Recently I did some research regarding the unique problems our men with FMS/CFIDS/MPS/Chronic Pain are having. Twenty-five men responded to my request for information and their experiences, coping strategies, views on the medical professionals and inspirational strengths are noted here. A common thread emerged as I read each man's story - not one had given up or had any plans to do so. All were continually fighting to keep their lives going in every respect, despite FMS's cruel and often tricky hand. I am honored to have been allowed this look into their lives.

AGES REPORTING

The men who responded to my informational request range in age from 28 to 51 years. Although one reported having symptoms of Fibromyalgia as early as age 14, and another at age 19, the respondants generally fell into the standard age group for all patients reporting Fibromyalgia symptoms, and that is Ages 25 to 45.

CAUSES/ONSET OF FIBROMYALGIA

As I read through each man's response, I noticed that most of the men reported an injury or major surgery as the precursor of their Fibromyalgia. Noted below are some of the reported events:

• Five operations within 30 days (at age 14) for a hernia and distended testicle
• Traumatic fall through an attic floor
• Three surgeries on knee while simultaneously maintaining a very stressful job
• Cracked vertebrae and broken rib in heavy equipment accident
• Fall through 18 foot high scaffolding
• Hit by truck while in military service; broken back
• Impaled through chest with a 6 inch nail
• Fall down 14 steps
• Total knee reconstruction
• Exposure to chemicals in the workplace
• Reaction to contrast dye used during a CAT scan
• Viral infection
• Hit by truck while riding Harley motorcycle
• Sustained major whiplash, fractured three ribs and right sterno-clavicular joint in car crash

Another gentleman said:
"It (the flare) started, I believe, about a year and a half ago. I had gone in for a conventional CAT SCAN, a follow-up to an internal surgery, and had a violent reaction to the contrast solution. Earlier in my health history I did NOT have such a reaction to the dye. By the time I got to the ER, my blood pressure was 39 over something. They couldn't find a pulse. With doppler they found a pulse. I couldn't communicate, I faded in and out and was VERY cold, also, I shook so bad I thought I was going to come apart. I later learned that I was in anaphylactic shock. From that time on I have been experiencing FMS symptoms".

SYMPTOMS REPORTED

Listed here are the many and varied symptoms the men reported, both before and after their diagnoses.

• All over pain (especially extreme back and neck pain), stiffness
• Tingling and burning in limbs, muscle cramps, rapid muscle burning and fatigue during exercise
• Chronic fatigue and sleep disorders (including sleep apnea and narcolepsy)
• Severe and constant headaches
• Clumsiness, poor coordination, poor memory, fog, vertigo
• Inability to make decisions
• Chest pain, anxiety, panic, depression, depersonalization
• Social phobia, noise sensitivity, irritability
• Irritable bowel and bladder, diarrhea, vomiting, feeling bloated, food and chemical sensitivities
• Excessive mucus, sinus stuffiness, drainage and pain, sore jaw, grinding teeth at night
• Rapid body temperature changes, fever of unknown origin

And another man said:
"I suffer with morning stiffness and always have a warm bath to try and ease the stiffness. I have allergies to certain smells and foods. I go very dizzy at the smell of bleach and I'm allergic to several foods, including chocolate, liver and apples - all of which I enjoyed previous to my Fibromyalgia. I suffer from clumsiness, balance problems and the usual bumping into things and dropping objects. My solution to dropping objects is quite simple: I don't make any effort to catch them because by the time I've reacted, the cup is on the floor and already broken. Why waste valuable energy!!!"

OTHER ACCOMPANYING ILLNESSES

Many of the men suffer from additional illnesses, along with their FMS/CFIDS/MPS. Those mentioned were: Crohn's disease, migraine headaches, tension headache syndrome, Temperomandibular Joint Disorder (TMJD), neuropathy, Multiple Chemical Sensitivites (MCS), low testosterone level, Depression - including Situational, and Major with suicide ideation and attempts, rheumatoid arthritis, osteoarthritis, sinusitis, carpal tunnel syndrome, chondromalacia, Raynaud's Syndrome, tendinitis, rotator cuff injury, Berger's Disease (inflammation of the kidney's filtering units), and major stomach erosions from prescription pain medications.

One gentleman had this to say about dealing with MPS plus Crohn's Disease:
"My doctor told me I do not have classic Fibromyalgia, but rather Myofascial Pain Syndrome localized to the back and neck where it joins the head. I have Crohn's Disease which sort of complicates all this. So we are going to experiment with different approaches and determine which treatment works best...I also currently take Wellbutrin for depression. It's about the fifth antidepressant I've been on in the last 4 years, but it's not the best for this particular condition so I think we will try Elavil. I am a literal walking drugstore. I take about 30 different pills a day for various reasons...".

MEDICATIONS

The men reported taking a number of medications, all with varying degrees of success - YMMV (your mileage may vary). No one mentioned any one medication as a being a "cure-all", or one that sufficiently relieved their symptoms of Fibromyalgia to a degree that they could forget they had this illness. Most of the men had gone the route of trying this one then that one. Some of the men took no medication and some had good responses from "alternative" meds. Listed below are the medications the men mentioned trying in their reports:

• Demoral, Morphine, Darvocet-N, Vicodin, Lorcet, Ultram, Soma (analgesics)
• Relafen, Daypro, Ibuprofen (NSAIDS)
• Lomotil, Robaxin, Meprobamate (muscle relaxers, sedatives)
• Buspar, Xanax (anti-anxiety meds)
• Prozac, Wellbutrin, Elavil, Trazodone, Paxil, Serzone, Doxepin (Sinequan) (antidepressants)
• Vancenase, Seldane, Hydroxizine (sinus meds and antihistamine/sedative)
• Androderm patches (testosterone replacement)
• Allopurinol (antigout medication)
• Vitamins, Herbs, Acetyl-Carnitine, Amino Acids, Ginko Biloba, Milk Thistle, Melatonin, Coffea, Caffeine (alternative medicine)

OTHER TREATMENTS

The men reported trying various treatments for their painful syndromes; everything from cortizone injections to hands-on healers. Also mentioned were chiropractic adjustments, trigger point injections (procaine or lidocaine for MPS), massage therapy, psychiatric counseling, myofascial pain therapy, Pietr Hitzig's protocol (Fen/Phen), reflexology, homeopathic medicine, aromatherapy, and comprehensive treatment at a pain management center.

One man who valiantly struggles daily to keep his business going said this about his search for relief from his pain:
"I have been through the Pain Center at (name and location deleted to protect anonymity). I have been through the Doctor after Doctor routine, been told I am crazy, and almost killed with antidepressants. I have sleep apnea and mild narcolepsy along with the FMS/MPS. I am almost too tired to move most of the time and cannot make a decision to save my life. Just trying to decide what to wear each day seems to be almost too much to deal with. By the time I shower and shave, I am ready to go back to bed. I feel like I have a constant hangover and I do not drink alcohol at all".

EXERCISE

A few of the men reported on exercise. The effect of exercise ranged from no improvement of symptoms at all to great improvement. Exercise routines the men reported include walking the dog, using a Nordic Track, swimming in a warm pool, and light sports. Several men stated that having Fibromyalgia and working full-time left no energy or time for exercise. Time spent exercising (pre-Fibro) was now spent resting after working all day.

One gentleman, who has good results from exercise, said this:
"Exercise is one of the best things prescribed that I have found to help me. I have been diagnosed for one and one-half years, but only exercising for about 6-8 months. I have noticed an incredible change in flexibility, stamina and strength. The aches and pains are still there but easier to deal with because of the exercise. Before I became ill I was heavily involved in sport and exercise and even though it is more difficult now, I still enjoy it".

FAMILY/SOCIAL

The men wrote a lot about their family and social lives. The men with a wife or partner stated that they were supportive, worked when they couldn't work, and were actively involved in helping to search out suitable medical care for their husbands/partners. None of the men stated that their spouse or partner had left them because of their illness. The men did not complain about constant arguments with family members about their illness. The men who reported about their children stated that they, also, were supportive, concerned and helpful although some of the men expressed worry about not being a good "role model" for their children because they were ill. All the men who spoke about their partners expressed a high level of concern about the added stress their illness has on their marriages and families. Mentioned were work issues, financial worries, some sexual problems and adjustments and medical insurance problems. Of great concern also, to some of the men, was society's attitude in general about how men should be strong, be the breadwinners, never show "weaknesses" like complaining about pain, or even admitting that you HAVE pain. Afterall, you're a MAN; you're supposed to be the strong one, the perfect one, the one who never complains, the one who can stand up to anything!! Yes, it's OK to have a heart attack, because that's what happens to men who work hard, play hard, overdo, overstress - you know, GUY stuff. But you are not allowed to have an "invisible chronic illness".

Some of the men who were now unable to work expressed regret at losing most of their friendships, as men primarily seem to forge their friendships in the workplace. As far as support groups, Internet chat and newsgroups about FMS, a few of the men reported feeling "awkward" as the groups were primarily made up of women. The free and open discussion of "female" problems at these groups was somewhat uncomfortable for some of the men to withstand and certainly impossible to relate to. Regrettably, because of this fact, it seems that support groups for FMS or chronic pain are not generally sought out and utilized as adjunctive support with the men.

Some of the men's comments about Social aspects:
"My social contacts were all centered around work. This may be more common for men than women. But since a severe chronic disease tends to break the common grounds for most friendships anyways, that might make things easier. Since I no longer work there, I don't expect people to keep in touch and am therefore not as hurt that they don't. Sometimes the conversations among CFS and FMS groups can be a bit awkward as they tend to, at times, be women's clubs with a lot of prejudice and/or anger towards men showing. I haven't really come up with a good, gentle way of saying 'hey, I'm not the SOB who ran out on your when you got sick so please be careful with the generalizations!'..."

Another gentleman said this:
"I tried to not show the pain I was feeling in the past 'til I got to the point my movement was so hindered I couldn't keep it from showing. I feel that men especially are looked at as wimps, or lazy when they complain about aches and pains. I also think that I was sometimes looked upon as lazy because I simply couldn't keep my property maintained like I would like to, etc.. I had more than I could handle coping with my work. I've had family members (not my wife) tell me they got disgusted with me until they finally realized I had some real problems. I think many men have a complex about being considered lazy; the "man of the house - it's my responsibility" kind of reaction."

This man struggles with his pain and feels the pressure to "keep it to yourself":
"I really HATE feeling this way. The next time someone asks 'how are you?', I would love to say 'I FEEL GREAT!'. But I don't even like to answer because I'm not one to lie and yet I don't like to sound like I'm complaining all the time. I've always been a more positive, up-beat type of person with a good attitude, so my answer usually is 'OK'..."

SEXUAL ISSUES

Some of the men who responded spoke about concerns they had in their sexual relationships. Antidepressant medications can cause low sex drive in both sexes and can cause men to be non-ejaculatory and women non-orgasmic. This was a concern for some of the men, but some were looking for ways to improve this side effect by trying different medications. Some had taken matters into their own hands and took "drug holidays" a day or two before intimacy, and that seemed to counteract this nasty side effect. Some men mentioned how they had to be creative in finding positions that did not further stress an already painful body. These situations call for communication between both partners, and some of the men mentioned that this subject was an extremely difficult one to talk about at times. Several men mentioned the constant love and devotion of their partners as being a major factor that keeps them going when trying to maintain this important aspect of their relationships.

I was honored by this man's openness:
"There is another problem that I've never talked at length about with anyone before - Sexual dysfunction. There is still a drive there. It just seems to be clouded over by this disease. I think it might have something to do with the constant pain I'm in, at least in part. My poor wife has brought up the subject many times. I can't seem to do anything but clam up and I usually can talk about most any subject. I can't explain this reaction. I don't like it; it just is. Maybe it has something to do with a feeling of failure; I don't know. I believe this, coupled with moodswings, etc. would have meant the end of our marriage if we didn't have a deep committment and love for each other that comes from our love and faith in Jesus Christ. It goes far beyond a physical attraction."

Another man stated this about antidepressants:
"My rheumie put me on Elavil for sleeping first, and there went my sex life - no desire at all. A friend that worked in a hospital pharmacy told me about trazodone. When I mentioned trazodone to my rheumie, he grinned and said 'that causes erections in males'. So, if that could be called a plus...the problem now is the positions available to my wife and I. Most of them cause pain."

The above is my summary of the research information I received from the men. Big fibro hugs to all you guys, and you know who you are, for helping out with my survey. I get a lot of email about this page in particular from men who say they feel less alone after reading your comments, and that there are lots of great suggestions here. Thank you again!