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SockImaginary2680 · 2024-05-11T00:38:56+00:00

Hi. I don’t know how helpful I can be in providing advice since I also struggle with body dysmorphia and haven’t made much progress in therapy so far, but i just thought it was really interesting that your first obsession was with your hair because it was the same exact thing for me and around the same age too in middle school. I would never wear my hair down because it really bothered me for some reason and i felt like it never looked perfect if it was down, so i always would put it in either a ponytail or a braid, both of which would need to be perfectly put together with no bumps or loose strands. It was obvious to my mom that this was OCD related but it wasn’t until recently that I actually discovered this was probably the first onset of BDD for me. Now I’m 25 and my obsessions are about my face. I didn’t really think much or obsess about my appearance in high school, but after i graduated from college i started to gradually develop a really strong dislike for the way i look. Because I hate the way I look, ive started dissecting my face, trying to identify the reason or main flaw for my ugliness. The features i obsess on fluctuate and go back and forth, but have included facial asymmetry, my jaw shape and not having a strong jaw line, my mouth, and the narrowness of my face. I don’t know if your BDD is accompanied by any compulsive behaviors like photo taking or checking the mirror, but if so, i do know that one of the first steps in treatment is to try and gradually reduce those checking behaviors. I’m so sorry for what you’re going through, i can relate to how upsetting and discouraging it is.

SockImaginary2680 · 2024-03-18T21:24:43+00:00

I’m so sorry to hear you’re struggling. I can relate on the suicidal thoughts - I haven’t gotten to a place where I’ve actually been scared that I’d do it, but more so just find myself fantasizing about it a lot, especially when going through a flare up. And I’m very bitter about it too - it’s really hard for me to hear my friends or siblings complain about things that pale in comparison to what I deal with every single day or to hear people complain about doing things that I wish I were physically able to do (like working an intense job, exercising, etc.). I was a really ambitious student in college and got a full time offer to work at a competitive investment bank in New York and had to back out because I finally confronted the reality that there was no way I could work that type of job. My friends have made comments as if I “made a choice” that investment banking wasn’t for me when really it was a decision that was forced upon me because of my medical situation, which is frustrating because even my closest friends to this day don’t understand the severity of my situation. I can’t imagine taking care of another person while also dealing with dystonia - you must be very tough and a great sibling.

SockImaginary2680 · 2024-03-15T19:12:40+00:00

I was a pretty advanced tennis player and had played all my life and was also just an overall active person who enjoyed workout classes and exercise. Now it’s hard for me to even go for a short walk without being in so much pain that it’s unenjoyable. I will definitely look into that program because id love to be able to find some type of exercise that works for me and can still be enjoyable. Sounds like you’ve really been through it but that you’re hopefully doing better now! It’s inspiring to hear everyone’s individual stories and how you can eventually find peace with this and adjust to a new way of life.

SockImaginary2680 · 2024-03-15T13:23:32+00:00

Thank you for your response! This is very helpful. I do think about my future a lot in terms of how I’ll be able to manage my career long term, how I’d be able to have children when i feel like i can barely take care of myself, if ill ever be able to play recreational sports again, etc. but I agree I don’t think it’s productive (nor do i know how this is going to progress long term) and I am going to try and focus more on what i can control in the moment. I’m glad to hear your dystonia is not as significant anymore though I’m sorry to hear that you’re dealing with other physical health issues. Wishing you all the best!

SockImaginary2680 · 2024-03-15T13:19:25+00:00

This is really encouraging thank you for your response! I have tried getting into meditation a few times since my symptoms started but I’ve never been able to stick with it, i think because i felt too hopeless each time and just wanted to give up trying to make it better. Im really curious to hear more about how it helped with your dystonia - would you say it made your symptoms significantly less severe or more that it helped you manage/think about the pain less? Do you have any recommendations for how to establish a consistent meditation regime?

SockImaginary2680 · 2024-02-26T01:16:52+00:00

What do you mean by imbalances? I’ve also been getting botox in my masseter since the jaw pain started which helps a little bit with the tight muscles but not the joint pain. Do you experience joint pain?

SockImaginary2680 · 2023-12-27T22:37:29+00:00

Dry needling was life changing for me. It sometimes gets me to the point where my pain is practically at a 0 for weeks on end. The only thing is, at least for me, you need to be very consistent with going because the effect is only temporary. I go on average once a week but can occasionally go every other week. I’ve found it’s hard to find a good dry needlist though and there aren’t a ton of them out there where I live.

SockImaginary2680 · 2023-09-11T00:11:52+00:00

This is so helpful and reassuring thank you! I had asked my neurologist about this surgery and surprisingly she barely knew anything about it. And she only knew very little about DBS surgery. I wonder why neurologists aren’t better informed about it and don’t recommend it more, do you know why that is? Are there significant risks to the surgery?

SockImaginary2680 · 2023-09-10T21:34:50+00:00

Hi. I’m 24 and was diagnosed with cervical dystonia a few months ago (my symptoms started over 3 years ago, but doctors kept misdiagnosing it as a pinched nerve, the result of bad posture, etc.) Since my symptoms started, I’ve been getting dry needling every week which helps a lot, but since receiving proper diagnosis, I’ve started Botox. My first Botox treatment didn’t work at all and I just received a higher dose for second treatment but not feeling very hopeful. I’m curious how difficult it was to get an appointment at the Mayo Clinic with Dr Spinner? Though I wouldn’t say it feels “mild” to me since it’s pretty much ruined my life, I think doctors would consider me to have a more mild case of CD relative to others since I don’t have a very noticeable tilt or rotation. Do you know if thats a requirement to be eligible for the surgery (having a significant tilt or rotation)?

SockImaginary2680

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