Hello @lexaprobiotic, Welcome to Connect. Sorry to hear that you've seen so many doctors with no answers. Your symptoms sound like they could be a number of different conditions. My first thoughts were polymyalgia rheumatica (PMR) which I have had two occurrences and it is crippling when you first have it and don't know what's going on. Also, there are many other conditions that mimic PMR. Hoping other members can relate to your symptoms and share their thoughts or suggestions.

You mentioned that you've seen several specialists. Have you seen a rheumatologist? Are your symptoms constant or do they come and go during the day/night?

Hi @lexaprobiotic - Some of your symptoms do sound like Lyme disease and basic tests done in most health care settings do not detect many of the infections. I might see a functional medicine doctor/naturopath and see if they can run testing. I agree with you that since you had COVID your immune system may be fighting against itself. Have any of your doctors listened to your suggestions and done testing for your other ideas of what it could be?

The ANA test could help with dagnosis.

Autoimmune diseases are very hard to diagnosis in some people. My bloodwork comes back positive for autoimmune disease but when the specialist does further testing and everything is negative! I have been battling this for years. Like you I recently had Covid and all my symptoms intensified, If you have access to labs online be your own
advocate find out what blood work they have ran. Look for an ANA and what you level is. Hopefully they ran a C-Reactive Protein. Find new Drs if you have to. Also for me I can say that following a anti-inflammatory/ low fodmap diet has also helped.

Your symptoms sound very similar to mine… You may want to look into Mast Cell Activation Syndrome. This link is to a guide for any doctor to begin the diagnostic process…it may also be good to have all your vitamin levels checked. It is also very common to have a gene mutation that impact absorption of vitamins…but easily treated…ask for a MTFHR gene test.
https://www.ehlers-danlos.com/wp-content/uploads/MCAS-Primer-for-the-Gastroenterologist.pdf
As for itch, which is a super common symptom of so many medical problems…I take an otc supplement, Beta Alanine, 750 mg kills the itch for me…someone on a Facebook group for itch related issues discovered it…it is typically a preworkout supplement but at a higher dose…I buy the NOW brand on Amazon.

Your symptoms are similar to mine. My allergist pegged my flushing syndrome as Histamine Intolerance with Mast Cell involvement. He put me on Xolair Shots and I responded well. I could have been better a year ago but my PCP put me on Lipitor in June 2021. He ignored my symptoms as LH Covid BS, whiney, faker and turfed me to my allergist to manage my care. I ended up with Severe Rhabdomyolysis (or some other auto immune myositis that can be statin induced) and in Kidney failure headed for dialysis. Then he quit as my doctor as he had the labs in his hands that showed kidney failure. No providers except my allergist, are bothering to help me figure out the diagnosis but he doesn't really know in detail what should be managed by a Rheumatologist. Its been hurry up then wait 3 months for the next appointment. With your symptoms you should consider seeing both an Immunologist and Rheumatologist that will work together as a care team to address problems. Of course dont laugh, because I'm still trying to get that combination. I have a great allergist. I just need the referral to Rheumatology to go through.
I've been at this for 2 and 1/2 years but the LC symptoms were masked/mimicked by a non covid, provider induced problem that should have been easily identified by reviewing my med list. Don't dismiss factors outside of Long Covid. I could be done with Long Covid, IDK because the problems I have now could be statin induced or complicated by Long Covid. I just keep hoping the Rhabdo will finally resolve and nothing else will pop up. Fat chance!

Don’t give up. It took me almost 15 years to get a diagnosis. I had a lot of the same symptoms you have but more added to it. I was finally diagnosed with stiff person syndrome. Only 7000 people in the world have been diagnosed with this disease. With it being such a rare disease there really isn’t a lot of study into it. Finding out it is a progressive disease also didn’t bring any relief. Because I don’t have the antigen marker in my blood it is still hard for me to get Specialists to agree on the diagnosis. Therefore, no treatment.

Wondering if this link might offer any insight?
https://www.healthcentral.com/slideshow/what-causes-rheumatoid-arthritis

Hello! I have never commented in the past 2 yrs since I’ve found this site, so I apologize for the lengthy comment - but have used the Mayo Clinic Connect as an amazing “Real-People in My Shoes” resource as I went on my own journey the past couple years (NON-COVID or VAC related; so many people’s symptoms became noticeable with those 2 scenarios). My lab tech where I’ve had my numerous blood tests drawn has become another valuable resource in my journey, she told me about a website - https://www.ultalabtests.com/ - when I was running into closed doors everywhere as well. I have since created a wonderful medical team of Rheumatologist & ARNP at the practice, PCP, Dermatologist, Optometrist, Psychologist/Therapist (YES - one of the most valuable team members since more than my body has been affected & my mental health has taken one of the biggest tolls!) and today after a much anticipated 5-month wait, I’m seeing the Neurologist for the remaining symptoms that no one can determine the cause!

The website I included above does not go through your insurance or a need to be seen physician to order tests! It gives a fair price as well as often there are sales (99% of the time, a test is going to be on sale, so wait for it and sign-up on the site as it’s free to become a member). I had always wondered my blood type & started with that one, they give you an order to bring to lab for draw & all results go directly to you! They have every single blood test imaginable from what I can tell and their support agents are very helpful in answering questions. For example, I may soon no longer have insurance, therefore, I will be using this site to order my tests that my physicians order since it will be much cheaper than going through the lab directly w/ my doctor’s blood order.

My best advice to you is DO NOT STOP RESEARCHING - be knowledgeable about your symptoms, organized with your thoughts or questions and make good use of that 12 min you’re going to get when you’re alone w/ the doctor. You have to be your own advocate (so many people say that) but if I was not persistent through this process, I wouldn’t have a diagnosis at all, I wouldn’t have medications prescribed to help minimize the symptoms at least a little bit and I wouldn’t have found a team that I felt was as dedicated to restore my quality of life to the best of their ability as I was.

Don’t be afraid to look elsewhere for a new PCP - this was the key to my journey. I fired my previous one since they did not see the sense of urgency I did since I was declining so rapidly with no answers. My new PCP was able to send referrals to the multiple specialists needed to keep digging until we find all the answers for everything. My first visit with him, I was distraught, frustrated, exhausted, in pain, confused, angry, sad - everything you can imagine and essentially wept explaining what I was going through day after day. When I apologized for breaking down, he simply grabbed the tissues and said “You don’t have to apologize. You cry as many tears as you’d like. I can’t imagine what you’re going through but I’m not stopping until we get it figured out.” I knew I had found THE one!!! When you have a doctor that says “Stop googling! I am your google. Send me a message and ask me anything on your mind” - and you actually believe them - then you’re on the right path!!!

My dx: MCTD (Mixed Connective Tissue Disease), Hashimoto’s, Dysthymia (Persistent Depressive Disorder) & Fibromyalgia

Sounds like I have written this as it's so like my story. I'm waiting for ANOTHER MRI ordered by a different Rheumatologist . I have had pain in my neck and shoulder since 10th May 1983,I know this as it came on within a few hrs or having my 4th/last child.I had never heard of Lyme till I was in my 40's. While living in Hong Kong for 2 yrs around the time the pain started and having multiple mosquito bites I had 2 bites that came up as the typical 'Bullseye' and had no idea there was a test that I could have done so long after.The Rheumatologist ordered one 2 weeks ago which came back NEG. I have had muscle pains/spasms for the last 39yrs. In my 50's I was diagnosed with OA so ALL the Dr's are off the hook from then on because now they have an excuse::::::::::: "It's your age you have osteoarthritis, there is nothing we can do for that" . No reaction from my GP when I said "my life has just passed me by and I sit on my sofa waiting to die" What the hell is wrong with the Canadian health system. SO, KASB fight them while you are young enough and do your best to get a diagnosis.Good luck I hope you fin some treatment.