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

Hi @caseygirlx0xmv, I add my welcome. First of all congratulations on being one and half years sober! That is certainly the biggest step forward for your health.

You do have a lot of symptoms and it can be hard to know where to concentrate first. To help you in your investigation, I extended the title of this discussion and added it to the Addiction & Recovery group and the Bones, Joints & Muscles group. I did this so you can connect with a variety of members who may have thoughts of where and how you can start to find answers. I'd like to bring @stsopoci @gman007 @thuts6818 @fourof5zs @lily2013 @basslakeview and @hotfooted into the discussion.

Here are a few discussions that may help you as you search for answers:
- Erythromelalgia https://connect.mayoclinic.org/discussion/erythromelalgia/
- Facial Swelling - no diagnosis after 2 years https://connect.mayoclinic.org/discussion/facial-swelling-no-diagnosis-after-2-years/
- Extreme jaw pain https://connect.mayoclinic.org/discussion/extreme-jaw-pain/

Casey, what type of specialists have you seen? Have you been to a major medical center like a university medical center or Mayo Clinic?

@caseygirlx0xmv Hello Casey and a warm welcome to you! It is wonderful that you joined the group because you will find a great deal of support, encouragement, a lot of resources and a wealth of information via people's experiences and what they share here.

Congratulations on your sobriety! That is huge and I wish you the very best as you go forward using healthy ways to cope with life's trials.

It concerns me that you have had facial swelling and I wonder if you have had any tongue swelling at all? Usually this would be a 911 call if so. Some of your symptoms sound like angioedema to me but I am not a doctor and definitely encourage you to begin with your primary care provider.

Have you been to see a rheumatologist? If not it seems very prudent to be seen by one so I would ask your primary care provider to give you a referral.

I will be upholding you in prayer and to experience God's presence, comfort, and peace for your soul through Christ. This is what works for me as I walk through many fires myself. Many blessings, Sunny flower 🙏💐🤗 @colleenyoung

@caseygirlx0xmv May I add my welcome to Mayo Connect, also. Your journey to sobriety is great, and must be frustrating to see these health issues present themselves. I cannot speak except for me, and suggest what I would do in your case.

Have a complete physical done, including hormone levels checked. As a young woman, and recognizing your addiction started during puberty, there may be some lasting effects from the drug-of-choice, whether it was alcohol or a hard drug of any kind. If you are near a teaching hospital, you may have better luck in finding doctors to address your issues. Let this baseline guide you where to go next, what kind of specialist may need to become involved. It might be a rheumatologist, or endocrinologist, or internist. Be upfront about your past, but don't let anyone put you down for it. Good for you for addressing these concerns!

Let me know what you decide to do, what you find out, please.
Ginger

Hi Casey. Congratulations on your sobriety you have taken the first step towards better health. I too have suffered from multiple symptoms, this is very frustrating and confusing. Especially explaining all the symptoms to doctors who may or may not listen. After years, like 20 for me, I have dedicated myself, to myself. I am a natural giver to all things in life and this can take a toll on our bodies. I have been there for everyone and have tolerated my symptoms. Now, thanks to COVID I took a step back and stopped the madness. I found a wonderful registered nutritionist who has helped me tremendously. I quit the 1-3 glasses of wine a night, the stops at fast food places, eliminated unhealthy eating and have purchased most of my food that is organic and non-gmo. I would hear people talk about all this in the past and I always thought, “what’s the big deal, organic, just wash the fruits and veggies”’, But the only reason why I’m behind really clean eating now is because my list of erratic spontaneous symptoms is becoming shorter and I feel better. You have done really good already and you are still very young to where you can get this under control. Above all, you are determined to find answers. That means a lot. Never give up searching to feel better. If you have any questions regarding my experience I’d be happy to try to help you.

First, Casey, I am very sorry for what you are experiencing! And, CONGRATULATIONS on your sobriety! I hope you have congratulated yourself...attaining and maintaining sobriety is hard work and well worth the efforts! In my experience, you have to advocate for yourself (or get someone who can do this for/with you)! Insist on being treated as a whole person and don't let your doctor stop at one of your symptoms. Sometimes, a myriad of symptoms can be related and often one condition can exacerbate another. Insist on your whole person being treated and don't take "no" for an answer!

@caseygirlx0xmv I'm confident that you are seeking proper medical care. I encourage you to continue to work with your providers and rule out any “organic” source to your symptoms.

I’m wondering if you have considered that your symptoms could be related to P.T.S.D. and sobriety?

Here are a couple of websites that have great information related to P.T.S.D. symptomology and how the body changes after sobriety (a timeline).

-PTSD Alliance http://www.ptsdalliance.org/about-ptsd/

-Timeline: Brain, Body & Emotional Changes During Alcohol Recovery
https://www.amethystrecovery.org/timeline-brain-body-emotional-changes-during-alcohol-recovery/
There is an enormous amount of literature on the internet. You may consider, after doing some research for yourself, contacting a therapist. I would suggest a therapist experienced in both L.A.D.C (alcohol and drug) and trauma. Your therapist should be able to work alongside your providers. You may also consider attending groups such as, A.A. (alcoholics anonymous) or N.A. (narcotics anonymous). Providers and therapists are professional helpers but a group of peers that have “been-there-done-that”, can be a wealth of knowledge.

I know I threw a lot at you. Recovery is a process and abstinence is only the first step in a long journey.

I'm wondering if you would consider going to a therapist?

@caseygirlx0xmv, I am so sorry to hear about your abuse. I too lived it. IAt the advice of a therapist I saw MANY years later, she suggested I attend a domestic violence support group. I did for 4.5 years and it was one of the best things I've ever done!
I think there are probably groups going on bc it is essential.
I hope that you will consider this. It was so hard to walk in the door for the first time but I learned so much and experienced so much healing.
The info for where you live should be available online.
I wish you all the best!! I hope you have a blessed day. Know that I will be praying for you, Sunnyflower. 🙏😊🌹

Well said! Sunnyflower

ADDENDUM : one of the takeaways that I learned at my group was that when an abuser is abusing, their Vital Signs remain normal. It's been years and I can't stop thinking about that. I suppose this was referring to a psychopath abuser. Just an FYI. @caseygirlx0xmv @erikas

@caseygirlx0xmv What caught my attention in your story is that you had an injury with an impact to your face. That can be the source of the redness and heat. I have a similar situation with my ankle turning colors and throwing heat because of a bad fracture and surgeries for that 5 months ago. I am still rehabbing and getting improvement.

The other reason you story resonated is because I am a spine surgery patient after having had a whiplash injury twenty years earlier that lead to a spine problem. Hitting your face on a wall will send an impact into your spinal column and could stress or change the way your skull sits at the top of the spine, and muscle spasms can keep it locked in a bad position. Has a specialist looked for a spine or spine skull alignment issue for you?

I would seek out a spine specialist with skull base expertise for an evaluation or one who works on areas above C3. There are some spine issues that can change blood flow to the brain, such as bow hunter's syndrome where the arteries that run along the spine get stretched because of misalignment and twisting of the upper cervical spine. This is a more difficult issue that needs real expertise above and beyond the more common spine procedures. There are also physical therapists who do cranial work. The skull has joints that can get stuck, and generally with misalignment, it can can tightness in areas where blood vessels pass. My recommendation would be to come to Mayo if you can because many spine surgeons out there will not work on the upper cervical vertebrae because of the risks involved. Mayo has many more neurologic and orthopedic surgeons with specific subspecialty expertise that you don't usually find elsewhere except in other facilities that hold themselves to these high standards of care. That is why you need the cream of the crop for a surgeon. You'll need an expert to order the imaging and understand the results.

I did have lots of issues with my jaw being too tight on one side, and in addition to my spine issues, I also have thoracic outlet syndrome that causes my neck and shoulder muscle to be too tight that has at times locked my neck and kept me from being able to turn my head. TOS restricts blood flow to the head and it gets worse when you turn your head. You could have that too. Some patients can pass out from TOS. Injuries can cause problems that need rehabbing, and mis-alignments cause restrictions, headaches and pain. I had spine surgery 4 years ago to fuse C5C6 and free my compressed spinal cord. I've been in physical therapy for the TOS and jaw tightness which has helped a lot. I think you are still suffering from the effects of the injury. It's possible that rehab now could be your answer without any surgery. Some of the restrictions can connect and pull on the dura which is the covering of the spinal cord and brain which causes pain and headaches. You should get an evaluation because in time, spine problems and bone remodeling can develop if there are uneven pressures on the endplates of each vertebrae (the surfaces that abut the discs). In other words, rehab now, may be able to prevent a bigger problem later that could lead to a future surgery. If your doctors are not considering a physical problem from an injury to the spine, move on and find another opinion. Let me know if I can answer any related questions.