• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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    Not Really A Newsflash, But At Least A Long Overdue Admission Of Potential Dangers And Warning Regarding Benzos, Anti-Anxiety Drugs, etc

    I’m glad this issue is getting discussed, and hope things change drastically in terms of how these drugs are prescribed. And I hope people read this bf ever considering this “deal with the devil” drug. Klonopin has ruined my life, to the point I am now suicidal over the harm caused by the drug...
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    Craniocervical Instability (CCI) Diagnosis: Supine MRI vs Upright MRI

    Wishing you well with your recovery!
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    Craniocervical Instability (CCI) Diagnosis: Supine MRI vs Upright MRI

    I am curious about traction and EDS. I have EDS, and lots of problems with my neck. I was told my measurement was .9mm in flexion, which is by definition pathological. However, manual traction made my neck worse, as does bracing. I am Homebound by spasms throughout my scalenes and brachial...
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    Benzodiazapines

    @Yippeki Yow, thank you! It helps to know what’s happening, and it makes so much sense as you explain it.
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    Benzodiazapines

    Yes. It is not a matter of if, but when. None of us are told this, and given the chance to decide with informed consent. I knew I could become dependent but was led to believe @Seadragon, thank you! Congrats on a successful taper, and good news to hear you have recovered!! I’ve been so stuck...
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    Benzodiazapines

    @YippeeKi YOW !! Thank you so much for your words of encouragement as well as your guidance on this site - I need both!! 😊 Are you tapering a benzo? I have been dry cutting to measure my dosage but the scales are not reliable. I recently had to replace a scale and noticed wd symptoms right...
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    Looking for Benzodiazepine Damaged pwMEs (Klonopin, etc.)

    2Cor, I hope your taper goes smoothly. I am in a similar situation, but with Klonopin. I had the same mindset that I would simply be on it for life. My muscle spasms, headaches, pain and fatigue have all increased after 7 years on .38mg of K, (dosed once a day.) My hair is thin, nails brittle...
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    Xanax or Other Benzo Withdrawal SUCCESS Stories, Please.

    Thank you for posting this to give us hope! I am in tolerance wd on K, and trying to taper slowly. I am super sensitive and polydrugged. Has anyone had success while on other meds?
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    Benzodiazapines

    Sorry, I posted too soon. As I was saying, it made everything better until it made it worse. I am in tolerance, and am at a place where I don’t know if I will make it. I am super sensitive and it’s brutal trying to wd, even in very minuscule increments. I am much worse than before K. I was...
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    Benzodiazapines

    I am in tolerance wd from Klonopin and it’s harsh. Severe spams, migraines, sleep is less, etc. It made everything better until it madec
  11. C

    HOW on earth is EDS or any other CTD not the soil in which ME flourishes?

    Prolotherapy made my CCI worse and ME/CFS which had gone into partial remission resurface with a vengeance. Be careful with cervical Prolo.
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    Craniocervical Instability (CCI) Diagnosis: Supine MRI vs Upright MRI

    I wonder about traction for those of us with EDS and CCI. With lax ligaments, stretching and traction can make them worse (as it does for me)?
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    Craniocervical Instability (CCI) Diagnosis: Supine MRI vs Upright MRI

    Hip, sorry you are going through this. I am completely bedbound too after cervical Prolotherapy for instability.
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    Craniocervical Instability (CCI) Diagnosis: Supine MRI vs Upright MRI

    My Grabb Oakes only shows instability in flexion of 9mm. I have EDS. Severe neck pain and spasms in my thoracic spine, bedbound. Traction in the past, as well as neck brace, made me worse. But I can feel my neck go out of joint, hard to hold head up, no range of motion, trigger points, etc...
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    Craniocervical Instability (CCI) Diagnosis: Supine MRI vs Upright MRI

    I am housebound as well. I got much worse following cervical Prolotherapy.
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    Craniocervical Instability (CCI) Diagnosis: Supine MRI vs Upright MRI

    How did you measure on your own? I was told by the physician at Regenexx that my Grabb Oakes is 9mm in flexion. I have neck pain, feels like it’s sinking, and spasms in my scalenes, pecs and thoracic spine. Cervical Prolo made it worse.
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    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    I have had a very negative experience with Prolotherapy on my cervical spine.
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    Cervio Cranial Instability measurement?

    I was told, based on flexion/extension MRI that I have CCI. The physician used Grabb Mapstone Oakes measurement on my flexion image only which measured 9mm on flexion, 4.5 on extension. Is he using this measurement properly as I though Grabb Oakes is static?
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    Tracking CCI / AAI MRI & Treatment outcomes

    Thanks, where is Dr. Gillette?
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    Tracking CCI / AAI MRI & Treatment outcomes

    Very sad to read this.
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    Tracking CCI / AAI MRI & Treatment outcomes

    I am looking into whether my son, age 15, diagnosed with ME/CFS has CCI. I have a few questions. An upright MRI was ordered, with flexion/extension. However, I spoke with Dr. Bolognese’s office, and they want a supine MRI for consult?? I called Dr. Henderson, and they don’t do phone consults. We...
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    Neck pain, spasms CCI or ligament instability?

    I will say that dry needling helped me for a long time. I suspect the reason it’s stopped, and now makes it worse, has to do with change in my meds. What I did find with needling is if one group of muscles got released, another tightened. Do I had to go multiple areas at once.
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    Neck pain, spasms CCI or ligament instability?

    Did you do a phone consult to get diagnosed? I only have bilateral numbness when my pecs spasm/get tight which happens whenever I use my arms in front of me, or above my head, longer than a few minutes at a time. I think I am developing TOS. Can I ask what kind of traction is helping you...
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    Neck pain, spasms CCI or ligament instability?

    Sorry, I meant to say when my pectoral (not thoracic) muscles spasm, which happens frequently, I have numbness down the arms.
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    Neck pain, spasms CCI or ligament instability?

    Thanks for your reply. Yes, I do have numbness in fingers, hands when my thoracic region gets tight. My scalenes have been in constant spasm for months, since I wore the brace. How did yours start? Dry needling was helping, but now it’s causing worse flares. How were you diagnosed? What...
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    Tracking CCI / AAI MRI & Treatment outcomes

    I have been tested. But it was only read by local Neuro/radiologist. Nothing noteworthy but bulging discs in entire neck, and narrowing of exit spaces. Was recently diagnosed with EDS 3. Here is my history: 1. 2012, injured SI joint walking downstairs. Was athlete/distance runner. 2. 3 months...
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    Neck pain, spasms CCI or ligament instability?

    Does anyone have significant muscle spasm issues? My problems started w Chiro adjustment in 2012. My entire back went into spasm, and finally succumbed months later to medications. No neck pain, but spasms in traps. My neck worsened in 2017 after prolonged extension looking up. Next assault...
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    Question to those with neck issues/CCI/AAI etc

    I know this thread is inactive, but I got substantially worse after first, my PT doing manual traction, then recently, using a hard cervical collar. Prior to the collar the back of my neck hurt. After using the collar, my scalenes in the front of my neck are spasming, as well as my pecs. I have...
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    Neck, scalene, brachial plexus spasms, trigeminal neuralgia

    Hi, I’ve had fatigue since being injured by a chiro adjustment in 2012 (was treating injury of SI joint). My entire back went into spasms. I did not realize I had Ehlers Danlos, at the time. I was prescribed clonzapam first, doses only at night. Was then prescribed Lyrica and baclofen one year...
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    Dr. Lapp closing practice, I need a doctor near Bristol Tn or Roanoke Va

    Hi- I live in Cary as well and just learned Dr. Lapp retired. My 13-year-old son has CFS (I have milder form/ more Fibro like) and am desperately searching for pediatric options. I am open-minded about treatment options. Has anyone found a solid practioner in the Triangle area?