Functional Neurological disorder next steps

@rattlesnake, and all...I'm so sorry you're having these horrid and debilitating movements and pain. I'm thinking you may have a movement disorder such as Dystonia or some such related rare disorder. Do you have a walking or balance issue? Any back muscle tightness or spams or is it mostly in your cervical, neck, head, or shoulder area?

My son developed Cervical Dystonia at age 35 after active sports, workouts, a running life, and very active work, travel, and social life. He was hit with extreme pain, many of the symptoms, and more that you listed.

If you haven't been tested for Cervical Dystonia or Stiff Person. Although, you don't mention walking or your legs... There are treatments now that may help if you have Dystonia or some like diagnosis.

I'm reaching but you are much like him in the head and upper areas...You have been on a long, difficult journey
with some progress. I commend you on your determination and proactive attitude. It takes many of us a long time to get to that point where we insist on getting legitimate help and answers.

Blessings as you walk this road to better days...elizabeth

Thanks.
Went down Dystonia path, I don't have that I believe. Or at least I had 2 Dr's say no, after another that said I did.
I have no walking or balance issues.

I had severe neck tension mainly left side. Back some but not bad. I lift weights and had to stop some things that aggravated it. Botox was no help but I learned some useful things from specific physical therapies. Massage good for short term. Tension was there non stop until I started Dulux... stress has a major impact on head/neck/shoulder/back muscles.

I'm fairly confident I have a mix of neuro and mental issues that are intertwined. Getting mind under control or at least improved had large impact on my physical symptoms. Hard as the symptoms cause depression and more problems.

I found this digging around. Seems to confirm much of what I have learned and experienced up to this point

@rattlesnake, you've summed up Dr. Sletten's video very well and very concisely. Dr. Sletten leads the Pain Rehabilitation Center at Mayo Clinic in Florida. Follow posts by @rwinney to learn more. For example see her post here: https://connect.mayoclinic.org/comment/992062/

My goodness @rattlesnake, does your long "laundry list" look ever so familiar to my once long laundry list when I was 46. Absolutely stinks, doesn't it?! Not only does it occupy our minds, but can consume our lives and those around us. I'm sorry life had this twist for you. One thing is certain though, there are ways to
make improvements to your quality of life, as learned by watching Dr. Sletten's video. I'm so happy that you found the video. When I found it, it was an instant lightbulb moment...the tears flowed and I finally, for once, felt validated, like I wasn't going crazy or turning into some hypochondriac. Mayo's pain rehab program changed my life. It did not eliminate chronic symptoms, but it has helped reduce them and taught me how to make sense of the cards I am dealt while learning new ways to navigate chronic conditions. Hope is something very important to maintain. Have you given thought to attending Mayo's PRC or a program similar?

Hi Rachel,

Yes the video was a light bulb moment for me as well, with both positive and negative emotions. I am a highly analytical person and the video provides the technical aspects in addition to examples that help paint the big picture.

But being an OCD analytical engineer type person make things difficult as I have to focus and understand all aspects of my problems, symptoms. Now I can start to ignore and focus on areas I can control. I no longer feel I need to continue to search for answers to symptoms.

The many providers I interacted with gave similar feedback for 'treatment', but not in one cohesive message or at a single time. At first I was skeptical of any help from counseling. What I learned was use of some common sense type thinking. How can I make my life happier or how can I not make my life more miserable. (stress, metal, body). I think I have most of the pieces in place I need, with some work to go on some more than others.

The idea that my problems were not physically diagnosable was hard to swallow. In my head, really? The life changing relief of Dulux was proof though. Yes I'm clinically crazy, but still alive. Since meds I have worked on other sources of stress which has continued to made a positive difference.

The misery I have endured has changed me as a persons, for better in my view. I have become much more compassionate about other people and their challenges. I though I was stronger and somehow better than those who needed manage anxiety, mental or other weaknesses. Now I am a better husband and father.

You are not alone.
It’s a long road with FND.
Have you tried Gabapentin in addition to Cymbalta? Nurtec? Vitamins B12, Magnesium, Iron? Daily yoga? Mindfulness? These are things that have helped me but do not eliminate it.
Good luck,
Kat

@rattlesnake Your response is so uplifting and inspiring to me this morning because I understand your desire to want definitive answers. It's difficult to rewire the brain in to not being as perfectionist, controlling or analytical, and believing in a diagnosis that can't be proven on paper. Thankfully, Dr. Sletten brought validation to you and what you experience with FND.

I share your mindset and understand. I continue to work at reshaping thoughts by replacing negative with positive and letting go of things I can't change or control, but it has gotten easier with practice, and by allowing grace, I have learned more patience and better how to embrace the stability of plateaus. Flexibility has been my friend.

You, sir, have a lot to be proud of! By putting in the work to learn and apply is commendable. Dr. Sletten tells his classes that we are all "type A perfectionistic control freaks", and that's what brings us to rehab - he's not wrong. Those with desire to fix, learn or understand fit the mold, however, they also have to reign in to find balance and harmony in C-life.

I commend you for working with a counselor and not giving up or giving in. Also, recognizing your growth and evolution in becoming a better husband and father. Might there be any opportunity for you to attend Mayo's Pain Rehab Center's 3 week program in Florida? I believe you would find it absolutely amazing and do quite well. If not, you're more than on the right path in my book.

Hi Kat,
Have not tried Gabapentin. Nurtec and the other flavors/delivery did nothing for me, no headache meds were of any help. I have yearly bloodwork and not deficient, but I have started vit B and D per doc's recommendation.

Haven't tried yoga. I lift at the gym 3 days a week for almost 5 years now. I forced myself to be consistent even through the worst of times. Not sure why.

Mindfulness did help. When I was told that was basically only solution, I wasn't accepting, but ready to TRY ANYTHING to escape the misery. I learned through counseling some things that seem like common sense afterwards. Life is better when not focusing on negativity. I learned I was very judgmental of others especially myself. I accepted I can't control other peoples emotions. The reduced stress from these and others made a noticeable difference in psychical symptoms. I continue to work on other stresses like staying married.

Has anyone been diagnosed with this?