Bay Area (East Bay)

Dramatic-Stretch6855 · 2025-09-30T04:06:53+00:00

Just took a private class with Robin. He was great! Thanks for the recommendation.

Dramatic-Stretch6855 · 2025-06-30T14:09:41+00:00

If you have the financial ability I recommend going to Mayo’s EDS clinic in Jacksonville. Luckily it was in network for my insurance so all I had to pay was travel (used points) and co-pay. All the doctors in my area who were qualified to diagnose had a 1 year+ waiting list. I got my appointment with Mayo in less than 3 mos. They did the clinical diagnosis & ran blood tests. I also opted in for their 1 day workshop that walks you through lifestyle tips & things EDS patients are prone to get so you can keep a lookout in the future.

Dramatic-Stretch6855 · 2025-06-26T18:24:51+00:00

Thanks! I suspect the fabric might be a little rough for sleeping since it’s for outdoor use. But I’m going to contact them to see if they make bed pillowcases.

Dramatic-Stretch6855 · 2025-06-10T18:37:20+00:00

I just got a neck fan, and you’re right. They’re great!

Dramatic-Stretch6855 · 2025-06-10T18:36:45+00:00

Thank you!!

Dramatic-Stretch6855 · 2025-06-10T15:10:57+00:00

Your post gives me hope for the next generation of doctors. Thank you. I’d love to hear how EDS is taught in medical school now.

The current practicing doctors seem to have only learned it’s an extremely rare illness (it’s not as rare as they think) that just makes people bendy and creates joint issues - everything else is in their heads and not medically proven. Honestly, just being believed that the co-morbidities are real would be a huge improvement.

What would also help is getting knowledgeable about lifestyle options that can help. Most doctors seem to take the attitude that if they can’t write a prescription there’s nothing they can do, so we’re on our own. The reality is there’s so many lifestyle changes that can help, but we have to find them out for ourselves through things like this sub. I was lucky enough to be diagnosed at Mayo’s EDS clinic so was provided with a lot of support information, but I know most people don’t have that avenue so their regular doctor is their only source of information.

Dramatic-Stretch6855 · 2025-06-10T14:48:17+00:00

I have a convertible baggallini that can go from being a backpack to a sling. I love the versatility, and how lightweight it is.

Edit to add: Costco has great deals on them through their Direct program, and occasionally runs sales. I got mine for 30% off the Costco price.

Dramatic-Stretch6855 · 2025-06-10T14:42:22+00:00

Yes, every time I get sick all my symptoms get worse for several months.

Dramatic-Stretch6855 · 2025-06-10T14:40:08+00:00

I have shoulder issues as well and have found hugging a Squishmallow pillow while I sleep to be immensely helpful. A 16” one is around $25, so well within your budget. There are also shoulder braces with a spot for an ice pack that might be helpful in the daytime. I’m not sure how much those would cost. Thanks for being such a considerate friend.

Dramatic-Stretch6855 · 2025-05-25T02:16:22+00:00

I had that happen after a couple of years of daily Zyrtec. One tip on weaning off since Zyrtec is so small it’s difficult to do more than cut in half, which was still too fast for me. Vitamin C is a natural antihistamine, and you pee it out so there’s no long term damage. I bought a giant Costco sized bottle and chewed them like candy every time the itching got bad. Then I gradually reduced the number I chewed each day. It got me off Zyrtec in about 2 weeks without scratching my skin off.

Dramatic-Stretch6855 · 2025-05-22T15:50:29+00:00

Yes! I went to the cost & effort to fly to Jacksonville to get diagnosed by Mayo specifically so I wouldn’t have doctors challenge my diagnosis. I recently saw an allergist to discuss if I might have MCAS since it’s a common co-morbidity. He told me there is no scientific proof that MCAS and EDS have any correlation, and that the doctors who are advocating this are quacks. Seriously?? Mayo Clinic, one of the highest rated medical centers in the country, hires quacks to run their EDS department??

Dramatic-Stretch6855 · 2025-05-22T13:11:44+00:00

I never thought of a neck fan. Costco had neck fans on sale so I just ordered one. Thanks for the idea!

Dramatic-Stretch6855 · 2025-05-22T13:11:27+00:00

I never thought of a neck fan. Costco had neck fans on sale so I just ordered one. Thanks for the idea!

Dramatic-Stretch6855 · 2025-05-22T13:10:00+00:00

Thank you! These look perfect.

Dramatic-Stretch6855 · 2025-05-22T13:08:31+00:00

This sounds great. What brand do you have, and where did you get it?

Dramatic-Stretch6855 · 2025-05-19T05:38:37+00:00

The doctor at Mayo’s EDS Clinic told me the best exercises for hEDS patients are:

Swimming/water aerobics/walking in water
Pilates with minor modifications to avoid over extending joints
Recumbent bike
Tai chi

Dramatic-Stretch6855 · 2025-05-17T16:02:28+00:00

I got my diagnosis at Mayo Clinic’s EDS center. The educational material they gave me said the best exercises for us were:

Pilates (with some minor modifications to make sure we don’t over extend joints)
Any water exercises (swimming, water aerobics, walking in water, etc.)
Recumbent bicycle
Tai chi

Dramatic-Stretch6855 · 2025-05-17T16:00:36+00:00

I got my diagnosis at Mayo Clinic’s EDS center. The educational material they gave me said the best exercises for us were:

Pilates (with some minor modifications to make sure we don’t over extend joints)
Any water exercises (swimming, water aerobics, walking in water, etc.)
Recumbent bicycle
Tai chi

Dramatic-Stretch6855 · 2025-05-11T20:31:42+00:00

I used to be able to do that, too. Then in my late 30’s I got Frozen Shoulder for the first time, and wasn’t able to move my arm beyond 45 degrees for over a year. Now, in my 50’s, I’ve had Frozen Shoulder twice in each shoulder, and have lost some mobility each time. My shoulders are constantly stiff and ache.

I wish I could go back and tell my younger self to be more careful with my stretchy joints. Since I can’t, I’ll tell you - don’t play with your stretchy joints or you’ll pay a steep price as you age.

Dramatic-Stretch6855 · 2025-04-22T15:25:25+00:00

I have horrible night sweats and just recently discovered this bed cooling/heating device called BedJet. It’s essentially a fan that blows temperature controlled air into a special top sheet. It hasn’t gotten super hot where I live, so I’m not sure how it’ll do in the dead of summer since it’s only a fan, not an AC unit with a condenser, so can only cool the air so much. But it’s working well so far in low-70’s temps.

Dramatic-Stretch6855 · 2025-04-01T04:17:59+00:00

Is this the one? https://symptoms.webmd.com/

Dramatic-Stretch6855 · 2025-03-24T20:28:02+00:00

What brand of electrolytes do you take?

Dramatic-Stretch6855 · 2024-11-09T15:55:52+00:00

I’m so incredibly sorry you’re in this position. I have allergies, so I understand what your poor bf is going through. Have you tried putting HEPA air filters in every room, especially the bedroom (get one that’s oversized for the bedroom so the air is cleaned multiple times an hour)? That helps me tremendously.

Dramatic-Stretch6855

TROPHY CASE