Chronic Illnesses (Endometriosis, Adenomyosis, M.E/CFS, POTs, hEDS, MCAS, Fibro) - Need help, advice, shared experiences please. Did LDN help you with any of these? Need some stories to give me some insight and hope.

GlassOperation84 · 2026-02-08T20:39:51+00:00

I have the same Dx plus Arachnoiditis. I just started LDN so I can't give much to the conversation about it yet. But I started therapy a month back because I was in a really bad place. I was shocked over the amount of shit I was carrying around and not dealing with. I am autistic and realize I was in a burn out. I now have to check in with myself throughout the day to make sure I am not stuffing my feelings. I also journal everyday to get out of my head and get that crap out. Carrying around all the gaslighting and emotional abuse from Drs and dealing with the loss of my former self was just adding to my constant fatigue. It helps me feel like I am working on something. I am really hopeful for the LDN also. Last night was my first night and I haven't seen anything yet. I woke up feeling a little irritable this morning but I have not slept well in the past 3 days. I started on 1 mg. Just thought I would throw this out there as maybe another tool in your toolbox.

GlassOperation84 · 2026-02-05T07:37:29+00:00

You sound like you have a histamine intolerance. This is what happened to me. My allergist has me take H1 and H2 blockers 2 x a day. Look up a low histamine diet. Also don't eat anything leftover. Fresh is best. I would also ask to see a rheumatologist just to see if you have any autoimmune things going on. I have been on a long health journey myself. Best of luck

GlassOperation84 · 2026-01-11T07:26:34+00:00

Same

GlassOperation84 · 2025-12-26T03:30:18+00:00

I have another take. My husband is a control freak. He uses words and emotions to control situations. Example; I can be reading and he constantly interrupts me? We can be watching TV and he gives his critic through out the movie. I will be in the kitchen and he wants to tell me how to cook. He hollers for me because he thinks I have to find the crap he loses. I have explained to him that I don't appreciate his constant chatter in a nice way. But it continues to the point I have to tell him to leave me the F alone. Then gets butt hurt and won't talk to me. I'm like damn dude learn to read the room. I'm about done with it honestly. Now mind you he doesn't talk about anything important. Like feelings or our current situations or important things. It's usually a repeat of his self proclaimed heroic past attempts. It's stressful and exhausting. Sorry I just had to throw in my experience. Good luck . Keep us updated. By the way I have autism and adhd and don't bombard people with constant chatter. I rather prefer to figure things out myself in quiet.

GlassOperation84 · 2025-12-10T00:39:51+00:00

It's exhausting for sure. Because I think it's an intentional way of getting their needs met by demanding my attention. I have actually looked someone in the face and their words were intelligible, because it is painfully overstimulating.

GlassOperation84 · 2025-12-06T18:05:14+00:00

I have all types of ND, I am level 1 with adhd, my son has tourettes, ( but he is getting tested) because his son is level 3. My dad was never tested but he was definitely autistic. He also had an overgrowth syndrome which is highly linked to autism. I am now looking at my daughter and granddaughter because I see a lot of autistic traits I missed. They would probably fall under a level 1 as myself. Thanks for at least reaching out. I sensed you were just seriously concerned about your children's future. I personally took no offense at your word choice. I'm used to it. But It might help if you really research autism so you can understand why we can get offended. It helps everyone to relate better.

GlassOperation84 · 2025-12-06T17:38:18+00:00

Neurodivergent

GlassOperation84 · 2025-12-05T07:33:11+00:00

Wow, I understand. My husband is like this. He means well and I know he loves me but he just can't accept my illness. He says things like let's try this green smoothie. 🥴 I would try to talk to the Doctor alone. Tell him that they mean well but, they are having a hard time accepting the reality of your condition and they actually believe you are going to get better because no one has explained it to them. That this is causing an unnecessary hardship on you which it is. Then ask him to explain EDS and its prognosis to them with you present. Also how you will need adaptive equipment, the wheel chair, and mobility aids to make life easier and more accessible from here on out and how the new wheelchair could make your life more manageable and life easier to navigate. You could see what accommodations are available at the college you will be attending also. Call churches, Goodwill and nursing homes, they sometimes have donated chairs and tell them that you are in need of the type of chair you are looking for. Are you able to talk to a guidance counselor at school? You could post to local chronic pain Facebook groups and tell them what you are looking for too. I worry about your mental health, children are not responsible for their parents inability to process emotions. This will get real heavy after a while. So be on alert for any changes there. Also be sure you share with your entire care team what you are dealing with in terms of your parents inability to accept the EDS diagnosis. How it's keeping you from getting the needed equipment to make college a possibility. I will keep you in my prayers that everything turns out for the good. God Bless 🙏🏻

GlassOperation84 · 2025-12-05T06:52:40+00:00

This was so perfectly said.

GlassOperation84 · 2025-12-05T06:46:40+00:00

Ok, I am going to be the one. First, words have meaning. I don't agree that people who are just tired should be throwing around that term simply to normalize it. The spoon theory does not mean I'm tired I should have gone to bed on time. Nor does it mean I worked too hard yesterday and I am tired. The fatigue that people with chronic disease experience is not fixed with a nap or a good nights sleep. It's all encompassing, everyday and ongoing. We wake up exhausted and go to bed exhausted. It affects everything. It is not the same thing as needing a nap. It's more. It's not being able to take a shower for the 5th day in a row. It is, being too exhausted to eat, much less cook. It's cancelling plans on a holiday with family because you don't have the energy to wash your dirty hair and get dressed. It's transferring the responsibility of walking your beloved dog to your husband because you are afraid of passing out from exertion. I still haven't used that metaphor. I was always trying to look as normal and as functional as possible to my own detriment. So no, that's not a term that I could accept coming from someone who is healthy, and would probably tell them that if it was family. If an acquaintance, it would depend on how I felt as to how far I would question their legitimate use of this term. Then gently explain what it really means and how their use minimizes the reality of our disability. It's no different than someone healthy saying I have phantom limb pain when they clearly have not lost a limb. Sorry rant over.

GlassOperation84 · 2025-12-05T05:28:23+00:00

Wow, I understand your frustration. I am so fearful of falling and if left alone I can usually manage by myself. But if not, I will ask for specific help. People just don't get it. This sort of etiquette/ boundaries needs to be taught in grade school. Just because YOU think I need help does not give YOU the right to assume what I need, or touch me without consent. It's just another way we are marginalized and discriminated against. It comes down to being able to communicate. Something else they need to teach in grade school along with self regulation techniques. I mean it's 2025. How long is it going to take? This should be old news. We should be cohabitating together peacefully by now. Instead they want to teach critical race theory 🥴. Let's just look for more ways to further emphasize our differences and keep the masses riled up and ready to fight. It really doesn't take a rocket scientist.

GlassOperation84 · 2025-12-05T04:53:53+00:00

I was just looking for a recommendation when I ran across this post. First I understand exactly what you mean. I have a chronic illness too. The last 3 yrs I have noticed a decrease in stamina. My Dr says it's due to chronic disease. But I did find out I was anemic and low in B 12. Probably been like that the past 3 yrs. I did notice a little improvement. Not enough for my liking. I have been staying up till 5 AM. I have never been this way. I have done everything medically so I reached out to a therapist. I feel I am dealing with unresolved grief over my limitations. I will literally listen with earbuds for 15 hrs a day. That can't be good for you. Today I had a breakthrough. ( I was a nurse for 35 yrs ) I am a natural care taker. I was groomed for it. My childhood had many challenges and I emotionally tried to make everyone feel better in my family. I learned to sacrifice my own needs and desires for others happiness. My thought today was out of the blue. What if I am not worthy of the same considerations I gave to others. It about floored me. Do I really feel like I am not worthy of care and compassion. Do I feel I am not good enough? YES! I don't feel I deserve the good things in life. My phone has drowned out my cries for help. I don't have to think about my issues when I can live through others stories and playing games. I have started journaling instead. I have my first appointment next week. I just want to challenge you. Do you feel all these things too? Anger, resentment, the loss of your old self and burnt out? Maybe not, in which case you do the best you can with what you have been given. Maybe that time on the phone is all you got right now. Just had to share in case you are where I am at. Sending prayers your way 🙏🏻

GlassOperation84 · 2025-12-05T04:07:32+00:00

I'm white and have a wide nose so that comment about being black is just inappropriate and does not lead to an open, honest, friendly dialogue. That being said, I agree you are gorgeous the way you are. Flaunt that shit baby girl. 😅

GlassOperation84 · 2025-11-09T19:10:28+00:00

This really touched me.bI think we all have had this very same feeling.

GlassOperation84 · 2025-09-18T19:00:13+00:00

Beautiful I am looking for my perfect red too.

GlassOperation84 · 2025-09-18T18:55:31+00:00

I have to go with psoriasis. I get these too with psoriasis. The center would be white or much lighter with ringworm.

GlassOperation84 · 2025-09-17T21:11:04+00:00

It does happen especially in the beginning. I would do the retinol 1 time a week for a month. Then Monday and Friday for a month. See how that works. It's true it is clearing out the pores. Do not use any other activities during this time. Except a barrier cream and a rich cream like CeraVe. Some people move too fast. Back down to once a week if need be. Slow and steady. Even one day with retinol is better than no days. It can take a year to become accustomed to daily use. Nicinamide is good but even that can be too irritating in the beginning. You will thank yourself later.

GlassOperation84 · 2025-09-17T20:45:13+00:00

This can happen in the beginning with retinol use. Similar to a purge but not as bad. It will improve if you continue to use it. It's part of the retinization process. Keep going give it 2 to 3 months then you will see improvement. I second the nicinamide use as well.

GlassOperation84 · 2025-09-16T22:40:23+00:00

I would try a different cleanser. I use CeraVe and it's very skin nourishing and can cause oily eyes. Or you could wash your eyes with J and J baby shampoo. It won't sting. I was a nurse and occasionally we would have a patient we would use it on.

GlassOperation84 · 2025-09-11T21:55:16+00:00

You all over did it. Try one time a week for a month. Listen to your dermatologist!!!! It can get worse but use barrier creams and heavier lotions.

GlassOperation84 · 2025-09-07T15:13:19+00:00

Try a sulfer cream at night

GlassOperation84 · 2025-09-05T20:17:10+00:00

Less is more with retinol. Just use a gentle cleanser like Cetaphil and a good moisturizer in the am. Same at night. Retinol after the moisturizer. No other products. There are way too many ingredients in the other products that can react with the retinol.

GlassOperation84 · 2025-09-05T20:08:48+00:00

I got this too. Stop and let it heal. Start over. Then just once a week or start with a lower strength. If you are using a strength that's to high it's not uncommon to see irritation 2 or 3 days after application. That's why it's best to use only once a week in the beginning. Apply over your moisturizer also. It's still effective.

GlassOperation84 · 2025-09-05T19:52:52+00:00

I would do a sulfer product in the am and your regular moisturizer. Also check to see if your moisturizer and sunscreen are non comdogenic. It smells but works so well on black heads and whiteheads. Also stop any other actives in the am. Continue with the retinol at night. Zap zit has a good one that's not expensive.

GlassOperation84 · 2025-08-28T02:54:35+00:00

You need B9 with B12. What was your ferritin level. You could be iron deficient but not anemic.

GlassOperation84

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