Fibromyalgia Monthly Newsletter
July, 2005
With featured articles on Fibromyalgia treatment and Chronic Fatigue Syndrome, information on treating Fibromyalgia, reviews of recommended products, and interviews with practitioners.
Coping with Fibromyalgia: One man's perspective
by Tamara Peters
Contributor(s): Steve
Published on: August 18, 2002
article reprinted from Suite101.com
“Women are much more likely to develop fibromyalgia than men (by a ratio of 4 to 1)” according to The Arthritis Society. The reason for this is unknown at this time. But, that does not mean that FMS is any less real for the men who suffer its devastating effects. To better understand these effects, and how they may or may not differ from the female experience, I decided to go right to the source.
The sole, brave, male, member of the Fibro Friends’ Support Group (Steve) has graciously agreed to let me pick his brain in the interest of gaining insight into the male perspective on FMS.
When were you diagnosed with Fibromyalgia? Age of onset - Age now -
Diagnosed with FMS in Dec. 2001 Age of onset: about 39 Age now: 51 First diagnosed with Osteo Arthritis (OA) in 1988 Had severe Glandular Fever (Mononucleosis) 1989, followed by Post-Viral Fatigue (CFS?) for 2+ years. Diagnosed with Sero-negative Rheumatoid Arthritis (RA) in 1994.
How, and by whom, were you diagnosed? Changed Rheumatologist in April 2001, he diagnosed after 3 visits with negative bloods, ex-rays, showing OA in lower spine and knees, and the standard 18 tender points (TPs). Says the RA is now in remission.
What are your symptoms?
Chronic, general pain (muscular and joint) static and moving - Pain in lower back, legs, feet, pelvic region when walking - All 18 TPs - Irritable Bowel Syndrome (IBS) - Poor sleep quality - 35 year history of stress and depression - Swelling in hands, feet, face, knees, ankles - Fatigue - General mental fog - Poor concentration - ‘Grasshopper brain’ - Some word difficulties - Varying vision - Irritable (are we surprised??- no, not really!) - Water retention - Occasional Irritable Bladder - Chronic inability to lose weight (gained 30 pounds last year, with no change in diet) - Headaches - Rhinitis - Trigger fingers
Do you take prescribed meds?
Sulfasalazine - Plaquenil - Propranolol - Cellebrex -Simvastatin - Paracetamol
Brief description of Steve's meds and their purpose:
Actually, only a couple of them - Simvastin and Cellebrex (and, I suppose Paracetamol) - are being used for its designed purpose. Sulfasalazine is a drug for liver disease which has a side effect of slowing down RA and reducing damage. Plaquenil is an anti-malaria drug whose secondary effect is to reduce pain and damage in RA. Both these are called 'disease modifying' drugs. Propranolol is a beta blocker, whose secondary effect is to improve mood and reduce anxiety. Cellebrex is primarily for the plantar fasciitis.
What other means of coping do you use? Alternative Therapies, supplements, etc.?
Have had chiropractic treatment, but advised to stop because of the fear of loosening the joints too much. Hot wax treatment on hands when pain and trigger fingers become too much.
I am shortly to attend a 3-week residential pain management program, where I will be taught advanced pain management and cognitive techniques with the aim not to reduce my pain levels, but to increase my ability to cope with it, thereby improving my quality of life.
How does FMS affect your quality of life?
Ruined my career. Now unable to work for an employer due to restricted mobility and frequent bad days. Forced to be self-employed taking in consultancy work when I can, for a pittance. (sound bitter - You Bet!!) Restricts social activities, can’t go out so much,need to leave functions early, uncomfortable when there. Constant pain makes everything that much less enjoyable. Have difficulty doing house-work and gardening, so home environment is not as I would like (my wife is out at work all day, so I can’t expect her to do everything.) Severely restricts sex life which is very important to us.
Which areas of FMS are you most affected by?
The pain is the worst, followed closely by the cognitive problems. I have recently had some intensive psychiatric therapy and have learned to keep the emotional problems under control.
Are you married, living with a significant other, or single?
Married, 30 years, two adult children, four grandchildren
How does FMS affect your relationships with your family and friends?
Because I have become more reclusive, I tend not to want contact with others so much, including, unfortunately, my family. The kids live 120 miles away which makes it difficult to see them regularly, but, since they also have problems, I find it difficult to cope with everything. My wife has been extremely supportive throughout, but I get the feeling she doesn’t fully understand what it’s like to have FM.
Do you belong to a support group? If not would you consider joining one?
Yes, Fibro Friends - the only one I belong to, but I am very happy there. There are no groups local to me.
Are you employed, unemployed, or disabled?
Forcibly self-employed. Disabled, with a small disablement pension and a small military pension.
Have you found a lack of information addressing FMS from the male perspective?
Most definitely yes. I have even found the odd site that says men are ‘unlikely’ to get FM.
What have been your sources of information about FMS?
Apart from Suite101, one or two of the US based links on the Fibro Friends’ site have been very helpful. Very few, if any, Uk sites have helped.
What is your greatest concern, or fear, regarding FMS?
Being in the same family as, and having some alarmingly similar symptoms to MS, a major fear is a mis-diagnosis, or, indeed, a progression to MS. Also, because my earnings are diminishing, pensions are de-valuing rapidly and it is hardly worth saving any more, I am afraid of being old, poor and disabled. Another fear is that, given the rate of deterioration over the past 3 years, unless the thing slows down, I will be in a wheelchair in 5 years’ time. I don’t think I could handle that. Lastly, because of my relative inactivity, my general health is suffering - my overall fitness that I worked so hard on while I was in the Air Force has suffered so much now, that I couldn’t drive a golf ball now, let alone play even 9 holes.
Other - Anything you would like to address that wasn’t covered by the other questions?
A concern is the general lack of knowledge, expertise and understanding of how this thing affects our lives and those around us, particularly by the medical profession. Also, the general attitude of employers towards the ‘invisible disease’ is quite appalling. That was one reason why I left my previous job, and why I have failed to find another. I will not deceive an employer into giving me a job when I know that there will be days when I just won’t be able to cope. I think it is just the general feeling of despair at the impairment of earning ability that hits men that much harder. I have earned precisely $170.00 in the past two months, and I feel terrible about it. It’s not that I feel guilty about leaving the breadwinning to my wife, she has always worked. It is more a self-worth thing, and that is very hard for the male psyche to accept. Also there is the feeling that, although people know I am ill, they still have the thought that I really should be out at work. I find that particularly true of people who come to the house during the day, the postman, gas engineer, etc., who do not know me that well. Also, there is a very strong feeling of having been deprived of some of the best years, when I am wise enough and have enough money to enjoy them. I know I should be out flying gliders (I stopped when our first child arrived), playing golf, walking as I used to do for miles in the mountains. Instead I have to drive there, potter about for half an hour and sit in the car looking at the view. I feel like a frail old pensioner of 90, and that hurts.
Tamara Peters works with Suite101.com in the following capacities:
Managing Editor: Medicine and Diseases
Contributing Editor: Fibromyalgia Friends
Associate Editor: Coping with Fibromyalgia-I&II CpE
Article originally printed at http://www.suite101.com/article.cfm/Fibro_Friends/94490