In recovery. Too many symptoms. Autoimmune disorder? HELP!

Posted by Casey @caseygirlx0xmv, Oct 7, 2020

Since my sobriety of alcohol a year and a half ago after 10 years of abuse, I’ve been on a path to finding answers about my constant issues. Facial & neck swelling, gradually worsening over months- (esp when trying to exercise, seems impossible) painful , feels like I cant open mouth -my face will turn bright red & feel hot to touch(like flare ups)-w/ no temp.
Constant jaw pain (my face smashed into a rock wall 10 years ago, been to specialist who assumed TMJ)- the pain&cracking started instantly after incident&still have 10 years later. seems like it stopped cracking as easily exactly when my face started swelling 6+ months ago).
Constant hot flashes with minimal activity. Always feel like under skin is on fire (cant stand sitting in direct sunlight-dizzy&nauseous). Then sometimes I will get cold flashes where I feel freezing. Never inbetween.
And last but not least-Headaches& neck pain- comes in waves, but will last entire day. Feels like pinching.

Its always “too many symptoms at once” to bring to doctors. They will always only ever answer one of the symptoms, leaving out the rest. They do one test and when its negative thats it. No follow ups, no help. If anyone can relate to my experience with advice I would greatly appreciate the help. I am 25 years old, living clean and sober and ready to FEEL sober- I am sick of feeling sick!
Thank you so much in advance ♡

Liked by sunnyflower

@migizii

@migizii in response to Jennifer Hunter: although I don’t write often, I deeply appreciate your insights and this recent post with the website to explore I believe gave me an “aha” moment after reading one of the articles! I am going to share it with my PT. It is about clenching your body when trying to do exercise, etc…..thank you❤️

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@migizii Thank you for your kind words. I'm glad the information helps. I have to remember to stop bracing too. I do that subconsciously in protection of an injury or something that happened awhile ago. I catch myself doing it at physical therapy and have to tell myself to let go and that I am recovering and things are getting better. It might help emotionally to embrace whatever causes the need to feel like you need to protect yourself. We do tend to store the stress of events and trauma in our bodies unknowingly. Sometimes patients who are doing myofascial release with a therapist will have emotional outbursts or sobbing as the muscle memory is released. Those words of wisdom are from my physical therapist.

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I went to a maxillofacial dentist for my issues, which turned out to be TMJ. However, good images may help to determine issue. I go to a manual PT who can do adjustments. I also have a mouthpiece to keep jaw aligned at night. Sounds alot like fibromyalgia, which is a subjective diagnosis. Non-processed diet, less sugar, wheat, potato, tomato, dairy might be helpful to try. Proper stretches will help keep muscles and tendons loose and lubricated. Water exercise is great, too. I really do not think you caused this affliction. As far as supplements, I like magnesium caltrate and B-12. ice/heat, epsom salt baths, KT tape, cat/cow/child/cobra yoga is helpful before bed. (I have MCTD) https://health.clevelandclinic.org/stubborn-tmj-pain-try-trigger-point-massage-and-jaw-exercises/

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Hello @caseygirlx0xmv

You posted a while back about a lot of jaw and facial pain with some swelling. Have you found any help with that?

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Casey, I am glad you wrote. I, also, have too many symptoms to take to a Dr. But I finally started to look with the assumption that I had some systemic issue, and I found many possibilities. I had to go finally to several sources, including Mayo, AmbryGen.com (be sure to get the neuropathy section.. It's free), OMIM.org, and Sequencing.com. Finally, I learned I had GSN, or Gelsolin, the autosomally "Dominant" systemic type. Anyway, you may not have GSN, but it sure sounds like it. GSN attacks the net that holds any body cells together, and lets other ordinary genes attack those cells. But that creates trouble everywhere from your scalp to your toes. Perhaps cardiovascular is the most dangerous. Check the aVL section of your 12-lead ECG, and see if it matches your lVL section. If not, or you have a long QT segment diagnosis, these are quick clues. (says Mayo) Let us know.

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keep trying different things – Pineapple slices in Pinapple juice – natural anti-inflammatory food – (not juice) start your day with a few slices

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