Reaching OutI reached out to a few of the men with Fibromyalgia I follow on Twitter and asked them some questions. The first two questions were about when symptoms began and the journey to diagnosis, to see if there were any real differences from my experience and that of female spoonies. The third question really got to the heart of how it feels to be a man with Fibromyalgia. Finally, I asked what advice they would give to a man who thinks he may have Fibro. Here I will share with you some answers they gave me.
When did your Symptoms Begin?
The initial symptoms were those of IBS, which started in January 2005. The IBS transformed into chronic abdominal and pelvic pain in April 2007 and finally into pain throughout the body aka fibromyalgia in May 2008.
It started when I was about 13, so over 20 years ago at the point I’m writing this. It started as an aching neck that sometimes hurt more and led to headaches. But it was muscle tension in my neck that never went away once it all started.
Tell me about your journey to Diagnosis
Oh my life, well for a start it took about 10 years to get a diagnosis! The doctors just treated it as persistent pain that would eventually go away, so gave me various pain medications. I was also, for a time, put on low-level anti-depressants. This was not because I had depression, at least not then, but because at low-levels you can use them to treat pain.
Once a year or more had passed with no improvements, my parents helped me find alternative therapies to do it ourselves. Homeopathy, chiropractic and remedial massage are the only ones I can remember. But they did not help, especially homeopathy. Chiropractic and massage helped but only for about an hour after treatment. And my family has never had loads of money to spare, so we did it over several years at great cost to my parents, both in time and money.
The older I got, the worse my symptoms became. Once I was in my late teens and then very early 20s, it was still getting worse, with my neck, head and shoulder pain becoming more common. I had many tests done and various scans: x-rays, ultrasound and MRI scans. All came back clear. I remember being really annoyed when my MRI results came through the post. The letter said “You’ll be pleased to know your results were clear”. I couldn’t have been less pleased – I needed answers.
Once in full-time work and into marriage, stresses and strains really made my pain unbearable, and I still did not have a cause or label for the pain I was in. It wasn’t until somewhere between my early and mid-20s I finally went to a hospital clinic that answers finally came through. I had my “pressure points” tested – a massively painful thing, however short-lived the examination was. Eventually they told me I had “Fibromyalgia”… or at least I “probably” had it. Turns out you diagnose it by ruling out most other options first.
Although I hated being labelled, a diagnosis means you can begin treatment. I still feel like a guinea pig – “let’s try this and see if it helps” kind of approach. My symptoms have become more varied and are still getting worse, but at least knowing its Fibromyalgia means I can explore ways forward.
In January 2005, I experienced bloating and loss of appetite. I was turning 30 then and thought perhaps it was just a symptom of an ageing process and reduced my food intake. After a few weeks, I realized that I was having incomplete bowel movement. I did not know “that terminology” back then and so I reported the symptom as constipation to the doctors. I mentioned that the stools were normal and still unable to evacuate but they always summarised it as constipation in the medical files. They did a few diagnostic tests for stomach infection and after finding everything to be normal, they gave me some enzymes for better digestion and sent me home. The problem, though, continued, and I lost weight because of my inability to eat. In my search for a workable remedy, I bounced around between doctors, from primary care to the specialist to a super specialist and then in, alternative therapy from an acupuncturist to an Ayurvedic and finally to an energy therapist. Nothing made a difference and by September 2006, I had lost around 22 lb (10 kg).
Unknowingly, I had developed a habit of straining while having a bowel movement. That led to a series of painful anal fissures starting October 2006. They scheduled me for surgery twice but by that time the day of surgery arrived; the fissures seemed to heal. They would then recur after a few days. Finally, after extensive testing at Stanford, they diagnosed me with IBS and provided with a medication called Zelnorm.
Zelnorm helped me immensely. It would restore my appetite, improved bowel movement, and I recovered. However, in March 2007, the US FDA took the medication off the shelves with no prior warning. I had no time to try other medications and developed anal fissure again. This time, the fissures healed, but the pain increased. I again started, the by now familiar, routine of going from one doctor to another. In the hope of some relief. But they would find no pathology and ultimately the assessment was that the pain was in my head.
By May 2007, I was bedridden, unable to walk or drive a car. Given the doctor’s assessment, the surrounding people believed I was making up the pain symptoms to gain attention. I could not work and had to switch to using disability insurance to get part of my monthly income. My wife ended our marriage in August 2007. The short-term disability was also over by then. They required me to file for long-term disability insurance where the burden of proving that I could not work was much higher and almost impossible for patients with the invisible illnesses like fibromyalgia.
With mounting financial burden from divorce and medical bills, I negotiated with my employer to work from the bed. After a few months, I developed neck and hand pain possibly because of working in a bad posture. Eventually, the pain was severe enough I had to leave the job and substantially cut back on my daily living expenses to survive on my savings.
In May 2008, I had pain spread throughout my body. My primary care doctor referred me to a pain management clinic where they finally diagnosed with fibromyalgia.
How does it feel to be a man with Fibromyalgia?
One word: invisible. Doctors don’t expect nor believe it. I keep having to remind my GP that I’m in chronic pain. The worst bit is looking ok but feeling terrible. People cannot get their head around me being 6 foot tall and broad shouldered but being as weak as a kitten. Consequently I help people out when I shouldn’t.
On the whole I don’t know whether it would be much different to being a woman with Fibromyalgia, except I escape the difficulties associated with giving birth and likely aggravation of pain at other stages of a woman’s life. The main thing is that we get hardly any press coverage. It makes a much more shocking headline to say “90% of those with Fibromyalgia are women!” rather than the 10%. The last year or two has seen a gradual increase of awareness of mental health in men, but again the focus is usually girls and women. I guess the hardest thing is being a dad with Fibro. Carrying my daughter causes huge shoulder pain, playing on the floor gives me back pain and some toys/games hurt my hands if they need a certain amount of dexterity. It was much worse, psychologically when I had a “normal job” because I felt the self-imposed burden of providing for my family. Stress, pressure and deadlines used to leave my in distressing levels of pain. Since leaving traditional work, I focus on keeping the house vaguely clean and tidy and other stay-at-home parent tasks. My wife provides for us financially. I think being a man and dad with Fibro will become harder if NJ (my daughter) wants to do more physical activities like ball games, where a non-sick dad could excel. Thankfully my wife will step into that point, but I’m sort of dreading NJ going to school and hearing stories of what other kids do with the males in their family and knowing I can’t. I will try to do alternatives but I know it won’t be easy.
What advice would you give to another man who suspects he has Fibromyalgia?
Educate yourself. Thanks to the Internet, you can look at video lectures on basic medicine and understand, at least the anatomy. That will help you look at your daily habits and see if you can ease the pain. No healthcare professional will have the time to look at your daily life. More awareness of yourself would probably provide you with some solutions that can make you functional. For example, since I have been bedridden for months at a stretch, I learnt to do upper body exercises in a horizontal position to maintain the muscle mass and hopefully reduce a proliferation of trigger points on the neck and shoulder.
Play defensive in your finances – in most cases, fibromyalgia, or any chronic disease will impact your ability to work. The double whammy of the medical bills and the reduction in income can create a vicious feedback loop which can destroy your relationships and force you into poverty (Been there, done that). So this is a good time to review your disability insurance (for USA readers). Also look at health insurance facilities, flexi work arrangements that your employer may offer. In my experience, it is better to have a lower paying but stable job, then a higher paying but temporary job. The reason is that a job is usually brings along the side benefit of health insurance which can prove very critical to your financial well-being.
Fight hard, take no rubbish from doctors, change doctors if needed and protect and guard your mental health. If you don’t get depressed, you are mad. Don’t have kids. Be prepared to lose most of your friends and possibly your main relationship. Forget conventional medicine. It can’t, won’t help. Get on Twitter and find a community with understanding and knowledge of Fibro.
- 1. First, do whatever it takes to get a diagnosis – regardless of whether it’s Fibromyalgia. You can’t properly tackle a problem without first knowing what that problem is.
- Next I would say, it is not a sign of weakness asking for help; medical help, physical help with tasks, doing fewer tasks each day. It is very hard to fight this thing alone.
- Don’t give into the thoughts of “But I should be able to…”. Fill in the blank. “Should” takes on a completely different shape when you have a chronic illness and the sooner you accept that, the easier it will be, and the less you’ll make your own pain worse. If you’re in employment, speak to your employer about your illness. Explain you want to do your job well, but you have new challenges in doing so. Work with them and them with you so that you can carry out your duties, while minimising the chance of crashing out with days or weeks of sick leave.
- Learn to listen to your own body: if you realise the thing you’re doing is making you hurt more, then stop as soon as it’s possible to. Pushing through, for me, usually leads to much higher pain later that day, or losing the next day. The ‘experts’ call it pacing. Set yourself reasonable tasks and deadlines. Eliminate concrete deadlines where possible.
- And lastly I’d say find a way to connect with other sick people – Twitter in particular has been a saving grace for me. Both for such connections but also for raising awareness of Fibro with others.