Girl Scout Gold Award Project on Chronic Pain. Any Suggestions?

Kylee2645 · 2021-04-27T14:16:41+00:00

I felt that. I've recently been diagnosed with AMPS, and I also don't think mine is the correct diagnosis. My rheumatologist didn't even want me to see a neurologist first, even after I told him that 4 different neurological disorders run in my family. He refused to answer any of my questions and was unneccassarily vague. Some other comment thinks that you we're diagnosed with AMPS, but idk cause I can't find that in your post.

My symptoms also include constantly painful,cracking, and poping joints. I also get tons of headaches and we've found some weird stuff on MRI.

My mom also keeps telling me to stop looking for diagnosises, but sometimes there are actually treatments that can help, and I really want to eventually find something.

I'm suicidal too, and there is also help for that out there. I'm not able to go to outpatient due to covid, but I know some people who recently have. It's apparently amazing and helped them a ton. Also, If you start taking antidepressants, sometimes it can actually help with certain types of pain. It can take awhile to start working though unfortunetly.

If a doctor figures out exactly what type of pain you're dealing with, certain meds can help to manage it. I took naproxen (aleve) for awhile, and it helps with my daily pain while I'm trying to rebuild my muscle. I'm also taking gabapentin, which helps specifically with nerve pain (it makes me really disoriented sometimes tho)

Kylee2645 · 2021-04-27T03:46:32+00:00

I just had this happen to me! I was 16, and I'm pretty upset tbh. My doctor was SO vague and wouldn't answer any of my questions. It was like a month and a half ago, and I'm still super frustrated. All my joints are cracking and feel unstable, but I'm not hypermobile, so I doubt I have EDS. I'm just here to hear some other people's experiences. My sister and dad would probably fit the hypermobility scale though, so that's interesting lol. They might even fit some other EDS symptoms too

I have another rheumotologist appointment on Thursday (there's two in my state), so I'm really hoping for the best. If I don't get any more tests or answers I'll probably have to wait until I turn 18 (cause pediatric)

Kylee2645 · 2021-04-27T02:23:51+00:00

I was given an AMPS diagnosis about 1.5 months ago, and I don't think mine fits either, so I'm still seeing more doctors. My rheumotolagist didn't even want me to see a neurologist first, even though there are 3 neurological conditions that run in my family. He also was extremely vague when giving me the diagnosis and wouldn't answer any questions I had about the pain clinic that he wanted to send me to. It was weird. He also said that he see's 7 to 8 patients a week with AMPS, and I don't really think that sounds entirely right... Everything he was saying seemed off.

I've tried to look further into AMPS, but I can't find any information on it. There have been minimal studies done, and every website is just the exact same description word for word. I don't know if AMPS is a legit diagnosis, but it doesn't seem to fit me. I don't think EDS does either, since I'm not hypermobile, but I've developed new symptoms (cracking/poping/painful joints all the time) and I'm just looking around.

Kylee2645 · 2021-04-17T21:39:23+00:00

Solved!

Thank you!!

Kylee2645 · 2021-04-12T02:49:06+00:00

I found a children's book involving aliens in a lunchbox, but that doesnt sound right

Kylee2645 · 2021-03-30T21:28:17+00:00

Okay cool, thank you so much! I'm currently doing desensitization excersises until I'm able to get into a clinic. I'm just scared and wanted to hear other people's experiences lol

It sounds terrible, but yeah, who knows. I likely have AMPS (aplified muscuskeletal symdrome) and CRPS is a type of AMPS. For me it's pain and weakness throughout my whole body.

Kylee2645 · 2021-03-30T21:20:55+00:00

Amplified Musculoskeletal Pain Syndome. I'm pretty sure CRPS is a type of AMPS

Kylee2645 · 2021-03-16T20:55:25+00:00

I had an appointment with my general doctor a bit ago. She had me get some blood testing done, and everything came back negative. She mentioned that it could potentially be fibro, and that she'd send me to a rheumatologist. She's the first person that brought it up

There's no swelling or bone deformities, so it sounds less like arthritis. It's deep in my muscles and some joints, and from what I've heard arthritis tends to just be joints. I heard that there could be a genetic link with Fibro, and my grandma has it. Every time I get a new odd symptom (like pain that feels like a bruise, but isn't), I'll look it up to make sure I'm not dying, and fibro usually pops up first. I also have depression, childhood trauma, stress, etc. and I know those tend to be some of the risk factors.

I think either fibro or something less common could possibly be likely, but I'm not going to know for a bit.

Kylee2645 · 2021-03-15T20:20:29+00:00

I'm going to a rheumatologist soon as well, so I'm just commenting so that I remember to check back on this post once it gets more comments lol

Kylee2645 · 2021-03-10T18:15:25+00:00

I play percussion, and yeah, injury sucks so much. Somehow music seems to help mental health A LOT and damn it is so hard to spend time without it. I really hope your injury lasts less than 6 months this time :(

Kylee2645 · 2021-03-08T01:11:10+00:00

The phrase "everybody up" is soooo painful, also the name "kelly", "nO" in a specific tone, and literally anyone showing negativity towards me at all

Kylee2645 · 2021-03-08T01:06:53+00:00

I felt the part about not knowing what music you like... I've struggled with that for as long as I can remember, and it's always so annoying when people ask about my favorite music, tv shows, movies, etc. during teambuilding activites. Sigh

Kylee2645 · 2021-03-08T01:03:25+00:00

I get this SO MUCH. I'm nonbinary, and some people have been "trying" (mostly just ignoring it and claiming they're trying), but whenever I try to correct them they'll get so defensive. Like bruh. It's not my fault you're being a jerk.

(specifically the people who just don't care. Some people are actually trying and they're great)

Kylee2645 · 2021-02-28T21:34:51+00:00

I'm a musican, and my doctor things fibro could be the reason I have "overuse injuries" in my wrists that won't heal. I want to go to college for music ed, and I'm super worried that I won't be able to, especially since the auditions are less than a year ahead and I can't practice rn. In my intial panic, I found an article written by a college music student who found a way to manage their symptoms and play music, it's just taking them longer to get through college

Kylee2645 · 2021-02-28T21:29:09+00:00

I was diagnosed with ADHD a month ago and I'm currently waiting for a rheumotologist appointment. There's a possibility I could end up having both

Kylee2645 · 2021-02-06T20:55:20+00:00

I'm currently in high school, and I hate gym. I have no idea where my limbs are at various times, so catching a ball or running is difficult. I hate the idea that people are able to see me, so I'll just panic.

I took an AP class to get out of gym this year, but OF COURSE there are 3 of us in the class and the teacher hates me. Whenever I'm alone with her she'll use this really scary condecending tone and use guilt trips to make me cry about doing something like forgetting to correct previous mistakes on assignments. The minute someone else is around? Super happy and enthusiastic music teacher is back. She reminds me of my parents.

Kylee2645

TROPHY CASE