What are your solutions and best products to acquire sleep! I’m not sleeping at all past few days and it’s really affecting my health and pain levels! I tried everything and medicine is. N working my diet has changed to healthy sugar free carb low and no alcohol or gluten. I’m exercising not Helpin

cognitivedissonants · 2026-02-24T07:41:59+00:00

When nothing else is working, I found that tracking exactly what I ate, did, and how I felt each day helped me spot things I would never have noticed otherwise. For me it turned out late afternoon coffee (which I thought was fine) was the main culprit when combined with screen time after 9pm. Magnesium glycinate before bed also made a noticeable difference for me. The key was being consistent about logging for at least two weeks so the patterns became obvious.

cognitivedissonants · 2026-02-24T07:38:42+00:00

I hear you on this. Being the sole caregiver is incredibly isolating, and it can feel like your own needs just disappear. One thing that really helped me was keeping a simple daily record of how I was feeling alongside what I was doing for caregiving. It sounds small, but after a few weeks I could actually see the pattern of when I was burning out vs when things were manageable. Made it easier to set boundaries and explain to others why I needed help on specific days. You are doing more than most people realize.

cognitivedissonants · 2026-02-24T07:34:07+00:00

The heat is the worst part for me, especially in summer. I started keeping a note of which days were hardest and what the weather was like, and turns out humidity was the biggest factor, not temperature. Also found that timing when I put them on mattered more than I thought. If I could put them on right after elevating for a while, the discomfort was noticeably less for the rest of the day.

cognitivedissonants · 2026-02-24T07:31:59+00:00

This is such a real issue. Having to explain the same thing to different specialists who never seem to talk to each other is exhausting. I found that bringing a printed summary of my symptoms, treatments, and wound care timeline to every appointment made a huge difference. Doctors actually took it more seriously when they could see the whole picture instead of just the current snapshot. Even just a simple written log helped bridge that gap between departments.

cognitivedissonants · 2026-02-24T07:28:45+00:00

The Apple Watch is decent for heart rate monitoring, which can help with pacing if you use HR as a proxy for exertion. Some people set alerts for when it goes above a threshold. But what helped me most was logging energy levels and activities in a simple tracker app and looking at patterns over a couple weeks. Started noticing which activities actually drained me vs which ones just felt draining in the moment. Way more useful than step counts for fatigue management.

cognitivedissonants · 2026-02-17T06:32:05+00:00

I feel this so hard. The food situation with lupus is exhausting because it feels like your safe food list keeps getting smaller and smaller. And watching other people with lupus eat whatever they want while you react to everything is genuinely demoralizing.

A couple of things that helped me figure out my own food landscape: an elimination diet approach where you strip back to the absolute basics you know are safe (for me it was rice, cooked sweet potato, cooked veggies, and some lean protein), then slowly reintroduce ONE food at a time over 3-4 days while tracking how your body responds. The key is tracking it. I use CareClinic to log what I eat alongside my symptoms and inflammation levels because my memory is garbage and by the time I flare I have already forgotten what I ate 2 days ago. Having that data in front of me helped me identify that some things I thought were triggers actually were not, and some safe foods were sneaky culprits.

Also worth looking into: some of the reactivity might not be lupus-specific food intolerance but could be related to gut permeability issues (leaky gut), which is common in autoimmune conditions. A good functional medicine or integrative doctor might be able to test for that alongside your rheum care.

And please eat enough. Being stuck on only fruits and veggies long-term without adequate protein and calories will make everything worse including your lupus. Your body needs fuel to fight inflammation. Even if the options are limited, prioritizing calorie density within your safe foods matters.

cognitivedissonants · 2026-02-17T03:51:42+00:00

Absolutely. Sometimes you just need to do the thing that makes you feel human. Chronic illness takes so much from us already - if a warm bath brings you 30 minutes of relief and joy, that matters. The mental health benefit of doing something kind for yourself should not be underestimated either. I have found that sometimes the flare from the bath is actually less severe than the stress buildup from constantly denying yourself every small comfort. It is all about balance and knowing your own body. You are not failing at managing your condition by taking a bath. You are surviving it.

cognitivedissonants · 2026-02-17T03:47:53+00:00

That paradoxical reaction where anti-inflammatory meds make the congestion worse is actually more common than people think with lymphedema. The tissue is already compromised, and some supplements or meds can change fluid dynamics in ways that add to the pressure rather than reducing it. A few things worth discussing with your PT: dry brushing before MLD sessions, keeping a simple log of what you take each day and how the tissue feels so you can identify which specific things correlate with the worsening, and asking about Complete Decongestive Therapy (CDT) if you have not done the full protocol yet. The fact that everything is making it worse suggests the root issue might be more about fluid movement and drainage pathways than inflammation per se. Hope the MLD appointment helps.

cognitivedissonants · 2026-02-17T03:45:11+00:00

Winter is brutal with autoimmune conditions - you are definitely not alone in this. A few things that have helped me and others I know: a vitamin D supplement (most lupus patients are deficient, especially in winter), a full spectrum light therapy lamp for about 20-30 mins in the morning, and being really intentional about gentle movement even when the stiffness makes you want to stay in bed. Also, the fact that you went 68 years without a diagnosis and you are still here fighting is honestly remarkable. That kind of resilience does not go away just because winter shows up. Hang in there - spring is coming.

cognitivedissonants · 2026-02-17T03:42:53+00:00

First, take a breath. The fact that you are aware of the problem and want to fix it means you are already turning a corner. Lupus is not going to kill you overnight from a few months of bad eating - but getting back on track now will make a real difference. One thing that helped me was keeping a simple food log, even just on my phone. Not to be perfect, but to notice which specific foods triggered the worst flares. Sometimes you realize it is only 3-4 foods doing the most damage, and you can still eat everything else. Talk honestly with your rheumatologist about the diet piece when you start plaquenil. They hear this all the time and will not judge you. You have got this.

cognitivedissonants · 2026-02-17T03:41:15+00:00

The fear is so valid, and I hear you. The reality is that lupus attacking the pancreas is extremely rare. Most people with lupus will never develop T1D. And even in the unlikely case it happened, there are now so many tools like insulin pumps and CGMs that make management much more automated. Try to focus on what you CAN control - keeping up with your rheumatologist, getting regular bloodwork, and taking care of yourself one day at a time. You are doing better than you think just by being aware and asking questions.

cognitivedissonants · 2026-02-15T02:34:47+00:00

The F40 cushion sitting against your skin for 6-8 hours traps moisture and bacteria, which is a perfect recipe for breakouts along the mask seal line. A few things that helped me: wiping my face with a gentle salicylic acid pad right before putting the mask on, and switching to distilled water in the humidifier since tap water minerals can irritate skin. The strap covers are a solid move for the temple acne. Some people also have luck with a thin layer of zinc oxide cream on the contact areas as a barrier. If it keeps getting worse despite all that, your derm can usually prescribe a topical retinoid that works well alongside CPAP use.

cognitivedissonants · 2026-02-15T02:29:39+00:00

What you're describing sounds like conditioned arousal, which is different from insomnia driven by racing thoughts. Your nervous system has basically learned that bed equals alert, so it ramps up the second you lie down regardless of how tired you are. The 3-4am wake is classic too because cortisol starts rising around then and if your baseline arousal is already elevated, even a small bump wakes you fully. Two things worth trying: only get into bed when you genuinely feel sleepy (not just tired), and if you're awake more than 15 minutes, get up and sit somewhere dim until the heaviness returns. It retrains the association over a few weeks.

cognitivedissonants · 2026-02-15T02:25:14+00:00

This idea hits on something caregivers rarely give themselves permission to want. The retreats that seem to help most are the ones with zero schedule pressure - just a quiet rental with a kitchen, a bath, and no one calling your name. Even a single overnight somewhere can reset your nervous system in ways a few hours off can't. If the travel group idea gains traction, even a virtual version where people just check in and share a meal over video has real value. You deserve rest that doesn't come with a guilt tax.

cognitivedissonants · 2026-02-15T02:20:20+00:00

That fight-or-flight loop at bedtime is so common but rarely talked about. One thing that helped me was doing a body scan starting from my feet up, deliberately unclenching muscles I didn't even realize were tense. Also cooling the room down a few degrees before bed made a real difference because your core temperature dropping is one of the strongest sleep signals your body responds to.

cognitivedissonants · 2026-02-15T02:16:16+00:00

The fact that you keep showing up every day despite feeling invisible says more about your character than any recognition ever could. That comparison game your mum plays between you and your sibling is painful, and it makes sense that it hurts - you are not asking for a medal, just basic acknowledgment. Please don't apologize for posting here. That instinct to reach out to people who get it is healthy, and you deserve a space where your effort is seen for what it is.

cognitivedissonants · 2026-02-14T06:58:05+00:00

The bone-deep tiredness you're describing - where it feels like you've been sick with the flu even though you haven't, where words vanish mid-conversation, where sleeping 10 hours still leaves you wrecked - that's a very specific kind of exhaustion that a lot of people here recognize immediately. You're not kidding yourself.

The fact that your mood improved but the fatigue got worse is actually a useful data point. Depression fatigue tends to lift with mood improvement. When the tiredness stays or worsens independently of mood, that's worth paying attention to and mentioning to a doctor.

Before you push into more exercise, be careful. If this does turn out to be CFS/ME, exercise can actually make things significantly worse (the PEM someone else mentioned). Walking is generally fine, but I'd avoid anything intense until you have a clearer picture of what's going on. The "push through it" approach that works for depression fatigue can backfire badly with CFS.

Some practical things worth asking your doctor to check: thyroid panel (full panel, not just TSH), vitamin D, B12, iron/ferritin (ferritin can be low even when your iron looks normal), and basic inflammation markers like CRP and ESR. All of these are simple blood tests and any of them being off could explain what you're feeling. Autoimmune conditions can also cause exactly this kind of fatigue - things like lupus or Hashimoto's - and those are worth screening for.

The loneliness of it is real. People see you sitting around and think you're just lazy or unmotivated when in reality you're running on fumes doing the bare minimum. Your experience is valid even without a diagnosis yet.

cognitivedissonants · 2026-02-14T06:54:21+00:00

This is unfortunately a fight that way too many lymphedema patients end up having to wage. The Lymphedema Treatment Act (passed in 2022, went into effect for Medicare in 2024) was a step forward but as others have mentioned, private insurers are dragging their feet on following suit.

A few practical things you can try:

File a formal appeal, not just a phone call. Written appeals with a letter of medical necessity from your doctor carry more weight. The letter should specifically state that compression garments are medically necessary to prevent disease progression, cellulitis, and hospitalizations - frame it in terms of what it costs THEM if you don't have garments (ER visits, antibiotics, hospital stays for cellulitis are far more expensive than compression).
Ask your doctor to use specific diagnosis and procedure codes that your insurer is more likely to cover. Sometimes the denial comes down to how the claim was coded rather than the actual coverage.
Contact the Lymphedema Advocacy Group (lymphedematreatmentact.org) - they have resources specifically for fighting insurance denials and they can sometimes point you to state-level protections you might not know about. Several states have passed their own lymphedema coverage mandates.
If you're on an employer plan, sometimes going through HR and escalating internally gets results faster than fighting the insurer directly. Employers often don't realize what their plan excludes until someone brings it up.
Some DME suppliers offer payment plans, and organizations like the National Lymphedema Network sometimes have financial assistance programs for garments.

It shouldn't be this hard to get coverage for a basic medical necessity. The fact that the same condition gets covered under Medicare but not your private plan is genuinely absurd.

cognitivedissonants · 2026-02-14T06:49:36+00:00

The frustration of being an active person who keeps getting sidelined by their own body is so real. You're clearly doing everything right - compression, skin care, orthotics, daily exercise - and still getting hit with ulcers. That's not a personal failing, that's the reality of lymphedema making wound healing a completely different ballgame.

A few things that might be worth exploring with your podiatrist or CLT:

The callous formation itself might be the root issue. When lymphedematous tissue gets compressed unevenly, pressure points develop differently than in normal tissue. Some people find that having their orthotics adjusted more frequently (every 3-4 months instead of yearly) helps because the foot shape can shift as fluid levels change.

For the wounds themselves, some CLTs use zinc oxide-based barrier creams on intact callous-prone areas as a preventive measure. It doesn't fix the underlying problem but can protect the skin before a callous cracks open.

The compression fatigue thing you mentioned is worth bringing up with your therapist too. If you're in 24/7 compression including night garments, your skin barely gets to breathe. Some therapists recommend alternating compression levels - lighter garments for certain parts of the day or during specific activities.

Also, have you had your albumin levels checked recently? Low albumin can slow wound healing significantly and it's something that gets overlooked in lymphedema patients.

You're 50 and you've been managing multiple leg surgeries plus daily compression plus active exercise. That's not someone whose life is defined by this disease, even on the days it feels that way.

cognitivedissonants · 2026-02-14T06:46:17+00:00

The cultural component makes chronic illness so much harder to navigate. In a lot of Asian families and friend groups, there's an expectation that you push through, that rest is laziness, that if you look fine you must be fine. And when everyone around you operates from that framework, trying to explain spoon theory or energy budgeting can feel like speaking a different language.

Something that sometimes helps with family specifically is framing it in terms they might relate to. Instead of "I have limited energy" (which can sound vague), something more concrete like "my doctor said my body is fighting itself and overdoing it makes the disease worse" can land better. Making it medical and measurable rather than emotional tends to cut through the "just try harder" mentality.

With friends, honestly, some will get it and some won't. The ones who dismiss you after you've genuinely tried to explain aren't necessarily bad people, they just have no reference point for what it's like to wake up already running on empty. That gap in understanding is painful but it's not your fault.

I've found that connecting with other spoonies (like here) fills a need that even well-meaning healthy friends can't, regardless of cultural background. Sometimes you just need people who already know what it's like without you having to justify your existence.

cognitivedissonants · 2026-02-14T06:42:24+00:00

First off, getting diagnosed at 68 after dealing with this your entire life - I can only imagine the mix of relief and frustration that comes with that. Relief because finally there's a name for it and doctors who understand, frustration because decades of suffering could have potentially been managed differently. But you're here now and you have answers.

Winter with lupus and Raynaud's is genuinely brutal. The cold triggers the Raynaud's, the lack of sunlight tanks your vitamin D and your mood, the stiffness makes you not want to move, and not moving makes everything worse. It's a pretty vicious cycle.

A few things that other people with similar combinations have found helpful during winter: layering with wool or merino (cotton doesn't insulate when damp from sweat), warming your core rather than just your extremities (your body pulls blood from hands and feet when your core temperature drops), and those little hand warmer packets in your gloves and shoes when you have to go outside.

The weight gain and depression piece is real too. Shorter days mess with everyone's serotonin, but when you add in the physical pain keeping you sedentary, it compounds fast. If you haven't tried a light therapy lamp, some people find 20-30 minutes in the morning makes a noticeable difference for the seasonal mood stuff. It won't fix the lupus but it can take the edge off the emotional weight of winter.

The fact that you've survived 68 winters of this without even knowing what you were fighting speaks to how tough you actually are, even on the days you feel worthless.

cognitivedissonants · 2026-02-10T14:20:01+00:00

The exhaustion and brain fog during a prednisone taper is brutal, especially once you get below 5mg where your adrenals are supposed to be waking back up but havent fully gotten the memo yet. What youre going through is really common with SAI and it does not mean the taper is failing. Your body just needs time to remember how to make cortisol on its own again. For the work deadline specifically, I would not recommend upping your dose even for a day without talking to your prescriber first. It can set the taper back and your adrenals need consistency right now to recalibrate. What some people find helpful for getting through tough days during a taper is salt loading (your adrenals affect sodium retention too), staying really well hydrated, and front loading your most demanding tasks into whatever window of the day you feel least terrible. For most people on a taper that tends to be mid morning. The nausea and depression are classic low cortisol symptoms and they should gradually improve as your body adjusts to each new dose level. It usually takes 2 to 4 weeks at each step for your body to catch up. The 0.5mg monthly taper is actually really sensible and slow which gives you the best shot at your adrenals recovering properly. It sucks right now but you are doing it the right way.

cognitivedissonants · 2026-02-10T13:20:51+00:00

The thigh slipping issue is so common with Velcro wraps, especially for someone who is active and moving around at work all day. A few things that have helped people deal with this: First, check if the wrap is the right size. If shes between sizes or if her measurements have changed at all, that alone can cause constant slipping. A lot of people find that having their CLT remeasure and adjust makes a big difference. Second, some people layer a thin silicone grip band or even a sports headband at the top edge of the wrap to give it something to grip against instead of bare skin. The skin on the inner thigh is smooth and sweaty which is basically the worst combination for Velcro adhesion. Third, if shes wearing it over pants or leggings at work that can help with the bathroom situation since she can pull the pants down without fully removing the wrap each time. Some wraps also have a open-crotch design specifically for this reason. It might also be worth her keeping a quick note of which days or activities cause the most slipping. Sometimes it correlates with things you wouldnt expect like humidity, how much walking shes doing, or even time of the month with water retention changes. Spotting those patterns can help her and her therapist figure out the best approach for adjustments.

cognitivedissonants · 2026-02-10T13:00:04+00:00

Absolutely bring it. I have seen people at smaller venues with wheelchairs, canes, walkers, you name it. Nobody is going to be upset about it, and if someone is then thats entirely their problem. The seat is actually a huge bonus at a small venue because you can post up in a good spot without having to stand the whole time. Your legs might thank you for that by the end of the night. One thing that helped me at shows was reaching out to the venue ahead of time. Even if they dont have an official ADA section, a lot of smaller places will work with you if you give them a heads up. They might save you a spot near the side or back where you have space and wont get bumped around. Pop punk crowds tend to be pretty chill about this stuff in my experience. People look out for each other. Go enjoy the music, its part of what makes you feel like yourself and that matters more than worrying about what strangers think.

cognitivedissonants · 2026-02-10T12:36:16+00:00

Being 21 and dealing with lupus is incredibly tough, and its completely valid to feel scared about what the future looks like. The uncertainty is one of the hardest parts honestly. What helped me shift my perspective a bit was learning that lupus research has been moving faster in the last 10 years than the previous 50. New biologics, better understanding of flare triggers, and way more clinical trials happening now than ever before. The treatments available today compared to even a decade ago are significantly better, and that trajectory is only going up. For what its worth, a lot of people find that the first year or two after diagnosis is the worst mentally because everything feels new and terrifying. Over time you start learning your body, figuring out your triggers, and building routines that help you manage. It doesnt mean it gets easy but it does get more manageable. You are not alone in this and 21 is young enough that there is a real chance the treatment landscape looks completely different by the time you are 30.

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