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

I'd like to help, but I'm just a patient like you are. You're in the state of Washington? Have you ever been to one of the 3 largest Mayo Clinics? They also do Zoom conferences with patients.

Do you have health care insurance? Are you on Medicare? Can I ask, were you trying to lose weight, or were you underweight even before losing 50 pounds?

My advice is to "make some noise." I don't mean that literally. I mean, you posted on here, and I saw it, so that's a start! I care, even though I don't know you. I had not heard of POTS, so I looked it up. I noticed that it said that "Most people’s POTS symptoms respond to a combination of diet, medications, physical therapy and other treatments." So, you're saying that you're doing all of these, and your condition is getting worse?

I've had several heart problems, but not related to this, so I know how it feels to think that no one cares if I live or die. Fortunately, I live near the Mayo Clinic, and my wife has a lot of contacts, and she helped me get appointments with doctors that I wouldn't have been able to get through to.

Do you need a specialist who specializes in this disease?
Or do you need a social worker?
Do you need an RN to help you?

I'm guessing that money and insurance may be problems for you, as they probably are for most people. Whatever happens, you can fight this no matter what the result is. Take careful notes and type them up,
if you can. There can be no such a thing as being "too organized." I mean, write down the exact times you've had phone conversations, ask the person as much as you can get about them so that you can write down who you spoke to, put any comments that you can quickly write down that they said in quotation marks, and even keep track of what day and exact minute they made that comment to you.

Use the internet to find physicians who specializes in this. Are there any within 60 miles of you? Any in the state of Washington? Have you been to a local public health department and discussed this with them? I know: unless people think it's going to make them money, people have a tendency to just tune out other people's problems.

Keep a diary, because every day counts. I don't claim to know whether you're supposed to be exercising standing up, or exercising laying down.

We can start out by clearing up something: you mentioned 3 different groups. Are they all connected with POTS? 1. ONE Post Covid Rehabilitation Clinic here in the entire state of Washington. 2. a Dysautonomia International group 3. the disease of POTS itself.

Do you need immediate help from all 3 above groups? Have you tried Googling "Post Covid Rehabilitation Clinic in Washington?" And then you could Google "Dysautonomia International group"
Finally, you could Google "POTS Washington"

You mentioned the amount of paperwork this has taken so far. It's going to take that much every single day to get this done, but you can do it if you plan ahead ad pay attention to every detail: no detail is too small!!

You need to find out the name of a registered nurse, a social worker, and an MD, at each of those 3 places you mentioned. Hopefully you have a printer that works, so you can print out all of this information without having to write it out by hand. But either way, you can do it!

Make a folder for each of the 3 above groups. Make sure that everyone you meet online knows how urgent you feel this is! If they ask you how you want to pay for procedures, tell them whatever they want to hear, just to keep them from hanging up.

Finally, you need to explain your situation to health care attorneys, and decide if emergency action must be taken on their part to force health care facilities in Washington to pay attention to you, and even take you in and monitor you. At this point, and I'm no lawyer, a lawsuit may be the best way to start out. But please ask the lawyer for his strategy for that. I'll be here each day online. Good luck!

P.S. Put every headline you make regarding your situation in large, red all-capital letters. That will get attention!

Ugh. I wrote to you then lost it. Let me try again. But I’m in the midst of my 3rd Covid infection and don’t have much strength.
I wanted to say that you must always remember you are not alone in this battle. All that you describe, I have been through- continue to go through. With the exception of cardiac issues, although I was told Covid can worsen already present coronary artery disease which I have.
I am lucky to have a support system, and I am so sorry that you don’t. Even with it, sometimes I feel like they think I’m a bit crazy. But I understand how they feel because Long Covid is a crazy disease for which, at this time, there are no good answers.
If you don’t mind, may I suggest two things, maybe you’ve already done them already- seek out a kind and caring counselor in your area and just go and vent. He/she will support and guide you as you maneuver through this nightmare. If you’re not comfortable with this person, try another, until you are. If you are having suicidal thoughts every day, you should have a suicide hotline number on hand to call. Your county department of social services should be able to provide it.
I would also suggest you find a nutritionist, as your continuing weight loss is concerning. A good nutritionist can help you find foods to eat that will support you as you search for the other answers to help yourself get well.
Please always remember, you are not alone. That you can’t get an appointment at the Covid clinic till June is proof of that… We owe it to ourselves to keep fighting. We can not let that slimy Covid bug win. I will keep you in my thoughts.

Hi@seeking support. I am so sorry I responded to the other tachycardia post before I saw this one and bmd is so right. I have always had symptoms that others here have helped with and have a therapist that helps keep focus on positive things. Please dont give up and reach out to your healrhcare systems patient advocate/social services dept with a copy of your post to save your strength and get the expected immediate therapist help. We are all here for you!

You are not alone, I know exactly how you feel. I got Covid back in February 2023. I have been sick since then. I was bedridden for months . I’ve been to doctor after doctor, tests after tests. This affected every part of my body and organs and I have never been the same. There was a couple times I thought I was getting better just to be fooled because BAM everything came back worse.
I have so many symptoms which are too many to list, and I’m getting more even after a year of this. I have just about every symptom that you read in the support group. I switched neurologist, because my original one did nothing to help me. The new neurologist asked, am I seeing a therapist because I might need to. In other words, I’m taking it he thinks it’s in my head. SMH! I have been to more doctors last year and again this year more than I have in my entire life. I even went to U Of M emergency room when I couldn’t really walk and was so weak and they did nothing but send me home. They were useless. Not to wish ill on anybody but sometimes when I’m at the doctors when they’re trying to dismiss everything and saying everything’s fine, I wish to God they would get this, so they can feel what we do.
While waiting for my pulmonary doctor to come in last week, I was talking to a resident doctor, and he is the only one that actually believed, and said he read about every symptom I described and said long Covid is kind of like getting brain damage, and it affects every part of your body and destroys it. He was the only one that was honest, and did not dismiss it. When my pulmonary doctor came in, he dismissed it. I wanted him to fill out a handicap, placard application for me, because he did a temporary one for me last year, but I wanted this one to be permanent. He said. “ well I don’t know if they will approve this and you already check marked permanent on there and not temporary”. I told him very aggravated. “BECAUSE IT’S NOT GOING AWAY.!!!” so he ended up filling it out but I haven’t been to get it turned in yet.
And I understand what you mean about being suicidal because of all this I have no quality of life anymore. It’s a good thing I love my children and grandchildren more than I love myself, so I will continue living in misery for them. Do I think about just ending all this so I don’t have to suffer anymore? Absolutely!! Will I ever try to commit suicide.? Absolutely not, but I wouldn’t be opposed to being hit by a truck.
So just try and hang in there like I am and let’s hope answers will come soon!

Wow..
Your story and the others like you is SO SAD and So wrong that no doctor can help you!! And worse yet...they totally Dismiss you!! SO WRONG!!! Does anyone on the Mayo Clinic staff see these posts and want to offer help to these people???? I am outraged by our medical system...simply dismissing these people....come on doctors.....HELP THEM!

Just another voice of support. I am living the same hell. For 1 1/2 years. I quit going to doctors. It is too stressful and there is no help...yet. We have to hang in there the best we can and hope for a medical breakthrough. But you are not alone and there are many of us experiencing the same suffering. I add my voice of understanding and care.

It may help to write your state and federal legislators as on 1-18 the U.S. Senate had a hearing on long covid. I found out about it after writing my representative. Not saying government can solve this, but it is important for them to be aware in that they can encourage the establishment of treatment facillties and also the sharing of information with clinics that purport to treat LC. I've also contacted reporters & writers on following up on stories as it is helpful that the chronic nature of this gets recognized. Many said they were going to (do follow-up) but have not & a think it's an oversight and mistake as dealing with the initial onset of covid has come much more under control than Long Covid. That is to move this ahead one needs support and care & then also needs to continue to break new ground with raising it to those who are not as aware, and especially with those that can play a role in improving and advocating for care.

This is all so sad! After more than a year of suffering I had a bone marrow biopsy and have been told I have CMML a chronic leukemia and may have for years of life left ! It is a real blow! When I said many with Covid have odd blood cells I was told “we do blood not Covid “God help us all!!

Hello. I am so sorry you have this. I have so many issues caused by Long COVID. Too many to type. I have had it from the start of the pandemic, for years. I can't remember what life was like before this. I agree that you should try to find a counselor if you do not have a close friend or family member. It took a while but my family does finally understand and are supportive. However, I went through years of not knowing what was wrong with me and doctors and family thinking it was in my head. That was absolutely miserable. I am with a Long COVID Clinic now and that helps. Hold on until June. I know it seems a long way off but it is something to look forward too. Mine has saved me. Just having medical staff who understand and know is such a relief. I have a lifetime sentence of health issues and nasty symptoms but the Long COVID clinic is helping me to mitigate the symptoms as much as possible. I take life day by day. I do not think of who I used to be but who I am now and try to make the best of it. It is lonely, depressing, painful, scary, etc. But I prefer being alive to not. I have found things that take minimal energy that I can do at home that make me happy. I wish you good days. I hope you can find someone to talk to. Remember you do have value. Even if your family struggles with understanding/believing this they love you. You are not alone, we are all here with you and have had to fight through countless doctors and tests to get to the right place. You are getting there. It took me over 3 years. Read through these threads, reach out to people here. This has also been a lifesaver. I am so glad I found this site.