Working Together With The Patient

It is great to read an article, where they talk about “working together with the patient”. 

Patients do have a voice, and they do Google their problems. So even if they may have picked up and stayed with the wrong medical diagnosis, it is better to be able to talk it through with the doctor and why they think this. Then go from there, and try to look at the symptoms the patients has, on a symptom by symptom view. 

Giving a person one diagnosis name to cover everything (even if it is right), the patients need to know that their doctors recognise that the disorder, does have individual symptoms and therefore problems. Then look at the individual problems, on their own basis.

This gives the patient a feeling of security, that they are being looked after and “treated” for all their problems. 
This article below shows the big step forward, of Doctor and patient collaboration. 
Working to the same goal, of making the patient live an easier and hopefully pain free life.

Collaborating with Patients in the Digital Information Age

February 19, 2014 By Tali Shenfield, PhD

Let’s hope this is the way forward, a future of doctors working with their patients. Not just telling the patient they have some disorder, but helping them work to understand their individual symptoms.

With the medical profession constantly advancing, I think we will be in safe hands. Psychologists have a big part to play in some patients recoveries. They work with your doctors who do the diagnosing, then the psychologist helps by letting you talk. 

Tell the Psychologist what problems you have, if you know, tell how they started. If not just talk, and along the way with the Psychologists help, you will hopefully get to an understanding of what your body is doing and why. 

Talking therapy has been looked down on in the UK, for many years. We always thought it was other countries that used them, that needed them. How wrong we are, you see, by talking you get out all your upset, your feelings. They tumble out, sometimes uncontrollably, and in there you will find you have lots you want to say but never knew. 

Talking therapy gives the release that so many people need, even if it is only that one session that is needed. That one session could be what turns your life on an axis, to the new point you want to start from.

Going to see the Psychologist, they talk to you, understand you, and work with you. They can help you get where you need to be, want to be, back to who you used to be. 

Or maybe even better!

 A you that has moved on, and wants for more!

A you that aims for more, and  becomes more!

A you that is happier, and has more understanding!

A you that even if there is still some debilitating situation, you can deal with it!

Stay happy folks, and thanks for reading 😊 X 

Insufficient Good Bacteria In The Gut A Reason For MS?

I think we may all have heard, that the gut (Human gastrointestinal tract) can definitely have an affect on people in many different ways.

This research link below however, says they believe it could be the reason for some people getting Multiple Sclerosis. I have not heard of this before, so it is of great interest. That an insufficient amount of good bacteria, could have a direct link to MS!

Multiple sclerosis (MS) is a condition of the central nervous system.

In MS, the coating around nerve fibres (called myelin) is damaged, causing a range of symptoms. 

More than 100,000 people in the UK have MS. Symptoms usually start in your 20s and 30s and it affects almost three times as many women as men.

What is MS? –

As you know I suffer from Dystonia, Functional Movement Disorder, PTSD, NEAD, Chronic Fatigue Syndrome, Sleep Disorder, Chronic Pain Syndrome, and Functional Bowel Disease. It is also thought that I now have Fibromyalgia, and it is possible Hemiplegic Headaches. On top of which I have other problems, such as brain fog and loss of memory. I also suffer a lot of back problems, and am myself disabled. I know it’s quite a list, but at least my diagnosis’ are separated, and not just put under my Functional Disorder diagnosis. Which means that they get looked at separately, and I get the correct medication needed for each one.

As Functional Movement Disorder has many overlapping symptoms, from many other Movement Disorders. This sort of informational research, is of interest as it may point to reasons behind our questions for our disorders.

Finding answers to our questions can mean so much, as we are left without answers from both Doctors and Consultants so many times.

It is the reason I find myself looking for answers for my questions, sometimes it is the only way to make sense of why these disorders choose certain types of people. There are also thoughts that low immune systems have a lot of connections to the gut, again another answer ticked off!

It seems the body’s gut has a lot to answer for!

Thanks as always for reading, and take care of yourself and your loved ones 😊 X.

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.

Harbinder Sandhu Q & A’s from The Dystonia Society on Vimeo

Dystonia sufferers may find this question and answer session with Dr Harbinder Sandhu,done for The Dystonia Society very interesting. 🙂
Harbinder Sandhu Q & A’s from The Dystonia Society on Vimeo

So that you can find individual questions easily, the timings for each question are included below:

2:00 – Can you tell us a little bit about your research project and what helped inform it?

12:46 – What types of dystonia did participants in your study have?

13:27 – Is there any relationship between the type of dystonia an individual has and the non-motor symptoms they might experience?

14:27 – What difference do you think your research will make to people with dystonia?

15:25 – How effective do you feel Mindfulness is?

16:24 – Do you think Mindfulness is here to stay or is it just a current trend?

20:03 – I feel alone and isolated because my dystonia makes it hard to leave the house. Is this normal?

22.11 – I have Cervical Dystonia and I swim twice a week. I feel better in spirit and health after swimming, but my neck feels worse the next day. I have taken 2 weeks off from swimming but the neck is worse. Should I just press on and swim for the sake of my sanity?

24:06 – How necessary is an understanding of dystonia when offering support with non-motor symptoms? (ie for physio, CBT, pain management etc.)

25:11 – Since developing dystonia I noticed that I have also started to feel anxious and depressed and I find it hard to talk to my family about it. Do other people with dystonia feel like this?

28:13 – What are the next steps with your research project?
I hope this has been helpful 🙂

Aww I Hurt! 

Image from Google pictures.

I’ve been busy all week, trying to write about my weekend away in London over the Bank Holiday weekend at the end of May.

I will get it finished eventually, or maybe break it down into parts to get it posted. As it is all about mobility issues I had, that even though everything was arranged for accessible, nobody seemed to care. Well most! 

But at the moment this morning I’m in so much pain! 

I had massive abdomen spasms last night, ones where it pulls the whole body up and holds it there until the muscles relax again. Then it happens over and over! If I could do these myself, my body would look great! 

Only I have no control over my body spasms, they are involuntary just the same as Dystonia. Though because I am diagnosed with Functional Movement Disorder, they tell me it is Functional Dystonia. 

I also have eye spasms (Blepharospasm), and Hemifacial Spasms. Plus I have Cervical Dystonia, all of which I have Botox injections for. I have had spasms in my left side back muscle, shoulder, arm and hand. These spasms started before any others, so how come they are not classed as Dystonia? Or my leg spasms, where you can even see the muscles moving as they spasm? 

Anyway, they say mostly Functional Dystonia. I get to a point I don’t care what they want to call it all, I just want looking after properly! 

My insides hurt so much today, my abdomen doesn’t get much of a work out anymore due to my disabilities. So last nights Involuntary Abdomen Spasms have left their memory, leaving me feeling in more pain than usual.

The International Symbol Of Access, Image from Wikipedia.

It may sound weird, but as a Chronic Pain Sufferer, you actually get used to your pains and find ways to deal with them. But the unexpected pains, additional pains, they are ones we are not used to so they hurt more.

Well, it’s going to be another hot sunny day here. I hope you all have nice weather where you are too.

As always, thanks for reading and take care X 

Botox Injections 

I had my Botox Injections last Tuesday, and they couldn’t have come soon enough!

I was in so much pain with my eye, neck and head that I was having trouble sleeping.

I thought you might like to see the injection points that I have, so here are some pictures to demonstrate.

I have the injections shown at, A, B, C, D and H. These are for my eye, which closes slowly over time and blinks. My eye looks really sunken and dark at the moment, and keeps weeping which makes it very sore along with the pain it already gives me.


I also have an injection in my left cheek, similar area as shown in the above photograph.


Then I have an injection in the Splenius Capitus muscle, and I get the full 100 units. This is for my Cervical Dystonia, which makes my neck spasm and move making it very painful. I regularly have to hold my neck with my hand, and wear a scarf to help pull my neck up into place when needed as well.

I have to use a neck cushion while sitting on the sofa, as I cannot hold my head up all the time. I also have to use a neck cushion to go to sleep, I have needed to do this since March 2012 when my neck got really bad!

All these injections, are given every three months. They are a life saver, they make such a difference to my daily life.

Pas always, thanks for reading and I hope some of the information was valuable to you 😊



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