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I tried to follow their advice as best as I could, but then they rescinded the diagnosis when i started gaining weight rapidly and I could no longer do the bendy stuff due to stiffness (i gained like 60 pounds in a 14 month span, went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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Gosh, I am so sorry you have to go through all of this! I am 67 and I have been through a lot as well. I remember when I was 17 and I would just crash sleep for 24 hours straight wouldn’t eat wouldn’t pee wouldn’t get out of bed, I was severely anemic and premenopausal and nobody recognized it. I couldn’t even stand up on my first day of my period. I would wear two tampons at once the super pluses and have to change them after an hour. Back in the day when I had PMS, nobody really knew what that was . All I know is I was anorexic and bulimic because I couldn’t eat and then I couldn’t control eating and I would eat so much because my body was basically starving to death so I empathize I learned that two weeks before my period I had to start preparing finally one day at 31 after I had my son everything changed . My my period became tall and lighter and shortened to seven days instead of 10. The crashing and sleeping I was told was a virus kind of like mononucleosis. Except for back in the day when I had this, they didn’t do testing so I just grew up knowing that periodically I just have to stop and sleep and then I would start to feel better. Over the years, I’ve come to realize that the canker sores or cold sores are herpes one Symplex and that I am very tired for about two or three weeks and I have to rest. I take lysine (1000 mg 3 times a day. One day I got such bad cravings I ate a bunch of hard boiled eggs (body was craving HEME iron) in the morning and 4 naval oranges at night ( for the sugar cravings). The next day I woke up feeling awesome! My intuitive connection to what my body craved and needed was the answer for my particular situation. After that, I always have listened to what my body craves and respect giving it what it needs. I no longer had any anorexia or bulimia I was done, I had had it and struggle struggled for 15 years. Like you, I have tested for many things and there is not much which became obvious to the doctors. I continue to test. I have an awesome Doctor Who allows me to test if I bring her the symptoms and the research I suggest that you must become your own advocate And continue to test. Some thing to know is that many of the test which are given tell you what’s in your bloodstream at any particular moment but what really is needed is to get down to the cellular level. And nobody reminds you or your doctors of this. So for example, before I test on say vitamin D or B12 I will stop taking my supplements a few days before so we can get a more accurate picture of the status of my bloodstream. Sometimes the converse is true that I must have a picture of how I am while on the supplements. Again, you have to be your own advocate , you will have to do exactly what you’re doing which is reach out like you are doing here and continue to read the research. Skip the popular web MD type sites and go for the NIH national Institute of health and scholarly articles. There are many rare diseases and it will take the medical system Post Covid along time to figure out what might be your solution or solutions. As I have aged, I ended up with a variety of things that all contribute to some of my problems. It’s just the way life is for me. But I have a really good attitude about it and that’s what’s most important , I have touchstones. I am optimistic 98% of the time because I see people here who are so much worse. They don’t have the resources and skills and education that I have. That you have a talent to communicate. Make a list of your talents and remember those , when you feel like you’re being consumed by ill health. The good thing is that you will learn a lot along the way and then you’ll be able to help other people too! Remember to be kind to yourself, that is the most important thing. Please talk to your doctors to figure out if you qualify for disability. I can’t imagine how you can work through all the things you described. I was very lucky that I started my own business and I worked at home so, all of my monthly menstrual woes were dealt with by being at home and working. Also figure out if you can get onto Medi-Cal or Medicaid and get financial support through the government so you can get treated as you need to without needing to worry about the financial problems that go along with the nightmares you’re facing , the bad news is that government can be kind of shitty but if you are smart and push the system, you can get what you need. We are definitely in a two system now for healthcare. People who are the most vulnerable and need the most attention are swept under the rug , you seem like a really smart girl so use your wets and demand what you need, what you are entitled to. I’ve had to take my insurance company to court and I’ve won. I have to demand my doctors right prior authorizations to get the good medicines and I ask. All of this stuff that’s dragging you down you’re going to find is actually character building. I can’t emphasize that enough. Try to be cognizant of medication‘s that are not good for your body over the long-haul. There are many! But sometimes you have to take things in the short term to get over the hump. Try to explore eastern and western medicines and use them both as you need to. Try deep myofascial tissue release therapy to help your body relax. Your body is all gummed up and that creates tension. Also explore HSP I think it stands for hyper sensitive person. I am one. this means. Try deep myofascial tissue release therapy to help your body relax. Your body is all gummed up and that creates tension. Also explore HSP I think it stands for hyper sensitive person. I am one. This means I’m hypersensitive to everything. To medication, to pain, to treatments, to emotions, to things that happen with my physical body. I will feel an experience it years before the test results. Finally show that I have something physical. So be aware that the tests are based on average mean. And you might test within range but at the lower or upper end. I always do I sit right on the border and my doctors always say I am within the mean. And I respond saying with the nutrition and supplements I consume I should be at the middle so if I am borderline, it means there’s something wrong Over there has been something wrong . I have plenty more to say and can offer, but this is probably long enough for now so just respond if I can help any further and know we all support you and we all experience various things like you go through. We’re all human and we’re really not that much different! I always say to my doctors am I the only person that’s going through what I’m going through? And then they tell me that I’m not. But I’ve grown up very much alone through everything. Character building!
Have you ever got your lymph nodes tested for lymphedema is called lymphedema. 🧐😭 Your limones they probably are so stressed out you might have something called one could be my I don't know I'm not a doctor so you'll need a get a test by your doctor or if your doctor is not helping me you can always get a second opinion and go to another doctor and start with a fresh slate probably I would try to go to university I don't know what to make it from My Head start by going to a university and hospital and try to get student doctors during the best at home to help you do think of new test and they think of new ideas. 🆕⚖️🦾🦿🦻👌🧐😭👌🙏🙏🙏
Have you been tested for lymphedema or EPI .🧐 Go I GI doctor for that 🤣