dystonia
 

hey
i´ve lately been diagnosed with rsd, and my dystonia of the toes is getting worse and worse
but what is somewhat strange that i only have the dystonia if i dont move my leg, and sometimes (not all the time) i can stop the dystonia of the toes for a few seconds...
i think my doc thinks i´m faking the symptoms, or that i´m somewhat hysterical....

how does dystonia feel for you? i can´t control the movement, except for holding my toes still for a few seconds - is that the same for you

thanks leiea

ps please excuse my english - im not very fluent

Hi Leiea and welcome, you are doing just fine with english. I am so very sorry you have been diagnosed with RSD. That happened to me 15 years ago following surgery. It started with frozen shoulder and now is full body or generalized and also internal
Even though I wasn't diagnosed for 4 years, I started physical therapy and massage therapy to regain use of frozen shoulder. That took a year of very painful treatments.
I had dystonia on a dailey regular basis. It was when I was relaxing-watching TV or my legs and arms would fly up. RSD is an autonomic disorder, meaning your internal organs are involuntary in motion-movement. This would also happen at night during a sound sleep. I had electric shocks, lifting my head right off the pillow. The jerks, jolts, spasms would come out of a sound sleep. No way of knowing when they would come. the head, legs, arms, My Dr. upped my anti-seizure meds-neurotin up to 3200 mg a day. This med, causes weight gain. The high increase in med, nearly stopped the involuntary motion of limbs. I went off the meds gradually a couple years ago and rarely have the involuntary jerks.
I believe somethings that helps me is he added anti-anxiety med to my routine meds. lorazepam 4 pills a day. Also I wasn't sleeping well at all, would be awake all night long till 6 pm. My Dr. put me on a trial study for seroquel xr and I sleep 10 hours a day. The restorative sleep mellows out the sympathetic nervous system which is good.
At one time, my toes started curling up-not touching the floor. My Dr. had me dailey swim and squeeze my toes while swimming. After about 4 months, the toes were touching the floor again. Swimming pool needs to be 86 degrees.
I hope this is helpful. Massage therapy and physical therapy has kept me mobile with the exception of my left hand. It is limited in ROM. There was misdiagnosis and delay of treatment. I still do stretching and exercise dailey.
Swimming has actually been the best form of exercise for me. Also massage therapy. Our lymph glands tend to swell up and retain inflammation. Lymphatic massage is a wonderful way too keep the lymph system clean.Usually insurance companies don't pay for it. But I had a surgeon want to operate on frozen shoulder and I still would need physical therapy. I had been paying for massage therapy for 6 months. I gave the insurance company choice of surgery or massage therapy. They said they would be happy to pay for massage therapy. I hadn't been diagnosed with RSD and stll wouldn't have had surgery, but was glad the insurance company agreed to do what I felt was best.
The only other meds I am on are two high blood pressure, vicodin for pain and going to get a compounding cream for skin issues---ketamine, lidocain, anti-inflammatories ???
This group of caring supportive friends are truly interesting in being helpful.Hope you stay with us. one of your new friends, loretta

Dear leiea -

You make your points very well. As for your doc, all I can think of is printing out the articles appearing under the heading "CRPS and Dystonia/Movement Disorders" under the RSDSA's Research and Clinical Articles page, at http://www.rsds.org/2/library/articl....html#Dystonia and politely giving them to your doc, as something to which you had been referred through a patient support group n the U.S., unless of course you believe that it would not be possible to do that without offending him or her.

However, as you have seen, there are a lot of doctors who regard dystonia as "psychogenic," which is to say that it is "of the mind." For a nice back and forth in the form of letters to the editor of a medical journal, following the publication of an article of the same name, you may want to look at this: Progression of dystonia in complex regional pain syndrome http://www.rsds.org/2/library/articl...espondence.pdf, which is included in the section from the RSDSA Research and Clinical Articles page I mentioned above. Please note the distinction that is made between "sudden onset" dystonia and that which develops slowly over time.

Finally, for an article showing that this really is all in your head, except that it is an organic brain condition, there is an admittedly very difficult scientific paper, Abnormal thalamocortical activity in patients with Complex Regional Pain Syndrome (CRPS) Type I, Walton KD, Dubois M, Llinas RR, Pain 2010 Jul;150(1):41-51. Epub 2010 Mar 24, RSDSA ONLINE TEXT @ http://www.rsds.org/2/library/articl..._Pain_2010.pdf

Please note that Adobe Acrobat Reader is needed to open the articles, which you can download for free at http://www.adobe.com/products/acrobat/readstep2.html (Although I would personally un-check the box to download the free copy of McAfee® Security Scan Plus, where I found the program to be pretty useless in the absence of McAfee's not-so-free real product.)

Finally, while I don't have true dystonia, I have suffered with profound leg spasms since shortly after I got RSD/CRPS. The best medicine I have found for it is Baclofen, which I take orally at 50 mg./day, although I know of some people with dystonia who have gone on to use an implanted pump where far smaller quantities of the drug are delivered, through an implanted pump, directly to the spine. However, that technique is not yet considered perfected. I personally get the best results from Physical Therapy and a synthetic form of a naturally occurring form of one of the 9 THC molecules that are the active ingredient of cannabis (marijuana) in a drug called Dronabinol and sold in the U.S. under the brand name Marinol. (Please see the attached.) The only problem is that Dronabinol makes me too intoxicated to drive or even send emails without severe embarrassment the next morning. :o

I wish you only the best all with this.

Mike

You're timing couldn't have been more perfect! A dear friend was told she has Dystonia and I wanted to help. Today you helped me help her and I'm appreciative to the heart. Bob.

hey

thanks for your answers! it really helps to read your posts and to see that the weird things my foot does aren´t that weird...and other experience the same

my dystonia - or now its more like a movement disorder like a tremor or so....has spread over my whole leg, and it rarely stops....but i´m currently started some medication which make me sleep - and it´s such a relieve to sleep more than 2 or 3 hours a day - however the pain and the movement is still there, and i really think of trying a lumbar sympathetic block - i only want the pain to stop - but i´m not sure if i should do that - any experiences?

xxx
leiea