Looking for answers for chronic pain

Posted by sophiaj87 @sophiaj87, May 17 12:28pm

My story begins last September. I was a healthy single mom working 10-12 hours a day and highly functioning. My issues started with GI, I had taken Zepbound for 6 weeks and had no side effects until I woke up with abdominal cramping and diarrhea like a stomach bug. 3 days later was the start of chronic constipation with loose stools, hemorrhoids, anal fissures, severe rectal spasms with sharp pain level at a 10 that lasts for at least 5 hours sometimes it’s random like in the night waking me or sometimes after a BM, chronic abdominal pain, fatigue, brain fog, night sweats. I had an X-ray of abdomen, CT of abdomen, flexible sigmoidoscopy, then colonoscopy over the course of 2 months, only diagnosis 2 months in was H.Pylori and I finished the treatment successfully.
I seemed to get slightly better for 2 months then it all came back this March. All the GI and rectal stuff returned, then I started getting severe pain all over my body, jaw pain is extreme to current, GI and rectal has remained through current with extreme flare ups, then 2 weeks ago I was in the ER for Deep Vein Thrombosis and I’m currently on Eliquis, Gabapentin, Tylenol, Clonesapam, and Probiotics. Rarely I start to feel better for maybe a 1/2 day then it’s either my abdomen, my jaw, my neck, my legs, ears, migraines, or any random part of my body that starts with severe pain. Something all at once. This has now been going on for 8 months and has greatly affected my life. My only test that keeps coming back higher and higher is Ferritin with normal Iron. Last week Fertitin was at 379 up from 230 last fall.
My doctor has decided I have chronic pain syndrome but I wonder if there could be more things to investigate. Any advice would be greatly appreciated. I need my life back and my daughter needs her mom back. Thank you!

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crbarefoot | @crbarefoot | May 17 1:39pm

I am so sorry you are going through this. I do not have any advice but hopefully someone in our Mayo group will chime in. Best to you!

meg17 | @meg17 | May 17 2:29pm

I have a long list of chronic pain..my best solution so far for bursitis and tendonitis has been cold packs..

sophiaj87 | @sophiaj87 | May 18 6:58am

I’m specifically wondering about what the high ferritin could mean. Like I said it’s been getting higher than normal since last October. I’ve had two doctors opinions. One was concerned and one was not. Thanks

bswpb | @bswpb | May 18 8:06am

Do you have a rheumatologist? If not, maybe find one.

mackvogt13 | @mackvogt13 | May 18 11:08pm

hello, i am also going through something kinda similar. for the last decade i have had severe GI issues and gynecological issues where i can’t work or go to school. they have stopped doing tests and said i have chronic pain syndrome and want to send me to a three week pain program but i think it will make me worse. keep fighting for answer. the CPP diagnosis is when they don’t know what to do. u r only 8 months in to ur journey do not give up yet ther could totally be more wrong. chronic pain syndrome does take six month at least of ongoing pain with no cause but like there could be soo many reasons for things that they aren’t possibly thinking of that i have had to think of for my own self. like look into genetic testing i think is a very big first step

sophiaj87 | @sophiaj87 | May 19 8:11am

In reply to @mackvogt13 "hello, i am also going through something kinda similar. for the last decade i have had..." + (show)

@mackvogt13
Thank you for your response. It feels good to talk with someone who is feeling what I’m feeling! I am waiting on my genetic testing results now. I’m not sure how thorough it is but I’m hoping it has answers for me. I am waiting and hoping to see a rheumatologist if I’m accepted. I have been feeling exactly what you described, that CPS means my doctor doesn’t know. I don’t want to live on pain meds. It can be hard when the medical professionals keep telling you that there’s nothing more to be done. Luckily I saw a nurse practitioner for a second opinion and she has justified my feeling that there is more to look into. She wants me to start with rheumatology and then look into oncology. Thank you for validating my opinion to not give up and just accept the CPS diagnosis.

sophiaj87 | @sophiaj87 | May 19 8:16am

In reply to @bswpb "Do you have a rheumatologist? If not, maybe find one." + (show)

@bswpb
Thank you for your response. I am waiting for a referral to be accepted and hopefully I can get in to see one soon. My experience has been that the wait list for specialists often takes many months. It’s hard to be waiting and waiting, missing work, and all the things I would love to be doing. Hopefully soon. Thanks again!

bswpb | @bswpb | May 19 9:09am

In reply to @sophiaj87 "@bswpb Thank you for your response. I am waiting for a referral to be accepted and..." + (show)

@sophiaj87 I hope the referral is approved quickly. Does your insurance require a referral? I found a doctor and self referred. It hopes faster that way.

mackvogt13 | @mackvogt13 | May 20 2:51pm

In reply to @sophiaj87 "@mackvogt13 Thank you for your response. It feels good to talk with someone who is feeling..." + (show)

@sophiaj87 yes ofc! best of luck to you!

loriesco | @loriesco | May 21 2:05pm

sounds like your Ferritin is too high and you are having a whole body inflammatory reaction! Get to a hematologist at your soonest!
That is way too high and you might be experiencing lead poisoning! It could also be the Zepbound. Heard about many who suffered from too high of a dosage - similarly!
A high ferritin level means your body is storing too much iron or experiencing significant inflammation. Ferritin is a protein that acts as your body's "iron savings account." While a high level isn't a disease itself, it serves as an important warning sign for an underlying medical condition.
Common Causes of Elevated Ferritin: Inflammation or Infection: Even without an excess of total iron, infections, autoimmune disorders (e.g., lupus), and tissue damage cause ferritin to spike as part of the body's immune response.
Metabolic Issues: Conditions such as obesity, type 2 diabetes, metabolic syndrome, and fatty liver disease frequently elevate ferritin.
Iron Overload Disorders: Genetic conditions like hemochromatosis cause the body to absorb too much iron from food, which builds up and can eventually damage organs like the heart and liver.
Lifestyle Factors: High alcohol consumption, taking excessive iron supplements, or receiving frequent blood transfusions can also overload the body's iron stores.
Malignancy: In some cases, high levels can be a sign of certain cancers, such as lymphoma or leukemia.
What You Should DoIf your blood test shows elevated ferritin, it is crucial to follow up with your healthcare provider to identify the specific cause.
Seek Medical Guidance: A primary care provider or hematologist will likely run follow-up tests (like a complete blood count or iron panel) to determine if the high ferritin is due to inflammation or true iron overload.
Find a Specialist: If you need to consult with a blood specialist or find a local diagnostic center, you can use the American Society of Hematology to locate board-certified hematologists
A condition that causes the body to absorb too much iron from food is called hemochromatosis.