FIBROMYALGIA, ARTHRITIS & DYSTONIA

First of all Arlene I do not know what dystonia is.Can you explain it to me??? I do understand your feelings of anger.I had 6 oral implants put in to put a stop to over 30 oral surgeries thinking this would end all that.It took me a year to get the oral surgeon to admit I had an infection.I cant go into it afterall you would be here all night reading it.

It took me from April to Sept to finally find an ears nose and throat doctor I felt had any common sense.She did surgery on my sinuses because I did have acute sinusitis.And she did a culture which would have answered my question about the infection a year ago.But I have staph and yeast infection in my mouth.Now I have stomach problems fron all the meds for infection they eat up my stomach.The inf. dis. doctor said when I told him couldnt he give me I.V. antibiotics so that my stomach would not be torn up.And his answer was that the infection didnt care where the medicine came from.Either take it or die.Can you believe that.So it has taken another year to get out the infected oral implant and on top of that it started pouring out puss.Which made me have to have yet another surgical procedure which I screamed throughout the entire ordeal. 

My poor dear husband cried though the whole thing.Because I asked couldnt he schedule a surgery for this procedure as he did before.His responce was that after he got me numbed up it would only take about ten minutes to fix it.Getting out the bone slivers.I knew I wasnt going to win this one so I said you better get my husband in here to help hold me down because if you are going to stick needles into a place i cannot even touch with my tongue I am going to buck.And he said well you cant do that.I said well you know if someone said they were going to put a needle in your eye dont blink what do you think would happen

There are only so few things we have conrol over.And then when it was over my hair was dripping wet with sweat and so were my clothes.I told him a weeek later when I went back for hin to check on the progress I hope you have your bullet proof vest on because I am packing an oozie.He laughed but not very nicely.

I have had staph and yeast in my body for 2 years.My stomach and my head hurts.My psychiatrist thinks I could have Multiple Sclerosis.Because of my dropping things and never even know they fall out of my hand.The ten thousand other symptoms also refer to as a broken brain.We have over 60% if our antibodies in our stomach.My stomach gets so big and destended I swear I look 8 months pregnant.So I have to see about that as well.It takes me 30 inutes just to write down my diagnosis.So girl if there is anyone who understands is sure is me. Good luck and I will pray for you as well.For those of us who must stick together....Jo

Girl I know how you feel-for 6 long painful years, I just got dx with Fibromyalgia, low back pain and a touch of arth...the Dr. I was seeing..is leaving, I have to find another Dr. and I hope he keeps me on the meds that I'm on. It helps but I have chronic pain. It hurts sooo bad, I'm waiting on SSi...but in the meantine. I walk with a cane and wear a backbrace...girl. This is so crzy.

Redbone72

I was fortunate after 6 years,  to find a good Rheumatologist who keeps up with FMS and its related symptoms...

unfortunately I am a severe case and pain meds do not work for me....

I asked my Rhemy why other Drs were always such a pain and put us through so much !

He said mainly because they cannot understand FMS and feel frustrated because we do not respond to usual treatments....

He also told me there are three types of addictions

1.  People who will take anything and doanything for a high

2, people who keep taking pain meds when they no longer need them. they are addicted tothe high

3.  People who have chronic pain and need the medications to have a semi normal life!

Also unfortunately when a Doctor sees our med list they are sure they are dealing with a druggie or a psyco!!

I have fibro,myofacial, chronic fatigue ,twofailed back surgeries, shoulder surgeries,osteoarthritis...it goes on!

Luckily my Rheumatologist has called some of the Drs and set then straight about my condition..

For any unexplained pain in back or neck,it is an assumption that it is FMS related..so they put us through all this crap before they treat it...Ihad a back operation that lasted 6 hrs! he had to pick out tiny bone pieces , do bone grafts and so on...and he was sure it was Fibro pain!!  out me through all kinds of tests before and needless to say I have another Dr now.

I always ask if the dr or medical personell treat Fibro..Still it is so stressful having to go to Drs....trying to explain..and No me losing 10lbs wont make me feel better!

Presently I am going to a pain clinic for my shoulder and neck pain..has helped a little...I use a tens unit and it helps  too...

Never In my wildest dreams or nightmares did I ever think I would experience so much pain,and it is pretty widespread now...but we carry  on waiting on that miracle drugs...

And praying that more people will catch on...and realize Fibro is a slow death! I hate the tv ad for a certain FMS drug..the actress looks and sounds way to happy happy!

Don't misunderstand me...I have a good life, and I do what I can to keep going...but give us a break will ya!

Nothing for sale.

www.FibroFix.com

Hello.  I have Dystonia.

Dystonia is a movement disorder similar to Parkinson's Disease.  Part of the brain tells the body to move or contract, without consciouis control by the patient. This can result in the sensastion of tightness or pulling, spasms, or contractures, twisting movements, or even jerks which can range from aggravating to excruciating.  Dystonia is the third most commono movement disorder.  It takes an average of 5 years and as many as 15 doctors to get diagnosed correctly.  Most doctors have never seen it, or cannot recognize it.  Unfortunately, many patients are mistakenly told "it's all in your head", and therefore miss out on important treatment.  Depression is common, especially in those who lack a diagnosis.

Dystonia happens in the brain, although you see the results in how your muscles move or contract.  The basal ganglia is the part of your brain that helps you move.  Nobody knows what happens in the basal ganglia that causes dystonia - there has been little research done.

Dystonia can be primary - a disorder by itself.  Dystonia can also be secondary - caused by another disease, disorder, or injury. Dystonia can start in infancy, or an adult.  Dystonia is given a name based on what part or parts of the body are affected.  One or more body parts may be affected, or it may affect the entire body.  There are many kinds of dystonia.  Dystonia is a symptom of something happening in the Basal Ganglia.

Common causes of secondary dystonias include - metabolic derangement such as hypO or hypERthyroidism, autoimmune disorders like Lupus, head injury which may have occurred years prior.  An important preventable cause can be specific medicines which treat nausea and some mental disorders.  Sometimes when these medicines are stopped the dystonia goes away.  Sometimes it is permanent.

Usually the first thing that is tried in dystonia patients is a medication called Sinemet.  Sinemet is basically Dopamine - an important neurotransmitter in the brain.  Sinemet can have remarkable affect on those who have Dopamine issues causing their dystonia.  Many children have been diagnosed with cerebral palsy when in fact they have dystonia that can be treated with Sinemet.  It's not unusual for people with this kind of dystonia to be confined to a wheelchair until a dose of the medication makes them able to walk and function again. 

Dystonias that affect small areas of the body like the hand, neck or face are often treated with Botox or Myobloc.  Patients often become immune to these therapies eventually, so many doctors wait until the patient is in serious pain before starting the treatment.  Once toxins no longer work, surgery and some pretty heavy duty drugs like Klonopin are used, first orally, then eventually via a pump that puts the drug directly into the spine, bathing the CNS to avoid side-effects.  DBS (Deep brain stimulation) is the last thing tried usually.  It involves implanting electrodes deep into the brain, with an attached battery in the chest.  The pulses to the brain somehow allow it to function more normally.  There is significant risk to DBS and it doesn't always work.  Often re-programming is necessary and when it once was helpful, eventually it may stop working as well.  DBS is also used in Parkinson's patients. 

Dystonia can result in 'Storms'.  This is where the dystonia affects the entire body.  It is dangerous and excruciating beyond kidney stones, childbirth, TN.  A storm may last days if not stopped by medicine.  

Since you are also diagnosed with Fibromyalgia and arthritis, I would seek out the advice of a Movement disorder specialist used to dealing with dystonia.  Some people with fibro and arthritis may have autoimmune issues that aren't being addressed including thyroid (Hashi's or Grave's), Lupus, Sjogren's, RA, etc.  Seeing a rheumatologist may be helpful to uncover any of these you might be dealing with.  Treating someone with secondary dystonia is important, because in treating the disease causing the dystonia, the dystonia can go away. 

I belong to a fabulous support group for Dystonia called Care4Dystonia.  Working in concert with WEGO Health, they have a very active online group ready to answer any questions you might have.  Beka Serdans, nurse practitioner, author, advocate and dystonia patient with DBS  runs care4dystonia.  You can peek in and read the archives here, or go to www.care4dystonia.com .   There is a lot of info about treatment options, clinical trials, and support.

I hope this has been helpful.  Please write if you would like to talk about your diagnosis.  It's very confusing because there isn't much info out there, and most was written by people who have never experienced Dystonia.  Dystonia is considered a rare disorder, and therefore often missed and ignored.

Hang in there....!

Ellen