Living with Chronic Fatigue Syndrome

Even before we got married, my husband and I knew that something was wrong with him. He had gained about 40 pounds in two months; he was exhausted to the point of not functioning; he had almost constant ear aches and sore throats; he was tired, but couldn't sleep; and his joints and muscles ached like he had arthritis. And he was only 27 years old.

In fact, he had just embarked on a long journey of diagnostic possibles. Maybe he had rheumatoid arthritis; maybe he had Epstein-Barr disease; maybe it was diabetes; or dysfunctional thyroid; maybe a rare form of cancer, even. The whole process was draining, time-consuming, and expensive. And we never got an answer.

And all that time, he continued working. There were days he was so out of it I don't think he knew his own name, but he went to work, and actually did his job well. I had friends with fibromyalgia, and I started telling him that his symptoms sounded very much like theirs. Doctors, however, are very reluctant to consider a 27 year old male for fibromyalgia. That is usually a diagnosis of a middle-aged female.

My husband has Chronic Fatigue Syndrome. Or, as it is called now, Chronic Fatigue and Immune Dysfunction Syndrome, or CFIDS. The guesses of fibromyalgia and Epstein-Barr were close, as some doctors believe there is a common link to these illnesses. Some of the symptoms of CFIDS are:

• Headaches of a new type, pattern or severity
• impaired memory/concentration
• Muscle pain
• Pain in the joints, without swelling or redness
• post-exertional malaise and fatigue
• Sore throat
• Substantial impairment of short-term memory or concentration
• Tender armpit and/or neck lymph nodes
• Unrefreshing sleep
• Weakness and exhaustion, lasting more than 24 hours, following mental or physical activity
• Panic attacks
• Allergies
• Depression
• insomnia

Aside from these devastating physical symptoms, one of the hardest things for CFS sufferers is that they do not look sick. They look tired; they look uninterested; they certainly look uninvolved; they don't remember key details; they don't remember what you said two hours ago; and they aren't interested in going to a party, out shopping, or a walk in the park. Doctors, friends, and yes even spouses can make someone with CFS feel even worse by thinking that the suffering must be all in their heads or even a personality disorder.

So it was hard for me in the beginning of our marriage. Suddenly, I had a husband who was a stranger to me. He didn't speak much. He didn't ask many questions. He was tired, short-tempered, irritable, and forgetful. Some of the time I remembered that it was his illness. But we didn't even have a diagnosis then. Most of the time I just thought he was bored with me, or even disliked me.

Over the last three years, we've discovered some things that help. I think every person with Chronic Fatigue Syndrome responds differently to the treatments that exist. Chronic Fatigue Syndrome is a diagnosis of elimination. Once doctors have run every test they can think of, and prescribed lots of different medications, and you still don't feel well and have all the above symptoms pretty much all the time, you get your diagnosis of Chronic Fatigue and Immune Dysfunction Syndrome. And then they tell you that there is this treatment that seems to work sometimes. And another experimental treatment that works some of the time in other people. And so on.

Most of these treatment plans involve healthy living. Getting exercise, eating non-processed foods, getting enough sunlight, taking vitamin supplements, and having a support group are all important facets of living with CFS. Most CFS patients are also benefiting from medications for pain, or insomnia, or depression.

In my husband's case, he discovered kind of inadvertently that he felt much better not eating wheat gluten. That led us down a path of gluten free eating. We learned that several CFS and fibromyalgia sufferers have had success in going gluten free. This makes difficult to eat convenience foods or processed foods, so we are eating healthier. I even bake gluten free bread, crackers, and on occasion, brownies.

I'm not saying that going gluten free will work for everyone with CFS. But it has definitely worked for my husband. He lost about 50 pounds, and feels a lot more energy. He can hold a conversation after work and we are rediscovering his sense of humor. But as anyone with Chronic Fatigue Syndrome knows, this illness cycles back and forth. So at any given time, I might be parenting solo again. I have to keep in the back of my mind that if I make plans for two weeks away, I might not be able to count on him feeling well enough to participate. I have to expect that he might cancel a date night I've pulled nails to get a babysitter for.

Dealing with your spouse's depression, pain, anxiety, and malaise is so painful and difficult. Picking up the slack with a cheerful heart isn't easy either. And letting him back in when he is feeling better takes some practice. So if you are the spouse of someone with a chronic illness like CFS or fibromyalgia, it's good to have some support for you too.