I feel like I’m slowly dying and nobody is helping

My god…I can’t believe this. I am so very very sorry. 💔 Why did it take a year to get a bone marrow biopsy? Were all of your blood tests normal? Would you be willing to type out your symptoms?

You sound like me....I started a thread about accepting my new normal.
I have had all the tests etc etc and i am worn out from spending all that time
only to be told everything comes back normal.
I am taking a break from doctors and hoping advancements come along.
Until then i keep pushing through and doing the best i can.
If the OP reads this....Keep fighting and know it is not your fault and
you are not alone!

Just a little anemic then this ‘ I can’t believe it and my family and I all think it’s from Covid and will go away! Maybe we are crazy!’

I forgot to mention, I have POTS and I wear an abdominal binder which helps prevent me from passing out. This is not the most comfortable thing but it has made a big difference. You can also wear compression socks. I can't wear them due to having Neuropathy and the extreme form of Neuropathy, Chronic Regional Pain Syndrome, in my right foot and lower right leg. I can't stand anything tight on my right foot as is it sets off awful pain and nerve sensations. I got my abdominal binder on Amazon for around $20. This was recommended by one of the doctors I have seen at the Long COVID clinic where I am a patient. Also, I would not push yourself with physical activity. I pace myself and do 20 minutes of activity at a time. I made myself worse when I pushed myself. Good luck! Keep your chin up! Look forward to your June appointment. When things are at their worst, the only way to go is up. Things may never be the same again but there can be improvement. Then there can be new, even really small things, that can make you happy. And as I said in my last post, you have value. We all do.

Thank you. I read it and it’s helpful.

Just so you know, this is the only visible post. I’m not sure what you’re referring to because all I can see is the post I am responding to.

Hello. I tried to reply with my first message but this site will not let me re-post the same information. I am not sure why you are not able to see my first post that I submitted 21 hours ago. I can see it when scroll through all the posts that have been submitted to you. I am sorry. I have no idea how to fix this.

@smdawson540, reposts of the same message are not allowed to deter spammers.

@seekingsupport, you can see the post that @smdawson540 refers to here: https://connect.mayoclinic.org/comment/1019188/

I am so sorry to hear of your situation and I tell you it feels eerily similar to my own experiences. I do have been sick for the past few years, am barely able to work (my job has been very gracious to me and I work from home), I also have lost 50 lbs unintentionally (and while TRYING actively to gain weight) and had multiple surgeries and have felt like I am dying for 2+ years. I have cardiac issues, neurological issues, had organ prolapses, have psoritatic arthritis and a myriad of other fun stuff. I have been lugging my carcass around to doctors and begging for help and answers, I currently have 15 specialists and now confirmed POTS. Finally, I got some answers when I was diagnosed with Ehlers-Danlos syndrome. That led me to Mayo whose program is really not suited for my needs and frankly I feel I don't have the time to spare to wait 6-9 months for a treatment plan and the amount of testing I would have to re-do is enormous. I saw an internal medicine doc recently who shared with me that for ppl with EDS the covid vaccine (and potentially infections) is launching ppl into a severe disease state and rapid progression of symptomology and decline in health. I just turned 50 and have had every major EDS associated complication there is in the past 3 years. I believe my mother had it too and she passed in 2022 from covid after also declining health for 1.5 years. Both of us would stand up and faint often and both of us has had spells that have seriously injured us. I am beyond exhausted and yet cannot sleep more than a couple of hours at a time. Part of it is pain and part idk, my heartrate is always high these days. I have a hx of hypertension but now my BP goes from very low to very, very high and my cardiologist just blows me off as a worrier. I'm so sorry you are going through this at such a young age. Please keep going and ask those that care about and love you to help make phone calls. Have you seen someone in internal medicine? How about a functional medicine doc or physiatrist? Anyone that will look at you cross-systemically and see the picture and not just their specialized sliver of expertise in the different areas (for example I have 4 orthopedic doctors for 5 different joints). It's impossible to find help, insurance is completely obstructive, the medical system is failing and it's harder than ever to be a complicated patient in this crumbling climate. I am sorry your support system has been horrible, I can tell you I ended an 8-year relationship because my partner gaslit me and acted like I was faking and milking it. My mom passed away recently and no one has wanted to think that I am as sick as I am, but they are finally starting to pay attention. I hope your family too realizes soon this is happening to you, it's serious, and while there may be depression it's likely a result of your dire situation and potentially the impact of the disease(s) itself. If there are any clinics in oregon or idaho, nevada or western montana that could see you earlier I recommend taking the trip there. I too am desperate and was told it may be too late for me things advanced too rapidly but I am trying with the little energy I have not to give up. Best of luck to you and I hope you find some help asap. Take good care!

You are absolutely NOT ALONE! Your story (with countless others) is similar to mine. Years of going to doctors, emergency rooms, test after test after test, but everything is normal?! I didn’t know what was wrong with me, heart palpitations, gastrointestinal issues, nerve pain, intense sinus/ear pressure, balance problems, brain fog, episodes where I feel I’m going to lose consciousness and this internal vibrating sensation in my body. I too felt loss, unheard, hopeless, in despair and yea suicidal. A few doctors said it was just anxiety, nothing wrong with me. It wasn’t until a family member mentioned Long Covid and I should research and look into finding LC Recovery doctors. I found two clinics here in NYC. I two was diagnosed with POTS, and if nothing else I felt validated that it was some phantom illness in my head. Do I physically feel better not at all, do I wish whatever this is just take me out of my misery absolutely!
I’m grieving a life I no longer have, still trying to cope and accept. Feels like the world is moving on without us.
I do have a pretty good support system it does help, there are lots of support groups out there most are through major hospitals. I have one that we do through zoom, please let me know if you interested.
I’m sending virtual hugs, lots of light and positive thoughts. PLEASE DONT GIVE UP!! We are with you!