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Jun 13

I am sad….😔


I hurt in every fibre of my body, from head to toe.
There is no reason for it, other than my disorders.

All my muscles are inflamed, most of my joints hurt, elbows, hips, knees, even my ankles. I’m told they think I also have Fibromyalgia, just another problem to add to my long list.

I’ve been waking up constantly throughout the night, from terrible back pains.

I have had to take morphine twice this morning, and it still only takes the edge off. 

I just want to break down and cry, I desperately need to be held and comforted. I need to be cuddled and cared for, but I’m mostly alone.

I get scared and confused, sometimes I just sit with no television or radio on. The silence helps, no electrical waves or vibrations through the air.

My body spasms hurt, my arms and calf muscles are the worst today. Plus I have white noise in my left ear, the electrical buzzing noise. It drives me mad!

I’m sorry for moaning, but I feel so alone at times. I try to fill my days with reading up on neurological information, to try to understand the reasons behind the why, the what, the wherefore! 

Today I feel blocked, which means I can’t take information in. I cannot do things I need to, just even eating because it takes effort to make and eat food. 

My hands are hurting now, and all I am using is a finger tip to type. It takes time, but I change fingers because yes, even my finger tips hurt. My hands get swollen, it is hard to move my fingers. My hands move more as a whole like a puppet, the shape depends upon if the muscles have pulled my fingers into my palms. My left is pulled in today, my right is more open. They both hurt, I hurt.

I take so many tablets for different things, but I still live in daily constant pain.

My Dystonia and Functional Dystonia is pulling my muscles. My Functional Movement Disorder, is causing my anxiety to increase which doesn’t help my head and therefore my Functional Disorder movements.

I feel I have no where left to go, no one is helping me. I’m just left on tablets, and other medications. I get my Botox Injections every three months, and see my Neurology Consultant now six monthly. They obviously feel they have done all they can, as I see a Neuropsychologist too, which is helping sort my head out I guess, to a degree.

The pain clinic seems to have wrote me off, as after the steroid facet joint injections in my back didn’t work as well as previously. They applied to another hospital the Salford Royal, for me to have help with my pain management. The lady from the hospital that runs it, rang and spoke we me about what it involved. She said after reading my form, she didn’t think I was a suitable candidate. I had to agree, as it was group sessions and the patients were expected to get on the floor. Along with doing other movements,  the lady who ran it didn’t think I would be physically able to do everything the course involved. It’s hard enough for me to get up and down into a chair, never mind the floor!? 

Plus after my last back injections in March, I got an arranged phone appointment with a nurse from the pain clinic, asking how I was and how I felt the injections had gone. I said they only seemed to work 50% in comparison to the previous injections I’d had. I also told her I was getting electric shocks up my back, and did she think these were anything to do with the injections touching my nerves? She said she didn’t know, and that she would arrange for me to have another appointment made to be seen at the pain clinic. Weirdly, I haven’t received another appointment as yet!

I do however have my ongoing appointments, with my Neuro Physiotherapist. He is helping to get my leg muscles working better, by repeating small exercises in the hope that my brain will make new neural pathways by (neroplasticity) from remembering the repetitive movements.

I’m doing best I can, but I have nothing left. I feel empty, apart from the tears.

It has taken all day to write this, from mid morning until evening!


I am sad, I feel so very, very sad. There is nothing left to say.

Dealing with everything makes me tired, and I’m feeling really down and sad at this time in my life, because nothing seems to get better.

7 comments

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  1. Regena J

    I am soo sorry you are going through all these conditions and the pain that comes along with them. I also have Fibromyalgia and Dystonia. I am currently going through Physical Therapy. My Neurologist has suggested CBT. I live in a small town that does not offer such a therapy. What exercises have you learned to do in order to help retrain your brain and regenerate neuropathways?

    1. dystoniasufferer

      Hi Regena,

      I am so sorry to hear, that you have movement disorders too. We know how hard it is to live with them, and that it is trying for us everyday. I hope you are feeling at least a little well today
      Unfortunately, as I can’t move very well I haven’t done so much physiotherapy.
      We started on my leg that has the problems, and trying to move my toes. As my foot did not move at all if I asked it, I had to keep trying to ask it to move.
      Surprisingly, after really thinking of my toes moving, and doing it while sat watching television or eating my meals. One day, my foot did suddenly move, and I can tell you I was delighted!
      So now, I CAN move my toes
      Unfortunately, what then happened. When I moved my toes, this set them off into a spasm stretching the small toe out and my foot turning in a spasm. It really hurts, but I have to keep on trying. Because even though the spasms start, it is showing that I can send a new signal. So if I keep trying, it should, hopefully, eventually send the correct signal just to move my toes and foot. That it will then move properly on its own.
      This is all to do with neuroplasticity, where the brain relearns to send signals for parts of the body to move. Where you constantly ask a part to move, and teach it to move again. Then the brain retires itself, and by neuroplasticity this new wire is the new connection showing that if you keep trying, you can eventually, if lucky, teach your body to move again.
      So I keep trying, and though it’s slow, I will get there and so will you X

  2. Regena. J

    Ty for responding. I hope your day gets better by the hour. Prayers for you. I dont have a problem with any part of my body NOT moving. My problem is retraining my brain to send correct signals to make it stop. And eventually never happen again or as often. I try deterring my mind by doing other activities when my Dystonia starts. I must be distracted.

    1. dystoniasufferer

      Hi,
      So you have problem trying to not spasm and move as much, which can be very hard and I certainly feel for you.
      I don’t know if neuroplasticity works for stopping or slowing down Dystonia, as it is organic.
      I have Dystonia in my eye (Blepharospasm), along with face spasms (Hemifacial). I also have neck spasms (Cervical Dystonia), and I get Botox for all of these. My neck in the start used to turn and pull so bad, it was embarrassing and terribly painful.
      After all these years it has slowed down, and the pulling is a lot less. This could well be the build up of the Botox, and the muscle spasms being restrained and stopped for the few months it works.
      As I also have some functional issues, these are where we try to retrain my brain, to tell it to move my leg in the hope that eventually, by asking, the brain will grow a new neural pathway for the request signal to go forth and back.
      It is as I mentioned, already started slightly in my toes and the foot moves though spasms.
      But it shows that it can be done, new pathways can be grown. Now it is a matter of keeping it up
      It would be very interesting to know if you do get your body to stop, of slow down the movements. This could then show that an organic movement disorder, also grows new pathways. Even by distraction it is telling your brain to ignore the movements, and do not thinking of them as they happen can also possibly train your brain by distraction, to use new pathways. All very interesting, and does at least give us small hope!
      I wish you the very best, and hope you are not in too much pain
      It would be nice to keep in touch, take care and if you wish you can email me at:
      dystoniasufferer@gmail.com
      Xx

  3. lina schneider

    Hello,

    My name is Lina Schneider, I am 31 years old,
    And live with my boyfriend in Belgium, but I am Colombian. I was diagnosed in 2012 with cervical dystonia/spasmodic torticollis. Doctors told me this condition was forever. I know how you feel and what you are going through. I just want to tell you that I am cured now, the last time I can remember having cervical dystonia was in the summer of 2014. It was a long and difficult process but I am so thankful I don’t have it anymore. Please know you can be cured too. Accept what happened and is happening to you, forgive, let the past go, love yourself and others unconditionally and be thankful. Everything happens for a reason. If you want to be in contact and share experiences and thoughts feel free to e-mail me.

    Best regards,

    Lina

    1. dystoniasufferer

      Hi Lina,
      I have botox injections for the dystonia in my neck, eye and face. I am getting on better now, thank you.
      I am very glad you are better as well.
      Take care 🙂

      1. Lina Schneider

        Hi Regina,

        How are you doing?
        What helped me to get better was fasciatherapy, chinese massage, psychotherapy and reiki. Don t let nobody tell you what your body can or can not do. It is your body you know the best for your body. Take control and work on a soul level. I believe we are spiritual beings having a human experience. Your body is giving you signals… listen to it. I know this may sounds crazy but when I started to accept what happened to me and accepting the disorder and working on myself… my neck pain went away and my neck was flexible again… i could move it again. Never lose hope…every day is a new opportunity… to learn… to grow… to heal… to feel good

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