Don't know what to do anymore

Posted by findingmway98 @findingmway98, Mar 23 6:16pm

Hello, I am a 25 year old female who has been struggling with chronic symptoms for many years. I started the journey of trying to get help when i was 14, and I haven't had much help.

It started with low back pain and stomach issues, i would get terrible back pain, my stomach would flip, i'd get diarrhea, bad cramps. I had a major growth spurt and they ran tests and found that my TSH was a bit too high.

Over the years I developed more issues. Raynaud's, attention problems, insomnia, fatigue, mild anorexia, worsening back pain.
Each year they tested my thyroid and it's always been up and down, sometimes it's out of range and then sometimes it's normal. I got stuck with a diagnosis of Undifferentiated Connective Tissue disease when i was 17, and they didn't really do much after that. I started getting horrible joint pain, neck pain, headaches almost every day, i would have these major crashes where after a period of running around doing stuff my energy would dip and i'd sleep for 18 hours, have low grade fever, and then I'd be fine after a day or two or resting.

Fast forward to me turning 20, I got temporarily diagnosed with Ehlers Danlos Syndrome, classical type, because i had bendy joints and stretchy skin, and you can see my veins all over my body as well as me having tons of stretch marks, even when I was super thin.

I tried to follow their advice as best as I could, but then they rescinded the diagnosis when i started gaining weight rapidly and I could no longer do the bendy stuff due to stiffness (i gained like 60 pounds in a 14 month span, went from being underweight to borderline obese).

I have also had consistent anemia for many years, despite taking iron supplements. I tended to have horrific heavy periods that lasted 8 days

Now, at 25, my periods have become increasingly shorter and lighter, I bled lightly for maybe 4 days last time and I had no PMS symptoms. My TSH spiked, but then it dropped to normal again. My iron levels are normal, ferritin is a little low, but my RDW is 15.6 and my hemoglobin and RBC are low so they're saying I'm anemic, and should continue with the iron supplements. I was diagnosed with anxiety, I'm now taking fluoxotene 20mg each day, and that has helped with my headaches and depression somewhat, but not much else.

I have horrible fatigue, I sleep so much I miss classes, I miss work, I don't socialize. I was NEVER someone who could take naps and now I nap all the time. I had mild covid two months ago and I still can't shake the post nasal drip and cough, so now i'm using a neti pot and flonase to try and kick it.

My appetite is nonexistent, I feel full after eating only a few bites, i dropped ten pounds in a span of 2 weeks. Have been running low grade fevers for about a year now, and i still get butterfly rashes on my face. I begged for them to test me for lupus, it came back negative, they blood tested me for celiac, it came back negative, they tested me for inflammation markers to see if it could be fibromyalgia, negative.
I asked them for hormonal testing but they keep brushing that off and won't do it.

I have been told to proceed as if I am allergic to gluten even though the blood test for celiac came back negative, because it could be inhibiting my iron absorption. And where I expel blood sometimes when i defecate, they're wondering about possible crohn's disease as well, but that's a new idea in the last couple days so we'll see where that goes.

I am at my wit's end. I'm in so many kinds of pain, so many kinds of tired, I want to feel how a 25 year old woman should feel. I don't know what to do anymore or how to press for more investigation.

I have weird red speckling on my outer thighs and buttocks, like little pin pricks, they're flat and aren't itchy, they're just there. I get swelling in my legs (both of them) so bad i wear compression socks, i have physical symptoms that other people can see so I know I'm not just crazy. I can't do stairs, my legs get heavy and I can't catch my breath so I use elevators, sometimes i get so tired while walking that i collapse and have to sit for a few minutes.

What do I do? I feel like I don't have many options at this point. I feel like I'm slowly dying but I don't know why. I am frustrated and exhausted.

Interested in more discussions like this? Go to the Chronic Pain Support Group.

@atz0

I am new to the group and is following chronic pain to get some home from others experience. I feel for the young lady with multiple conditions because I too suffered over 20 yrs with pain and fatigue. I found out about leaky gut syndrome some time ago and have been researching it after the doctor told me yes ago tests shows inflammation all over and autoimmune disease.
There was no help from mainstream doctors as to what to do about it.Fast forward to the past few yrs,( 2021) and received a diagnosis of cancer in uterus, (peritoneal carcinomatosis). I was free of it for a year and has now returned worse than before (from 2022). I've turned to naturopathic care cause the doctors didn't offer much hope,vso I decided this path couldn't hurt & have actually helped many. I say all this to say I have chronic pain that nothing has so far helped: stem cell therapy, vit c, change of diet to mostly organic. I am open to hear from anyone who has gotten help from pain. Mine is mainly in the abdomen & have to do with my digestion I believe.. I can only eat a little at a time- I get very full & have bloating & gas wreaking havoc in my body

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Welcome @atz0, I'm sorry to hear the cancer has returned. I'm wondering if you might find it helpful to read through the following discussions while you wait for others to respond.
-- Anyone here been diagnosed with peritoneal carcinomatosis?
https://connect.mayoclinic.org/discussion/anyone-here-been-diagnosed-with-peritoneal-carcinomatosis/
-- Persisting abdominal pain, bloating, gas, clustering: https://connect.mayoclinic.org/discussion/persisting-abdominal-pain-bloating-gas-clustering/

REPLY

This is awful. So many times it appears there is no “diagnosis” and it is just test upon test with no real result. I could never have endured what you have. Best of luck to you in trying to live out a normal life. I couldn’t do it.

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Im not sure who your responding to. But thankGod i have a high tolerence to pain

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@lisebeau

Im not sure who your responding to. But thankGod i have a high tolerence to pain

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I have constant pain in my spine--sleep now in a recliner--position is just right for relief

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@bkaycoth

This is awful. So many times it appears there is no “diagnosis” and it is just test upon test with no real result. I could never have endured what you have. Best of luck to you in trying to live out a normal life. I couldn’t do it.

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I don't live a normal life

Never shoul have had the spinal fusion 6 years ago.

I was very active and never had back pain but I suffer now

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@szeszko1940

I don't live a normal life

Never shoul have had the spinal fusion 6 years ago.

I was very active and never had back pain but I suffer now

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I am so sorry you are dealing with pain now. I know just what thats like, i didnt have pain like this either before the ect treatments

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@lisebeau

Im not sure who your responding to. But thankGod i have a high tolerence to pain

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I also have a high tolerence to pain.But every once in a while you wish to be pain free. Its hard especially when its so hard to diagnose

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@lisebeau

I am so sorry you are dealing with pain now. I know just what thats like, i didnt have pain like this either before the ect treatments

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ect treatments???

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ect treatment ? WHAT IS THAT

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@szeszko1940

ect treatment ? WHAT IS THAT

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Electro convulsive therapy

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