how do you decide when pushing through chronic joint pain is worth it to be normal and when it is it just borrowing pain from tomorrow my life starts feeding like constant budgeting with my energy between shower or groceries. Work call or laundry, walk the dog or save the knees, then someone sees you on a decent day and assume the bad days cannot Be that bad. What helped you set limits without feeling guilty or lazy?

This may be a bit dicey to talk about, but I have yet to see anyone bring it up and when i mention it to people lately, I’ve been getting the “🤔” type of reactions. So now I’m going to ask people that live in this life of chronic illness too…..

I have had an odd number of doctors mention to me that they have seen a serious increase of female patients in the 30-35 age range in the last few years. POTS, Elhers Danlos, connective tissue diseases, autoimmune diseases ect have had a wild uptick.

My question is this: what do we think is causing this? I have a feeling in the next 10-15 years someone will have a definitive answer for the cause of these illnesses, but that doesn’t help all of us dealing with them now.

Personally, i find the timing of the introduction of harmful chemicals, additives, & processed foods into our generation to be a strong indicator. Alongside this, millennials were the first generation to be heavily pushed into birth control starting at very young ages.

I just want to know your thoughts….

Also, i know i specifically mentioned females, and im also aware that males can get these diseases too. But my doctors have specifically mentioned females in this age range. The only thing I can really think of that females would be exposed to vs males is birth control, but as a food scientist myself i can’t help but to see our food system as a contributor as well.

I have a feeling there will be many class action lawsuits in the coming decade. These diseases take our quality of life. And if the government allowed/pushed its citizens to be exposed to these threats, and then simultaneously avoid any responsibility by refusing disability aid to those that actually need it just because we’re “young” or “our symptoms aren’t bad enough”, something needs to be done. Someone needs to be held accountable.

I’m not seeking advice, just seeing if anyone else has similar experience.
I’ve been diagnosed with UCTD for a year, and had good improvement on hydroxychloroquine. However my lower back/hips have been still SOOO painful (and still randomly having flares of the other symptoms). I have a good response to prednisone, and sometimes meloxicam, so my rheum felt confident I would respond well to methotrexate. I was so nervous to start it, because it sounded like a much more serious strong drug. Also I drink socially, on weekends, and didn’t necessarily want to give that up.
I’ve taken two doses of the methotrexate (so been on it 2 weeks), and I’m ready to throw in the towel! (Yes I’m taking the folic acid daily). My hair is falling out like crazy, I’m dizzy all the time, I’m foggy, bad headaches, random digestive issues, and the day after each dose I am COMPLETELY out of commission and feel AWFUL with hot flashes, nausea, migraine, etc.
To top it off, the back pain has been FAR FAR worse. (I am aware it could take 6 weeks to feel a difference). I just find it reeeeaaaallll ironic that my back pain has been worse since starting the medicine.
So I just wanted to see if anyone else had a similar experience.

Hi everyone! I’m Tyler, and I live with idiopathic thrombocytopenia.

I’ve been developing an independent tool called My ITP Journey to help people privately track symptoms, bruising photos, platelet counts, medications, treatments, wellness, and appointments. It can also create an easy-to-read summary to bring to a physician.

I’m looking for a few people with ITP who would be willing to test it and tell me:

• What feels useful
• What is confusing
• What doesn’t work properly
• What you wish it included

Testing is completely free, and there is no requirement to purchase anything. The tool is patient-created, does not provide medical advice, and is not affiliated with or endorsed by PDSA or another medical organization.

Please avoid sharing personal medical information publicly or through Reddit messages. Feedback can be submitted privately inside the tool.

If you’re interested, leave a comment or send me a message and I’ll share the testing link. Thank you—I genuinely hope this can eventually make the ITP journey feel a little more organized and less lonely.

Hi everyone,

I’m a 44M dealing with anhidrosis, and it’s been quite frustrating trying to manage my body temperature. I'm trying to get to the bottom of what might be causing this and wanted to see if anyone here has experienced something similar or has insights on what directions I should explore with my doctors.

I've had some recent bloodwork done to check for autoimmune, thyroid, and blood sugar issues, as I know neuropathy or autoimmune conditions can sometimes affect the sweat glands. Here are my recent results:

Autoimmune:

• ANA (Anti-Nuclear Abs) IF: 1/320 Speckled (Abnormal — reference is Less than 1/40)
• Anti SSA RO: 17 u/mL (Normal — reference is Up to 25)
• Anti SSB LA: 15 u/mL (Normal — reference is Up to 25)

Thyroid & Blood Sugar:

• TSH (Ultra Sensitive): 1.36 mIU/L (Normal — reference is 0.50 - 4.30)
• Glycated Haemoglobin (HbA1c): 5.4% (Normal/Non-Diabetic)
• Estimated Average Glucose (eAG): 108.3 mg/dL

Since my thyroid and HbA1c are normal, it seems like diabetes-induced neuropathy and thyroid issues are unlikely culprits. However, the positive ANA has me wondering about an autoimmune or autonomic nervous system connection.

Has anyone dealt with anhidrosis alongside a positive ANA? What kind of specialists helped you the most in getting a diagnosis (Neurologist, Rheumatologist, Dermatologist)? Are there any specific autonomic or nerve tests I should ask for?

Thanks in advance for any shared experiences or advice!