Desperate for Advice

Hi, @curiousgirl2468. I’m Amy.🙋‍♀️

You are not alone. 💛 Everyone here is going through this process, and it is exhausting!

I am like you, always getting a borderline dx and little help. I’m 61 years old now and finally found a Rheumatologist to dx Mixed Connective Tissue Disease (MCTD). And a neurologist to dx Chronic Inflammatory Demyelinating Polyneuropathy. We are still discussing meds.

I already take Methylprednisolone for NSIP and ILD, Pregablin for Fibromyalgia, Celebrex for Osteoarthritis, and Tramadol for pain. Xeljanz for Inflammatory Arthritis was great until I got infections and my brain MRI uncovered a previous stroke.

In the past I took Pristiq for MDD and Vyvanse for ADHD. My daughter (38) has found that these work for her, too. She takes these and Pregablin, and she was able to advance to six-figure management job. Unfortunately, I am on disability because I didn’t find help soon enough.

I eventually had to hire a concierge PCP ($4500/yr). I take these supplements (my idea): choline, salmon oil, magnesium, zinc, hylauronic acid, vitamins D and B-complex, Bio K, Kefir, joint juice, multi collagen, coconut water for potassium, Electrolit beverage for hydration, zinc, digestive enzymes, gluten-ease, I grind my own wheatgrass, use CBD lotion, Ossoccilium homeopathic, and aromatherapy.

I walk every day. I use a stationary bike, FitCube, one-pound weights for arms, hands, and wrists. I meditate, paint, garden and write.

All of these help, but it’s a massive self-care agenda. You have to prioritize your well-being. If you need financial help go to the Social Services County office in your community.

I wish you all the best and look forward to your updates. Feel free to reach out. 🙋‍♀️

Hi. I can relate to your hand story. Imaging shows “deformity”. And why do they always feel your hands when they can see the problem at this point?! Do you have pseudogout too?

No, thankfully I do not. My RA doctor feels for nodes; which are the bumps on the side of your joints. It's easy to feel the difference between normal and not. I do have Sjorgrens syndrome (can be found in blood tests) and Raynauds. Crazy enough when they saw the Sjogrens in my blood test I was happy to have actual proof that I was going through all of this.

I had breast cancer that spread to my arm lymph nodes; a double mastectomy and am still going strong!!! If you want to chat I'm here! Wishing you the best!

It is amazing how we learn so many medical terms and definitions going through this.

I just found this sight and wanted to cry too, knowing I'm not alone, its priceless. You have so many of the symptoms I've been dealing with for 30+ years. Also they used to call being bendy, double jointed, I have that too.
Skin issues, tired all the time,
I would tell my doctors I don't have oxygen in the back of my legs, and get out of breath going up my basement stairs, or in a hot shower. Sounds dumb to them, but it's how it felt. I've been in relatively good shape all my life, it was weird.

I didn't have chronic sinus infections or high blood pressure, but my doctors put me on medications for both. It never helpped. Somehow crying to my new ob, she started me in what feels like a positive direction. On adhd meds at 58 has helped clear some of the fog. That led to getting my thyroid antigens tested. Not the tsh, t3, and t4, that mean nothing to finding help, or regulating someones thyroid.

I was diagnosed with hypothyroid in my late 20's.
Recently I had a

TPO (thyroid peroxidase) blood test and a

tg thyroid blood test (thyroglobulin).

I have Autoimmune Hashimoto's disease.

A holistic doctor, put me on pure (brand) digestive enzymes, and bioplasma cell salts (i bought hylands 12-1), both inexpensive on Amazon, also natural.

I was taking gentle iron for life long anemia, but my blood tests always showed my iron was low. I don't have digestive enzymes due to my low thyroid.
I can't believe how much better my health is in weeks. My blood test was on Feb 25, 2025. I feel so much better.
He also said to eat for my blood type, it wasn't hard to download the list of what is good for me to eat to reference when I shop. Also told me to scrub my skin 2x daily to get toxins moving and drink lots of water to flush the toxins out. I just do it when I shower. Easy to do.

I'm not 100% yet, but the change in how I feel, with easy natural changes is amazing. I mean life changing! I was also taking my thyroid medication with tap water, I asked for a copy of what is in my city water. High floride among other things can affect absorption of many medications. I use steam distilled now, just for medications. It can mess up ones acid balance drinking water with no vitamins or minerals all day.

I am just starting on this path and found this website looking for what to do for the tinnitus that is screaming in my ear. I can't sleep, and had 2 stapes bone replacements last year in the same ear, my hearing is so much worse, ringing it so incredibly loud. The otolaryngologist says he doesn't know what to do for it. Said nothing really works. That isn't true from things I've read today. AIED is real.

Atleast I found a path to work towards, with the Hashimoto's, and I may have a bigger diagnosis to find out about, that's all ok.

Those 2 tests changed my life.
The first endocrinologist literally blew me off and did nothing. I was so frustrated with her, I'm pulling all my health records I can get my hands on for past years and have appointments with 2 other endocrinologists. I believe the inflamation was causing all my issues. I will take my records and see these other 2 doctors, but after reading for hours on this site, I'm hoping to see a Rheumatologist. Inflamation throws doctors off, I believe at this point. I will find answers by years end!

I hope you don't have to wait until you are my age. Its amazing to have color in my face again.

I hope any of this helps you. I do tend to babble. Feeling more positive than I have in a long time. Good luck.

I'm just starting this healing journey, Happy to know my inflamation is Hashimoto's and not just a blank stare from my internists. Then crying thinking I'm loosing my mind all the way home.

I don't know that my brain fog could keep track of all you are doing. I hope you are feeling good with all the effort you are going through.

Thank you for sharing, you are very appreciated!

I feel for you! Hopefully you can test some things for yourself, maybe log your attempts on paper, or pc. Oddly enough Celiac Disease was actually masking my ADHD for many, many years. I like ADDitude.com for its articles on ADHD and links to other illnesses including autoimmune diseases, anxiety and so on. The website is free, and there are free webinars. Good luck finding more answers!