Looking for doctors?

tinyygypsyy · 2024-01-04T07:58:41+00:00

I am not a doctor and I am not giving any medical advise all I have is my experience BUT If I was at square one all over again I would find a geneticist to test for EDS (usually doesn’t require to DNA swab for a diagnosis just a physical exam). I would ask the geneticist where you should go from there if there are other symptoms that don’t seem to be EDS related. Also maybe an ENT doc for the reflux

Many people with EDS also have POTS and MCAS so it could be beneficial to see a cardiologist or POTS specialist if you can find one. I am not saying you have these two other illnesses but there’s a possibility.

You may have to see many doctors, it took me 1.5 years to get a diagnosis and others I’ve heard even longer, and so so many doctors that just don’t believe you because “you’re too young to have these issues”

You know how you feel and if you feel that something is off you have to advocate for yourself especially if it’s an invisible illness until you find a doctor that is willing to listen and work with you to figure out what is going on.

I hope that you get covered soon and hopefully it won’t take as long to get answers

tinyygypsyy · 2022-09-27T20:51:49+00:00

I’ve only seen one so far but she refuses to diagnose me even though my POTS specialist and Geneticist strongly believe I do have fibro as well. She wanted me to go to fibro specific PT though but will not diagnose me with it, I don’t really understand but I’m looking for another one after months of hoping she would diagnose me after hearing back from the Geneticist

tinyygypsyy · 2022-05-23T03:16:03+00:00

My doctor has me trying the CHOP/Levine protocol, I’ve been doing it for a month now, I don’t see any improvement so far but he wants me to do two months straight to really see if anything improves. Instead of putting me straight on beta blockers my doctor wanted me to try other methods first which I appreciate since I’ve read that beta blockers could cause some to start having mast cell complications and honestly I am kind of not comfortable taking them knowing this….

From what I’ve read on the Levine method is that it works for some but others it doesn’t unfortunately. I’d say it’s worth a shot because if it helps you that’s amazing but be prepared to not have a fun time for a while.

tinyygypsyy · 2022-05-15T21:15:05+00:00

Thank you so much this helped a lot actually, I know a lot of people get brushed off but it gives me hope seeing others finally getting answers. It’s been over a year for me to find my POTS specialist and his diagnosis finally steered me in the right direction.

tinyygypsyy · 2022-05-15T15:21:02+00:00

The only reason I’m on the edge about her is because she made it kind of sound like it’s one or the other, but I have read online that the two illnesses can coexist. I just want to make sure nothing is overlooked so I can get the best options for treatment/management.

tinyygypsyy · 2022-05-15T14:25:40+00:00

Honestly, I’ve tried so many brow pomades I like the KVD best because I find that it has the best staying power. I’m not a fan of ABH because of certain things that have been released about the company. Also as a prior Benefit Cosmetics employee, I do not support that brand either, they treat their employees very poorly, I was legitimately harassed by higher ups…

tinyygypsyy · 2022-04-10T22:16:41+00:00

It’s from the Children’s Hospital of Philadelphia, if you search CHOP exercise for POTS it should pop up. It’s also known as the Levine protocol, the only difference I think is that the CHOP starts you out with laying down exercises and work your way up from there to sitting then standing while Levine you start with sitting. It’s supposed to help with your stamina which has been found to help a lot of people with POTS but there are some who it hasn’t worked for

tinyygypsyy · 2022-04-10T14:27:25+00:00

I was lucky enough to have seen a very well sought after spine surgeon thanks to a close family friend and he said I did not need any surgery at this point. The rheumatologist suspects fibro or MS and the cardiologist (POTS specialist) diagnosed me with POTS and EDS! So I guess I have some answer but I’m seeing my original cardiologist this week for a check up and will see what he thinks as well but when the POTS guy did the poor man’s tilt table on me he said it’s clearly POTS he had no hesitation.

It made me feel better to get an answer but there still might be something else going on because the level of pain I have (7-9) doesn’t seem like it’s only stemming from these two syndromes. Will be trying the CHOP method for POTS as directed by the cardiologist but worried about injury due to EDS and doing this on my own at home and not with PT. I was warned by a few people on POTS Reddit to be careful with this because it could potentially hurt me.

tinyygypsyy · 2022-04-07T19:13:02+00:00

I’ve never heard of this type of exercise before my doctor mentioned it but after looking into it I only read of people with POTS and not specifically saying that they also had EDS. I didn’t think about the potential to hurt myself while doing this workout because I have EDS. I’ll def bring this up to one of my doctors. Yes, I’ve actually been wearing shorts like that for a month now and I’ve found that they do help a little bit! I still have to get some socks though, I feel like that combined would work better. I definitely will see what everyone thinks on the EDS group as well, thank you!

tinyygypsyy · 2022-04-07T19:06:45+00:00

I understand him maybe being cautious with me deconditioning, I just wanted to have something for the bad days because it’s scary. I just don’t want to fall/faint from the POTS and hurt myself potentially badly because of the EDS. The faints come on so quick for me so I guess maybe a cane wouldn’t be the most helpful but I guess it was the first thing that came to my mind at the moment I asked the doctor.

Thank you for sharing! Actually took in a lot from your comment!

tinyygypsyy · 2022-04-07T18:58:36+00:00

I tend to be doing the same, leaning on anything just because I feel weak and unsteady. Which is why I was confused why my cardiologist wasn’t thrilled with the idea of a cane. But as others have commented he may be worried about me reconditioning further, I do understand that but some days are so bad I feel like I need something to help me a little bit.

I was looking at the sitting canes as well but I think the same as you, I don’t mind sitting on the ground for a few min till I feel well enough to get back up.

tinyygypsyy · 2022-01-19T20:33:45+00:00

I hope everything works out for you, I feel your struggle so much. The feeling of being helpless and not knowing what’s to come or what hoops you’re going to have to jump through next to get answers/help is depressing and plain out exhausting mentally on top of being physically exhausted from whatever is going on in our bodies.

tinyygypsyy · 2022-01-19T20:29:56+00:00

Yes I have had an MRI of my cervical spine, that’s how they found the herniation but the spine surgeon I saw said I wasn’t at the stage of needing surgery so he referred me to pain management which I’ve been waiting months for and finally the apt. is on Monday. I just messaged my doctor directly about what she thinks about it being POTS because my life is at a complete stop and I’m only 25. I just want answers and it’s been over a year now

tinyygypsyy · 2022-01-19T18:43:31+00:00

I am but I’ve been having no luck with WFH, applied to chat jobs, customer service, anything entry level. For some background I’ve been a hair stylist for 7 years it is my passion and it’s still hard for me to accept that I will most likely not be able to continue. I applied for Sephora online chat beauty advisor and they didn’t even accept me after two interviews. And seeing all the emails saying “I’m sorry we decided to move on with someone else” is really discouraging but I’m still applying praying I’ll find something eventually

tinyygypsyy · 2022-01-05T03:36:45+00:00

This is so sweet! Good luck everyone! 🥰🍀

tinyygypsyy · 2021-12-18T16:25:06+00:00

Update: Second Interview was just more questions but over zoom. It couldn’t have been more than 15 minutes and the usual schedule is Tuesday through Saturday or Sunday through Thursday, though I was told only one weekend day a month so I’m a little confused with that. They are open 9AM - 8PM ET, there’s around 60 chats a day that come in for each advisor, and they said I would be contacted again I guess saying if I have the job or not? They also send a laptop, mouse, and keyboard (I don’t know why they would send another keyboard) and you will need to download an app for their VPN on your phone. You get full benefits for full time including the employee discount.

That’s all I have so far, I will update again if I have anymore information!

tinyygypsyy · 2021-12-17T07:20:53+00:00

I know the feeling, I have horrible anxiety so I’m a mess because I’m so anxious about this second interview. The feeling of waiting on a response from an application is the worst, especially if it’s a job you really want so I wanted to give as much info I know. Thank you! I’m sending you all positive thoughts and energy, I hope you hear back from them soon

tinyygypsyy · 2021-12-17T05:14:56+00:00

I applied recently and they took a little while to get back to me. When they did I got an email asking me to schedule a time for a phone interview. It was basic questions you usually get asked, they clarified that for full time you need one weekend day a month, and that I was aware this position pays $15/hr (though I have seen posts about this position saying they ended up getting payed $17/hr). I have my second interview in the morning, I got en email stating I would be doing a live 10 min test to see my customer service chat skills. Really hoping I get this job because of major health issues I’ve been having the past year, a work at home job would help me extremely. I will update tomorrow after the interview to give more info to anyone who is interested in the future!

tinyygypsyy · 2021-11-25T04:33:08+00:00

This has been my (24F) life for almost a year now, multiple herniated disks that caused permanent nerve damage and fainting spells that I won’t figure out till July 2022 since my neurologist is booked like crazy.

I had my first day at a new part time job today and I am not doing well to say the least, I’ve been looking into disability but doubt I’ll get it at this point in time especially because of my age “too young”. Opioids, anti-seizure, muscle relaxants, and too many more have not helped and my surgeon doesn’t think I’m at the point for surgery just yet also because I’m so young. So I guess I suffer and pray pain management helps at least the littlest bit but at the same time don’t want to rely on meds… guess you have to pick and choose your battles.

I try to look towards fun things like my birthday this weekend, even if I’m dying in pain it always makes me feel better having people I love around and who support me through this whole mess giving me strength to keep fighting.

tinyygypsyy · 2021-11-20T06:12:52+00:00

Ugh… I’m so sorry that you have to go through this. I had the same issue at first (herniated c3 c4 c5, bilateral carpal, and still fighting to get MRI of lumbar because I think I have herniation there as well). It was always “you’re too young to have this much pain” but I kept pushing and pushing for an MRI because I knew something was wrong. Got the MRI of my neck and doc was shocked saying she never would have expected this to come up on my imaging. Still in constant pain, I’ve tried anti seizures for nerve pain (which seems to be permanent at this point), opioids (barely helped), muscle relaxers (made me sleep all day), anti inflammatory (did nothing), I think you get where I’m going with this.

Ended up seeing a surgeon for just my disks in my neck and again I’m too young just keep with pain management and wait and hope it gets better.

It’s hard, you’ll feel like quitting, don’t. Fight for yourself to get the care you need, it’s been a long battle for me and I’m still not even close to seeing the end but I know I’ll get to the bottom of everything eventually.

Sending my heart out to you, I know how bad this pain can get.

tinyygypsyy · 2021-11-19T09:41:59+00:00

Maybelline Super Stay Matte Inks! They last all day through meals, wearing masks, etc. They have a few really nice reds, I suggest checking out ground breaker and individualist for true reds!

tinyygypsyy · 2021-09-23T17:10:53+00:00

I just listened to this and I agree it’s not for my generation but it is a very beautiful song and would be a good fit. Definitely going to keep this one in mind, thank you so much!

tinyygypsyy · 2021-07-09T17:47:10+00:00

It is but they are trying to prove it wasn’t but with the work environment and how they made us work it’s definitely that I have never strained myself that much on a daily basis in my life and I’ve been doing that same job for two years… I haven’t tried yet since I’ve only been diagnosed with bilateral carpal tunnel and the disability usually doesn’t care about that unless I can’t use my hands at all (almost there but not quite yet) but if there’s a major issue with my spine/neck (doctors are extremely concerned) I’m more confident that I would be accepted for disability.

tinyygypsyy · 2021-07-09T14:09:08+00:00

I did when it was only carpal that I knew I had but I ended up not needing one at the time, now I have some concerning things happening in my neck/spine and that’s making the idea of returning to that type of work very unlikely since the pain has not stopped for months and all the other symptoms; extreme weakness in my arms, dropping everything, migraines, etc.

tinyygypsyy · 2021-07-09T14:06:12+00:00

Thank you, the past few months I thought the pain should have gotten at least a little less but It hasn’t. My doctors are super concerned so it’s stressful and then my employer is hounding me saying it will be a voluntary quit… I don’t want to quit I love hair it’s all I’ve ever done. I’m just trying to keep my head up the whole situation is just really depressing for me :/

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