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HELLO MY NAME IS SOFYY. I HAVE FM FOR ALMOST 8 YRS. NOW AND BELIEVE OR NOT WHEN I FIRST STARTED WITH THIS CHRONIC PAIN NOT EVEN SOME FAMILY MEMBERS BELIEVED IN MY PAIN, AND AFTER SO MANY YEARS NOW, SOME OF THE PEOPLE THAT HURTS MY FEELINGS TALKING NEGATIVE ABOUT ME NOW SOME OF THEM ARE FEELING THE SAME CHRONIC PAIN SYMPTOMS OF FM SOME ARE WOMENS AND SOME ARE MENS TOO. GOOD LUCK TO ALL THE PEOPLE LIKE ME THAT REALLY SUFFER SO MUCH FROM FM. WITH LOVE SOFYY.
Me thinks this is a very relevant topic, seems that it may be very underrepresented.
I need more info about this serious illness. Knowledge and my willingness to take action are my keys to success. Being a black man and wanting more help because of how some in this world view this illness will be of much help. There is not enough info about us.
TO BRAD, SOFY, DJ, FLIP, MARIE AND HAPPIER WIFE:
HI EVERYONE AND THANKING ALL FOR SHARING YOUR THOUGHTS AND COMMENTS ON THIS SUBJECT OF CHRONIC PAIN IN WHICH WE ALL SUFFER AND THE INTERESTING SUBJECT OF "IT IS FIBROMYALGIA OR LOW TESTOSTERONE" CAUSING FM IN MEN. I AM STILL OUT ON THAT FOR MY HUSBAND. HERE IS THE UPDATE:
HE SAW THE ENDOCRONOLGIST 2 WEEKS AGO, RE- RAN HIS BLOOD WORK FOR HIS LOW TESTOSTERONE, I WILL REFER TO IT AS "LT" . KENNY, MY HUBBY, ISN'T EXTEMELY LOW, JUST A LITLE BELOW NORMAL, SO THE DOCTOR ISS PUTTING HIM ON "ANDROGEL" PREMEASURED PACKETS THAT HE APPLIES OT HIS SKIN ONCE A DAY.
HE WILL START IT ON NOV. 21, I CAN'T WAIT. OUR SEX LIFE IS GREAT DISPITE ALL OF OUR TIREDNESS, ACHES AND PAINS, ERECTIONS COULD BE BETTER FOR HIM, THIS GEL WILL HELP. NOW, THE DOCTOR SAID HE WILL FEEL BETTER WITH ENERGY LEVELS IN A WEEK, THE PAMPHLET SAID ABOUT A MONTH. I WILL KEEP YOU UPDATED. I REALLY, REALLY HOPE KENNY DOENS'T HAVE FIBRO AND THIS GEL MAKES HIM BACK TO FEELING NORMAL AGAIN. I WANT HIM TO START ON DHEA, AND SO FUNNY THAT ONE OF YOU ARE TAKING IT. I TAKE 25 MGS A DAY AND LOST 3 INCHES EVERYWHERE, IT IS KEEPING MY WEIGHT DOWN FOR SURE, I WAS DEFINATELY LACKING TH HORMONE. A AMN SHOULD TAKE 50-100 MGS AND A WOMEN NO MORE THEN 25,
KENNY HAS SAT, SUNDAY, MONDAY OFF, THIS WEEKEND, THAT IS WHY HE WANTED TO WAIT TO START GEL ON WEEKEND. MEN ARE FUNNY THAT WAY I THINK, IF IT WERE ME I WOULD HAVE STARTED ALREADY, DRIVING OR NOT WHO CARES, I AM SO TIRED OF FEELING SHITTY. BUT KENNY WORRIES ABOUT THESE LITTLE THINGS. I, MY SELF AM SEEING A UROGYNOLCOLGIST FOR MY WOMEN PROBLEMS THIS TUESDAY, GOT ALL MY RECORDS FORM UROLOGIST WHO LIFTED MY BLADDER 3 YRS AGO AND DR'S WHO DID PARTIAL HYSTERECTOMY THAT IS STILL CAUSING A PERIOD EVERYMONTH. I CALL IT MY "PHANTOM PERIOD" IT'S SO STRANGE, YOU GO THROUGH A MAJOR SURGERY LIKE I HAD, HAVING THE BLADDER LIFTED, BIKINI CUT FOR THE SURGERY, THEY TAKE OUT YOUR UTERUS, LEAVE YOUR CERVIX, UPON REQUEST, AND LEAVE OVARIES. I DIDNT WANT TO DRY UP LIKE THE DESSERT.
SO I STILL GET MY PERIOD FOR 6 DAYS, NICE HUH, THE ANSWER TO THIS IS THAT THEY LEFT A SMALL PIECE OF ENDOMETRIAL TISSUE, PART OF UTERUS, TO CERVIX, CAUSEING A PERIOD. MY DOCTORS WERENT HONEST WITH ME WHEN I ASKED THEM IF I KEEP MY CERVIX WOULD THERE BE ANY PROBLEMS??? THEY NEVER EVER TOLD ME I COULD STILL GET A PERIOD. I WAS PISSED.
SO THIS UROGYNOCOLGIST WILL HOPEFULLY TAKE CARE OF THAT PROBLEM AND THE FACT SINCE I HAD THE BLADDER LIFTED I HAVE A HARD TIME URINATEING. ITS SO FRUSTRATING AND I THINK MY CERVIX DROPPED TOO! SORRY FOR ALL THE INFO, BUT I AM DISCUSTED. WHEN YOU ARE DEALING WITH FIBROMYALGIA EVERYDAY, 9 BULGING DISCS IN YOUR SPINE, 2 IN LOWER BACK WHICH ARE BONE ON BONE AND RUB TOGETHER, OSEOARTHITIS IN SPINE AND GUESS WHAT PEOPLE? I JUST FOUND OUT BECAUSE MY LEFT SHOULDER BLADE WAS KILLING ME ALL THE WAY DOWN MY ARM, THAT I HAVE A PINCHED NERVE IN MY NECK. THIS IS MY NEW PAIN.
MY PAIN MANAGEMENT DOCTOR, WHO BACK IN OCTOBER OF THIS YEAR, JUST CUT BACK ON MY PERCOCET, SHE DOESNT KNOW ABOUT THE PINCHED NERVE YET. SHE IS IN FOR A SURPISE. I WENT TO THE DOCTOR SHE TOLD ME TO GO TO. I SEE HER JANUARY 4TH. I CAN MOVE MY APPOINTMENT UP, BUT WHATEVER, I AM SO TIRED OF THINGS AND DOCTORS, I HAVE TO SEE MY RHUMETOLOGIST ON DEC. 7, INTERNIST ON DEC. 3 RD. THATS IT FOR NOW. GOING FOR MAMMO/SONO DEC, 9TH.
I HAD THE ENLARGED LYMPH NODE CHECKED OUT IN MY NECK AND MY INTERNIST IS KEEPING AND EYE ON IT. HE THINKS IT COULD BE BREAST RELATED MAYBE, THAT IS WHY I AM GOING FOR MAMMO/SONO. NICE HUH???? WHEN WILL I WAKE UP FOR ONCE AND FEEL GREAT. ITS VERY DEPRESSING. YOU ALL CAN RELATE.
I KNOW SOFY HOW YOU FEEL, YOUR IN PAIN EVERYDAY AN THERE ARE NO ANSWERS TO FEELING BETTER. WHAT MORE DRUGS, THAT TOO I AM TIRED OFF. I TALKED ENOUGH, I NEED KENNY WELL SO HE COULD FINISH THIS HOUSE I HATE, SO WE COULD MOVE IN 3 YRS AND THE STUFF I DO DURING THE DAY MAKES ME IN SO MUCH PAIN BY NIGHTTIME, I HAVE NO STRENGHT TO DO PROJECTS INSIDE MY HOUSE. MY HUSBAND KEEPS SAYING ITS NOT GOING ANYWHERE, DONT WORRY. I AM WORRIED, I HATE THIS HOUSE AND WANT TO MOVE SO BAD. A WARMER CLIMATE.
THE GOOD NEWS IS I AM FLYING TO COLORADO, WITH THE HELP OF KLONOPIN, I HAVENT FLOWN IN 14 YRS. I AM VISITNG MY 1/2 BROTHER, I AM GOING WITH MY DAUGHTERS, MY SISTER AND HER HUBBY AND MY DAUGHTERS BOYFRIEND. WE ARE GOING IN FEBUARY. WE ARE NOT TELLING MY BROTHER I AM COMMING, I AM THE SURPIRISE. HEEHEEE, HE IS GOING TO BE SO HAPPY!
MUCH LOVE TO ALL AND ALL YOU GUYS WITH YOUR FIBROMYALGIA, OLEASE KEEP WRITING YOU COMMENTS, I WANT TO HERE FROM MEN WITH FIBRO AND HOW THEY FEEL. KENNY GETS UP EVERYDAY, SORE AND ACHEY, EXTREMELY EXHAUSTED. THANK GOD HE DOENST HAVE BACK PROBLEMS. HE NEEDS TO LOOSE 70 POUNDS AT LEAST. HE WONT WALK BECAUSE OF THE PAIN AND BEING TIRED, I WALK 45 MINUETES EVERDAY AND HAVE BEEN DOING IT FOR ALMOST A YEAR NOW.
DO ANY OF YOU FACEBOOK, TWITTER, OR MYSPACE, I DO ALL THREE AND YOU CAN FIND MY PAGE UNDER TAMMY MICHAEL. NICE TO CHAT TO YOU ALL, HOPE WE ALL FEEL BETTER SOMEDAY, MUCH LOVE TAMMY ^j^
I'm a 25 year-old man with fibromyalgia. I've recently started a website/social network for men with fibromyalgia called Fibro Guys. We have close to 150 members, so please visit the site if you would like a valuable resource on men with fibro. Thanks! - Rick
Hi my name is Adalies and I live in oakland, right now 3 of my college classmates and I are putting together a documentary for our class about people with fibromyalgia. We need the story of a men with this deseas that is willing to let us film his story so many people can be awear of suck deseas. If you know someone close to the bay area that is a male that is willing to let us film his story please let me know. Thank you and I look forward from hearing from you.
This is all documented with blood work, ordered via Rx Androgel (I'm so exhausted I'm about to lose my girlfriend-can't keep up physically, not sexually). I was told I NEED TO TRY FOR PROIR AUTH., THEN APPEAL IT, For the Adrogel you think my insurance (on medical disability-trying to return t work but not like this-no energy!) would pay, at least most for the injections rather than the gel?
HELP! I'M DESPERATE. BEEN AN ATHLETE ALL MY LIFE, WITH GENETIC DISORDERS. NOW I FEEL GREAT EXCEPT FOR THIS ISSUE-I'VE BEEN A LONG TIME OPIATE DEPENDENT PT DUE TO THE DISORDER-NO CURE ONLY TREAT SYMPTOM WITH PAIN CONTROL-RETURNED MY LIFE EXCEPT THE LOW TEST. THINK MAYBE MY PAIN MGEMENT MD CAN HELP SAYING THIS WILL HELP MY PAIN AS WELL?
THANKS, UPSET W/OUR INSURANCE SYSTEM-WORKED IN MEDICINE FOR 20+ YEARS AND THIS IS WHAT I GET IN RETURN!
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thanks for the interest. i am a 56 yr old male with fms and have a hard time explaining it to those who do not want to take the time to understand. i get by.
HI EVERYONE! BOTH MY HUSBAND AND I ARE 48 AND BOTH WERE DIAGNOSED WITH FIBROMYALGIA AT THE SAME TIME 9 YRS AGO. I THOUGHT THIS WAS A LITTLE STRANGE, AND MY HUSBAND DOES HAVE ALL THE CLASSIC SYMPTOMS AND ACHES AND PAINS. VERY RECENTLY WE ALSO FOUND OUT THROUGH BLOOD WORK THAT HIS TESTOSTERONE IS VERY LOW. I AM WONDERING IF THE LOW TESTOSTERONE COULD BE MISTAKEN FOR FIBROMYALGIA OR DOES HE REALLY HAVE IT? HE WILL BE SEEING A ENDOCRODINOLOGIS IN THE VERY NEAR FUTURE AND HE WILL GIVE MMY HUSBAND "TRT" HORMONE TREATMENT TO GET HIS TESTOSTERONE BACK TO WHERE IT WAS AND I GUESS WE WILL SEE. IS THERE ANY MEN OUT THERE WHO HAVE BEEN DIAGNOSED WITH FIBRO, HAVE LOW TESTOSTERONE? THANK YOU ALL FOR LISTENING, TAMMY MICHAEL ^j^ I AM SO SORRY FOR ALL OF EVERYONES SUFFERING, I HAVE WRITTEN MANY POSTS ON MY CHRONIC BACK PAIN. ANY KIND OF PAIN FOR ANYONE IS SO UNFAIR AND DIBILITATEING.........:O(
I read recently that women around menopause or low level of estrogen fell pain more then when they were balanced.
I would think that the same could be true for low testoterone.
I saw a program on PBS about taking care of your brain a lot of good stuff. Dr. Amen said that a hormonal imbalance can change the brain.
Marie
My husband has been diagnosed with Fibromyalgia for the last 15 years. He has been on Disability for 8 years. A comment I made to the Dr last year may be of help to you. My husband has had NO interest in sex for most of the 15 years. That day the Dr. offered Viagra, I said it that isn't the problem, he has no desire. The dr. ran a test for his testostrone level, it came back in the single didgets (not 300 or above like it should be). It has taken a year of shots every 3 weeks to bring the level up. The first thing we notice, he had a desire to do things (mow the lawn, clean the garage) about 3 days after each shot. Now that his level is up, his desire for sex has returned. I am hoping with continued use, the Fibromyalgia pain will disappear. I don't know which came first, the fibromyalgia or the low Testrotrone level as it wasn't tested before.
I, too, am a 48 yr. old man w/ diagnosed (by 3 doctors) fibromyalgia and myofascial pain syndrome (these are NOT the same, even though some Dr.s will claim they are, although they commonly occur together). After 7 yrs of looking, I finally found a Dr. who specializes in FM, and about 3 weeks ago we started testosterone therapy because my level was a very low 74 (normal range is about 240-900). I also started an adrenal [Cortef] and after 3 weeks seem to be making improvement inspite of just having some of the worst news of my life (which usually sets of severe FM). Since women are 8 times more likely to have FM, and of men who have FM virtually all have low testosterone, it just makes sense to try it if the levl is low. If his FM is like mine, you'll try anything especially to avoid getting addicted to ever higher amounts of narcotics, which is all most doctors do. I am hopeful, as is anyone w/ FM. Testosterone has almost miraculous effects on older men (and women too) in many areas of life. Normally I say let nature run its course and wouldn't recommend it for men who have naturally declining testosterone as long as it is in the norm, but for FM suffers try to find a doctor that is interested in longevity research if your doctor is not open to the idea. Also, don't think that your husband has low test INSTEAD of FM. I'm not aware of any research showing low testosterone BY ITSELF causes FM in men. It is one of a number of factors that must be addressed and can take many months. Everyone is different. He should consult his physician first, but I also take 400 mg of 5-HTP, and 1500 MG of L-Tyrosine, along w/ 100 mg of DHEA per Dr.'s orders, and this has helped, especially w/ depression. Vit. D and magnesium are also important. Hope this helps, I have enormous sympathy for anyone w/ FM or severe pain in general.
I will suggest these other things to the Dr. My husband takes Lortab and Methadone, for pain, things for sleep and depression. Lyrica, until they upped the dose and the insurance said NO.
Care to share your worst news?