Nothing helps

@leelannee, Praying for you right now. I am so sorry you are battling so much pain. I'm afraid those that abuse pain meds have made it impossible for those who need them.

I cannot take NSAIDS either. I went to a Fibromyalgia/Arthritis/Spine Pain Specialist. He wrote out a compounded pain cream that helps me. NSAIDS are not bothersome to me topically. It has low dose Lidocaine, Diclofenac , Gabapentin & Flexeril in it. It takes the edge off. You can only apply 8 pumps total. Each pump is 1 gram. I am sensitive to about everything and I have had zero side effects to this cream. I cannot take oral Gabapentin.

Do you have a spine/pain clinic in your area? Also, do you see a Neurologist as they can treat pain and prescribe compounded pain cream? It is not cheap....but worth it. It's $80, but, it lasts a while and it's a big pump bottle. These pain creams can be customized just for you.

Please keep me posted. I know you have got to be miserable and I am so sorry. Pain is so wearing and tiring. God Bless You.

@leelannee
You’ve been in pain for 20 years!
May I ask what is causing your pain, and which autoimmune disease you have.
It helps to have your information because you might be able to connect with someone else with a similar situation.

For me I have tremors because of a neurological disorder. My therapist is teaching me how I can distract my brain using various methods like tapping.

I wish you peace.

@covidstinks2023
Thank you for your reply. I will definitely talk to my rheumatologist about the cream. I will be seeing a new pain specialist soon so hopefully they can come up with something that the other doctors have not. I appreciate your support.

@SusanEllen66
Hi, thank you for your reply. I have been having widespread severe joint and musculoskeletal pain since childhood. Doctors diagnosed it initially as juvenile fibromyalgia. It has only gotten worse as the years go by. As for the auto inflammatory condition, I am currently undergoing genetic testing to try to pinpoint which one it is, but doctors are suspecting TRAPS syndrome. I am hopeful that the Kineret will help some of my inflammatory symptoms, but even my rheumatologist said that it most likely will not help the pain much, as it is most likely a separate issue. I appreciate your support and you reaching out.

@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.

So sorry for your severe and chronic pain. I can understand that there are many medications which you cannot take - so please try some diet modification and look for anything that can provide holistic approaches. Stay away from processed meats/cold cuts - which have many fillers which can cause more pain. Watch the purines and seafood which can increase pain. Don't know if you would want to consider acupressure or acupuncture - which may be helpful. Try not to get scammed since many "online" preparations will offer the world and lie in their advertisements to bring people in. Check BBB to see if companies are legit before investing in trying something new. Good luck and feel better.

@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.
⸻
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.
⸻
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.
⸻

So sorry for your pain. I don’t have recommendations but I will pray for you!

Where is the pain located? For 12 years, I lived on opiates as they were the only thing that helped, but I started on them before the opiate crisis, so my PCP was ok prescribing them for me. Pain doctors are more likely to prescribe them if you have not been to one. My pain is in my back, and a couple of years ago, I had a pain pump implanted in my back that has Dilaudid it but I receive less than 1mg/day from its continuous drip. I really helped but not knowing where you pain is, I cant say whether a pump would help you.

As to feeling hopeless, that word scares me for you. I can completely understand the feeling though and am very sorry you are being driven to that. For a period of time, I had 8 level pain daily. How we sense pain level is different for all of us, but for me when I hit 8, it hurts to talk and it hurts to breath deep breaths. If you are thinking of harming yourself, I have been there as well and am happy to have a more private conversation about that if there is a way. I am on the board of a crisis and mental health organization now, the Aspen Hope Center if you want to Google it, and I am not just a board member but also a former patient. Please talk to someone if you are having those thoughts.

@jcoleary you said that you are using opiates, have you tried Buprenorphine, it’s a more safe opioid.