Hannah describes how she developed spasms in her neck and shoulder leading to a diagnosis of functional dystonia. She describes her battle with health anxiety and eventual improvement once she gained control of the situation. Hannah wrote to me 6 years later with a message of hope reflecting on what happened and to let me know that she had made a sustained recovery.
With the support of my doctor I have been helped me through my journey with Functional Dystonia.
This a very real condition which needs better understanding. You have a condition, you are not making it up, you are getting very real symptoms and no you cant control it. https://www.neurosymptoms.org/#/in-the-mind/4533053408
My symptoms followed a stressful period in my life this condition can be so disabling, so lonely and frightening. You are not alone though.
My first port of call is Family. I found this part of the journey difficult. Family did not seem to understand. The word ‘understand’ is so huge in this instance. If your family don’t get it, then who will. With the guidance from my doctor, his clear explanation along with his desire as a Neurologist to educate people in Functional symptoms knowing they are real not made up helped. He started the healing process.
The major hurdle for sufferers is lack of understanding. What is this? Why is this happening? Whyme?
This is where to turn first.
This is the least destructive for a sufferer if they go looking for answers via internet. https://www.neurosymptoms.org/#/understanding-it/4533198106
Each individual will have their own story to tell. In my case the symptoms started following stress, it could be one stressful event or a build up. Some may be completely unaware of stress, but maybe subconsciously its there.
I blamed medication for my symptoms, I had previously been on Fluoxetine, I researched the negative effects of this. I thought this was the cause of my symptoms. This was not the cause.
I now understand the brain reacts to stress in many different ways. The way I can describe how I felt was that of shock, my body felt as though it was in shock, needing to rest, no energy, no appetite, feeling alone, lost. I had these symptoms they were real, I kept telling myself I am going to get worse. I felt out of control. Not just mentally but physically too. My body just didn’t want to work. I developed twitching in my left side of my neck and shoulder, followed by tension, this tension continued down my back which pulled me into abnormal postures. I was diagnosed with having Functional Dystonia. I could not relax the muscles no matter how hard I tried, the more I tried the more attention I put on this and the more twitches happened. I eventually just went with it allowing this muscle less attention and focused more on not being frightened of
The time I first noticed symptoms was around the time of a stressful time for me. The
small symptoms were that of anxiety. I started to research my symptoms. I ended up self diagnosing myself with something I just didn’t want. (Dystonia)
The symptoms increased and the health checks began. The more I checked the more the symptoms became worse, the more the symptoms got worse the more I would check. I had no one else to blame but myself. Call it a worrying disposition or a feeling of loss of control. I would look for answers and reassurance, the reassurance I did get would give me the relief I needed. Only for a short time then something else would crop up, again needing more reassurance. Instead I worked out if I ask for reassurance this will make it worse but if I let that need go, ignore it this feeling allowed me to stay in control. This was the control I needed not the reassurance. I soon learned the checks were making my symptoms worse. I stopped all this, this stopped fuelling it. https://www.neurosymptoms.org/#/health-anxiety/4533283478
I never did go into much depth about this to friends during the time it was all going on as I know there is a lack of understanding but now I am better I can and I understand. I told friends during the time that I had anxiety. This felt easier for me to say as I know this is probably better understood and can mirror so many things. This took the presure off.
Exercise and getting moving again was another thing that worked for me although tough struggling with crippling panics at the beginning with my symptoms, I pushed through, I just got out there and did it. I was doing this determined not to let it beat me. I was ok before, I would be ok again attitude. Each time got easier and I got stronger.
I decided I needed some assistance with medication. This time I tried Citalopram. I was still very concerned about taking this, I am so glad now I did. This has given my body time out to recover. Solely it would still have helped, however with this along with talking therapy and exercise collectively has given me the maximum chance of improving.
There is nothing to be scared of, this statement was key for me. Once I lost the fear that was the start of my road to recovery. I stopped bothering about what others thought. I always look at it like this, you would never say to someone with M.S or Parkinson ‘pull it together’ or ‘its all in your head’. Functional Disorders are just as real in fact many people with M.S and Parkinson can feel worse as they have Functional Disorders as well as an Organic Disease. Functional disorders come from something that has gone wrong in the brain and not organic-meaning you can improve and get better. I did through, understanding, being kind to myself, allowing myself that time to heal, recognising what I had been through, running, yoga, swimming, enjoying my life.
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