When Fibromyalgia Makes Me Feel Like a Prisoner in My Own Body

A friend once said, “Receiving a diagnosis that has no cure is like receiving a death sentence and you have no idea what crime you have committed to receive such a harsh sentence.” It is so with fibromyalgia.

• What is Fibromyalgia?
• What Are Common Fibromyalgia Symptoms?

It is this winter I really discovered that I am a “prisoner in my own body.” The central nervous system is the warden and the nerves, muscles and tendons are the guards that keep knocking at the gates of the prison when they feel like it. They run the batons across the body causing aches, pains and throbbing at the slightest exertion or emotional distress.

Living with fibromyalgia is confusing and frustrating. From the moment I open my eyes I scan the whole body to figure out which part is aching today. This helps plan what I can achieve that day and I stick to two activities and a shower.

Over this last part of winter the reality of being imprisoned became a fact I had to accept. I have been suffering headaches – sinus and cluster headaches. My body keeps quiet as if it’s making me aware the proverbial is about to hit the fan, like the stillness before the storm. In the middle of the night I wake up with the pounding headache. The pain causes my temples to throb and pain seems to shoot through one eye and the sinuses start aching as the inflammation decides to go to and fro. My neck muscles will tense and at times seem to stretch against the tightness. By then I am praying please do not go to the back of the neck. This is the worst pain to go through as it slowly goes down the spine into the lower back and the sciatica.

I reach out for naproxen at least once a day because it will get rid of the “itis” – the inflammation of the sinus. I rub Vick’s on my chest, nose and forehead to ensure all bases are covered. After a while I reduced the naproxen I was taking as it would easily affect my stomach. I have a duodenal ulcer. Another side effect was it causes respiratory issues. I wake up in the middle of the night and sit up and sleep to ensure that I get enough air. The lack of oxygen then triggers a headache or one can simply slip away as they struggle to breathe in their sleep. I am not ready to go just yet. They say apnea is one of our many problems.

After getting frustrated with popping naproxen, I started using acupressure methods to relieve my headaches. For the temple throbbing I use Vick’s and rub my temples for one minute clockwise and counterclockwise. This gets the circulation going and relieves the pain. For the sinus headaches I place my forefinger and my third finger and gently press just below where the eyebrow begins and it relieves the pain. I massage under my eyes where the other sinus aches are clambering for attention. I will warn you, be careful as I have broken my skin in frustration and looked like I had been hit by someone.

I cannot go out because it is too cold and my mobility is compromised by stiffness. I also get phantom flu symptoms and colds at the slightest change in weather. If you understand this, you understand the challenges of cabin fever. I need to walk daily and after two days I force myself to walk. The reality of my prison came not only from the mobility but our lift is out of commission for two weeks. I live above the shops and it means going down 59 steps and coming up the same 59: a total of 118 steps. This triggers all sorts of pain in my lower back combined with tight muscles and creaky knees, not to mention Achilles tendonitis. So going down is not easy. And why am I going down? I have run out of bread or milk, and I don’t do UHT!

During this period our housing association offered to put up those of us with disabilities at the Premier Inn. I had a panic attack at the suggestion, as with many people with fibromyalgia, safety is so important for us. The thought of being locked in a hotel room with the space being only the bedroom and bathroom had me say no. I know where everything is in my house even when it is messy and most importantly where my medication is. My neighbors have been pretty cool, taking my bins down and even shopping for me. My greatest fear is hurting my body if I go down to get fresh air. How long can you live in a flat?

Every time I feel claustrophobic and have to leave the house I go down one floor and walk in the communal space. I hate feeling caged and a caged animal is not the prettiest as it fights for survival.

So here I am stuck in the house for another month until the lift is complete. I keep editing my book, but I do realize loneliness and being caged is hard to deal with. Losing three to four days a week is like living half a life.