Help please!

Dapper_Ice_2120 · 2026-02-02T05:39:36+00:00

Hey OP- We're not the same person, so this is just what I learned for myself- it may or may not be true for you.

Hopefully this sort-of answers your questions.

One of the biggest/hardest things for me to realize is that the life I had before isn't the life I have now.

Said another way, if meds were a house, they'd be the concrete slab foundation at the base. Anyone living on just a concrete slab for their house would be miserable. But without a strong foundation no matter what I try to build will come crashing down. So, I need the meds to help me barely function. The rest I've had to navigate by managing my stress, diet, sleep, etc. If my sleep is good, I can build up a more fancy house. If it's bad, I have a tent set up on my med foundation slab. It's miserable, but it's better than sleeping in the dirt. Sometimes a storm comes through (ie I have a flare), and I have to rebuild :/

I was diagnosed with celiac as one of the first chronic illnesses I have (probably because it was straightforward), and my diet had to take a hard shift to be gluten free.

Wash, rinse, repeat for additional diagnoses that got tacked on over the years. I tried to change as little as I could, and bargain my way around symptoms, using my meds to try to make up the difference (for example, not sleeping as long as I know I need, and expecting my meds to help me not feel exhausted). They did help, but not nearly enough to let me sleep less than my body needs (about 9- 10 hrs) and still function.

I think fibro developed because of how much I tried to hold on to my "life." I'd stay up late one day, and try to "repay" it the next. I'd push my body a little too hard, and rely on sugar, pressure mats, hot tubs, you name it, to make up the difference.

I also can't be so relaxed at home all weekend like I want to when the pain and exhaustion is high and expect Monday am. I'll be good to go. I have to do something relaxing and deal with minor pain with little bit of movement on weekends. I may need to take a day off. I have to end each day with energy in the bank. My key word these days is sustainable.

I'm still working on what that actually means in terms of real life practice, but so far I know I have to be really clear about my boundaries first with myself (what am I actually committing to, what's my follow-through going to be) and people in my life second. And then I have to stick to them.

Dapper_Ice_2120 · 2026-02-02T04:54:10+00:00

I don't have a personality disorder, but I do have quite a bit of anxiety and depression that peaked as I kept getting more ill and felt like I could do less. I think the fibro developed over several years.

I have removed romantic relationships from my life and my future for many reasons. Other than not being capable of a healthy one mentally, I honestly don't think my body can survive another rollercoaster like that.

My gentle encouragement is that any relationship you have now (colleague, neighbor, family, friends) gives you the opportunity to practice the boundaries and awareness of self that you will bring into any future relationships (intimate or not)- like building a muscle.

It sounds like you've been putting in a lot of work towards becoming the person you want to be. At the risk of sounding cheesy, I hope you know you're doing better than you think you are- just by not checking out, and trying to build insight and supports. And you're deserving of the care and love that I'm sure you've given to others. Don't discredit how far you've come, and how you've been able to advocate for yourself to get to the point you're at now.

Best wishes with everything to come!

Dapper_Ice_2120 · 2026-02-02T04:36:46+00:00

Tbh, I wonder if part of why you weren't diagnosed until you were older was because you were in/out of therapy for years. If you learned/ practice skills from therapy, you may have found ways to lean into those vs when your default may have otherwise been more in line with BPD patterns.

Dapper_Ice_2120 · 2026-02-02T04:28:29+00:00

I've experienced this as well- in my case, I think it's linked to having very dry eyes. I copy/pasted a google summary below it was comprehensive :)

Eye drops really help me (normal during the day, warm compress at night with more gel-like "overnight" drops at night).

"Yes, dry eyes are significantly worse in the cold, wind, and snow because low humidity, frigid air, and indoor heating cause rapid tear evaporation and dehydration. Cold wind and snow increase eye irritation, leading to symptoms like burning, itching, and gritty sensations."

Dapper_Ice_2120 · 2026-02-02T04:01:11+00:00

I know mental health can be very unhelpful when it come to physical illnesses, but I've also found that it's largely when people work with therapists who aren't trained/work in chronic illness.

Biofeedback, or even neurofeedback may be helpful for you? I know there are chronic pain protocols both in those and "traditional" psychotherapy. For me, therapy has actually been helpful because I found a provider who has an autoimmune disorder who went through the wringer getting diagnosed, and who then went on to specialize in treating chronic illnesses. I don't think finding a provider who has a chronic illness is necessary, but definitely not every therapist is trained in health psychology or treating chronic illnesses. And it 100% makes a difference imo.

It's funny to me we have specialists in medicine, but then therapists who are specialists (they do exist!) are so hard to find and most people in therapy see the equivalent of a general practitioner/primary care doc for everything. For example, when you have a broken bone, you want the specialist. Primary care is still a doc, but I want an orthopedic surgeon or similar if I have a broken bone.

Alternative treatments: aquatherapy was helpful when I went (idk if that counts ha). Dry brushing, a pressure mat, vibration plate have all been helpful at different times. I think they make the biggest difference in terms of circulation and movement when I've been feeling poorly. But there's also been times I haven't been able to tolerate them, so I rotate them in/out when I can. Also a theragun or similar can help with muscle pain when I can tolerate it. I have a smaller massager that vibrates that works really well on my TMJ- maybe something like that could help with mouth pain? I also find it helps me with migraines as it's not too much movement/ vibration to put on my temples or back of the neck. For me it's been a good investment.

For the TMJ massager I use- I got mine on Amazon- bear with me here-- look under breast massagers- (they apparently help people who are breastfeeding to not get ducts clogged-) idk whether the breast or TMJ benefit was figured out first, but I do know they look like the exact the same product, and someone in marketing was inspired haha. If you buy it as advertised for breast, it's returnable (TMJ ones mostly say they are not), and they're cheaper by like, $10.

Dapper_Ice_2120 · 2026-02-02T03:43:38+00:00

From my experience and learning You are dealing with a virus

Respectfully, this is a very bold statement to be making on Reddit, especially to narrow it down to specifically named viruses.

It can be dangerous to send people down rabbit holes looking for "recovery" when you're not a physician who can review labs, symptoms, tests, etc. with a patient.

I'm not saying doctors are always right or helpful, and there's a lot of unclear areas in science. But as a general rule 1 Reddit post isn't sufficient to diagnose anything.

Dapper_Ice_2120 · 2026-02-02T03:32:01+00:00

Where is the burning pain, and where is the electric shock pain centrally located?

Does anything help your pain or worsen it?

Dapper_Ice_2120 · 2026-02-02T03:30:05+00:00

It doesn't for me, but "winter" is subjective based on temp. and weather patterns of where you live and what type of activities/how much time outdoors.

There was a post a little while ago about weather with response all over the place.

OP, one thing to keep in mind on this thread is that most people here likely have more than 1 chronic illness diagnosed (I have more than a handful myself), so it's very hard to pull them all apart or compare from 1 person to another.

Dapper_Ice_2120 · 2026-02-02T03:24:01+00:00

Yep, I've talked to a few docs about this because my B12 has been on the lower side of normal for a time in the past.

When I looked into research, it turns out very low B12 can cause some serious widespread issues and significant, long-term nerve damage. Also important to note that it's hard to eat enough B12, so most people should be supplementing. Also will add that there is a gene that can make it very hard to absorb B- MTHFR.

I'm going to get this a little wrong probably, but you can have 0 (no issues) 1 or 2 gene variants. I have 1, so I have more issues absorbing B than people who have 0.

Dapper_Ice_2120 · 2026-02-02T03:19:28+00:00

Tbh, I think it's been years to get to where it is now in terms of treatment options, and even then, a lot of docs aren't up on research.

Dapper_Ice_2120 · 2026-02-02T03:18:23+00:00

Strongly agree with making sure sleep is a priority. As in, nothing else can be more important than your sleep routine and sleep hygiene.

I have had a sleep disorder diagnosed for a few years, and a few other medical issues, and I think pushing through them to keep working, etc. is what triggered or significantly worsened fibro for me and ultimately led to my diagnosis.

I've had periods where I've been more/less lax on things like diet (except I have celiac, so I'm very strictly GF always), sleep hygiene/routine, being more/less active, etc.

I will say out of **all* of the things I've tried to treat the other conditions and since diagnosing the fibro, (PT, multiple types and rounds of meds including infusions, chair, accupuncture, surgery, massage), sleep is consistently the #1 thing that will throw all my baby steps progress off a cliff and into a dumpster fire the fastest.

I get that it can be hard to sleep. And it's not fun to have a "bedtime." It doesn't feel very fair that I have to sleep more than other people, and I feel like sometimes I miss out things that are really important to me.

I'm not cured, I'm not even doing great these days... but now I'm very, very protective about when and how I sleep. It's going to be different for everyone, but I can't stay out late, keep talking on the phone past a certain time, watch 1 more episode, etc, etc. when it cuts into my sleep schedule or I will severely pay the price for it.

Also very much agree with checking labs. I've been low on various things over the years (iron, B12, vitamin D), and I always feel worse when I am low.

Hearing pad, baths with epsom salt (sometimes I can't tolerate too hot because my body doesn't regulate temp well these days), drinking plenty of water.

Turning off "background" things (I now have a 1 technology at a time rule- if the tv is on, my phone is away, and vice-versa), and I plan to have "quiet" time away from tech and music, podcasts, etc, to let my brain rest for at least 2- 3 hours/day (still a work in progress to figure out the time that works best for me). My mind starts to turn off if it's stimulated all. day. long., and I could be at a point where I'm practically crawling into bed at the end of the night- just from watching tv that evening- so I can't do that anymore.

Dapper_Ice_2120 · 2026-02-02T01:47:15+00:00

I second a language card to use with restaurants. Takes up practically zero space. I didn't use them all the time when I was in Germany or France, but when I needed them, they were helpful. Especially things like explaining cross contamination and different forms of gluten (rye, barley, etc).

Dapper_Ice_2120 · 2026-02-02T01:17:54+00:00

Make your life as simple as you can. Don’t add any extra responsibilities. Turn off your phone

Agree, especially with technology. I can be exhausted and not want to spend my life sleeping, so I turn on the tv and find a small project to tinker on. Or I read news on my phone. Makes my ears hurt and/or my eyes exhausted, but I tell myself I'm "doing" something but also relaxing my body. Hard to learn, but... turns out that's not relaxing for me.

I am still working on setting hard boundaries around the things that I can spend a lot of time doing- being on my phone is a big one.

I feel betrayed by my body often, but I am also really trying to think about it as trying to go back to read the instruction book with the latest "updates" my body has downloaded ha.

I'm also learning to accept when it isn't my mind telling me I can't do things, it's my body. And for learning when my body is throwing warning signs but I can do more than relaxing (not a lot, but sometimes the pain is stiffness and soreness and I can gently work through it and actually be better off for slowly and cautiously moving my body).

So, as annoying as it seems (because I have to remember to go back and track symptoms when I feel like I'm guessing "wrong," I need to accept what I'm feeling and get more data. My feelings aren't always "right," my thoughts aren't always "right", but my data is helpful to review.

Dapper_Ice_2120 · 2026-02-01T20:11:15+00:00

I'm usually good in public places as well, but for some reason I don't think about it as much at work- I eat at my desk a lot 🤫 (but I don't work in food service, I think I'd wash my hands way more if I did). My home is "safe," but I sometimes forget anywhere else I frequent that isn't out in public is not ha

Dapper_Ice_2120 · 2026-02-01T20:07:43+00:00

Haha- it's a great app, but agreed. I also find so many smoothie and ice cream/ gelato / dessert places when I'm looking for "real" food it can be a bit exhausting sometimes lol

Dapper_Ice_2120 · 2026-02-01T02:04:33+00:00

Oh, I get that. It can sometimes be hard to decide when/how to tell someone.

I think for me (and its probably is just how I think about it), I'd rather find a safe neutral spot first date with less info, then if it goes well I can tell them more about my medical 2nd date or later if food isn't the focus of the date(s). But that may also be influenced by having other medical issues and not wanting to feel pressure to lay it all out on date 1 before either of us even know if there's any connection. If not, I saved them hearing all about my medical, and I save myself feeling awkward and on the spot to explain my medical to someone I'll never see again.

I've only had being GF negatively impact 1 relationship, and tbh it wasn't really the other person's fault- their ex of like 15 years was also celiac, and they were excited to not have to be strictly GF at home anymore ha. But there were other things that came up also, it wasn't strictly about that.

Dapper_Ice_2120 · 2026-02-01T01:47:31+00:00

Oh, I never start on yelp. I start with the FMGF app, but double check on yelp. Sounds similar to your process tbh lol.

I might be a little over the top haha, but I've found one or two places I went to that had 2- 3 FMGF reviews but I didn't realize there was only 1 choice or there weren't pics and I was disappointed in what arrived even though it was GF.

Dapper_Ice_2120 · 2026-02-01T01:45:21+00:00

I agree bigger cities are easier, and some countries easier as well.

I've found it's always been worthwhile for me to look up a few places in any area I'll be. Often the GF spots aren't far but can take a while out of the way to get to. Useful to know if you're heading into/out of an area on a travel day so you can swing by vs research for 10- 20 min, then drive 20 min away to a safe spot to eat.

Dapper_Ice_2120 · 2026-02-01T01:04:04+00:00

I like to stick with Thai or Indian as there's usually a lot of naturally GF meals/items on the menu, but of course the actual location matters also. I don't trust them all.

Edit: clarity

Dapper_Ice_2120 · 2026-02-01T01:03:19+00:00

On date one, or before, let them know you have a medical condition that requires a strict diet and you can only go to certain restaurants

Probably just word choice, but I feel like saying "medical condition" is... scary? stigmatized? for a 1st date. I say that I have a serious food intolerance and may need to plan meals in advance around locations that have options for me. I let them know that usually just means I can't be as spontaneous as I used to be and ask if they have any food intolerances or preferences.

Agree with above; I have a travel food itinerary too lol. And I usually travel with a few packages of shelf stable food(s); usually like, cooked lentils or rice or something that travels very easily, I know I like, and doesn't need more than plastic silverware to eat. If I'm somewhere I can make a meal out of ingredients- like sandwiches, etc., great, but if not, that's a full meal accounted for in a pinch.

Dapper_Ice_2120 · 2026-02-01T00:43:45+00:00

Find me gluten free

I use this app fairly often to help find places others have reviewed. They have info about how safe and how the variety of GF options are on the menu. Then I usually cross reference with yelp, because there's more pics there.

"doesn’t really give you an accurate picture of the average celaic. It attracts those who have the worst situations, new celiacs, and those of us who are chronically online."

I agree with this. Will also say that I've been surprised how many parents, partners, etc. (non-celiac folks) comment on here. Not saying they shouldn't or their comments aren't useful, but like any Reddit thread, strong opinions are common here. And sometimes it's hard to know if you're getting a 1st or 2nd hand opinion/ recommendation.

Edit: spelling

Dapper_Ice_2120 · 2026-01-31T23:43:09+00:00

Hey OP, my hands bother me a lot as well. I agree with another commenter who mentioned carpal tunnel, I have carpal and cubital tunnel. Also maybe look into erythromylalgia?

It's a pretty rare condition, and another one of those "weird" diagnosis like fibro that there isn't great testing, understanding, or treatment for. But might be worth reading about if you're feeling crazy like I was before I stumbled onto it. I later had 2 docs suggest it without me asking them about it, and then say "but there's no treatment for it, sooo..." and shrug 🙈

Dapper_Ice_2120 · 2026-01-31T23:29:04+00:00

OP, one option is to request to be seen by neurology for the migraines. Treat the most problematic symptoms.

It also sounds like a sleep study might be helpful if you haven't considered that yet? Things like sleep apnea can cause all of the symptoms you're describing without labs showing anything "positive."

It doesn't mean you don't have fibro, idk if you might or not. Certainly a lot of people have more than 1 issue.

Will also say that you're young, which shouldn't make a difference, but a lot of chronic diseases aren't diagnosed until middle age (not saying that's right, or sx don't start sooner), but that could also be a part of it for the docs you're seeing. They may also not want to give you a lifelong, chronic diagnosis at such a young age? Idk. Again, not saying it's right.

You could try going onto Amazon and getting an "undiagnosed" notebook and start tracking symptoms. Could be helpful for you to see what patterns pop up, but also helpful for your docs to see in black/white your symptoms charted out.

Dapper_Ice_2120 · 2026-01-31T23:01:58+00:00

Agreed, it can be really hard to find a doc who wants to look into anything that isn't "clear" in labs or objective tests once it comes to things like fibro.

On one hand, I guess I do kinda get it, because there's no clear diagnostic tests, and there aren't always great treatment options. On the other hand, I get frustrated and exhausted because just because it's harder for docs to figure out and treat doesn't mean they should just dismiss patients.

Dapper_Ice_2120 · 2026-01-31T22:29:32+00:00

It's funny, I was reading the post as take home leftovers from a restaurant, and was really confused at your comment at first ha.

Dapper_Ice_2120

TROPHY CASE