Symptoms of conversion

Hi

I had been diagnosed with conversion disorder last August after being admitted to hospital with a paralysed left leg. Several tests were carried out including 2 MRI and a CSF test. If my memory serves me the protein level in CSF was 900 and it did raise some concerns. This episode lasted 3 weeks and resolved spontaneously. I had other episodes in November and January where my left had was also involved. In April I was re-admitted to hospital since I could not open my mouth and this lasted a week. In the meantime I was taking medication and seeing a psychotherapist. The attacks where becoming more frequent but lasting 1-2 hours. In JUne I took a two week break off work, stopped treatment and made some important personal decisions. Conversion seemed to have disappeared completely. UNtil now. For the last 3 weeks I have been suffering from back pains, weakness in both legs that has increased with time and urinary problems (I have frequent bladder pains when I don't need to urinate or have just a normal amount of urine)

I really need some answers. SPecialists here are pointing to the conversion direction but without any conviction. I have seen an orthopaedist and have been assured that I have no back injuries or deformities. I just am puzzled that conversion can change its symptoms and attack individual organs as well.

Any advice would be highly appreciated

Peter Grech
Malta

One or more symptoms or deficits affecting voluntary motor or sensory function that suggest a neurological or other general medical condition.

Psychological factors are judged to be associated with the symptom or deficit because the initiation or exacerbation of the symptom or deficit is preceded by conflicts or other stressors.

The symptom or deficit is not intentionally produced or feigned (as in Factitious Disorder or Malingering).

The symptom or deficit cannot, after appropriate investigation, be fully explained by a general medical condition, or by the direct effects of a substance, or as a culturally sanctioned behavior or experience.

The symptom or deficit causes clinically significant distress or impairment in social, occupational, or other important areas of functioning or warrants medical evaluation.

The symptom or deficit is not limited to pain or sexual dysfunction, does not occur exclusively during the course of Somatization Disorder, and is not better accounted for by another mental disorder.

Have you seen a doctor for this?

Well yes..I was hospitalised for 4 days two weeks ago where I underwent my 5th MRI in a year and a half and a brain scan. Again the docs are sure that it is conversion BUT are contradicting themselves. Before this episode I was under the impression that CD was triggered by stress and so I was involuntarily paralysing myself. Now they tell me that its not my fault, that I have no control over it and that CD is due to a chemical imbalance. Have you ever heard this kind of diagnosis before?

With regards to treatment what did they suggest that you do? I have been put on three different types of smarties i.e. pills to "re-establish" the chemical imbalance and visit a psychotherapist. I have been unable to move from the hips downwards (excluding my genitals) for 6 weeks now and frustration and helplessness is rising. I am very hard headed and will keep on trying to find the truths hiding behind my illness. The psychotherapist is heavily perplexed and today has basically told me that the chemical imbalance issue is not in his jurisdiction and that there is little he can do now!

Keep in touch sadgurl, I am sure I can find a way to make you smile

HI
MY NAME IS FREDA

AND I HAVE BEEN SICK WITH CONVERSION DISORDER FOR ABOUT 10 YEAR'S NOW IAM A MOTHER OF FIVE BOY'S AND CAN UNDERSTAND WHAT YOU ARE GOING THREW BECAUSE IAM STILL HOPEING THAT THERE IS SOMETHING ELES WRONG WITH ME THAT ONE DAY IAM GOING TO GO TO A DOCTOR AND THEY ARE GOING TO FIND SOMETHING ELES WRONG THAT THEY CAN FIX I JUST WANT YOU TO KNOW THAT YOU ARE NOT ALONE

Hi, I was diagnosed with conversion disorder in October of 2004. I have difficulties swallowing amoung other issues. I have noticed that psychogenic seizrues are a comon symptom. I have those too. I also have difficulty walking which requires use of a wheel chair for long distances and a mtal frame walker for short distances. I also have difficulties swallowing, as I said above. I am not able to swallow enough food to get adequate calories, so I have a feeding tube, (PEG tube) I am curious as to whether there are other people with similar issues swallowing, or anyone else with a feeding tube for the same reason I have one? Thanks. Kerri

Hi Kerri!

It's me Becky!!!!!! Funny we should both be on this forum too.

Love,

Becky
xxxxxx

Hi Becky! Nice to see you here! I try to go to as many possible places where I might meet people with CD as I can. I think it is important that we talk to each other so we all feel less alone. BTW for those that are interested, my symptoms have gotten worse over the last few months. I am now unable to swallow anything and my walking ability as decreased to where I am even having difficulties walking in our tiny post office. I am trying very hard not to over analyze. And just go with the flow. AT least I have a cool wheelchair! Kerri

hello my name is doris i have recently been diagnoissed with conversion disorder this has been going on for two months not able to speak write sometimes walk its like apart of my life is gone i never dreamed of being like this i just keep praying and keeping my faith this has really been hard on me and my family what steps are you taking to get help for this is there any help out there. please write me back

Hi Doris,

Sorry to hear you have this disorder as well. I have somatoform disorder which is similar to conversion disorder. I hope you start to feel a bit better. This is a very real illness as my psychiatrist told me today and not imagined.

Where abouts are you from? I'm from UK.


Love,

Becky
xxxxx

Hi

Coming to terms with symptoms of diagnosed conversion disorder is not easy, not only for us suffering the symptoms but also for the loved ones and others around us that do not understand how we are suffering and do not know how to help.

You talk about taking one day at a time, this is something I did for a long time and to an extent I still do. To cope with my diagnosis and have some sort of a life I need to pace myself each day. Pacing, when being used to running around, and taking for granted walking, running, being physical with no come back and feeling great, is very hard. It took me a long while to get used to doing it. Pacing is: doing a little and resting, doing a little and resting all the time. In other words slowing down on life. Pacing in its self for me is very painful as I long, as you are at present, to be as I used to be. By pacing though I do find I can feel better, my symptoms can become less at times and so at times less suffering. Due to pacing and feeling better I sometimes forget I have anything wrong with me and start living as I once did but argh!! Give it a hour a day and symptoms are creeping in again. By pacing though when there is something I really want to do for a day, I can, I just rest more days before the activity or event and then have a great time, and then have to rest for days after. Sometimes up to four days. But if the day of activity and fun was good it’s worth it.

I have had conversion disorder for five years now. Do I get frustrated about it, irritable at times, upset and raging inside me because I cannot do things as I used to? Yes I still do as I guess anyone with a disability may. Do people understand me? No… but I am coping better than I used to. I started to cope better when I began to accept what is going on with my body and accepting I have to live with it, maybe for a short time, maybe for life, unsure, but I have to live with it the best way possible and I decided on January the first that I was going to stay positive all year no mater what. It’s hard to find something positive in sad and helpless times but I found it, whether it was positive to anyone else or not, I found something positive to me and to this day, Positively keeps me going.

When diagnosed the Doc told me, it’s Stress. I told him. “I am not stressed and I am coping well” I went home and thought about it. What was going on in and around my life was stressful. I was coping but, what a mess I was in, people were telling me “ I don’t know how Id cope if I as you” I realised then yes, I was coping but it was making me ill.
I monitored what was happening to me and sure enough, every time I dealt with a stress situation or worried or became upset my symptoms appeared. Symptoms I found hard or unable to control, Scary! As you have found out I think. I remember when I could not walk at all, determined to walk I placed one foot in front of the other with my brain, at last I had some form of control. Much of the time I walked on crutches and when I didn’t I looked liked someone who had been on the bottle for days, I remember walking up the street and thinking well, if my neighbours think I am drunk, let them think it, it will give them something to talk about. What else could I do, just give in? cry? Be in a wheelchair? No way.

For medication I refused anti depressants that were offered, I am not one for pills and when I have them always forget to take them anyway. Also I had a family member addicted on them and what I saw I didn’t like, but I do not tell anyone, hey don’t take them as for some people and illnesses I know they work. I have taken paracetamol for pain and I slap on Voltaren cream an anti-inflammatory and pain relief when needed. The rest of the time I rest or complain …… *smiling……

Do I work? Now this is a question that stirs up emotions. Yes I can work but for how long? An hour? A day? A week? Who will give me a job on these basis? My symptoms can come unexpected and when I am not feeling stressed. Though I have worked this one out. Symptoms can come after stress. When a stressful situation or event is with me or around me I cope well at the moment and feel good then Wham! When the stress is ending the symptoms kick in. Can symptoms be controlled? No. But when happening I am able to cope by mind concentration, taking a rest, and looking for positivity to create happiness though. As it’s been years I have been coping with this I think I cope without having to think how to cope if you can understand this.

Emotions play a large part in how I feel. If I am happy and things around me are happy I manage, if I am stressed, stress is around me, I get more ill. Earlier in the year when dealing with an emergency with daughter in the hospital accident and emergency department, I was in a position where I was helpless, I didn’t know what was happening or going to happen and all my symptoms crept in. I could not walk, I felt ill. I lost coordination in arms and legs, my voice went, my body was jerking all over I had no control over it. Everything was happening to my body all at one time. The nurses and Doctors could not believe what was happening and were reluctant for me to go home. They wanted me to stay the night. I knew what was happening and why and tried to explain with pen and paper but pointless. In the end I wrote on paper, I need crutches I’m going home. What a fuss, but in the end I got a pair of crutches and in front of the amazed and confused eyes of the Docs and nurses I stumbled, slower than a snail, out of the building. How I manage to move when like this can only be determination and stubbornness. It makes me smile now. Hehe. I somehow got to the car and sat in it for about an hour and a half, forcing myself to sing happy songs and telling myself I cannot do anything about what is happening and so let it go. Madness maybe, but for me it works.. I then was able to drive home slow and when home rest.

I am unsure if anything you have read here is helping you, I hope at least one sentence might. What has helped me, and still does is: keeping positive, no matter how cold I may seem to some people with my emotions and how I handle things. Fixing my mind to gain some relief over my symptoms when they happen and resting as soon as I know something is going to happen. I try not to push myself as I feel worse and taking problems and difficulties one step at a time and letting go of anything stressful that I cannot do anything about until there be a time I can do something. It’s all not easy and I am still reminding myself to do this.

I am unsure what has brought your symptoms on, maybe a stressful life, work or home situation, maybe something personal which brought about a lot of pain and emotion, maybe an unexpected trauma. Only you can work it out. And if looking for ways to cope all I can suggest is how I cope and ask you to try it. Be positive, let go of anything you cannot do anything about, Ask for help when needed. I know for sure I cannot live a full life as I used to any more and without the car Id have no life. I drive the car ok, no problems; my legs effect me when I walk when all my body weight is on them. Keep walking no matter what, Keep walking, I now suffer weak leg muscles from it all and have a dog to keep me walking. I find slopes hills and steps a challenge but with the dogs help, a walking stick, prayers and determination, like a snail I manage.

As for work the job centre kept telling me to apply for disability allowance I did twice and was refused. A Doc that came to see me did not know what conversion disorder was, many doctors do not and I was having a semi good day that day. I didn’t look ill and I didn’t get any help.

I have never had any seizures but I do get a tiredness at times where I need to sleep no matter what. Life is short and whatever is wrong with us we have to get on with it whether we like it or not. I hope you can accept what is happening to you soon and so find a way to cope. I found trying to fight the symptoms and worrying about it and why and such made me more ill.

For your family, ask them to be happy for happiness is something that is most valuable. It allows accepting and managing the symptoms and allows a form of living. Happiness is my medication, and to realise that at times you may not be able to do all that you used to do.

Gilly.