A Social Network for Men with Fibromyalgia, Chronic Fatigue or Pain
Joseph Sacino's Discussions
Elevated muscle enzymes and fibro--a connection?
1 Reply
Hi All, I was told by the rhumo that I had a slight elevation in my CK Total and Aldolase counts--but not to worry because they were not elevated enought to cause problems. Has anyone else had this…Continue
Started this discussion. Last reply by Rick Jun 23, 2010.
Can exercise make fibro worse?
1 Reply
Hi, I just been diagnosed with fibro( I believe shots in the dark) by two doctors (neurologist/rhumatologist). They did very little testing except for the "push/pull" stuff. I purshed pretty hard…Continue
Started this discussion. Last reply by Hans Miniar Jónsson Jun 20, 2010.
My story...can you help?
2 Replies
Hi Everyone, I have a progression of pain with movement and sometimes without movement which started approximately six months ago. I hurt my neck while exercising and it healed nicely except for a…Continue
Started this discussion. Last reply by HDC Oct 27, 2010.
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Joseph Sacino replied to Reverend Kurt fondriest's discussion 'who is taking lyrica'
Hi,
I only tried it for a few weeks and gave up. Maybe I stopped too soon. I just hate some of these medications. Maybe I should give it another try for the duration of two months. Thanks.
Joe
Joseph Sacino replied to Bill Cohen's discussion 'Dealing with Elderly Parent(s)....?'
Both of my parents are in their late 80s and I am the one who appears to be most responsible for them. It does get difficult at times-but to be truthful--caring for them is what keeps me going. I live about 15 minutes away from them and…
HDC replied to Joseph Sacino's discussion 'My story...can you help?'
Do you have insomnia? Do you experience anxiety? Any other symptoms besides pain?
Joseph Sacino left a comment for Bill Cohen
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…
Bill Cohen left a comment for Joseph Sacino
Joe: Can you send me 2 or 3 links or pdf's of articles you found that relate Epstein Barr to fibromyalgia? Let me take a look at them....
Bill
Joseph Sacino left a comment for Bill Cohen
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…
Bill Cohen left a comment for Joseph Sacino
Joseph: Where are you getting that information from regarding chelation and a relationship
between Epstein Barr and fibromyalgia?
Bill
Joseph Sacino left a comment for Bill Cohen
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…
Bill Cohen left a comment for Joseph Sacino
There is no test that a physician can give you in their office, nor any ordered from a lab, that can diagnose fibromyalgia. There are certain experimental findings from various researchers showing abnormalities in brain scans or spinal fluid…
Joseph Sacino left a comment for Bill Cohen
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…
Bill Cohen left a comment for Joseph Sacino
Joe: I hesitate to give anyone advice about their fibromyalgia condition, because in all honesty the cause of the condition is still unknown. Most good physicians probably despair because their can't help their patients. The scientific…
Joseph Sacino left a comment for Bill Cohen
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…
Bill Cohen left a comment for Joseph Sacino
Joe:
What is your dosage of Lyrica?
Joseph Sacino left a comment for Bill Cohen
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…
Bill Cohen left a comment for Joseph Sacino
Joe:
What medications are you on now?
Bill
Profile Information
- Relationship status?
- Single
- Do you have fibromyalgia? If so, for how long?
- I may have it. I seem to have a progression of pain in different parts of my body for approximately the past 6 months. The diagnosis seems to be one of exclusion but very little else has been considered.
- What is your current treatment protocol? Supplements?
- Nothing really to date
Comment Wall (9 comments)
- At 1:39pm on October 4, 2010,
Bill Cohen said…
- Joe: Can you send me 2 or 3 links or pdf's of articles you found that relate Epstein Barr to fibromyalgia? Let me take a look at them....
Bill
- At 12:22am on October 1, 2010,
Bill Cohen said…
- Joseph: Where are you getting that information from regarding chelation and a relationship
between Epstein Barr and fibromyalgia?
Bill
- At 1:19pm on June 30, 2010,
Bill Cohen said…
- There is no test that a physician can give you in their office, nor any ordered from a lab, that can diagnose fibromyalgia. There are certain experimental findings from various researchers showing abnormalities in brain scans or spinal fluid chemistry which correlate with fibromyalgia, but these are not licensed as diagnostic tests to the best of my knowledge. Could I ask where you're getting your information from?
- At 1:38pm on June 29, 2010,
Bill Cohen said…
- Joe: I hesitate to give anyone advice about their fibromyalgia condition, because in all honesty the cause of the condition is still unknown. Most good physicians probably despair because their can't help their patients. The scientific literature has some tentative theories that basically calling the disease some kind of genetic disorder causing the brain to send out the wrong signals to multiple body systems. Sorry to be pessimistic at this point in time....
- At 11:10am on June 28, 2010,
Bill Cohen said…
- Joe:
What is your dosage of Lyrica?
- At 12:50pm on June 25, 2010,
Bill Cohen said…
- Joe:
What medications are you on now?
Bill
- At 2:51pm on June 24, 2010,
Bill Cohen said…
- Joe: You had asked if I found a good fibromyyalgia doctor in NYC. I see Dr. Russell Portenoy, Chair of the Dept of Pain & Palliative Care at Beth Israel Hospital in Manhattan. If you want to search for a possibly good local physician, my best advice is to see if there is an MD or DO who is also a member of the International Myopain Society <(http://www.myopain.org/>;. They are a mainstream group of health care providers consisting of many researchers and concerned practitioners specialized in fibromyalgia and myofascial pain syndrome. Regretfully, to be honest, the situation involving effective medications is grim. Lyrica seems to work the best for most people, but it has side-effects, as do cymbalta and the low-selling savella. These are the three FDA-approved medications. I believe that Xyrem may be approved by the FDA in the near future. This is a highly controlled drug which also has side-effects, but which helps many fibro patients regain restorative sleep.
Bill
- At 8:39am on June 23, 2010,
mal meehan said… - hi joseph keep your chin up mate iam always here if you need a wee chat.mal
- At 1:02pm on June 21, 2010,
mal meehan said…
- hi joseph.i know how you feel mate i have had this condition for over ten years now,iam thinking of you joseph.
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