i've had dystonia and fibro for about 2.5 yrs. it's taken control of my life and it's affecting my family as well since i'm always mad and irritated. meds dont' work. my neurologist is out of answers since the Botox is not responding. i don't know what to do. my depression is getting worse and i find myself wishing i don't wake up to avoid going through my painful days. i know my stress from everything i'm going through doesn't help due to the pain. I don't know what to do anymore. is anyone out there going through the same thing?

Not the same exactly. I have Lyme Disease which mimics many other illnesses. Doctors tend to try to treat the symptoms which won't work because it is only a mimic. Have you tried massage?

Since most medications do not do as advertised for me, I am limited to what will work and have had to find alternate ways. I use accupressure to relieve symptoms. And I use a form of massage called Myotherapy - check it out and see if it might help. I was absolutely near death at one point because of pain and depression and could not convince doctors that what they were doing did not work. If medicine for me is not aspirin based it does not touch the pain. The myotherapy stopped the carpal tunnel symptons, thyroid symptoms and when the spinal arthritis acts up, it helps that as well. I am a many years dancer with the associated problems as well, but depend wholly on holistic ideas and massage. Even if it does not "fix" you, it certain would be a help. Try it.

I also have both illnesses, I've had fibro for six years an dystonia for about four years. I have started botox again, it is helping but really hard at first because I always seem to get drop neck so I stopped for a while till pain got unbearable. One thing that has made the fibro better recently is the high vitamin and high antioxidant juice like the naked green machine. I've been drinking atleast two a day and I guess it's the anti-inflammatory properties that have made difference in my energy and pain level. Still in pain but better. Haven't found many people that have both so glad I found this site.

Fibro for 14 yrs, Dystonia for about 3-5 (just diagnosed 10 days ago). Started at my new pain clinic. Dr. is 28-30 yrs. old, and knows some things . He already did a cervical epidural. Unfortunately, the treatment benefits only lasted 2 days. Those 2 days were wonderful...( "I did the dougie") Next is botox then surgery. Those 2 days gave me HOPE. With a more positive attitude, I know my quality of life is going to get betta and betta. Follow the suggestions given: get up out the bed daily, shower, put on some smacker lip gloss, walk for 5-10 mins (more if able), call an empathetic friend, write your kids a sticky sweet letter...any/all things to distract yourself. PRAYER CANT HURT. I know you can do it! love, love, love to you

yea i feel you, i got dx with DRD and my careers in the arts are completely shot, cant play my instrument, dance career is over, i can barely get the primal survival skills down living solo just to survive. yeah it sucks. i got dx about 4 weeks ago and am on 25/100 sinement 3/day + the other 6 drugs.

You are going through what so many of us do. We all start out being treated with botox but if you get high doses, eventually antibodies are likely to develop. For some people it just doesn't seem to work at all. I had selective peripheral denervation ten years ago and my result was very good. My head was turned far to the right and slightly upward. However, I must tell you very honestly that this surgery will result in a drastic change to your physiology which creates a new set of problems you will need to adapt to. First of all, it is a major surgery requiring 8-9 hours in the operating room and a long, difficult recovery. There will be permanent numbness across the entire back of the head and a feeling a tightness. If you can adapt to and live with these issues then at least your head will be much straighter and you will be able to FUNCTION much more like you once did. It is a trade off. I don't think DBS (deep brain stimulation) is going to give as good of results, and I myself would not opt to have an electrode implanted in my brain. If the dystonia you have is below the moderate level, I would stick with pharmaceutical means like Klonopin to help abate it somewhat. If however, it is moderate to severe, surgery is an option that can really help, but tough to go through, recover from, and live with the consequences of it. You can also try finding another neurologist to see if he or she is more successful at treating you with other forms of botox you may have not received. If you want to discuss it further please contact me. Only too glad to help.

Hello Amster,

Welcome to the NeuroTalk Support Groups!

Welcome Amster.

I have had Fibromyalgia for about 4 years now and was diagnosed 2 days ago with Chorea. So far I have not been told much about this and how long it can affect me. I am 44 years old and never displayed more than a twich or shrug of my shoulders in the last 4-6 months. in within days it has gotten so much worse. Has anyone experinced this?

I know what you are going through. I have had fibromyalgia for years and severe cervical stenosis and recently have been diagnosed with dystonia. The pain is unbelievable and nothing seems to help. (I've tried muscle relaxants etc) My neurologist can't figure out what is causing the dystonia. At first she thought it was due to the drug seroquel but I'm off that & the spasms continue to worsen. I can hardly stand upright any more and am afraid to drive. On my last visit she said she thinks the dystonia may be due to fluctuating levels of serotonin due to other medications I am taking. Has anyone had experience with drug induced dystonia? I'm at my wits end. Thanks.