Undiagnosed Autoimmune Disease - No one will listen to me

I’m so sorry you’re suffering so much. I was diagnosed with Hashimoto’s/Hypothyroidism in 2023 and have eliminated many foods that I have sensitivities to and it has helped with inflammation tremendously! Look into having that blood test done to find out what your sensitivities are. I wish you good luck!

DNA genetic testing by lab that specializes in doing this for disease IDENTIFICATION

Your symptoms and labs are certainly consistent with an autoimmune disease. Inflammatory markers and an ANA that high would suggest possible lupus, especially with the kidney involved. You do not have to have positive antiDSdna for a lupus diagnosis. I would not focus on the HLA B27 unless it is your SI joints and low back that bother you most. I would ask to have muscle enzymes measured in blood since you have significant muscle pain and weakness. Myositis (muscle inflammation) can
accompany lupus. These are CK, aldolase, AST , ALT , LDH.
A blood test for sarcoidosis might be helpful since your ankles bother you so much.
If you ever get rashes have them biopsied with immune fluorescent studies. That’s one way to get a diagnosis. I wish you better luck in finding a doctor that will get to the bottom of your illness.

I am 45 years old I am experiencing full body bone pain. From my neck down everything. Hands back legs feet my knees. I can barely walk I can’t bend down and using. My hands are hard they hurt so very bad. I hurt so bad at night I can barely sleep. My primary care said it sounds like something autoimmune. She did tests and I was positive for ANA NUCLEAR. But the rheumatologist she was trying to send me to said that’s normal and will not see me. I was diagnosed with complex regional pain syndrome in my
Legs. Now two different nerve issues in both thighs. Plantar fasciitis in my feet. Carpal tunnel in both hands. Spinal stenosis in my neck. But I am in excruciating pain all day and all
Night. In the bladder IC is what they told me the pain is terrible. I don’t know what to do at this point I am going to the er. They said they don’t know and giving me Tylenol and ibuprofen.
Muscle relaxers that does nothing at all. I am struggling with every body part this is insane I need help what is this..

These autoimmune diseases are tough.
I’m suffering for 12 yrs now with CIDP and it’s really affected my way of life everyday.
Can’t walk can’t play can’t run.
Balance is so bad I have to use a walker or a cane daily.
Now my right hand is totally numb, can’t write or hold anything with it.
Just went to a hand specialist and had a nerve test done.
Awaiting results any day now.
Doc said could be part of my neuropathy or a pinched nerve in my arm.
Guess we’ll see which way this goes.

@heggie1979 Welcome to Mayo Clinic Connect. I’m sorry that such severe pain brought you here. I”m sure the members will come to your assistance soon. Do you live alone or is someone there to help you? Now, you mentioned CRPS, carpel tunnel in your wrists, plantar fasciitis in your feet, and more. Are you receiving any treatment at all for these problems? Are any of those doctors able to help you? Are you somewhat near a large teaching hospital or a comprehensive medical center? The doctors there are you best bet for receiving help. Give them a call!

I am being treated for all the issues at Duke medical center. I have had carpal tunnel release surgeries. Spinal treatments for the crps medication for the plantar fasciitis and none of it is working at this time . I stay swollen and aching I love alone

Get a complete checkup at Mayo Clinic!!!
Have your primary sign you up, I went and learned so much.
My local doctors were doing so many thing wrong as they did not know how to treat Vasculitis.
Mayo Clinic did; they told me to throw away 26 of my pills and just keep one a steroid and wean off that one.
I was taking insulin and Mayo clinic said doesn't your doctor know if you take too many pills (27) your blood sugar spikes and gives a false reading of diabetics? So threw the insulin away and the dizziness disappeared. Go to Mayo Clinic, they will help you, they helped me. I am in remission now and entering year 11 with Vasculitis.
Good luck. MFB

First, I want to say how sorry I am that you are suffering so! I was diagnosed with Hashimoto’s/Hypothyroidism and take 100 mcg of Synthroid to manage hypothyroidism. I have eliminated from my diet, gluten (white flour), dairy (all) and soy. This was a suggestion from a good book I read, by a doctor who suffers from the same. Her name is Izabella Wentz, PharmD, FASCP. Her book is an eye opener to certain foods that trigger your kind of response. I too was gaining weight and had these what I call “fat patches” depositing in certain areas of my body, like my ankles, legs, upper arms, waist and hip area and it was being deposited quickly! Once I began taking my thyroid medication and eliminating those 3 foods, I started feeling better. I also had a food sensitivity test done and found that I am sensitive to several foods, which I have eliminated and now eat on occasion. You need to get to the Root Cause of your disease and treat it accordingly. I wish you all the best!

I'm really sorry you're suffering so much and you've already got some good advice here. Number one is try to get a visit to the Mayo clinic. They should be able to help you. Number two to deal with the day-to-day. One of the things that has helped me a great deal since I first was diagnosed with degenerative arthritis at age 46 and now at age 71
I also have a diagnosis of primary Sjogren's and I'm always borderline on the labs for the lupus and ra. Although I don't get the diagnosis, both lupus NRA are hovering in the background, lucky me 🙂

One of the things that has helped me is gentle water exercise three times a week, which I actually started at age 46 when I was first diagnosed. I stopped doing the weight machines in the weight room. I stopped doing jogging. I stopped doing weightlifting. I stopped doing throwing the shot and the discus which I had done previously as a middle school coach because they made everything worse.
Gentle water exercise is soothing while you're in it and if you don't overdo, it is good for your heart and lungs and it's good for keeping your muscles, tone and giving you endorphins that help your body deal with the inflammation and pain.
And when you first start, it's helpful not to overdo it when you first start. It's helpful to just get a pool noodle or a floaty device and just sort of Bob around gently moving your arms and legs and then you can work up from there as you wish.
Also, if you have a dry sauna at hand, the heat can be helpful. It induces a full muscle relaxation and some of the tightness can go away.

I also deal with lack of flexibility and it's really frustrating to have to use a grabber to get things off the floor. I have a cane which I should probably use more than I do. I am still in the phase of adjusting to needing it and to me it's still just one more thing I need to carry and juggle. Ha!

Anyway, I wish you the very best of luck. Let us know how things go with you. Let me know if gentle water exercise helps you while you're getting actual help. Some of the coping skills that I have developed involve
--afternoon naps
-- gentle water exercise
-- meditation
-- legal medical cannabis- even in my state which has had no legal cannabis until this year, the hemp derived products that are federally legal have some things that give you some relief
-- stretching, I spend some time everyday doing a little stretching, even if it's only a few minutes that helps things not " freeze in place"

Wishing you the very best of luck!