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I tried to follow their advice as best as I could, but then they rescinded the diagnosis when i started gaining weight rapidly and I could no longer do the bendy stuff due to stiffness (i gained like 60 pounds in a 14 month span,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

Has anyone suggested an autoimmune disorder? I always think in that direction when symptoms are everywhere but nowhere specific, blood work is suggestive but not definitive etc. fatigue is ruling the day, etc.

There are others here who know more about the variety of specific types. I have RA but your symptoms don’t match that.

I’m sure one of our awesome mentors will find their way here. And maybe they will know someone who could ask smarter questions than I can.

Welcome to an awesome community. And good luck!!


Has anyone suggested an autoimmune disorder? I always think in that direction when symptoms are everywhere but nowhere specific, blood work is suggestive but not definitive etc. fatigue is ruling the day, etc.

There are others here who know more about the variety of specific types. I have RA but your symptoms don’t match that.

I’m sure one of our awesome mentors will find their way here. And maybe they will know someone who could ask smarter questions than I can.

Welcome to an awesome community. And good luck!!

Jump to this post

i was tested for RA and it was negative, lupus too, though my mom tested positive for lupus (but then tested negative upon retesting...), most people I talk to seem to think it's going to wind up being Lupus, I just have to wait for it to show up on the bloodwork.


Yea that’s my instinct too but of all the things I’ve accomplished, med school wasn’t one of them. 🙂
My blood test wasn’t positive for RA Factor until 7 years after I had been diagnosed - autoimmune disorders don’t always make it easy in terms of diagnosis. Sometimes it’s based on inflammation indicators measured by sedimentation rate (esr) and not much else to start.
I’d try to see a Rheumatologist.
Where are you located? If you don’t mind saying that is. Someone here may know a good one - tho it may be months until you can get in as a new patient.


Have your vitamin B12 check ✔️ and and D checked and ferrous sulfate check ✔️ .. you should look up Dr Jill Scofield.Good luck 🤞🙏🙏🙏


Have you ever been tested for Addison's disease.✔️since disease or Epi✔️🙏🤞🧐✅😇😇🙏🙏🙏


Hello, welcome to Connect @findingmway98. It was sad reading your post. Sad because I relate and have been there. I'm sorry you're going through such uncertainty and confusion with your health, especially at your young age.

My first instinct was that you may have central sensitization syndrome (CSS), but I'm not a doctor. Central sensitization syndromes are a collection of disorders where the central nervous system misfires and amplifies sensory input resulting in symptoms such as pain, fatigue, brain fog, and sleep problems. Multiple chronic conditions fall under the CSS umbrella.

You've got quite a laundry list of troubleshooting. That's what it takes, unfortunately, to come up with probable and conclusive cause. Being so stressed out during the process takes a toll and causes emotional distress (anxiety, depression) which adds to symptoms.

I hear your frustration when you say that you don't know what to do anymore, but it's so important to stay positive and hopeful. And yep, here you are asking for help and support. Way to go! Keep being your best advocate. I'm hoping other members continue to weigh in with their thoughts and experiences to help. In the meantime....are there specialists you have NOT seen that you think you should? @pb50 suggests a rheumatologist - what are your thoughts there? What autoimmunes have yet to be ruled out besides the potential of Lupus?

I hope someone is in your corner - do you work closely with your primary care doctor and if so, what do they recommend your next steps be?


You could still have an hEDS or HSD diagnosis, even if you no longer have a high hypermobility (Beighton) score. That's only one of the criteria for hEDS, and there's a different scale for people who are older but used to be able to do the bendy things that you mention. One of the stages of hypermobility is stiffening of the joints as we get older. GI symptoms, skin conditions, chronic pain, and fatigue are all symptoms of HSD and hEDS. Some of your symptoms even sound like you could have POTS (the fatigue, difficulty climbing stairs, need for compression socks).

But you could also have an autoimmune condition because it's common for people with autoimmune conditions to also have EDS.

Do you have a primary care provider or other healthcare provider to help you navigate things? If not, are you able to share what specialists you've seen recently? Some members may be able to help with suggestions for next steps you could consider.

I wouldn't totally rule out the hEDS diagnosis, but that would probably be hardest to get help with immediately. @pb50 brought up a rheumatologist, and that does sound like a good idea, but it could take a few months' wait. That's where it really could help if you're connected with a primary provider to help get the ball rolling with blood tests and helping you come up with a plan, but I know that's much easier said than done. If you go the route of rheumatology or via another specialist, just know that most providers aren't EDS-informed, so that's something that you may end up having to pursue independently while you're also working with other specialists.

You mentioned you were tested for lupus. I'm not super-familiar with lupus, but I do know from experience that there's not a small number of autoimmune conditions that are seronegative, meaning blood tests won't show evidence of the condition. I have a seronegative autoimmune condition. A rheumatologist--a good one, because I had to see, including one at Mayo Clinic who couldn't figure it out--would usually be best positioned usually to help you sort that out.

I'm so sorry this is happening to you, but for what it's worth, many of us have been where you are, and we're rooting for you. There are ways forward, but it can be slow and painful, but if you can somehow connect to support, whether that's here or with people around you, it can make a big difference, do the things you can do to help take care of yourself, while plotting a course forward on the medical side, you can climb your way out.


My heart goes out to you. I know what it feels like to have illness that nobody understands much less seems to care about. I agree with Rachel that a rheum is is likely your best practitioner, but I would vet them (or have your pcp or a friend do that) to be sure they have interest/experience with complex cases and things like fibromyalgia ( which, by the way, is not an inflammatory condition), CRPS and, perhaps ME and chronic fatigue. For more on FM search Dr. Ginevra Liptan and Dr. Devin Starlaynl who write about it from differing perspectives. There is also an online publication on ME/CFS that may guide you, too. It’s produced by Cort Johnson.

You might also find information, including doctors, through PubMed. I got the most help from a naturopathic physician, though, as with their allopathic colleagues, they’re not all helpful. Keep looking, keep asking.


I too feel sad reading your post. I’m in my mid 60s and I’ve been struggling quite a bit lately , I can’t imagine being your age and having to go through all this. You have a lot of support here, so please don’t feel alone…. do you have an immunologist that is good in your area? I don’t know where you live, but we have an incredible one in Naples Florida. People actually come in to see him from other parts of the country. He recently diagnosed me with an auto immune disease that had been missed and I too get the red little bumps that you’re talking from time to time. I thought you got some pretty good advice above about the CSS, maybe have your doctor check for that. Wishing you very good luck. Please keep in touch with everyone here and don’t give up. ❤️


I truly feel for you because I went through the same thing when I was 13 and it continued. I was finally diagnosed at age 50 with Hereditary Nerve Pressure Palsy (also falls into the category of CMT1A you can google that). There are so many symptoms because of this rare neurological disease. Finally Dr. Li is studying research on HNPP.
The only way to get tested is genetic testing. Otherwise, no one can figure out the symptoms. At first the doctors thought I had Lupus or MS, but one smart Neurologist finally did the genetic testing and he was correct. It runs in my family and no one knew. I was the first to get tested and was positive. Now my niece and nephew were diagnosed also. See a Neurologist and please bring up this rare disorder: Hereditary Nerve Pressure Palsy or Charot Marie Tooth Disease (CMT) Not saying you have one of these, but genetic testing is the way to go when you don't get answers. It is expensive, but you can apply for financial assistance through the lab that will be doing the testing. They should help. The testing only cost me $100. Best of luck to you and I hope you get some answers. It is very difficult living with something when there are no answers from doctors. Be your own advocate and don't give up until you have answers. It took me 37 years to get an answer!!!!

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