Our partner

recently diagnosed with CD: feeling hopeless

Conversion Disorder message board, open discussion, and online support group.

recently diagnosed with CD: feeling hopeless

Postby leo0115 » Sat Apr 25, 2015 4:08 am

The morning of May 21st, 2012, I awoke with a REALLY stiff neck and truly unbearable pain. Little did I know that my life had changed, and things would never be the same again. I immediately sought out a chiropractor and had a few adjustments over a couple weeks...didn't help. Then, I got my first MRI (of many) which showed a SLIGHTLY bulged disc of no clinical significance. Nevertheless, physical therapy was prescribed.
Over time, I had been through countless sessions of physical therapy with a total of roughly 8 different therapists over the course of a couple years. Intermittently, when I realized physical therapy wasn't cutting it, I was referred to Pain Management, whereby steroid injections and medial branch blocks at the facet joints in my neck were received...with no relief.
I then turned to acupuncture and hypnosis, both of which were also not helpful. I also suffered from about a dozen migraines per month. During the summer of 2014, SEVERE back pain began to manifest, with no physical trauma or accident. I was unable to move, sit comfortably, lay down comfortably, or stand comfortably. It was the most pain I've ever experienced, and may ever experience again. On occasion, I have needed a wheel chair. My gait was also affected. I also experience strange pseudo-seizures on and off. Over time the pain subsided to a certain degree, but I still live with it daily.
I moved back to my hometown last fall (2014), and foolishly continued to try to find a medical explanation for my symptoms. In winter of 2013, I was misdiagnosed with Cervical Dystonia, and over the course of a year, received 3 botox injections...again, none of which were effective or helpful in any way. When I told myself (and my father who has been supporting me) "enough is enough", I decided it was time to go to the Mayo Clinic. I spent 2 weeks in the neurology department, undergoing every conceivable test, in an attempt to rule out Cervical Dystonia, as well as other extremely rare disorders and syndromes. Every test came back normal. This was when I truly was confronted with the realization that I was dealing with something of the Somatoform realm.
Upon returning from Mayo Clinic with no answers or recommendations, I was baffled and hopeless. Symptoms, along with anxiety and depression, continued to worsen to the point that I wanted to kill myself, but I couldn't bring myself to do it. When my family members (and others who were watching over me) saw the signs of strong suicidal ideation, we all agreed it was the best choice to admit myself into the Menninger Clinic in late January of 2015. Within two weeks, I was officially diagnosed with Conversion Disorder. I was not surprised to hear this one bit, and I fully accepted the diagnosis and strived to treat it as effectively as possible. I stayed at Menninger Clinic for nearly 3 months, doing intensive psychotherapy, medication oversight, and physical therapy as well. My symptoms improved drastically, however, my expectations may have exceeded the reality of how slow and minimal my progress was and has been.
I have not been able to drive for about a year. I still have significantly restricted range of motion from the neck down, and the pain is unbearable. The pain is only manageable when I'm on pain killers. I discharged from Menninger Clinic a week ago, and I am utterly terrified as of how to treat this rare and extremely complicated disorder. I was able to complete my first year of my doctorate in clinical psychology, so I feel like I have a strong sense of insight and intellect.
Doctors, to this day, give me the "deer in the headlights" look, and don't know what to say. When I ask my deepest questions, such as, "I feel like I can't control this internal mechanism that causes my symptoms and pain. How can I learn to control it? How much more therapy and psychological digging do I need to do in order to achieve remission of symptoms? To my knowledge, I have not suffered from a traumatic event in my entire life. What is driving this, and what is my prognosis?" The answer I have received, from some of the brightest therapists I've come to know, has been, "If I were to tell you I had an answer to your questions, I'd be lying to you."
While I admire brutal honesty, it's still incredibly frustrating to hear those words from nationally renowned psychologists/psychiatrists who are working at one of the top psychiatric hospitals in the world. There are days when I feel pretty good, but most days I feel hopeless and incredibly scared...and sad.
I am currently seeing a psychologist, a psychiatrist, a physical therapist, and someone who does tomato-emotional release massage, all of which have been minimally helpful. I also have experience with EMDR. I am now considering TMS (transcranial magnetic stimulation). I've even considered participating in an Ayahuasca Ceremony and consulting shamans. I am DESPERATE.
Is there anybody out there who has some words of wisdom for me? I have never spoken to anybody who also suffers from this disorder. I think it would be helpful to me.
Thank you for reading. There is a lot more to share, but this has been very lengthy, so I will follow-up with any questions anyone has if this is read.
leo0115
Consumer 0
Consumer 0
 
Posts: 2
Joined: Sat Apr 25, 2015 3:21 am
Local time: Tue Oct 20, 2020 2:07 pm
Blog: View Blog (0)


ADVERTISEMENT

Re: recently diagnosed with CD: feeling hopeless

Postby Abeltran » Tue Oct 27, 2015 4:33 am

How are you feeling these days? It's been 10 months since your post. Any good update?
Abeltran
Consumer 0
Consumer 0
 
Posts: 1
Joined: Tue Oct 27, 2015 4:13 am
Local time: Tue Oct 20, 2020 3:07 pm
Blog: View Blog (0)

Re: recently diagnosed with CD: feeling hopeless

Postby leo0115 » Sat Nov 07, 2015 9:41 pm

I have been making some improvements, although I'm nowhere near the place I'd like to be in my recovery. Since my original post earlier this year, I can attribute 2 things that have been a positive influence in my recovery. The first, is a drug called ketamine. It has recently been used for treatment-resistant pain and depression.

I received 3 infusions this summer, and found some relief, but it did not last. I noticed, that during the infusions, I was completely pain-free, and this brought me to tears. I sought out oral ketamine treatment for pain. It has been a transformational change in pain management. I now have a tool to use to not only treat the pain, but ketamine is also unique in that it can repair the damage that has been done to neurons from chronic pain and depression.

I have tested positive with two viruses that are associated with Complex Regional Pain Syndrome (CRPS). My pain doctors are currently helping me take steps to rule in/out the pain syndrome. The second factor which has been a positive influence in my recovery is intensive physical therapy and occupational therapy. Psychotherapy has come to a halt because it surprisingly was not helping at all, and my pain was interfering with psychotherapy, to a certain degree. Hope still remains, and I am determined to keep going.

I will not, however, seek consult of a new doctor. That insanity had to stop. I have come to accept that there may not be an answer, or a name, for what I'm dealing with. Just coming to terms with this reality, in and of itself, has been helpful.
leo0115
Consumer 0
Consumer 0
 
Posts: 2
Joined: Sat Apr 25, 2015 3:21 am
Local time: Tue Oct 20, 2020 2:07 pm
Blog: View Blog (0)


Return to Conversion Disorder Forum




  • Related articles
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users and 1 guest