calling anyone with/recovered from dissociative motor disorder

I would like to hear from anyone who has or has recovered from this diagnosis. I was diagnosed 19 months ago. i have not had any one to compare or share things with because i have yet to find anyone who has had or has this diagnosis. I can't possibly be the only person in the world with it!!! I know in the USA it is under the vast umbrella of conversion disorder but when i look it up there is rarely any mention of the motor problems i am experiencing.

I just want to know other peoples experience of this disorder

if you have experience or knowledge of dissociative motor disorder please let me know, i feel soo alone.

I wish you the best in your search. I can't imagine what it must be like for you. We're all here for you though, and we're listening. That's all I can offer you. I'm positive you're not alone. For them to have a name for what you're experiencing, others must have it too.

thank you for your best wishes, so far i have had no luck, seems i am the only one, i used to love standing apart from the crowd, but now i would love to be right in the middle, of a huge croud of others with my dx!! hey ho life goes on and i just have to accept it . they say god only gives you what you can handle, if that is so he is a very sick being and has well messed up this time!!!

((((((( yellowted ))))))))

I have worked with many people with similar disorders to yours and I have seen how hard it can be for someone that has physical disabilities and a psychological diagnosis.

Hi pegasus, thankyou, it is very difficult especially as i do not feel mentally ill, ok i have been down the last few days, (grieving process, late partners birthday) but usually i am bright and cheerful, even when i can't pyhsically get out of bed and my concentration is definitely dependant on my energy levels. I just would like to know if what i feel is the same as others with my dx, because when i get frustrated or fed up with struggling all the time it is being classed as depression not frustration!

I would think that frustration would most certainly be a natural response to any physical limitation we find ourselves in. Be sure to communicate with your support team about your alleged depression and why you disagree with their statement in regards to it. They are not you. They make decisions based on what you tell them and what they observe. Maybe they can explain why they think you're depressed.

thankyou fox xx will do xx

I have that. Sometimes my body feels like it shuts down and i can't move. I've never had a therapist tell me i have it, but reading about what it is it's exactly what i experience. Smetimes its the whole body. Other times its my legs only or arms or 1 arm and both legs or something weird like that. My last therapist said i was making it up, but i know im not. My boyfriend believes me because he has witnessed me have this kind of episode many times. No one would believe me but him.

wow we are the only two in the world i think! how long have you been experiencing it Krisakira? my legs are permanently shut down for over a year now, my hands and arms are hit and miss and my core muscles are very weak. do you feel pain with it at all?

No pain. It only lasts for a few minutes. at worst, up to a few hours. I knew a girl back in college who probably has this. it is just her legs though. I've been experiencing these episodes since i was 19, so about 3 years now. I'm sorry that its lasting over a year for you, it must be horrible to cope with! Luckily, for me, if i get someone to rub my arm or leg or hit it (without causing it too much pain), it will make the episode go away quicker. but that is only if i can get my mouth to work enough to say coherent words. sometimes my mouth shuts down and i cant talk. but again, like i said, mine only lasts for a few minutes...

wow i wish mine was so quick, the co-ordination in my hands varies all the time but they constantly hurt, more so of an evening, my legs do not move independantly at all ever and hurt most of the time but i do not notice it as much if i keep myself distracted! my core muscles don't work either so i can't sit up unsupported at all!(this is the hardest bit to deal with because i have to really plan how i am going to do every move i make so as not to keel over like a baby!) I spend most of my day strapped into my wheelchair or scooter, and the rest of the time i lay in bed emailing or trying to find others going through the same thing! I have to shuffle on my bum everytime i need the loo as the landing is too narrow for a wheelchair and i pull myself up each stair by pulling on the hand rail and pushing off the stair at the same time all because I do not 'fit' the criteria to get my home adapted (i own it!!)
How does your care team treat you? mine have no clue what to do to treat me! they are trying to dump me in a residential neuropsychiatry rehab unit for 6 months!!!

Hiya yellowted......

Sounds like your body is really struggling with issues. Maybe it is body memories that have been hard wired in by your brain. Being in a neuropsychiatric facility may help you and them to sort things out.

When I am triggered I have spasms (which really hurt), stuttering and tics. It can be embarrassing in public. I can even grunt like a pig.... very nice. Oh yes and the different voices.

Sometimes my psychiatrist has to help me get my head straight = literally. These reactions have been happening for years.

I know someone couldn't walk for a year and then they just got better.

And maybe in your case it is a physical illness that they haven't worked it out yet. I do wish you well. Take Care.

Thank you Possom, the person you say you knew who got better after not walking for a year, were they diagnosed as having dissociation?
I just can't get my head around the idea that all this is due to my memories, i do not feel mixed up, have a really logical approach to everything, have to my knowledge sorted out my past in my head, accept what happened was not my fault, nothing to be ashamed of and was due to having a sick stepfather and scared mom!I have done everything i can to protect my nieces, now it is not my responsibility anymore, i have washed my hands of my family and feel much better for doing so, no regrets!

Sorry yellowted, I dont know if this person suffered from dissociation at all.

The thing about body memories is that it is buried in the subconscious so you wont be aware or what is triggering you. It just gets hardwired in. Its just the bodies way of coping with the un copeabable. A form of ultimate suppression I suppose.

Another person.... while under sedation for an operation, had these bruises come up around his wrists. Eventually it was traced to being tied up as a kid, but it was something that his mind had buried.

I was sedated for a dental procedure. While unconscious my neck spasms started. I certainly cant fake that.

IT is very hard to deal with the body when it is not doing what we would like. Medicine has come a long way but not so much with the aspects that affect the subconscious.

When my body is doing something that is hurting me...... I ask it what do you want. Sometimes I get an answer.... or it starts crying which short circuits the bodily actions. Tears are a good form of expressing unspoken pain. It just feels like a big jigsaw inside sometimes.

I know I am not giving you solutions. If I could I would tell you how to fix things. Its all a kind of personal journey for every-one. You aren't alone. You aren't faking things either.

Hang in there,

Thankyou soo much possom, you have made it much more understandable for me, sorry you are going through what you are, I totally understand the jigsaw feeling ((()))

Sorry to those who have already read this I just thought it would be a good idea to keep it on the first page because if any new members come looking for help with this dx it is not easy to find info on it! I don't want others to feel as i did xx

I am currently seeing a LCSW (Licensed Clinical Social Worker) In the U.S. as I live in America. I have been seeing her off an on for nearly two years... I took several months off but I am back at it now due to the fact that all my problems started in June of 2009 and are not gone yet.
I have NO idea what kind of Dissociation my LCSW claims that I have but she said it sounds like some type of Dissociation to her. My symptoms are extremely varied and hard to pin point but some do seem to sound similar to conversion disorder.
I am experiencing hypersensitivity to almost every sensation or feeling. For instance the simple feeling of having to hiccup can feel like I'm near ready to explode... a burning in my stomach can feel like flames engulfing me from the inside out. Warm water on my hands while feeling slightly familiar just feels too intense for me... I have great difficulty with temperature changes as whenever I feel hot or cold, it feels unbearable. Also heaven forbid when just one part of me feels hot or cold it is difficult to deal with because it just feels so powerful... though slightly reminiscent of a normal sensation... it all feels about 75% stronger than it ever did before.
On top of that... difficulty swallowing, problems dropping things, random yet somewhat mild spasms, memory loss, time lapses, etc.
But by far the hardest things to deal with are the changes in physical sensations... I go for hours realizing any sensation... such as the need to pee and suddenly it hits me like the strongest feeling I've ever felt, like wise and the same for nearly every other bodily function. Also people touching me hurts at times when I know it shouldn't... and my hypersensitivity makes it at times hard to handle being touched at all because it becomes so strong and unbearable that my skin literally begins to crawl and I feel as though I'm going to leap out of my body. This makes relations and closeness with my partner very difficult.

as a bit of a background I also experience trembling/shaking, increased ability to shiver, almost constantly tensed muscles, horrific cramps, nausea, general illness, minor hallucinations, (such as the smell or taste of something that isn't there) slight paranoia, (for instance the feeling that just something unexplainable isn't right with the world) extreme anxiety and panic, etc. It all started roughly two weeks after my partner of nearly 6 years up and left me, moved 15 hours away and disappeared. No idea if that has anything to do with it or not. My partner left in late May of '09 it began in June of '09.
The first times it started happening, it showed up only as a complete lack of awareness, zoning out, losing time, forgetting things and de ja vu sensations. Also behavioral changes like lying and shop lifting... with nothing but vague memories of those behaviors that were so hazy I hesitated to believe they were really me or really happened.

I apologize if this is completely off topic... but like I said... my LSCW mentioned suspicions of some type of conversion/dissociation thing causing my physical side effects. I have a great deal of digestive issues now as well. I've also been through dozens of medical tests, including an MRI, etc. none of which could find anything... I am set to see a neurologist in the upcoming future...

Almost all of my symptoms by now are gone except the physical hypersensitivity, digestive issues, slight paranoia, anxiety, etc. Did I mention hearing hypersensitivity? Oh my goodness, sometimes I hear a noise that really shouldn't bother me but it seems so powerful my ears just cant handle it, I feel as though I will be knocked off my feet by those powerful noises... at times my mind literally shuts down for a few moments after a loud noise, I have no idea if my eyes close or if I just completely quit seeing... but after a loud, disturbing noise... my vision goes completely black for up to 20 seconds or so and all I see is stars or sparkles or sometimes nothingness and during the time I lose all perception of gravity and balance because I no longer am aware if I am standing, sitting, laying, falling... I usually get my senses back in time to catch myself before I truly fall over but it is a close call sometimes.

Does any of this sound like that? Or is my LSCW just mistaken?
I am confused.

SadlyEverAfter, have you seen a doctor for a physical? It might be a good first step.

Yellowted, I never heard of this diagnosis before. From a quick google search it sounds like what you have might or might not be a form of psych dissociation. It can also have medical/nuerologicsal causes. Have you tried posting in the disabilities/chronic conditions forum? Folks there might be of help to you.

Hi Sadly ever after... sorry to hear you are having a hard time, Zoning out is a sign of dissociation as is tempory blindness and personality changes. paranoia, anxiety etc could be but i am not too sure, as a guess i would find it hard to give your symptoms a specific dissociative name but you could possibly fall under the heading of non specific dissociation which is where you have symptoms from a number of specific dissociation categaries through out the day/week. It is usual for dissociative motor symptoms to disappear within a few months as yours have and for them to appear after a trauma like your partner leaving. Zoning out/day dreaming is a form of dissociation which most people go through at some point in their life, it only is classed as a problem needing treatment if it significantly disrupts daily functioning. Stick with your lscw, it could do you some good, but i would ensure all your physical symptoms are checked out by the relevant specialists to be sure they are caused by your mental illness rather than an undiagnosed physical cause. hope this helps xx
lizardlady.... I had not thought of posting on the disabilities forum, i have put some bits on there but not this post! Thankyou I will try posting it there xx

reposting to seek others with this diagnosis

i am new here and i have dissociative identity disorder i started having lots of physical symptoms that would land me in bed for days so hypersensitive to touch smell sight etc at times when i get touched even a slight bump by stranger walking it feels like something burning thru my skin parts of my right thigh go numb and cant feel it i get shakey have twittching in my eye just alot i went to doc he sent me to a rheumatologist who after talking to my psychologist said i have fibromyalgia because of the pain i experience when i get touched i do jave other physical problems unrelated to mt dissociative identity disorder which just makes things worse when a part of me refuses to see the body is sick and needs medication not sure if what i said helped u feel better about things but i do wish u well on this healing journey and i hope u find the answers u desire soon take care

thankyou Vickielholt, sorry to hear you are in pain when you get touched, the fibromyalgia stuff is interesting and yes your post has helped me feel better, thankyou again xx Take carex

(((((((((yellowted))))))) you are so very welcome. im willing to discuss my health more with you and how it affects my inner beings as well as myself. my therapist stays in contact with my physical doctors because i have heart palpitations also when going into a panic/anxiety attack but come to find out i have a heart condition mitral valve prolapse severly which have to take heart meds for also. funny but not funny but one of my alters doesnt acknowledge health issues and wont take meds when she is out which gets me "us" in trouble later on. anyway i can help you i will just let me know

thankyou so much Vickielholt, it must be so difficult for you having an alter who will not take meds, is there no way your other alters can get her to understand that she needs to take them to keep the others well? just a thought as i do not have alters as such to relate to, only knowledge i have acquired from other people on this site!
sorry it took so long to reply, have not been up to talking much lately
Take care
Ted x