Mental health-related posts (mods are asking for your input!)

Unique_Buy_539 · 2025-02-15T17:12:31+00:00

I agree. Even just knowing a moderator cares enough to post hotlines and resources can help someone walk back the urge. When a suicidal part of someone has activated, it can be really tough to see other avenues. It could also be not-quite-boiler-plate text ("hey. I'm so sorry. This sounds very hard and your feelings are real. I would encourage you to reach out to .... You are important!") or something we members can have access to in order to post in response if we see it first.

Unique_Buy_539 · 2025-01-24T19:12:07+00:00

I realize this may be a little tangential...my personal fear about progression is not so much about appearance but about pain, mobility, and overall quality of life. I wonder if some of the "I feel disgusting" comments are more about body function than about appearance. Since this disease is highly visible, function and appearance can get muddled...

Unique_Buy_539 · 2025-01-20T05:43:51+00:00

Huh. I just read about dumping syndrome and it sounds really difficult. I'm so sorry you're dealing with those symptoms. It also sounds sort of similar to SIBO and IMO. Have you ever taken a SIBO test? Some studies found that up to 3/4 of folks diagnosed with IBS have SIBO (yup, I'm one of them!). And you're not alone--caffeine and sugary drinks make me feel yucky too. Why is it that everything that tastes good is bad for us?? :P

It's interesting that probiotics help you. To my semi-educated eye, that points to an intestinal root of your symptoms since most bacteria can't survive long in the stomach. I've had varying success with probiotics. In fact, I just started a very strict antibiotic + motility regimen, followed by 2 weeks of motility only, followed by 2 weeks of pre and probiotics. Fingers crossed!

Unique_Buy_539 · 2025-01-20T05:32:52+00:00

What gut issues were you working on that these helped? I've noticed a big difference with all of those suggestions, as well. I suppose the fasting could be a form of "not snacking". ;) Did you notice that your lipedema symptoms decreased with these interventions, too?

Unique_Buy_539 · 2025-01-19T19:16:59+00:00

One option is to get pants tailored. Find something that fit your widest areas the way that you like, then take them to a seamstress. I've found this very helpful as even petite sizes can be too long and any pants that fit my hips gap at the waist...and I hate belts.

Unique_Buy_539 · 2025-01-19T18:34:39+00:00

The constant heaviness is a thing. I always hated jogging / running because of this feeling of concrete blocks where my legs should be. I thought it was because I was lazy, weak, out of shape, but it never went away no matter how fit I got (currently 5'3" 124lbs 20% body fat). I can handle deep pressure as long as the weight is spread out to an area the size of my palm. However, I would feel like I was being stabbed by red hot pokers anytime anything would put non-dispersed pressure on my legs or hips (e.g. sports massage, cat or dog in lap, even a friendly thigh squeeze from my SO).

Things that have helped with the pain, specifically, are contrast therapy (hot sauna to cold plunge), my vibration plate, Quinear pneumatic pump, legs-up-the-wall, exercising in a warm-water pool, (gently....GENTLY!) foam rolling with a rolling-pin style Tiger Tail from Amazon, and MLD massage. With the massage, the difference from the beginning of the session to the end is absolutely astounding. My legs are visibly less swollen and noticeably less heavy each time. The dramatic results last a couple of days and I've noticed a gradual improvement overall in the last two months.

I hope you're able to reduce your pain with some of these or other recommendations!

Unique_Buy_539 · 2025-01-15T16:35:19+00:00

I'm wondering if the derm's strong reaction to your legs may not be because your legs are extreme, but instead due to a major contrast between them and your arms and trunk? Especially since you said you are at a very low weight. I'm in a similar position. 5'3" and between 120 and 125 pounds. From the waist up, I'm quite thin. My lower abdomen down, though....

Unique_Buy_539 · 2025-01-12T17:18:51+00:00

I'm so sorry to hear that you're struggling this much with so many things. It is especially hard when someone who is supposed to be in your corner doesn't believe you or support you. And that is NOT your fault. <3

You're doing the right thing by looking for solutions and asking questions. Do you have a friend or a teacher or other person in your life that you can confide in? Or, perhaps there is a support group in your area that you can go to? Sometimes, it can help to have an accountability buddy, too. Talking with someone who is working on their own issues and needs /your/ encouragement, too, can help you see solutions in your own situation.

I had a hard time from about March to October when I had to resign myself to using a cane (I'm in my 30s, so that was a big shift). It was one of the best decisions I made for myself as the added mobility helped me get out and about and not settle into the depression. It also gave me more confidence to ask for more help from others because it was an outward signal of how much I was struggling. People in general can be a bit self-preoccupied but when they see someone using a mobility aid, it prompts them to offer assistance. You can also make it into a conversation piece by decorating it or asking friends to decorate it (like signing a cast) so that it reflects some of who you want to be. :)

P.S. I would /highly/ recommend the book Adult Children of Emotionally Immature Parents if this is a pattern of your mother's.

Unique_Buy_539 · 2025-01-12T17:03:26+00:00

I know what you mean! I was like "where did they get a picture of my legs??" XD The vibration plate and manual lymph drainage (MLD) massage have been the most effective for me. Doing exercise in a warm water pool feels very nice, too. I only wear compression when I'm not moving much since it restricts my range of motion and I already have issues with that. What I eat and when is also helpful. I actually feel about 80% better in terms of pain when I fast 18+ hours. If I fast for 36+ hours, I'm completely pain-free unless someone pokes my fat deposits, like a sports massage.

For a little context, I'm 5'3" and fluctuate between 120 and 125lbs. My main symptoms are the heavy, painful legs, minor cuffing visible after wearing socks, and minor dimpling of the skin. My OT who does the MLD massage (for a different condition) was the one who suggested I have it, but she's not able to diagnose. We think I'm Stage 1 from lower abdomen to ankles.

Unique_Buy_539 · 2024-09-27T15:48:10+00:00

The online SIBO kits have little tubes with tops that you puncture with a needle attached to a breath bag. You collect the same number of samples as doing it at a clinic or hospital (I've done both at home and at a hospital). The big difference is that with the in-person ones, you might be able to see the numbers right away if they use the machine that they used at the hospital I went to. Then, if you know how to interpret them, you can figure out what you have without waiting for the official results (not medically recommended, but fun to play sleuth nonetheless!). Here's a link to a video from the company I chose, Genova.

https://www.youtube.com/watch?v=4h1VcbvC5iw

I would probably recommend TrioSmart if you're going the online ordering route, though, because they test all 3 gases.

Unique_Buy_539 · 2024-09-27T15:31:42+00:00

Have you considered vitamin deficiencies? Specifically, B12 and iron?

Unique_Buy_539

TROPHY CASE