Don't know what to do anymore
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I tried to follow their advice as best as I could, but then they rescinded the diagnosis when i started gaining weight rapidly and I could no longer do the bendy stuff due to stiffness (i gained like 60 pounds in a 14 month span, went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.
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I have to take xanax crying all the time
would PT work for degenerate spine
and what is this and does it work for pain
I’m not up on what all diagnosis it is currently being used for… I know it was a treatment for depression. Perhaps your physician would be the best person to have a discussion with about ECT.
Good morning!
I am hopeful that you will find support, comfort, and direction from these conversations.
Have you considered that your diet or environment may be contributing factors to some of your physical concerns? There are resources address the many issues and solutions to food and environment challenges.
Perhaps consult with your most trusted provider and consider working with a diverse team that would include Nutrition/dietician, functional medicine, and mental health. You seem to be going through tremendous amount of health concerns- your mental health should be at the top of that list! Stress can throw you into a whirlwind of issues! Take care!
Ann Marie
I hear you my dear. My experience has been a similar runaround. Will write a longer. Reply to you later - dinner bell just rant!
WT
Have you been tested for Addison's disease.or sounds like you might have lupus. Have you ever been tested for pots p o t s. Postural tachycardia syndrome. Have you ever been tested for anemia. Have you ever been tested for this for automatic nervous system there might be something wrong with your automatic nervous system. Have they ever did a tilt table test on you. Have you ever got an echo done on your heart. First used to see if you have added some disease or lupus. Go to new doctor primary and get tested for Addison's disease and lupus. Get checked for anemia too. Get check for vitamin D2. It took for vitamin B12 too. Get your tire a check too thyroid. 🙏🙏
Have you ever been tested for for endometriosis. Poly ovarian cyst. Are endometriosis. You could have something called endometriosis a lot of people have endometriosis and get misdiagnosed you need to go to an OB/GYN. Best of luck
Have you ever been to a chiropractor or I'm not massages. Should try a chiropractor and massage acupuncture that's really helped me when my lower back pain and maybe try to get a back brace too. See if your doctor can get you into physical therapy and get you a back brace. There is a book called seven steps to a pain-free life. You can buy on Amazon or check it out at your local library. ⚖️👌😇 Have you ever thought carrying around a water bottle and filling it with electrical lights with a more salt.
With my chronic pain, it appears every time I am examined by medical practitioner, I get a different diagnosis with a fancy medical sounding name, and with a new prescription the pain continues unabated.