Fibro Guys

A Social Network for Men with Fibromyalgia, Chronic Fatigue or Pain

Bill Cohen
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  • New York, NY
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Bill Cohen's Discussions

Ever want to kill yourself?
1 Reply

This study is the most depressing I've ever read....about fibromyalgia and suicide. …Continue

Started this discussion. Last reply by David Amerson Dec 23, 2011.

FDA Issues Quack Warning to "Dr. Teitlebaum" Chain Clinic

These "chain clinic" claims--give me a break! Bill Fibromyalgia clinic chain gets warning letter The FDA has ordered Chronicity Inc. to stop making illegal claims that dietary supplements it sells…Continue

Started Oct 23, 2011

Youtube Series on Fibromyalgia
2 Replies

What do you think...? Bill …Continue

Started this discussion. Last reply by Karl Wegener Aug 20, 2011.

re: problems with intimacy/sexuality with fibromyalgia & Lyrica/drugs?
1 Reply

Has anyone noticed pronounced problems with both emotional and sexual intimacy after their fibromyalgia developed, and made worse by the drugs intended to help us? After my fibromyalgia developed, I…Continue

Started this discussion. Last reply by Hans Miniar Jónsson Jul 13, 2011.

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Latest Activity

David Amerson replied to Bill Cohen's discussion "What was the worst scam...."
"Odd, I actually had some pretty good experience with acupuncture and I have to say I was a very strong skeptic going in thinking it was akin to magic.   But after my first session (with a licensed specialist though Kaiser medical) my pain…"
Dec 24, 2011
David Amerson replied to Bill Cohen's discussion Ever want to kill yourself?
"There have been times I wished I were dead if only to stop the pain but NEVER have I wanted to commit suicide.  The good news for men is that it's really rare that we'd commit suicide due to Fibromyalgia but the pain is ust as serious…"
Dec 23, 2011
Bill Cohen posted a discussion

Ever want to kill yourself?

This study is the most depressing I've ever read....about fibromyalgia and suicide. http://www.reuters.com/article/2010/07/16/us-fibromyalgia-suicide-idUSTRE66F3JJ20100716 See More
Nov 11, 2011
Bill Cohen posted a discussion

FDA Issues Quack Warning to "Dr. Teitlebaum" Chain Clinic

These "chain clinic" claims--give me a break! Bill Fibromyalgia clinic chain gets warning letter The FDA has ordered Chronicity Inc. to stop making illegal claims that dietary supplements it sells are effective against fibromyalgia, chronic fatigue syndrome, hormonal dysfunction, and/or fatigue-related conditions. http://www.casewatch.org/fdawarning/prod/2011/chronicity.shtml Chronicity, formerly named Fibromyalgia…See More
Oct 23, 2011
Karl Wegener replied to Bill Cohen's discussion Youtube Series on Fibromyalgia
"This was an intelligent perspective. I have a R.A. doc because I also have Ankylosing Spondylistis... At 47 I have lost most of my teeth due to many factors including long history of medications for pain... This is a broad view I've seen change…"
Aug 20, 2011
Reverend Kurt fondriest replied to Bill Cohen's discussion Youtube Series on Fibromyalgia
"I thought these were very good . some info I knew, however it is good to see drs talking about it Thanks Bill for posting rev. kurt "
Aug 19, 2011
Reverend Kurt fondriest replied to Bill Cohen's discussion "What was the worst scam...."
"totally agree!!! We are like scam targets..... however when one is in pain one will try anything, just remember trying logic, that is  what I remind myself of:) Kurt"
Aug 19, 2011
Reverend Kurt fondriest replied to Bill Cohen's discussion "What was the worst scam...."
"Sorry to hear this rick, I do see a chiropractor for about 30 yrs. Over the course I have met some that were the ones that swore it heals all. Well I have been w/one chiro for nearly 12 years and he is a God send. He is down to earth. He says…"
Aug 19, 2011
Bill Cohen posted a discussion
Aug 5, 2011
Bill Cohen replied to david drew's discussion Sex question
"I think this is so common amongst men with fibromyalgia, but rarely discussed.  I don't think anyone knows whether it is the fibromyalgia itself, or the medications.  Both seem to cause lowered libido (lack of desire). In my own case,…"
Jul 26, 2011
Hans Miniar Jónsson replied to Bill Cohen's discussion re: problems with intimacy/sexuality with fibromyalgia & Lyrica/drugs?
"It's hard to be "passionate" when you're falling-down-tired."
Jul 13, 2011
Bill Cohen posted a discussion

re: problems with intimacy/sexuality with fibromyalgia & Lyrica/drugs?

Has anyone noticed pronounced problems with both emotional and sexual intimacy after their fibromyalgia developed, and made worse by the drugs intended to help us? After my fibromyalgia developed, I noticed a conspicuous "distancing" of emotional contact, although some passions remain.   Lyrica caused problems with sexual performance. There is a separate thread on sexual problems caused by Cymbalta.  I have the same problems with Lyrica.  See More
Jul 12, 2011
Hans Miniar Jónsson replied to Bill Cohen's discussion "What was the worst scam...."
"... Someone just tried to convince me that Fibromyalgia is one of the "modern diseases" caused by eating meat!...  I was apparently supposed to go on some special diet for 30 days (with 300 dollars worth of supplements) to clear my…"
Jul 11, 2011
Bill Cohen replied to joe allen's discussion this disease is IMPOSSIBLE...
""Finding somebody that understands and cares about you, as much as they care about themselves"--makes absolute sense, Rick, but in my experience, the only person who could understand someone with fibromyalglia was another person with…"
Jul 7, 2011
Bill Cohen updated their profile
Jul 6, 2011
Bill Cohen updated their profile photo
Jul 6, 2011

Profile Information

About me:
background in scholarly, academic & medical publishing.
Relationship status?
Single
Do you have fibromyalgia? If so, for how long?
Yes, for appoximately 15 years
What is your current treatment protocol? Supplements?
Lyrica; sodium oxybate (xyrem); currently testing out
LDN (low dose naltraxone)
Favorite activities/hobbies?
academic/trade publishing; LGBT studies; beagles;home movies; 3D television; satire
Favorite music?
Gilbert & Sullivan; other classical
Favorite TV shows/movies?
House (MD); science fiction; history & documentaries
Favorite books?
varied

Comment Wall (12 comments)

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At 7:30pm on October 11, 2010, Joseph Sacino said…
Hi Bil, Sorrry I haven't gotten back to you sooner. Frankly, I don't know how to attach a PDF to the site. I do it all the time when i have a regular email situation. Sorry! I've been investigating in a general way what may appear to be underlying causes of fibro. Like i mentioned to yo once before....Ebstein barr can trigger it, Thyriod problems can be connected to pain and fibro--either hypo or hyper.
Although my thyriod is ok on paper, it doesn't mean it is optimal. I amy have mild hyperthyriodism. A weak immune system appears to be a cause of lots of probelms--inclulding fibro. If you just google the general area, lots of material is available. I'm a especially interested in the thyriod issue. I just entered "thyriod disease and muscle pain" and I got a really good article--Muscle and Joint Pain with Thyriod Disease by Mary Shomom. What I've found is nothing really scholarly but i am a sincere believer in alternative or integrated medicine for chronic problems. I'd love to get to the source of the probelm and deal with that. TI wich you well. Wish I could be of more help. Thanks Joe
At 11:33am on October 4, 2010, Joseph Sacino said…
Bill, I was diagnosed with Ebstein Barr. Supposedly many people test positive. So, I just yahoo-ed Ebsten Barr and fibromylgia and a ton of stuff appeared on the internet. It seems that the virus may trigger fibro. I am now going to a homeopathic (MD) who does chelation therapy, so I tried that on the internet as well. Again, lots of stuff came up. WEBMD was one of the sources. I'm really struggling with things now. It appears thatI might have myofacia pain as well. It seems that things are getting wose by the week. I recently went to the Hospital for Special Surgery to their Pain Management Department. I'm getting new MRIs of my back and neck because that's whre the main source of pain is from. I've been to chiropractic and physical therapy. They make things worse. I Just can't believe what is happening to me.
Not on anything expect cymbalta. I
At 9:07pm on September 30, 2010, Joseph Sacino said…
Hi Bill,

A quick question: Have you ever heard of Chelation treatments for fibromyalgia? I believe that is is supposed to clear toxins and build the immune system. A stronger immune system might wipe out the Ebstein Barr firus which was found as a result of a blood test. It appears that Ebstein Barr may bring on FMS.
At 11:33pm on June 29, 2010, Joseph Sacino said…
Hi Bill, I'm going to have an EMG test on Thursday which was suggested by a neurologist. I'm also going to see the rhumatologist again next week. I've been dong a great deal of reading on FMS. I've read about a lot of diagnostic tests to determine the source of pain. Does the Pain Management Clinic at Beth Israel diagnostically test for different causes/sources of pain, or is their main purpose to control pain as a result of a previous diagnosis? I'm really getting overwhelmed at all of the possible causes and remedies for FMS, it appears to unending. I'm especially concerned about the relationship between FMS and theimmune system. Thanks. Joe
At 5:45pm on June 28, 2010, Joseph Sacino said…
Bill - I take 50mg of Lyrica twice a day and 25/50mg of Seroquel each night. Thanks for your interest. I really don't feel anything significant from either medication, I'm probably "hooked" on Seroquel--been taking it for about 5 years. Beginning a low carb, low gluten and low sugar diet--I hear that might help. Take care - Joe
At 9:28pm on June 26, 2010, Joseph Sacino said…
Bill, Currently on Cymbalta (80mg) and Lyrica, prescribed by family doctor. I laso take Seroquel for sleep; it is a life-saver. Rhumatologist does not believe cymbalta works. I have to see her again for a treatment plan. Not sure that she is the best doctor for me. Thanks again. Joe
At 12:48pm on June 25, 2010, Joseph Sacino said…
Bill,

Can't thank you enough for taking the time to provide with with such great information. I need the best people I can get.

Joe
At 11:05pm on June 23, 2010, Joseph Sacino said…
Hi Bill,

I'm Joseph from Bronx, NY. Have you found a good fibro MD in the City?
Good to meet you! Be well.
At 12:23am on April 7, 2010, Randall said…
Hi Bill, hope u're having a good week. I'm intrigued by your background in scholarly, academic & med publishing. What led u into that?
At 12:50pm on January 8, 2010, Mikel Rosenthal said…
Welcome to the group Bill :) Let us know how the low does naltraxone works out for you. I'm interested in trying it as well.
 
 
 

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