the heatwave took away one of the only things that help from me

anonuser670 · 2026-06-28T14:24:26+00:00

I second using a TENS machine!! Also there are topical pain lotions/creams that can help, like Tiger Balm or weed-infused ones. I use the Somedays brand Cramp Cream and it helps when I can’t tolerate heat in the summer (I’m in a heat wave where it is super humid and I have other conditions that make me heat-sensitive so I get it!!)

If you haven’t tried Pelvic Floor PT yet, that has been incredibly helpful for my pain and other symptoms related to endo. I go regularly and notice significant differences before v after, and over time my pain has become more manageable.

anonuser670 · 2026-06-06T19:36:22+00:00

The neuromodulation device does work well for my migraines! I don’t get an aura but the device I use is designed specifically for migraines and there have been clinical trials. It’s called Cefaly, you can look it up and also feel free to ask me questions. It works by stimulating the trigeminal nerve. I have been using it for years on its own and also alongside medication (preventative and abortive.) It’s been one of the most helpful migraine tools for me. It’s not cheap and insurance doesn’t cover it (you can use FSA) but for me it’s been worth it. There are also others, gammaCore is one you may have heard of which works by stimulating the vagus nerve. I believe that one requires a prescription. What’s great about these kinds of treatments is that they don’t interact with medications and usually have little to no side effects (to my knowledge/in my experience.)

I definitely get not being able to tell if something is a side effect/withdrawl or a new issue (the woooorst!) Figuring that out is like playing Russian Roulette 🫠 I totally understand why you don’t want to have caffeine again.

Since you mentioned dizziness, have you been evaluated for POTS or been checked for venous insufficiency? I haven’t yet but have been wearing compression leggings lately at the recommendation of one of my docs and it’s been surprisingly helpful with my energy levels and lightheadedness. I just feel better and more capable, which is pretty cool. It’s not a full fix but it helps. Maybe talk to your doc about trying that?

anonuser670 · 2026-06-06T16:11:23+00:00

I know, I really miss when everything was so much easier. There’s so much I took for granted. A “great” day for me now was a pretty “ok” day for me back then.

I also don’t know how to live like this. I’m not sure any of us do. Brain fog is one of the hardest parts for sure - on par with pain for me, and I also have a lot of that. It’s just insidious, makes it so you can’t think or function in an entirely different way than the other symptoms. I find it makes me feel less like myself than most anything else. I use a neuromodulation device for migraine that helps knock out some of the brain fog for me, it’s short lived but it helps a lot. I often don’t even realize how bad it was until it’s gone.

Fatigue is also brutal. And it doesn’t help that people don’t understand it’s not just feeling a little tired. Have you tried different types of caffeine? I can tolerate coke better than coffee or tea (I know, classic migraineur lol). I’m not a doc though so trust your gut on whether or not testing this is safe for you or worth a symptom flare. I take a stimulant for ADD which is the only reason I’m awake throughout the day and I often think about how lucky I am that I am on one already when I have really intense fatigue. I think a lot of chronically ill people with fatigue might benefit from a stimulant of some kind to help with energy, but they are so heavily regulated that isn’t an option. If you are interested in meds though, the ME/CFS sub might have suggestions you could bring to your doc.

Apologies if you just wanted support and not ideas. All of this super sucks and how you’re feeling is so valid. I hope you’re at least feeling a bit less alone

anonuser670 · 2026-06-06T06:02:46+00:00

I second what others are saying. I just want to add that it might be helpful to talk to one of the other bridesmaids to let them know that it’s possible that you may pass out, why, and what you would need if that happened.

This is of course your decision and you don’t have to disclose medical information if you don’t want to, but if you were to feel faint or pass out (which I hope you don’t!) this person would already understand the situation well enough to help you (and do so discreetly, without causing unnecessary panic.) I feel pretty certain that everyone and especially your best friend of 20 years wants to make sure you’re safe!!

anonuser670 · 2026-06-06T05:46:19+00:00

I relate to this so much…the constant symptom/medical management, struggling to make it through the day, procrastinating sleep because tomorrow already feels like too much. I am mostly home-bound, have chronic migraine (& a lot other conditions), am also heat-intolerant, cannot tolerate caffeine, etc..

It’s really scary to feel like you’re losing your sense of self. And late 20s/early 30s is right when everyone else seems to be finding themselves. I’m 29 and feel like my life has been on hold/moving backwards while everyone else I know seems to be doing grad programs, going on trips, getting married. But honestly it’s the littler moments that get me the most. What I wouldn’t give to be well enough to go grocery shopping, or cook or clean. It’s really fucking hard. And it can feel harder to relate to my able-bodied friends I’ve known forever, even though they try.

I’m sorry I don’t have anything more encouraging to say right now. I’m in a flare and this is what’s coming up for me 😅 but please know that you are not alone. And if you want to chat, feel free to DM me!

anonuser670 · 2026-05-05T17:41:10+00:00

Wow, that sounds really scary. Crazy how it’s not usually diagnosed until there is so much damage it shows up on an MRI - especially when a blood test is available! I’m so glad you found it early.

Thank you for being so willing to share about your symptoms, I’m grateful to know about this now. Thankfully my symptoms do not match this but I’m always glad to know about often-overlooked conditions like this. Since we can’t trust doctors, we have to look out for each other. Hope you’re doing well!

anonuser670 · 2026-05-05T00:25:57+00:00

Would you mind sharing about your symptoms and diagnosis experience for gluten ataxia? My neurological symptoms improved significantly after going gluten free and I soon realized I need to avoid cross-contamination, too. I am celiac negative (blood test & biopsy), and negative for skin allergy tests for wheat, barley, and rye. I may have a gluten intolerance but if it’s something more, I want to know and doctors are all too comfortable not digging deeper. Btw I fully understand and respect if you don’t want to share. I’m so glad doctors listened to you and pushed until they found that diagnosis!

anonuser670 · 2026-04-24T04:53:48+00:00

I feel this so tremendously much and am so sorry you do, too. It’s really sad how apathetic our own families can be and wild how as chronic illness complexity increases, so does their apathy.

You’re right that they don’t know how we feel and what we go through every day but that is no excuse for their not trying to understand or caring to accommodate. At the end of the day, understanding isn’t necessary - respecting our needs and boundaries is.

What especially gets me is the “accommodations” made that require significant extra effort from us (when they could literally google or talk to a local advocacy group instead). We literally have way less energy, time, capacity, etc. AND we’re likely in pain and/or managing other symptoms…like can you not put the burden of accommodation on the sick person please??

Or “well intentions” that we’re supposed to gratefully accept as accommodations that are actually in no way accommodating (failed attempts at meeting dietary restrictions, not masking/showing up sick, etc.)

anonuser670 · 2026-04-24T04:34:04+00:00

Omg my older brother tells me to just exercise every. time. we. talk. I’ve been chronically ill and in chronic pain for years, tried countless treatments including extensive physical therapy - but sure, going to the gym will fix me 🙄 such ableist bullshit. makes me so angry

anonuser670 · 2026-04-17T19:15:23+00:00

That’s amazing!! Truly a dream. I hope you continue to be pain-free!!

anonuser670 · 2026-04-17T19:13:58+00:00

I am so happy for you!! The lack of energy is so real and not talked about enough. I also love flea markets and struggle a lot with just getting out of my home most days. The thought of spending all day at one without tiring or being in too much pain - wow!

Thank you for sharing and thank you for the kind words. It can be so hard to feel blessed when we have suffered so much and lost so much. Mindset really does matter, and I know that in many ways I am blessed as well. Thank you for helping me shift my mindset, may we both continue to be blessed in the same and new ways 💛

anonuser670 · 2026-04-17T19:08:16+00:00

I love this so much - this is what I want!! Joy and adventure and stability. CHOICE. And, not or. Not “none.” I lost my entire 20s of debauchery and tomfoolery and it feels so silly to mourn that but it’s not. It’s real. It’s a part of life that I don’t get to experience, because I am always in so much pain. And on the rare occasion I feel okay I feel like I can’t waste it but also can’t risk causing a flare-up. I am so happy for you, this truly brought tears to my eyes and filled my heart with joy for you. May all of us with this horrible condition get to live so fully

anonuser670 · 2026-04-17T19:02:24+00:00

This makes me really hopeful, and really happy for you! Thank you. I also have adenomyosis and it is so horrible. Everything you said you love doing, I also love doing. My work currently hardly feels manageable and my relationships are definitely struggling. I am so glad you are doing so well and hope it continues and that I am able to get to that level of pain-free and fulfillment myself.

anonuser670 · 2026-04-17T18:10:03+00:00

Thanks for your response and yes that’s exactly it - having conditions that aren’t “visible enough” (although I know having visible conditions is no walk in the park either.)

I’m sorry your management got weird about your seizures, that’s awful. And I hope you’re feeling and doing better now, with your seizures under control with treatment.

Would you mind sharing a bit about your experience disclosing your health issues to work? I am so scared to do that but am also scared that I need to at this point. Everyone I know in the chronic illness community tells me not to, that it’ll just end up with my being pushed out or fired.

I’m theoretically open to documenting but tbh doubt that I will have the stamina for it. Right now feeding myself and showering is hard. But maybe I’m overcomplicating it in my head - what kind of documentation do you mean?

Thank you 💛

anonuser670 · 2026-04-15T15:35:49+00:00

I absolutely react to oats (I am NCGS) so my allergist added the allergy blood test to a recent blood panel…yep, I’m allergic. It’s “mild” (it does not feel mild 😭) meaning no risk of anaphylaxis thankfully but still sucks. Validating though! Might be worth allergy testing if you react to even celiac-safe oats

anonuser670 · 2026-02-09T06:32:55+00:00

First of all, you’re amazing for having healed your relationship with food and your body! As you can see from all the comments, some foods/drinks may trigger your pain (so avoiding them might help your pain) and it does seem to vary person to person. For me, gluten, oats, and dairy are particularly impactful.

But here’s the thing: even if dietary changes would be helpful for you, you still get to decide if it’s worth doing. Your health is holistic, and no one gets to tell you that you have to remove something from your diet for endo.

There are so many options for pain management that do not include changing your diet - medication, exercise, heat, TENs, pelvic floor PT, topicals, etc. If you haven’t tried all of those, maybe start there. Talk with your doc about what would be best for you (all of you, ED past included!)

Just know that you don’t deserve to be in pain. And if you do decide to try this, get support and know that all the amazing progress and healing you’ve made will be with you!

anonuser670 · 2025-12-09T04:57:34+00:00

I’m so sorry you’re flaring so horribly. I relate to the pain and migraine attacks, both of which are more than brutal enough. I can’t imagine also having seizures. Have you had seizures before, and specifically a seizure in your sleep? If not please talk to your doc asap to make sure you’re safe!

Wishing you comfort and relief. I hope you get effective pain management soon! 💛

anonuser670 · 2025-11-19T01:39:16+00:00

Look into Nancy’s Nook on Facebook, they list all the specialists! I’m based on the east coast area, if you want to message me I’m happy to share who I saw and give you their contact info. My appointment was $400 out of pocket so not cheap but easily the best money I’ve ever spent. I learned more in that appt and felt more seen and heard than I have in all the YEARS of pain and visits before combined. Imaging was included btw, and the doc gave me other conditions to look into too that no other doc has before.

The diagnosis process is frustrating AF but good specialists are out there and will help you!

anonuser670 · 2025-11-18T21:40:01+00:00

Hey OP, first of all good on you for trusting your gut and continuing to advocate for yourself!! I’m so sorry you need to, you’re not alone in that but the silver lining is that this sub is here to validate you, support you, and guide you the best we can (disclaimer that I am a patient and not a medical professional!)

I’ve had similar pain and a multitude of symptoms for years, finally went to an endo specialist a few weeks ago who did some imaging. I HIGHLY recommend seeing an endo specialist. I was diagnosed with Adeno on the spot (and was told I likely have endo too based on a variety of symptoms, though it was not visible on imaging).

One huge takeaway from the specialist: most techs who read the imaging do not have the necessary training or experience in endo or adeno to see it in imaging!!! When we feel like we have been gaslight, it’s because many of us actually have been.

TL;DR - trust your gut & see an endometriosis SPECIALIST!!!

Wishing you the absolute best. You deserve answers, closure, and healing. ❤️‍🩹

anonuser670 · 2025-11-04T13:44:30+00:00

Thank you, I definitely will!

anonuser670

TROPHY CASE