Hiya. I sympathise with you. Here’s what I would do. I wouldn’t necessarily change doctors but I would have a one or two off consult with another - a specialist in overall health or a functional doctor or another that you think is good. Then I would change a few lifestyle things. I would change to AIP DIET but I would add in eggs. I wouldn’t do it half pie I would bang become an aip eater religiously. You will find inflammation goes and you are feeling more energetic very quickly. You body is saying ENOUGH at the mo so I know you need to change. I would drink lots of good water and go for a walk 3-4 times a week - just a short quiet walk. You will be stressed so do anything you can to take stress away. Meditation, naps, chatting to friends about other things not your health. Read, knit, make videos of yourself dancing. Draw out the inner you. Your body will start to love you again. Xx

I do not know if this would be helpful or not, but have you had your thyroid tested? hormones? Thyroid test TSH test can be done at Labs of hospitals, hopefully insurance cover, because it is a fairly routine type of test. I hope you have healing success soon. So frustrating when not listened to, and not finding help. I've heard (but don't know about it, just in passing) rheumatoid arthritis can be tough, heck all the stuff ya wrote about your situation sounds difficult. So sending virtual safe hugs your way! Also just a thought wonder if you have MS, multiple scoliosis? I'm dealing with VERY recent diagnosis of Graves disease autoimmune, I have sometimes seasonal allergies one year I was throwing up thought i had sinus infection or ??; and I have Lichen Planus, one doc. told me he did not think I had it EVEN though he is the same doctor that told me to go to dermatologist and that dermatologist sent him the diagnosis of biopsy lichen planus. I had light case by time saw that doc, but still 2yrs in row tried to figure out what is this skin thing. Turns out a relative of mine has the same skin thing, and her doctors had difficulty diagnosing it too. My dear a dear friend of mine told me that sometimes the doctors are 'practicing' medicine. Let that run thru your head, realize we are each human but some have more training and or brains then others and or experience and we're each here for some reason or another and doing usually the best we are able. Again Hugs and hope things get better sooon for ya!

I started having symptoms of an autoimmune disorder in about 2006. I have reported symptoms over the years to my provider. My medical record says "psychosomatic". I decided about 6 years ago that I am not presenting with enough symptoms to convince anyone to do any testing or referral to specialists but one day that will change.
March of 2022 I went to my PCP and said that we have to do something about my hands. They are so painful. She said we will send you to the hand clinic again. Then.....she took the time to examine them and said "sausage fingers". She ordered a bunch of labs which came back positive for C.R.E.S.T. which is old terminology. She then ordered a rheumatology consult. I have systemic sclerosis, limited type.
As I have researched this it is apparent that many people with autoimmune disorders know it isn't just in our head. But it takes a long time to present with enough active symptoms to get others to believe.
My PCP started with a few inflammatory markers which resulted in the referral. Maybe you could start there.
(CRP) C-Reactive Protein level
(ANA) Antinuclear Ab, HEp-2 Substrate, S
Sedimentation rate.
I have also discovered that the University of Michigan in Ann Arbor has a great Rheumatology Department and a great website for patient education.

@lexaprobiotic You sound like so many who are struggling with an undiagnosed autoimmune condition. Since you can’t diagnose yourself, start keeping a symptoms journal. Include every symptom, when it started and what triggered it. Anything you can think of.
Also, you might look into major medical centers or university/teaching hospitals in your state. They are more up-to-date with research and treating unusual cases.
There are good articles about why women are often ignored and what you can do about it. (I had one, but it doesn’t have a link, so I couldn’t put it on here. The best thing you can do is to advocate for yourself. Educate yourself and be prepared for every visit. I know you can do this!
Will you stay in touch with the group and let us know how you’re doing?

COVID and vaccines work by increasing the cytokine/bradykine level in your blood. It's how it creates immunity. How many of us have immune deficiency but taking flour and covid and other vaccines at once. Never take more than one vaccine at a time. Our bodies are struggling just to function in the face of other immune disorders never mind taxing it to where it won't fit any antibodies. Getting the shot doesn't guarantee antibodies. Drs say it's ok to take several vaccines at once. My cardiologist who is treating 12+ children a day with cardiac issues post covid, says at least a month between. Makes totally sense.

So ask to have your flammatory markers checked. Many of us with preexisting immune disorders are already living with adrenal Fatique. Where do you think the vaccines hit? It's a whole big messy system of checks and balances in our adrenal gland.

Many with covid are also finding an elevated histamine level which is known to cause itching and esp if an "anti-" histamine helps. There are histamine disorders that can be triggered. Best of luck.

And many of these things will fall under long haulers. I have lived with longhaulers- now on oxygen and looking at buying a wheelchair...for 2.5 years. I also have CRPS which is much worse after my second dose of covid. Nearly bed ridden for 5 weeks now.

Hi
I’m so sorry you feel unheard and looked over. I have felt this too because doctors are so so so busy with overload patients.

May I ask where you have tried to be seen?

I have Skogrens with neuropathy associated and am trying different things but have not found true help yet.

I also had issues beginning in 1995 when I was pregnant with my son. I developed dental issues. The doctors said it was a dental issue and the dentist didnt't do anything. I kept telling them that something wasnt right but neither listened. In 2005 I wound up losing my teeth because of the dental issues. In 2015 I was finally diagnose with sjogrens and it was the dry mouth that cuased the massive tooth decay. The issues went on for at least 20 before it was actually diagnosed. I was right the entire time that it was in fact a medical issue.

Now I have at least 4 confirmed autoimmune disorders and each time I kept telling the doctors and specialists something wasn't right none of them listened. Again I was right. It is extremely frustrating.

I was diagnosed by a rheumatologist with fibromyalgia. My blood test showed RA in my blood so my PC referred me to the rheumatologist and he advised I did not have RA but that my symptoms pointed to fibromyalgia. He prescribed a few different medications starting with gabapentin, which made me gain 30 pounds the first month so was switched to Lyrica that put even more weight on and stopped that. Then I was prescribed Savella. None of them seemed to help my problems so now I don't take a medication for it. My knees do swell at times and I do have pain in many areas. Tired most of the time as well but I have other issues too. Severe iron deficiency, Celiacs, IBS, & Factor V Leiden. I am trying to adjust with all of these at the same time and so far nothing seems to improve. I pretty much stay home all the time other than Dr appointments because of all the anxiety from my issues. I am 73 years old.

Thank you everyone for your suggestions, I really appreciate you guys taking the time to comment and share your own stories. As an update I still haven't seen a rheumatologist, however, some other things have happened that I am waiting to be resolved before attempting to secure a referral.

I recently broke my left humerus, it's known formally as a medial epicondyle fracture. This of course is coincidentally where the joint is. So on top of my other symptoms, I can add bone fragility to the list.

Yay...

Anyway, I need my cast to come off and for that medical situation to be resolved before tackling my provider with any other problems. This honestly only has to do with me being ready for another problem so soon, however, I enjoy your wonderful comments and kind words. Just wanted to let you know I am doing okay for the time being.

@johnbishop thank you for your suggestion of palindromic rheumatism, you really are a gift to my journey through this and I just wanted to personally thank you for your kindness! I hope your own troubles are easing as well.
Much love ~ Lexa

Your symptoms are all found in many autoimmune diseases or other medical problems. To narrow it down take a look at your genes. You will need your raw DNA from a source like, Ancestry.com or 23 & Me. Download the raw data to your computer, do not open it. Go to: Codegen.eu. Download the DNA . In about 10 minutes it will analyze your genes and give you the top genetic medical problems, and genetic variation you have. It is very scientific and gives all references they used. It will also give the percentage chance for having the medical problems or traits.
I knew about some of my genetic diseases and problems and they all came up.
This will give you a chance to either pursue the genetic possibilities or eliminate genetic diseases. I don’t know a reaction to Benadryl is a good basis for predicting a medical problem. An autoimmune disease is very different from an allergic reaction.
Genetic problems come from a family member. Of course there are many medical problems that are not genetic. This may give you some answers so you can have a direction to go and eliminate some.