When even wearing clothes hurts your skin

Susan Njoka shares her journey battling fibromyalgia. 

Two years ago, Susan Njoka's health did not concern her much. She was in excellent health. But then things began changing gradually.  

“I started noticing that walking to the stage, barely 200 metres from my house, was becoming extremely exhausting,” says Susan.

A doctor prescribed some vitamins and recommended that she rests. But that didn't improve anything. It got to a point that even sitting down became a problem.

“My hips and ankles hurt so bad that I decided to seek another doctor’s opinion,” she says. The doctor did some tests and concluded that she was suffering from rheumatism, and was sent to see an orthopaedic surgeon.

She was also given some medication which significantly reduced her pain and improved her mobility.

“My orthopaedic surgeon said that my knee cap was wearing off. I had no idea why this was happening, but I was put on 50-day medication for that,” she recalls. 

But still, the pain persisted. "At some point, I could not even lift a cup of tea; my joints were swelling and deforming. One of my fingers completely moved to the left, I had no idea why,” she says.

Susan went back to hospital to find out what had changed. And this time she had 27 tests run on her to determine exactly what the problem was.
She tested positive for rheumatoid, and was put on treatment. After a year of taking the medication with nothing much changing, she sought another doctor’s opinion. 

“I had moments when my own clothes would hurt me,” Susan says. At this point, I would get bumps on my joints and swelling on my fingers. The pain was still there and I was now spending about Sh10,000 per week on medication. And whenever it would run out, the pain would come back. She then sought yet another doctor’s opinion who did several tests and ruled out everything but fibromyalgia.

According to Dr Eugene Genga, a rheumatologist, fibromyalgia, is a rare condition characterised by widespread pain and extreme tenderness in many areas of the body, can also cause fatigue, sleep disturbances, headaches, and mood disturbances such as depression and anxiety.

Having been diagnosed with fibromyalgia, Susan was taken off the old therapy and onto a new one. 

“I got on a different set of medication and that seemed to improve my condition. I even stopped going to the doctor every two weeks to once in three months,” she says.

Dr Genga says that there isn’t one particular test that will diagnose the disease and also the exact cause is still unknown as no specific physical cause has been found.

“It’s thought that as many as one person in every 25 suffer from it. It is more common in women. It is the most common cause of generalised musculoskeletal pain in women between 20 and 55 years,” he adds.

HYPERSENSITIVITY

People with fibromyalgia, the muscles and tendons are excessively irritated by various painful stimuli. This is thought to be due to a heightened perception of pain, a phenomenon called "central sensitisation." Due to this central sensitisation it also causes problems with sleep, digestive system, chronic fatigue, chronic bladder pain among others.

“A plausible cause may be genetics as those with a parent or sibling with fibromyalgia have a higher chance of developing it themselves. Various stressors, including infection, diseases that involve joint inflammation (for example rheumatoid arthritis or systemic lupus erythematosus), physical and emotional trauma, or sleep disturbances appear to trigger the development of fibromyalgia,” Dr Genga adds.

Susan says this condition has also affected her memory.

“I sometimes forget that salt is not meant for tea, the brain just fails to register the proper way of doing things,” she explains.

She now has to watch her diet and eat foods that do not have inflammatory effects on her muscles.

“I eat vegetables, fruits, and avoid red meat, eggs and milk. “I also try and do about 6,000 steps a week, however I do not push it when I feel like I am struggling. It is okay to take a break.” 

Despite the numbing pain she experiences sometimes, Susan has managed to keep up with work and even win accolades. 

"I am in real estate and not confined to a 8am-5pm work schedule. My employer is also very understanding about my condition, and when I am feeling well, I give work my all. And my team has been feted for surpassing company targets," she says proudly. 

Susan has also joined a support group that helps her cope with the condition. Together they have been lobbying the Senate committee in charge of health for inclusion of the condition, as well as the medication needed, in the National Hospital Insurance Fund (NHIF) cover. 

“Due to Covid-19, the process has been shelved but we have the committee's approval for this process to move forward,” Susan affirms.