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I tried to follow their advice as best as I could, but then they rescinded the diagnosis when i started gaining weight rapidly and I could no longer do the bendy stuff due to stiffness (i gained like 60 pounds in a 14 month span,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

findingmway98 | @findingmway98 | Mar 25 8:22pm

In reply to @pb50 "Yea that’s my instinct too but of all the things I’ve accomplished, med school wasn’t one..." + (show)

I'm in New England, I go to Mass for my medical appointments but I live in New Hampshire so commuting there is a hassle

findingmway98 | @findingmway98 | Mar 25 8:28pm

In reply to @crazykbl "Have you ever been tested for Addison's disease.✔️since disease or Epi✔️🙏🤞🧐✅😇😇🙏🙏🙏" + (show)

i have not but I should ask about it, the symptoms sound really accurate for me

crazykbl | @crazykbl | Mar 25 8:48pm

I had problems for a long time and when I was about 33 years old a doctor on decided to test me for Addison's disease I was having symptoms just like you she started me on hydrocortisone and it helped me a lot please get it tested out best of luck and prayers. ❤️❤️❤️🤞🤞🤞😇😇😇🙏🙈🙏,. Keep me posted when you get to test them done ✅👍

samcal9977zz | @samcal9977zz | Mar 26 9:36am

There is a clinic in Dallas that deals with very difficult illnesses. The head doctor was asked what the patients who did best had in common. His answer: "They never quit."

Just keep researching, learning, keep trying.

Virtually impossible problems to solve, do tend to surrender to time. Just keep at it.

You will make more and more progress, get more and more answers.

And, at one point, everything may just completely fall in place.

Take care now.

sorry for what you suffer.

crazykbl | @crazykbl | Mar 26 5:43pm

Have you ever had a echo on your heart or a right heart cath. You might have a PFO or ASD MPV . I might have at asd pfo closure about 8 years ago and then I right now . . Please ask your primary doctor to get it at to get a heart echo on you. Just say what how long can it hurt please get echo on me with the other test of the other stuff going on. It's your body and you have a right to get stuff done. 🙏🙏🥰🥰🥰😍😍😍🤣🥰🥰

realtorretired | @realtorretired | Jul 18 3:36am

I know what you’re going through. I am 69 year old female and fatigue began in my 20’s. I would be driving to work at 8 am after good night sleep and have to pull over and nap in my car. Thankfully I have an understanding husband. At 60 years old I developed daily headaches. I live in Chicago area and it took 3 years and 30 different types of doctors and finally went to University of Chicago medical center with my MRI and my neurologist diagnosed occipital neuralgia. I was referred to their pain clinic for treatment (spinal shots). When the shots stopped working they implanted a neuro stimulator which saved me. Then stomach pain so I went for my colonoscopy. Dr noticed my blood work showed extremely elevated enzymes (300+ when should be around 10). With each sickness my fatigue increases. There is no way I could have a job. I have cleaning lady. My husband does the grocery shopping and cooking. Most days I take three naps, usually a couple hours each. I mostly watch movies or read. No longer able to garden. Life sucks.

germangirlvt | @germangirlvt | Jul 19 10:23am

I’m just commenting because I want to say how amazed and thankful I am to be part of such a supportive and caring community.
@findingmyway98 my heart goes out to you and as others said, I hope you have supportive prime in your life to help you through this. Sending gentle hugs and positive vibes your way.

painqueen22 | @painqueen22 | Jul 20 6:22pm

In reply to @crazykbl "Have you ever had a echo on your heart or a right heart cath. You might..." + (show)

The only advice which I can offer which is what has "helped" me. I have suffered with Rsd for 40 years and now pretty severe back pain for about3 years. Pain is awful(no matter its cause or place.The day-in day-out nature of it is very saddening. Keep going; do not talk too much about it except to your Dr or very close friend and even then do not allow yourself to focus on it. Make sure you have a life; there is no such word as can't. Keep going; be sure your heart is at peace with the Lord; Pray; Read scripture; Make yourself sing(it lifts your heart) and the heart must be lifted.Gaze at the stars, the flowers, whatever. The mind must be lifted. My prayers are with you all:lift up your heart!

kenc | @kenc | Jul 21 10:29am

In reply to @painqueen22 "The only advice which I can offer which is what has "helped" me. I have suffered..." + (show)

Many times easier said than done, but still good advice.

atz0 | @atz0 | Jul 22 3:10pm

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