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leelannee avatar

Nothing helps

Chronic Pain | Last Active: Mar 5 6:31pm | Replies (11)

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Profile picture for SusanEllen66 Susan McMichael @SusanEllen66

@leelannee that’s a lot to take.

I also have a “list” of painful maladies. I cannot tolerate the “usual” pain medications so my Rheumatologist has me taking Hydroxychloroquine for osteoarthritis pain.
I had a form of Vasculitis (autoimmune disease) called Cutaneous Polyarteritis Nodosa (CPAN) it’s rare, 3 in a million. Prednisone helped me and now I have recovered.
Fibromyalgia has been with me forever. I can’t remember a time when I didn’t hurt. My mother made fun of me. She said I was delicate, in a sarcastic manner.
I don’t take anything for that either. Tylenol is ok, but it makes me sleepy!

My challenges now are neurological. I have something called functional neurologic disorder FND. My brain and body are not functioning properly with each other. It gives me all kinds of problems.
Then, Mild Cognitive Impairment. That’s the problem I can presently deal with easier than the rest.

Please tell me what TRAPS is. Thanks
Feeling Good is a dream sometimes.

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Replies to "@leelannee that’s a lot to take. I also have a “list” of painful maladies. I cannot..."

@SusanEllen66

TRAPS in medicine stands for Tumor Necrosis Factor Receptor–Associated Periodic Syndrome. It’s a rare inherited autoinflammatory disease that causes recurrent episodes of severe inflammation and pain.

Here’s the simple breakdown.
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What TRAPS Is:
TRAPS is a genetic disorder of the immune system where the body’s inflammatory response turns on when it shouldn’t.

It’s caused by mutations in the TNFRSF1A gene, which affects how the body responds to tumor necrosis factor (TNF)—a major signaling molecule in inflammation.

Because the signal doesn’t shut off properly, the body produces repeated inflammatory attacks.

Typical Symptoms

Episodes can last days to weeks, which is longer than many other periodic fever syndromes.

Common symptoms include:
• High fevers
• Severe muscle pain
• Abdominal pain
• Joint pain
• Chest pain when breathing
• Skin rash
• Eye inflammation (red eyes or swelling around the eyes)
• Extreme fatigue

Some people mainly notice intense muscle pain and deep aching, which is why it sometimes appears in pain-related discussions.
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Pattern of Attack's:
TRAPS attacks:
• occur every few weeks or months
• last 5–21 days
• can be triggered by stress, illness, or sometimes nothing

Between attacks people may feel completely normal.
⸻
Why Doctors Take It Seriously

If untreated for many years, chronic inflammation can lead to amyloidosis, a condition where inflammatory proteins build up in organs (especially the kidneys).

But modern treatments have reduced this risk a lot.
⸻
Treatment

Doctors usually manage TRAPS with medications that block inflammatory signals, such as:
• IL-1 inhibitors (very effective)
• Anakinra
• Canakinumab
• Sometimes TNF inhibitors
• Corticosteroids during attacks
⸻
How Rare It Is

TRAPS is very rare — estimated 1–2 per million people.

Many doctors never encounter a case.
⸻
💡 Important distinction:
TRAPS is not the same as fibromyalgia, autoimmune disease, or typical chronic pain disorders. It is an autoinflammatory genetic condition with clear biochemical markers during attacks.
⸻