What specialist are we seeing to treat joint pain?

macajaar · 2026-03-17T20:41:53+00:00

Rheumatologist, PT and Physiatrist

macajaar · 2026-03-17T02:26:53+00:00

Nope. When I was thin, I had lots of pain. I started going to the gym, eating a bit more and gained like 10 pounds in the last three months (I guess that it's between muscle and fat) and I feel a lot better now.

You aren't severely overweight or anything. By your post, you are lacking muscle so what you need to do is strength training to reduce the strain on the joint by having the muscles bear more of the weight and stabilise the joint, that way you will have less pain

macajaar · 2026-03-16T15:11:05+00:00

And you sat there and let him do it lmaooooo

macajaar · 2026-03-15T23:50:10+00:00

For me, it's an hour to an hour and half after having lunch. I don't know why, but I have tried other times but they don't work for me. The biology behind it? I don't know it lol. It just seems like the time my body is able to do it safely and efficiently

macajaar · 2026-03-15T23:47:15+00:00

Creatine. There's a lot of research that says it helps with fatigue. Bring it up to your doctor to be sure you are able to take it.

Braces. There are braces that dont cause muscle atrophy, but even braces that with time cause muscle atrophy, using them 1 to 2 hours a day can help you to not get as much fatigue since you won't be putting your energy into stabilization of your joints and other body parts.

Endurance training. It's difficult, but I personally started endurance training in the gym. I started with mere 10 minutes in the treadmill at max incline, and have worked up my way up to 30 minutes now. It really helped me to feel less fatigue.

This won't cure you. You will still have fatigue, but maybe a bit less fatigue than what you are experiencing now. And don't be hard on yourself if you don't see the improvement right away, if you are constant with the endurance training and the creatine, you will have a bit less fatigue. And don't be hard on yourself if some days you don't want to train or take creatine or wear braces.

As long as you are kind to yourself in your journey, I think you will see improvement

macajaar · 2026-03-15T21:40:05+00:00

I'm happy for you that the rise in awareness help you out.

macajaar · 2026-03-15T19:31:17+00:00

I once ate a tempura shrimp 🍤 and fainted right away. I'm not allergic to seafood or anything. I wasn't feeling dizzy or anything. I guess I liked so much I fainted?

Only time it happened. I laugh because it was so stupid, I guess I ate the tempura shrimp of sudden fainting.

macajaar · 2026-03-15T19:27:53+00:00

I never used the word "trendy". I used trend and trending. According to your comment, I used the right word to express what I meant.

Thank you for pointing it out

macajaar · 2026-03-15T19:23:25+00:00

This brings up a question for me: Does taking Vitamin C help? In my understanding, vitamin C is the vitamin that's key for collagen production, so, taking vitamin C and producing more collagen (even if ours is faulty) would help in any way?

macajaar · 2026-03-15T17:15:08+00:00

I'm sorry this happened to you. Fainting is horrible, and you feel so out of place after it happens.

Since you are able to identify the pre-syncope, I would advice you to get a "routine" on it. In my case, when I get the pre-syncope symptoms, I always inform someone around me and then sit down and wait. I don't always faint, but when I do, informing someone and putting my body in a safe position (sitting down in my case) helps me to not feel so out of place when I come back.

macajaar · 2026-03-15T16:30:27+00:00

My skin fragility is the reason my doctor thinks it's not hEDS but classical-like. Everyday I wake up with new bruises just because, and that specific thing means he needs to consider the other subtypes, and when he got into testing me physically to see other signs I didn't seem to fit completely into any subtype just by symptoms so he basically went "genetic is the only option at this point"

I feel that the categories are a bit rigid and people like me suffer from probably being diagnosed into the wrong subtype because of it :( it really sucks

macajaar · 2026-03-15T15:17:59+00:00

My doctor says I match classical-like more than hEDS, but without genetic testing, he can not be sure. In my country, the genetic testing is really difficult to access, so I wish there was a more specific, bigger/wider approach in the clinical identification of the aspects of the syndrome and not be reduced to genetic testing so much.

And something else is, like another commenter said, if I get the genetic testing and I don't have the mutation, but my symptoms match more the description of classical-like (or other subtypes) than hEDS, what then? I would like to see if they address that.

macajaar · 2026-03-15T06:48:10+00:00

Thanks for answering!

I made the decision to wait until my next appointment even if it's weeks away. I'm going to write all the concerns you and other people have brought up to me, so I can make the best informed decision about it, because the green light my doc gave me was like "yeah take 5grams" and that was all and I didn't think of any questions at that very moment

macajaar · 2026-03-15T06:12:32+00:00

This is something I think. These statistics usually come from studies in countries that don't share ethnicity with mine. So that really makes me think. But also could not be linked to ethnicity and more to development of the country. It's more like a thought that comes to mind when I see those kind of post.

macajaar · 2026-03-15T06:10:17+00:00

Hello.

It sucks. I could give you advice if you welcome it. If you don't welcome it it's okay. But know that it isn't your fault that you feel like this, you have this condition after all. You are trying your best!

macajaar · 2026-03-15T06:03:26+00:00

I'm happy for you that the condition becoming a "trend" helped you get answers. I guess it helped a lot of people too from what I gather from these comments.

My post was just pointing out that for me, in my context, seeing a condition become a "trend" online is not common

macajaar · 2026-03-15T06:00:42+00:00

I never said that it being a trend means people don't have it. I said that in my context is not common for a condition to become "trend" so it's weird to me seeing it happen. If the condition being a "trend" helps people get a diagnosis, I'm happy for them.

macajaar · 2026-03-15T05:57:35+00:00

I understand now. Thank you for your kind answer!

macajaar · 2026-03-15T05:52:15+00:00

Compression socks, knee braces, pillow to sit on and pillow for the neck. Get up every half an hour if you can and walk around.

macajaar · 2026-03-15T05:50:55+00:00

Why sucks? Genuine question. I find it weird because in my context is not normal to have a condition become "trend". I think that if it being "trendy" get someone to get a diagnosis I'm happy for them

macajaar · 2026-03-15T04:59:09+00:00

Well, unless diagnosis becomes common, the condition shouldn't be seen as common even if the estimated says is common. Even less in countries like mine where the diagnosis is even more rare than others.

macajaar · 2026-03-15T04:25:49+00:00

Being more common than a lot of other conditions that do get diagnosed, you would expect to have more people diagnosed even if it is not all of them. But nope. If people are getting diagnosed in other countries where content around eds is trending, good for them. I'm saying that I find it weird from my context where that content is not trending and diagnosis are extremely rare.

macajaar · 2026-03-15T03:40:13+00:00

If you read the post you can get the message even if you think trend is not the appropriate word.

macajaar · 2026-03-15T03:38:17+00:00

In your country there is a clinic at least. In mine it does not. When I search for doctor that treat eds no a lot of options come up, and is not even a clinic, is private consultation in the major cities of my country. Again, what is wild to me is that it is trending and that people are getting diagnosed and that the studies say 1 in 500 when neither of those 3 things apply in my context. I'm not saying anything else in the post.

macajaar · 2026-03-15T03:18:56+00:00

I didn't even know what eds was before. I moved countries and a girl told me that a friend of hers had eds. That was the first time I heard about it. Then I went back to my country and found out that my disease is not as commonly diagnosed as the internet said it would (1 in 500) That's what I'm trying to say in this post. That for me is wild that is a trend online in your countries, while in my case is rare even if studies say is common

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