Tired of the gaslighting

I have had autoimmune for 30 years and thought I was an outlier since I still can do most things. Besides the basic Plaquenil, Methotrexate (not on it anymore as dose got really low), and Pantoprozole, I've always paid attention to the integrative things I can do to resolve pain. PT stretches are incredible for generalized pain, as is walking. I also do edema massage (fingers to torso; toes to torso), cold pack/microwaveable warm packs. lidocaine patches and KT patches. For the fibro piece, a 20 minute walk works. I stick to non-processed foods for the most part, hydrate and keep moving. Simply cannot stay in bed. Topical analgesics work: I liked ibuprofen creams before they went off market, but a good quality CBD cream at the "hot" spots is helpful. I have been to the pain doctors for shots, but the deal is to keep up the PT stretches--go to someone who is a sole proprietor with osteopathic experience. Massages work, too. It is trial and error to find your way.

Amen, and you are not alone.

I've had Covid twice--both times before the new vaccine came out. It very much mimics my autoimmune disease. For eyes, I go to an ophthalmologist, and they test pressure, visual field and color contrast and check the retinas. You might do that. I use Systane and Pataday for my eyes, which are very dry. My mouth is dry too so I use Oral B dry mouth wash so I protect my teeth and gums. It is Sjogrens overlap. An ENT might be best for checking your ear health, as well. I get occasional vertigo and Dramamine and the Eppley Maneuver or Foster Somersault help. Tinnitis affects alot of people; I deal with my TMJ and it seems to relieve it. Best of luck. An ENT might be best for checking your ear health, as well. https://www.scientificamerican.com/article/covid-can-cause-strange-eye-and-ear-symptoms/

Thanks for your comments.
I am on my 7th ENT. He is suggesting balloon inflation of Eustachian tubes. I will try it as it seems low risk with a fairly high success rate.

I also use Systane and Pataday for my eyes. I have seen Optometrist, Ophthalmologist and Retinologist about my eyes. They don’t find anything amiss, but my eyes seem foggy and dry all the time.
I use some overnight lozenges for my dry mouth, and I use Xlear spray for dry nasal passages. I have been tested three times for Sjogrens, and it is always negative.

I went to PT for eight weeks for Vestibular therapy, and it made no difference. I was fitted with a TMJ mouthpiece. It made no difference.
As you can tell it is not for lack of trying that I have had no answers or improvement.
I keep hoping at some point we’ll hit on something to give relief.

@krisjb1 Your pain sounds awful and so does your frustration with the doctors you’ve seen. Have you been to a pain management clinic? Check with the hospitals in your area to find out if they have one.
Can you think of one thing that would get you to try the medication? What is it?

@janetsmith Welcome to Mayo Clinic Connect! I’m glad you found this autoimmune support
Group. I’m sure you’ll find lots of support here!
Can I ask how you found Connect?

I have MCTD, an overlap disease. I end up chasing the symptoms rather than the diagnosis.

I use the Systane ointment at night and a eyemask at night helps a lot. I have a cpap machine and so the eye mask doesn't really help. Xiidra was prescribed, but it really stings, so I use it at night along with another drop of Systane. Husband has Refresh. Foggy and dry eyes are also affected by general hydration--still lots of days my mind tells me I am sleepy due to the blurr.

The Oral B Dry Mouth is good for about 3-4 hours. But, I have the gum and hard candies in my purse. I brush 2X day with electric toothbrush: my teeth were cracking and gums were acting up until I started doing this.

TMJ stretches: https://www.youtube.com/watch?v=Vrz25x3qnTY Cool Pack or heat helps and I massage the cheeks to keep the salivary glands/eustachian tubes clear--lemon drops help keep them all functioning. If you are ever in severe pain, get to the PCP as infections are a horrid experience. Take care.

Medication is not being offered at the pain management office although I have previously used oxycodone to no avail. Epidural type injection in my neck with fluroscopy guidance and injected dye is suggested. I am not presently interested- not only because of the risk involved but also because there is no guarantee of pain relief for my headaches or for the annoying shoulder tingling caused by the compressed nerves. It would probably make my neck feel better, I'd guess. I deal with the neck pain with heated neck wraps and some traction which is helpful.

Thanks again for suggestions.
I use Xylimelts dry mouth stick on melts for night-time dryness. They get me through the night. If you have not tried already, you might find them more lasting.

Yes, oral hygiene is so important when dealing with this dryness.
Good luck to you❤️

@cwitton1 @dlydailyhope @larak @jkm54 @pfbacon. @gigi4 and everyone on this discussion: You all might like this upcoming discussion on medical gaslighting! It’s by the Autoimmune Assoc. You will need to join the Assoc to get access to the questions and answers.

It’s a great opportunity!
What questions on gaslighting would you like to ask or hear answered?