Coping with Fibromyalgia: One man’s perspective update
Contributor(s): Steve
Published on: May 1, 2004
article reprinted from Suite101.com
When we first met Steve Lloyd he was an angry, bitter, and depressed man. As a result of being forcibly unemployed, due to fibromyalgia and the lack of understanding of his previous employer, he was left with feelings of doubt about his self-worth, and …”a very strong feeling of having been deprived of some of the best years”… of his life. Steve said. “I feel like a frail old pensioner of 90, and that hurts”.
In our original interview, ”Coping with Fibromyalgia: One man’s perspective”, Steve candidly provided us with insight into the male experience of living with fibromyalgia.
In December of that same year, he entered a three-week pain management program in the U.K. and shared this experience with us as well in his guest article “Pain Management – A Different Approach”. As a direct result of that program Steve felt that his …”attitude has changed from that of a suffering survivor to a more positive thinking person”.
I thought it was time to check in with Steve again and find out how he’s getting along now – a little over a year later.
Hi Steve!
In looking back over our 1st interview and your guest article about the pain management program I thought it would be of interest to our readers to compare where you were in the beginning, both physically and emotionally, to where you are now – since the program.
Of your previously listed symptoms, which ones do you feel were most improved by the pain management program? Were there any symptoms that were left unchanged or even worsened?
The global soft tissue pain is much the same, although I suppose it gets worse at times because I am doing more and stimulating those naughty little nerve endings too much. The mental fog and confusion are much the same, although the coping strategies do work with practice. My IBS is very much better so long as I am a little sensible with the alcohol and spicy foods.
Which of your former meds are you still taking, and were there any that you were able to reduce or stop taking? I am still taking the Simvastatin, beta blocker and Hydroxychloroquine, although I am about to try a controlled reduction of that. I stopped taking Sulfasalazine about five months ago with quite dramatic results. All of the dreaded ‘yellow’ has gone (the damn stuff stains everything a bright orange/yellow colour), I think that it has dramatically improved the IBS and I don’t have to have all those blood tests any more. Add to that much more energy and generally feeling much better, I think that one was a success.
I rarely take pain killers now – paracetamol mainly with Celebrex if necessary – they don’t do much good anyway.
Have you discovered any other means of coping, either alternatively or traditionally, that helps you in managing the symptoms of fibromyalgia?
My main coping strategies are much the same – acceptance (I haven’t had any diagnostics for over a year now); a very positive attitude (the most important); refusal to give in (do NOT go to bed or lie down at every twinge of pain – that will make it worse) and finally, keep occupied (I have a full time self employed job and I now work 10-12 hours a day with few side effects).
How do you feel about your quality of life now? How has your perspective changed between then and now? Do you feel it has improved your relationship with your family and friends?
Quality of life is much improved – I can now work more therefore I earn much more so that the debts get paid quicker and we can enjoy holidays and other luxuries. My perspective has changed completely – this thing is a nuisance, certainly, but now I will not allow myself to get depressed about it and I will not allow it to affect what I do more than absolutely necessary. It is now a family joke (‘Dad’s in a fog and his lights are out!’) – that is not to say it is treated lightly or flippantly, they know that it is no joyride having to deal with the symptoms every day. My relationship with family and friends has greatly improved – I am no longer the one who can’t go to the party because the pain is too much and I always say ‘I’m fine, thanks’ when I am asked how I am. That produces a much more positive reaction from people and gets every personal encounter off to a really good start.
Which areas of FMS are you most affected by now?
I am most affected by pain, especially in my legs and feet, and by reduced mobility, although I very recently climbed to the top of the island of Little Tobago to photograph some Red Billed Tropic Bird chicks. That was a steep climb on earth slopes and steps and I was very pleased to have succeeded. That was all down to the lovely climate.
At this time, what are your greatest concerns and fears regarding your future and FMS?
My greatest concern is that I will start losing mobility as I get older. I have spinal stenosis too, which causes me considerable grief, and as it progresses there is a danger of reduced mobility. The answer is to do more and at least maintain my current levels.
Do you feel there’s been any improvement, in the last year, regarding information for men with fibro? Have you found any improvement in the general lack of knowledge, expertise, or understanding of FMers by the medical profession?
The answer to both is ‘not really’, and I have noticed an increase in crackpot theories and people trying to make a fast buck out of sufferers. Because of this level of mis-information and wooly theories, FM sufferers are still even more confused, despite the efforts of Suite U and other honourable organizations. Having said that, I think there could be more filtering out of the obviously ‘off the wall’ stuff before it gets published. As for the medical profession, I think in general practice, at least, they are just as ignorant as they ever were. I haven’t consulted my GP in 18 months about my FM – I know much more than my GP anyway. If I need a top up of my pain killer supply, it is always for my spinal stenosis – that, they do understand!
How do you feel about your general health and overall level of fitness now?
Much improved, although I could be a lot fitter – my job is sedentary and I don’t have too much time for exercise (I know, I know – I should make time ……..). The biggest improvement is in my mental fitness, which in turn helps me cope with the physical stuff.
Is there anything you feel very strongly about that you would like to share with other men with fibro?
Keep making your case as strongly as you can. You don’t have to give up work completely – you might have to do something else like I have to do, but it is very rewarding. You don’t have to give up sex – Fibro doesn’t make you impotent, it’s the drugs and your mental attitude that do that. If your heart is OK, take some Viagra to help things along – I do and it makes a huge difference (no pun intended!). You don’t have to feel (or be) inadequate around the home – just take 6 months to refurbish the bathrooms instead of 3. You won’t be popular, but what the hell! It’s important that your partner fully understands what is happening to you – don’t bottle it up, share it – all of it.
What has been the most positive or negative change in the past year?
The largest positive has been my continuing ability to handle quite a high workload – that has really surprised me. That is down to mental attitude and positive thought.
As for negatives, well, I don’t have to take those drugs anymore, and I don’t have to sit around wondering what to do next and whether I will be able to do it.
And for all you mathematicians out there, of course, we all know that two negatives together make a POSITIVE!!!
Thanks Steve!
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
