u/havhoblight

Hello all, I could use some help in trying to understand symptoms. I’ve been dealing with issues for 6 years but there was a shift in how the symptoms manifest in the past two years.

In 2024, I got my first flare of something I’ve never experienced and we still don’t know what it is. Before I had typical muscular pain, fatigue etc, which started while living in severe black mold and a gluten sensitivity (though negative for celiac).

It’s a pain that starts in upper right quadrant of my abdomen right below my rib cage in one spot and eventually spreads like a fire burning sensation like a belt around my abdomen to my back. The burning will spread throughout my back, to my arms and hands, and it just feels like the tissues between my skin and organs and muscles are on fire. It doesn’t feel like organ pain or muscular. It feels like my nervous system. I just worry because the origin is the abdomen but then it spreads everywhere.

All of my blood work is perfectly normal. No markers of inflammation. No lupus. No RA. I’m Mediterranean/Middle Eastern so was also tested for Familial Mediterranean Fever.

I’m 5’5 and weigh 132 lbs/59 kg. Am fit. I exercise. I eat super whole and well; mostly plant-based with good protein and fiber. No processed foods. My MRI and ultrasounds were normal. Perfect kidney function. No liver or gallbladder issues. I don’t drink alcohol. No Crohn’s or Ulcerative Colitis. No digestion issues either (no nausea nor constipation or diarrhea).

Could fibromyalgia present this way? It feels like a horrible phantom pain that escalates to 8/10 or 9/10 in intensity and then gets calmer. Then goes up again.

Very much in despair about this. I will get it for ~8-12 days and then it can go away for a few weeks or months before coming back.

Hello Warriors, my dad is 68M (diagnosed for 11 years). He’s got a bad case of nighttime urination (nocturia). Sometimes he can urinate, sometimes he can’t. It’s the opposite of incontinence. It’s like his muscles are hyper-clenched and can’t release urine. He gets up every 2-3 hours. It’s affecting his sleep. And now, he’s having trouble getting up so he calls my mom (72F). She can’t lift him. Even when we get nighttime help, they likely won’t be able to lift him.

He can’t take another dose of C/L before bed because the dyskinesia is terrible. His DBS is at the highest level.

I think trying an external catheter would be a good idea. Any experiences with one? And any other suggestions? Thank you in advance!

I posted this on the Parkinson’s subreddit but it was removed (likely because it’s a difficult topic, though I’ve seen posts similar before). So the language is more geared toward there but it’s okay:

Hello all, I’ve been on this sub for eleven years since my father was diagnosed at 57. He’s now 68. I admire each of you for your proactiveness because I don’t think most people aim to learn about their diagnosis and their personal journey in the way most people here do.

Over the years, I’ve stuck to mostly practical questions. However, there’s a recurrent big one that’s always present for me, and I’d like to address as soon as possible.

My parents have not have any end of life and trajectory decision-making conversations. My mother is my father’s sole caregiver (she’s 72 and very healthy). They live in a different state than my sister and I and are fortunately moving here to be closer to us in the next 1-1.5 years. They moved from our childhood home to a condo last year so this will be another big move, which is tough. But with grandchildren on the way, we hope it brings more light into their lives. We will be able to see each other multiple times per week, and we can be more active in his care.

I’ve tried to raise this topic many times. We are all close and a very emotionally open family, so it’s not a vulnerability issue. It may be generational. But every time I raise it, it gets very tense (a mix of irritation, avoidance, this isn’t the right time, let’s wait, etc), and it doesn’t go anywhere.

I’m very concerned now because my father’s state is gradually declining (and I’m so sorry I’m naming this in this sub; mindful for each of you, but I also value your take). He had ADHD, depression, and has some childhood trauma before PD, which has strongly affected him; he’s also a big pessimist and was a huge workaholic. Before PD, work worries (mostly money) were his identity. Now, Parkinson’s is his whole identity. He goes to Rock Steady Boxing, but beyond that as immigrants, they didn’t invest in community and friendships (though many of my immigrant friends’ parents did). Anyway, we suspect the DBS is affecting his cognitive abilities. He struggles to maintain a train of thought, switches between languages, forgets a lot, messes up medications. And now, he’s needing help to get dressed in the evenings, shower, sometimes in the bathroom.

Aside from hiring home care (which there has also been resistance to to save money) soon, do any of you have unique suggestions on how to have this conversation about the future trajectory and making some of those decisions now so that there’s clarity later? I want to ensure we do this while he’s still lucid.

My parents are both big believers in living and prolonging life as much as possible, including with interventions. My sister and I are more in the gray zone (ie different take on feeding tubes). We will do whatever they want to do of course. But it’s important to talk about it ALL: the logistics, what it will look and feel like , and yes, the financial considerations. We are in the US.

I often think about how hard they worked to have a financially secure retirement. From my understanding, if my father were to live another 10 years, it could cost $40k per year the first couple and then upward $150k per year as time passes.

I often wonder— where are the boundaries and what are the thresholds? I feel that quality of life as time passes is as important in the conversation as the logistics and just doing, doing, doing.

I know this is an extremely sensitive topic with multiple takes. I know that the ethics is complicated.

Thank you for reading and being receptive.

I aim to thrift most of my clothes, but more intimate items I prefer new. Any brand or company recommendations for house robes that are light (for spring and summer), land nicely on the body (not stiff like most cotton), and are--dare I say-- sexy? I'm basically looking for something similar to the mainstream that we see and know aren't ethically produced nor sustainably sourced. Thank you in advance.

EDIT: RESOLVED. So we spent about ~5 hours calling the IRS. Dropped twice. Last one held. Took 1 hour and 53 min. They were able to transfer the payment from my account to his. We learned a lesson and paid with our time. However, we are also lucky and privileged. We could spend time judging folks for not knowing things like this. We could also be more open and understanding about how it works more efficiently, smooth, and harmoniously elsewhere and there's no reason why such a system isn't possible in the U.S. without preserving concerns about privacy, security, and uncertainty. There are people who can't even access disability, Medicaid, and other financial assistance because of issues like this. Thank you to all who provided insights on how to resolve the matter.

My husband and I filed jointly. Our H&R Block person put in the wrong routing number and the IRS couldn't withdraw from our bank account so they sent a notice. I paid the taxes using my IRS account. However, looks like my husband was the primary on the return. The IRS successfully withdrew the money, but they haven't assimilated that it's for our joint filing. Now we keep getting letters with penalties.

Aside from the silliness that only the first person listed can pay the taxes despite BOTH social security numbers being on there and it being a joint filing-- how do we remedy this?

We've been on hold for hours and hours. Happy to do snail mail at this point. Should we simply write a letter with proof of withdrawal from IRS from our bank account and proof from my IRS account that it shows paid? Any else to add? Can this be a plain and signed letter?

This is so backward.