[frogga]

Hiya

Do any of you have rsd fits?

I have had them on and off for the last couple of years but they appear to be getting worse. I had a horrible one on Wednesday which lasted 6 hours during which I broke a couple of fingers and dislocated my knee and shoulder and ripped the cruciates ligament and stopped breathing (the spasms forced my neck over my shoulder so all the pressure was on my windpipe and my lips were blue). The pain was so horrific, it really scared me. I live with 9/10 pain all day everyday but that was a new level of pain. Apparently I screamed down the whole of the student accomodation block for about 20 minutes and then passed out. I also refused to go into hospital so instead Ben and Margo ended up having to deal with it with both of them holding me down with one holding my head to stop my neck from twisting too badly and so the spasms wouldn't break my neck whilst the other tried to control the jerks and stop my shoulders from dislocating.

However it now means I am totally screwed as I have absoloutly no movement from neck down, Every time I'm touched or moved I scream and I need to be in lectures (decided to miss them so far but will have to go back on Monday). However I can barely sit without falling sideways out of my wheelchair even with the sling, pillows, postural supports and brace on. Grrrr.

I know that I HAVE to get through this pain. I just wish it wasn't this hard and I'm so scared I cannot keep fighting this at this level. Even Ben and people who have known me through some rough RSD times last year were really concerned - apparently it's the worst they've ever seen me and as Ben was looking after me at the time he just really concerned - apparently it's the worst one he's ever seen me have and he said that he hadn't really understood what level of pain I lived with until he saw me on Wednesday.

Grr. I feel so pathetic but it just hurts so much.

Any ideas people? The pain is not calming down etc but I have huge amounts of essays due in 10 days or so. I can't bear to spend an entire winter like this (it is cold and damp here already) but I don't know what to do.

love and thanks for listening

Frogga xxxxxxx

[Jomar]

Those sound a lot like dystonia spasms.
I looked up more info about it.

What are the dystonias?

The dystonias are movement disorders in which sustained muscle contractions cause twisting and repetitive movements or abnormal postures. The movements, which are involuntary and sometimes painful, may affect a single muscle; a group of muscles such as those in the arms, legs, or neck; or the entire body. Those with dystonia usually have normal intelligence and no associated psychiatric disorders.
top

What are the symptoms?

Dystonia can affect many different parts of the body. Early symptoms may include a deterioration in handwriting after writing several lines, foot cramps, and/or a tendency of one foot to pull up or drag; this may occur "out of the blue" or may occur after running or walking some distance. The neck may turn or pull involuntarily, especially when the patient is tired or stressed. Sometimes both eyes will blink rapidly and uncontrollably, rendering a person functionally blind. Other possible symptoms are tremor and voice or speech difficulties. The initial symptoms can be very mild and may be noticeable only after prolonged exertion, stress, or fatigue. Over a period of time, the symptoms may become more noticeable and widespread and be unrelenting; sometimes, however, there is little or no progression.
top

How are the dystonias classified?

One way to classify the dystonias is according to the parts of the body they affect:

* Generalized dystonia affects most or all of the body.
* Focal dystonia is localized to a specific part of the body.
* Multifocal dystonia involves two or more unrelated body parts.
* Segmental dystonia affects two or more adjacent parts of the body.
* Hemidystonia involves the arm and leg on the same side of the body.

Some patterns of dystonia are defined as specific syndromes:

Torsion dystonia, previously called dystonia musculorum deformans or DMD, is a rare, generalized dystonia that may be inherited, usually begins in childhood, and becomes progressively worse. It can leave individuals seriously disabled and confined to a wheelchair. Genetic studies have revealed an underlying cause in many patients - a mutation in a gene named DYT1 (see "What research is being done?"). And it has been discovered that this gene is related not only to generalized dystonia, but also to some forms of focal dystonia. Note, however, that most dystonia, of any type, is not due to this gene and has an unknown cause.

Cervical dystonia, also called spasmodic torticollis, or torticollis, is the most common of the focal dystonias. In torticollis, the muscles in the neck that control the position of the head are affected, causing the head to twist and turn to one side. In addition, the head may be pulled forward or backward. Torticollis can occur at any age, although most individuals first experience symptoms in middle age. It often begins slowly and usually reaches a plateau. About 10 to 20 percent of those with torticollis experience a spontaneous remission, but unfortunately the remission may not be lasting.

Blepharospasm, the second most common focal dystonia, is the involuntary, forcible closure of the eyelids. The first symptoms may be uncontrollable blinking. Only one eye may be affected initially, but eventually both eyes are usually involved. The spasms may leave the eyelids completely closed causing functional blindness even though the eyes and vision are normal.

Cranial dystonia is a term used to describe dystonia that affects the muscles of the head, face, and neck. Oromandibular dystonia affects the muscles of the jaw, lips, and tongue. The jaw may be pulled either open or shut, and speech and swallowing can be difficult. Spasmodic dysphonia involves the muscles of the throat that control speech. Also called spastic dysphonia or laryngeal dystonia, it causes strained and difficult speaking or breathy and effortful speech. Meige's syndrome is the combination of blepharospasm and oromandibular dystonia and sometimes spasmodic dysphonia. Spasmodic torticollis can be classified as a type of cranial dystonia.

Writer's cramp is a dystonia that affects the muscles of the hand and sometimes the forearm, and only occurs during handwriting. Similar focal dystonias have also been called typist's cramp, pianist's cramp, and musician's cramp.

Dopa-responsive dystonia (DRD), of which Segawa's dystonia is an important variant, is a condition successfully treated with drugs. Typically, DRD begins in childhood or adolescence with progressive difficulty in walking and, in some cases, spasticity. In Segawa's dystonia, the symptoms fluctuate during the day from relative mobility in the morning to increasingly worse disability in the afternoon and evening as well as after exercise. The diagnosis of DRD may be missed since it mimics many of the symptoms of cerebral palsy.
more- http://www.ninds.nih.gov/disorders/d..._dystonias.htm

[Jomar]

For more information on neurological disorders or research programs funded by the National Institute of Neurological Disorders and Stroke, contact the Institute's Brain Resources and Information Network (BRAIN) at:

BRAIN
P.O. Box 5801
Bethesda, MD 20824
(800) 352-9424
http://www.ninds.nih.gov

Information also is available from the following organizations:
Dystonia Medical Research Foundation
1 East Wacker Drive
Suite 2430
Chicago, IL 60601-1905
dystonia@dystonia-foundation.org
http://www.dystonia-foundation.org
Tel: 312-755-0198
Fax: 312-803-0138

National Spasmodic Torticollis Association
9920 Talbert Avenue
Fountain Valley, CA 92708
NSTAmail@aol.com
http://www.torticollis.org
Tel: 714-378-7837 800-HURTFUL (487-8385)
Fax: 714-378-7830

WE MOVE (Worldwide Education & Awareness for Movement Disorders)
204 West 84th Street
New York, NY 10024
wemove@wemove.org
http://www.wemove.org
Tel: 212-875-8312 866-546-3136
Fax: 212-875-8389

American Speech-Language-Hearing Association (ASHA)
10801 Rockville Pike
Rockville, MD 20852-3279
actioncenter@asha.org
http://www.asha.org
Tel: 800-638-8255
Fax: 301-571-0457

Benign Essential Blepharospasm Research Foundation
637 North 7th Street Suite 102
P.O. Box 12468
Beaumont, TX 77726-2468
bebrf@blepharospasm.org
http://www.blepharospasm.org
Tel: 409-832-0788
Fax: 409-832-0890

Bachmann-Strauss Dystonia & Parkinson Foundation
Mt. Sinai Medical Center One Gustave L. Levy Place
P.O. Box 1490
New York, NY 10029
Bachmann.Strauss@mssm.edu
http://www.dystonia-parkinsons.org
Tel: 212-241-5614
Fax: 212-987-0662

Spasmodic Torticollis Dystonia/ST Dystonia
P.O. Box 28
Mukwonago, WI 53149
info@spasmodictorticollis.org
http://www.spasmodictorticollis.org
Tel: 262-560-9534 888-445-4588
Fax: 262-560-9535


top

"Dystonias Fact Sheet," NINDS. Publication date December 2003.

NIH Publication No. 04-717

[ali12]

Frogga,
I am so sorry about your fit - it sounds terrible. I have never had a fit, however I do have severe spasms in my leg.
I really think you should have gone to the hospital - afterall its better to be checked out.
I would suggest that you see a Psychologist - I know you have told me that you don't like seeing them but I have heard that some Psychologists are great and can help with depression - maybe they would teach you some coping excersises.
Hope you feel better soon
Pain free hugs
Alison

[frogga]

Hiya

Thanks both of you.

Jo - I am already diagnosed with secondary generalised dystonia but what happened was actually alot worse than my normal full body spasms as I rarely break bones with the "normal" RSD/ dystonia spasms and they also don't send me flying.

Ali - I have seen a pain psychologist in the past and worked on ways to reduce my pain levels by meditation etc but I only had about 6 sessions because neither of us felt there was much I could get out of our sessions (I mean I didn't see a pain psychologist for about 4 years and so was pretty used to coping by then!). I am lucky that I have dealt with most of the depressions/ depressive feelings from the RSD, or at least in regards to the life changes etc

Love you

Frogga xxxxxxxx

[ali12]

Frogga,
I am glad that you have found ways to cope without having to see a Psychologist, I don't like my Pain Managment Psychologist and I too am not getting enough time spent with him, I see him once every 2 months which is not helping me or my family.
However I also see an Educational Psychologist who is really nice and friendly, she likes a joke and is really kind. The Educational Psychologist is helping me cope with going back to school.
I too have Distonia (muscle spasms) it hurts a lot and it is so frustrating when you are out in public and the distonia kicks in.
Thanks for all your help, Rosie you have been great
If I can help in any way, just let me know
Pain free hugs
Ali

[Jomar]

I thought you had mentioned dystonia before.
Did anything specific seem to set this nasty session off?

soft hugs and prayers that someone can figure out something soon to help you

[lostmary]

Frogga,

Oh Hon, I wish there was something that could be done. i do think you should have gone to hospital, I'm afraid that it could happen again, and maybe you will not have Hotti Ben and Margo there to help. I'd try just about anything to make me feel better. please keep us posted.

Gently Hugs

Mary

[frogga]

Hi Ali

I'm glad the educational psychologist is being useful for you! The thing with paediatric RSD is that you will be forced to see a psychologist regardless of whether you want one or not. Some teens I know just go along and just talk rubbish and others go along and decide what they want out of the sessions - some people I know have been really helped by things like learning how to pace and learning coping skills for stuff such as sleep, mindfulness etc and helping you feel more confident in managing your pain.

For me the dystonia is always present, it mainly twists my joints and leads to contractures but also it causes jerks/ shakes and occasionally convulsions. All such fun! people always end up staring but just stare back! lol.

How are things going getting ready to go back to school?

Love ya

Frogga xxxxxxxx

[Sandel]

Aww Frogga I hope things settledown for you quickly hon.. I don't know what to sugest.. anticonvulsant drugs I imagine you are on strong doses already.. I'll do some searchin fer ideas online..
Sendin yr way soft healin hugz and body relaxin vibes my friend
Sandra