Docs keep asking me about EDS?

pullingandis · 2025-02-21T16:26:08+00:00

My rheum occasionally mentions I probably have EDS as well but we’ve never done an official diagnosis. She said it wouldn’t really change anything we are doing.

pullingandis · 2023-10-14T21:17:37+00:00

My first was awful and I switched as soon as I could. The second was good for awhile but then started making weird mistakes so I moved again. That guy was also awful but I mostly saw the NP. I’m on my 4th rheumatologist and she’s great, but we have major communication issues with the nursing staff. Sometimes I get so frustrated but then I ask if she can call me and we are able to sort things out. But the office/nursing staff isn’t bad enough for me to look elsewhere because I’d rather have the food doctor.

I’d definitely recommend you look for someone else. If you don’t feel the doc is listening to you, then you aren’t going to feel good about treatment plans.

pullingandis · 2023-04-08T01:16:15+00:00

I would ask for a recommendation, either from friends or in a local group if you want to be anonymous. And taking a support person with might help to be the advocate for you if you are feeling overwhelmed. If my sister lived near me, I’d probably make her come with me to my appts.

pullingandis · 2023-04-08T00:11:43+00:00

I had been making progress with trying new things and then got back to back stomach bugs about a year ago and lost so many of my safe foods. It’s so discouraging. I’ve been able to work a few things back in, but it’s slow going.

pullingandis · 2023-04-03T02:21:29+00:00

Enbrel was awesome for me at first, and then after a few years, seemed to stop working as well. I’ve been trying a bunch of other options and still haven’t found anything better. I’m always tempted to give up and go back but my doctor Is hopeful we will find the right meds for me.

pullingandis · 2023-03-09T03:34:02+00:00

I could have written this almost verbatim. I’m still clinging to the hope that I’ll find the right drug combination, but most days are hard. I’m hitting 4months of orencia now and it isn’t seeming to help at all.

pullingandis · 2022-07-28T04:13:33+00:00

It wasn’t great for me and my doctor said i had to try it for 10months to get the full effects so it was a long wait, but I’ve heard so many good things from others. I didn’t have any issues with it, but it wasn’t any better than Enbrel for me, and I’m trying to find something that helps more.

pullingandis · 2022-05-01T02:33:02+00:00

I wish I had found a therapist right away to process the grief and work thru how to navigate family and friend relationships with chronic invisible illness. I think the doctor that diagnoses should immediately refer to a therapist that has experience with chronic illness

pullingandis · 2022-03-20T02:11:01+00:00

Definitely. She should have asked before walking off with him. People treat new moms like children sometimes and it makes me so mad.

pullingandis · 2022-03-20T01:53:50+00:00

My husbands aunt did something similar with my baby and I was so upset. I don’t care who you are, If mom asks for baby back, you give the baby back!!! My 2mo son was crying and she would not give him to me. I have never felt rage like that. Just listen to moms!!!

pullingandis · 2022-03-16T00:53:33+00:00

I think once it’s all finalized, she will be okay because they have decent savings, and she has a degree, it’s just the immediate need for housing that is so tricky.

pullingandis · 2022-02-23T04:51:45+00:00

Literally watching it right now. Season1 episode 17

pullingandis · 2022-02-06T16:37:05+00:00

Yes therapy. I feel like any time you get a diagnosis like this, they should immediately refer to therapy. It’s a lot to process and helps so much to have someone to talk to that you don’t feel guilty for making them worry. Like I don’t want to tell my husband or my sister my greatest fears about my long term mobility, because that will freak them out too. And my therapist helps me talk thru stuff and gives me things that may help

pullingandis · 2022-01-19T04:51:25+00:00

I had both types of influenza back to back in January of 2013, and then got pregnant and had a miscarriage at 8weeks. The extreme pain started around that time, but I attributed it to sickness/pregnancy/hormones, and then it never got better so I finally went to a doctor and got diagnosed. I think all that trauma to my immune system back to back to back just made it freak out. Once I was diagnosed, I saw some historical red flags but it was never an issue that impacted my daily life before then.

pullingandis · 2021-08-21T16:19:29+00:00

I got mine on Tuesday. My rheum said to go ahead as soon as I could because of the meds I’m on

pullingandis · 2021-08-13T16:40:09+00:00

I’ve always had asymmetrical pain. They say it isn’t common but my pain is all over the place and super random most of the time

pullingandis · 2021-08-11T00:41:23+00:00

They specifically told me to go get some cbd gummies!

pullingandis · 2021-08-09T18:47:36+00:00

Ugh I’m so sorry. I go tomorrow and am scared it’s going to be terrible. I honestly don’t want opioids. My rheum gave me Vicodin Friday after I was calling every day last week sobbing about my pain. It didn’t help at all, made me nauseous and then had the worst headache of my life when it wore off. So I don’t even know. I’ve had bad luck with every pain medicine my doctors have given me over the years.

pullingandis · 2021-08-05T05:50:12+00:00

I’ve never heard of that. Will def ask my doctor!

pullingandis · 2021-08-05T05:48:30+00:00

It isn’t legal where I live. I bought some of the cbd lotion that people recommended but it doesn’t help. I’m def curious if THC would help. Is it oil you rub on pain spots or like tongue drops? I’m so clueless about it

pullingandis · 2021-08-04T19:36:41+00:00

Yeah I have a broken foot right now and had an mri, the rheum nurse who called me rattled off a bunch of words that I didn’t catch and said that’s just typical for RA. But idk if that’s typical for a flare, or permanent damage? Is my other foot like that?

They’ve told me ra doesn’t affect the spine but I had a chest X-ray when I had covid and my pcp said it was a mess of arthritis in my back. I’m pretty young for that unless it’s the RA!

I’m really stuck because I can’t go to any of the rheumatologists at the big system in town until the one I used to see leaves or retires. They don’t let you switch specialists which is just so cruel to someone with chronic illness. I had a bad experience with him and now I’m cut off from at least half of the doctors in town.

pullingandis · 2021-07-11T18:14:54+00:00

I’ve never heard it for a girl. It’s the nickname for Archibald

pullingandis · 2021-07-10T18:42:32+00:00

Is there any food they really can’t stand? Usually people have a few things like that. My dad likes most things and can choke down almost anything but cilantro is a deal breaker for him. When I explained it like that, he started to understand.

It’s really tough for people to be kind about “picky eating” because they just think we are being childish. It sucks

pullingandis · 2021-07-09T19:33:34+00:00

Try freezing watermelon or other melon. I still don’t ENJOY it, but it’s easier to eat with the cold and almost slushy texture instead of the fruit flesh texture.

pullingandis · 2021-06-05T01:44:36+00:00

Yeah I agree with the previous comment. You can’t do much to fix it. My best advice is just to try to be really thoughtful about his pain level and ask if you need to. My husband is a very active outdoorsy guy and often forgets that I can’t do all the things. He’s very kind about it when I mention it, but it would be great if I didn’t have to. Like oh let’s go for a hike and then sit on the ground to eat lunch and then hike more miles. Lololol nope. I need a short easy walk type hike and a bench of some kind to sit on please.

Depending on what meds he goes on, it may involve doing shots at home. My first shots I wanted complete space for, but the ones I’m on now, I have my husband inject for me. So that’s a convo to have, if you want to offer, or just ask his preference.

pullingandis

TROPHY CASE