Could Testosterone Have An Effect Here?

Discussion in 'Fibromyalgia Main Forum' started by joeb7th, Dec 10, 2006.

  1. joeb7th

    joeb7th New Member

    Just pondering something here.

    I notice a preponderance of women getting this disease.

    I just went to my first Fibro meeting and was told "no men" ever come to these but dozens of women do! ???

    I understand about the macho thing....and in many 12 step prgrams it is the opposite....many. many men with very few women...but I am wondering about testosterone.

    Seriously. Could this hormone make men less susceptible to these type of diseases?

    And could a big drop in this hormone make some men more prone to this?

    I can tell you ( I can be open here, I am too old and beyond worrying about embarrassing myself ) that I have definitely lost a lot in this area. I have erectile disfunction which has gotten very bad in last 2 or 3 years and other related problems. I have never been tested for a drop in this hormone but I am sure I have had this.

    I have not been able to see an endocrinologist in the entire year I have gotten ill. They are tough to find in my area. And I really want to have all my hormones tested.

    But the discrepancy of many more women getting this disease does open up the question...why?

    And that one big difference between men and women as we all know is estrogen verus testosterone.

    Just throwing that out there. If I ever have testosterone therapy and it helps, I will certainly report this as fast as I can. JB
  2. munch1958

    munch1958 Member

    Chances are if you think you have a hormone imbalance problem you are probably right! Our poor fatigued bodies are trying to keep us alive and can't afford a luxury item like a sex drive. If your car doesn't have any gas you are not going anywhere. Same thing with hormones.

    I've seen several endocrinologists in the past for hypothyroidism but didn't get any help in the libido department or help with balancing my hormones. They tend to prescribe only the meds you see on TV. If you labs come out on the low end of normal they don't help you get them back up to the high end of normal. Sort of like having a full tack of gas in that car.

    You might want to look into some alternative medicine or antiaging doctors. My compounding pharmacy (Bellevue Pharmacy Solutions) has a patient empowerment program which I highly recommend. They do mail order saliva testing (my insurance paid for it) and will help you find a doctor in your area.

    Are you on cholesterol lowering medication by any chance?
  3. jarjar

    jarjar New Member

    By chance do you have prostate problems? Such as it being irritated easily?
  4. elliespad

    elliespad Member

    Yup, yup, yup. My testosterone is low. Was on DHEA for years, then when starting FFC, doc put it in my compounded cream along with all my other hormones, pregnenalone, estrogen, progesterone, DHEA. I developed a rash, and discontinued the treatment, for now.

    I too would call your local Compounding Pharmacy, they are a WEALTH of information. They can point you to docs who are writing scripts for these types of compounds, also should carry the test kits for saliva testing.

    Hope something here helps.
  5. joeb7th

    joeb7th New Member

    I had a lower CT scan 10 months ago and it showed a "mildly" enlarged prostrate.

    But I have so many symptoms. I have had new doctors end my first consult with them and flat out tell me they didn't think they could be my doctor. They said my story sounded too complicated.

    I had to learn to keep my story limited to maybe 2 or 3 symptoms at the most.

    One doctor told me it was impossible for me to have all the symptoms I described.

    I have speculated that I might even have M S ... as I tremble and have muscle pain and growing weakness in shoulders, arms, wrists, hands, thighs, knees, calves, ankles. Never had this before last December, 2005.

    I feel so weak at times and sick, nausea but a weird sick I am being slowly and gradually poisoned. I say this because I have a soreness in my neck, throat area so often and I swear a slight metallic taste too. Most doctors feel back there and say they don't feel swelling ( it's not on the inside of the throat, but in the neck right below the jaw about an inch from the back of the jaw. One GI doctor looked back there and said "your tonsils are inflamed." I told a PCP this a few days later and he looked and said he saw nothing ???

    My leg weakness and arm weakness is growing to the point of really scaring me and ruining my confidence to find work. My disability has run out and our finances are in ruins. So lots of stress there as well.

    When I do get anything it seems to be 3 times worse than normal, almost makes me pass out. Had a stomach flu recently that put me in the hospital for 6 days with brady Cardia ( into the high 30's ) and my intestinal tract is so shot it seems. My stools are always yellow brown and the odor is not normal...I mean much worse than normal.

    Had a fecal test for fat absorbtion that came out normal.

    With every test that comes out normal, the doctors who have already taken the "psychosomatic" route with me almost seem gleeful in telling me about each of these tests and their negative if they are being justified in saying that their take on me is correct...I am just mentally creating all of this.

    I spend half my time defending my sanity as I do trying to find out what is wrong with me physically.

    I take Lorazepam to stop the shakes somewhat...but thinking of switching to Diazepam to try and get off of these gradually. It is a tough dilemma, let me tell you.
    [This Message was Edited on 12/10/2006]
  6. place

    place New Member

    I have been bouncing this idea around for the past 2 months. FFC doc put me on T3, Testosterone and a steriod. My muscle pain was lessing so I faded out the Testerone and steroid. Pain got worse.

    So I tested the Testosterone, started to put it where my pain was (it's a cream) and I could use that muscle longer, substantially longer then in months past.

    The difference between going shopping for an hour to 3 hours. and even then, my main area that I put the cream does not feel the pain, other areas do. I can't decide if this is in my head or location of the cream has any impact?
  7. joeb7th

    joeb7th New Member

    It takes me months , many months toi see different doctors due to the lack of funds, and living in a relatively small area. But I do want to get my hormones tested. This would be interesting if my testosternoe levels turned out to be very very low.
  8. cbs1234

    cbs1234 New Member

    Joe, You are clearly suffering from a reaction to the levaquin you took as described in one of your earlier posts. Have you tried going to the fluoroquinolone forum at geocities/yahoo? You will get tons of info and be able to talk to many, many people suffering from the same symptoms you have after taking one of the FQ antibiotics. Many have tried various hormone therapies including me.

    Check it out. Lots of good info.
  9. joeb7th

    joeb7th New Member

    Yes, CBS, I have always believed the Levaquin and it's poison "florine" just devastated my insides including nervous system, immune, gastro, hormones etc.

    Today is the one year anniversary of my first being prescribed this super powerful antibiotic.

    I passed out 1/2 hour later...was given it the next day, and then that night at home is when my body exploded with all these horrendous symptoms.

    And I think the Testosternoe thing is interesting.

    I was born with an undescended testical. Had to have testosterone shots at a very young age. This was the therapy back then. I remember now having raging tantrums and having difficulty sleeping and having nervous habits. Was this from those injections at around the age of 5 to 7?

    And even though they descended, the seals didn't seal properly and it was until I was 32 years old that I had a surgeon go in and seal the one that wasn't. Funny thing...right after this surgey, I mean within a couple of weeks, my wife got pregnant for the first time.

    But I won't know anything until someone test me. But curious if I would feel better with some testosterone...if indeed I am super low on this.
  10. Clay2

    Clay2 New Member

    Joe, what can I say? That's a terrifying story.

    I had a course of Cipro after some trouble urinating. It was 3 months later that I came down with Lymphocytic Colitis and the stomach flu that wouldnt die, chronic pelvic pain, and a kidney stone. I'll always wonder if it was the Cipro.

    My testosterone is actually a little high. I'm on finesteride (proscar) and doxazosin (cardura) for my somewhat enlarged prostate. One thing that really helps me is a supplement called Q-Urol from Farr Labs. It has quercetin and saw palmetto. I've never had much faith in supplements, but this one has changed my mind. Which is a good thing, since I bought a bunch today and start the Myhill protocol tomorrow.
  11. PVLady

    PVLady New Member

    I don't know if testosterone makes men less susceptible to fibro but I do know my husband having testosterone shots every two weeks makes a world of difference in how he feels.

    He started the shots over a year ago and if he misses them he gets very depressed. I always know when he misses his shots.

    It also helped his muscle tone and aches and pains. He just feels better in every way when taking the shots.
  12. jarjar

    jarjar New Member

    The majority of the symptoms you are describing are classic lyme syptoms. I strongly suggest you get the Igenex Western blot test so you can start recovering.
    Also find a lyme doc in your area to go over test results.

    50% of lyme patients don't even remember being bitten by a tick. Lyme/fm/cfs all have overlapping symptoms.

  13. joeb7th

    joeb7th New Member

    About 9 months to 10 months ago I was tested for a broad range of things by a Rhuematologist.

    he said I was negative ofr Lymes disease at that time.

    But here's two points in my history that make me wonder.

    I was a gardener for over 25 years in a part of Central California where we have tons of deer. I don't know if the deer in this part of the state ( central coast ) harbor ticks with this..but I certainly was into the rural areas for so many years and constantly working amongst the weeds and brush.

    Also, way back in 1982 I believe I was working as a gardener one day and all of a sudden my back just exploded into incredible itching. I went to my boss and told her this so she let me go to a doctor. I was only 31 at the time.

    Before I could get my shirt off the dermatologist said, " Oh, you have shingles." Herpes Zoster, which we all know is from having chicken pox and the virus is in you and comes out with Shingles as itching or painful hives.

    But that was 23 years before I came down with all the symptoms I have now.

    But, can you be tested for Lymes and they miss this?
  14. julieisfree05

    julieisfree05 New Member

    I just wanted to add my experience with testosterone..

    I saw a doctor who turned out to be a TOTAL QUACK! He told me that he was an "expert" in FM and that it was caused by low testosterone. He convinced me to try it, and it was one of the worst things I ever took.

    I ended up with execessive facial hair, and eventually and ingrown hair led to the development of a cyst that became so infected I almost ended up with "blood poisoning".

    I know that testosterone can help some people (women too) with FM/CFS, but please be careful if you try it.

    - julie (is free!)
  15. jarjar

    jarjar New Member

    It is well known that most standard lyme test miss 50% of lyme cases. The Igenex Western Blot is the gold standard test that most Lyme docs use. They only specialize in lyme testing. You can get the test for a little less then 200 bucks.

    I was bitten often while I was young but did not become ill till I was 33. Looking back I know it slowly worked its way thru my system with little things like prostate problems and ringing in the ears.

    Eventually it slammed me down and I was diagnosed as having EBV problems. I have heard of many people from CA geting it. You can also get it from mosquitos.

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