One morning in 2003 I woke up in so much pain that breathing was difficult and turning my head impossible. The doctor diagnosed me with Fibromyalgia...gave me anti inflamatory and pain injections...and sent me home with a prescription for Trepilene and Azor. At the time he told me that there is no known cause and no known cure. It was something to live with. Lekker ne!!
For many years I just "lived with it". Using the whole mind over matter method. If I didn't mind it didn't matter. I got up each day, ignored the constant aches and chronic head aches and just continued with my life as usual. I believe I have a high pain threshold. Ever so often there would be a major flare up and I would experience "flu like" symptoms. My muscles spasms would then be so bad that the inflamation would make me feverish and I would have to go for injections and stay in bed for a few days. Those were the days when I wanted to just curl up and die. It is a chronic pain syndrome that eats away at your joy and steals days out of your life.
I tried everything. Food supplements, special diets. I visited chat rooms for fibromyalgia sufferers. You name it...I did it. Then three years ago I was just plain fed up. I have had enough of constant pain and I wanted it resolved...NOW! So I made an appointment with a Rheumatologist and had to wait for nearly six months to get an appointment. (Seemed that my NOW wasn't going to happen and that I am in the wrong business :-)
She first put me on Lyrica (an anti seizure medication with pain blocking properties)and I had awful side affects, so three months later she had me try Cymbalta (an anti depressant with pain blocking properties). After 5 months on Cymbalta I could still feel no improvement in my pain levels. So I stopped. Cold turkey! The withdrawal symptoms were awful , I was argumentative and not easy to live with. That my husband didn't divorce me is simply a miracle. It was fibromyalgia 2: Lynette 0.
My next move was to see a neurologist. I insisted that there must be something wrong with the discs in my neck as it felt as if most of my pain and head aches were radiating from my neck. A MRI and electromyogram later the Neuro sat me down and told me that "it is what it is". Making peace with it is what I need to do and he needs to find me the pain blocker that would work best for me. He then prescribed a schedule 5 pain medication (Tramacet) that I needed to take every night with the Trepiline and Azor, as it would also act as a pain blocker. It worked. Six months later I was relatively pain free.
I want to share with you what I learned during my journey. What worked and what didn't.
- DO see a specialist i.e. a rheumatologist or neurologist as soon as you can after being diagnosed. There is a pain blocker out there...they just need to find the one that works for you.
- DO NOT...I repeat...DO NOT...go into chat rooms or forums with other fibromyalgia sufferers. If the pain doesn't make you depressed, the chat rooms sure will.
- DO NOT spend a fortune on supplements. They don't work. The only supplement that I found helpful was Magnesium. It helped with muscles repair and when taken before bed time, will help you sleep. A vitamin B and B12 injection will help with the energy levels.
- DO get serious about quality sleep. The pain tends to affect your sleep patterns. The medication (like Trepiline, Azor and Tramacet) will help you fall asleep. If you are a light sleeper get some wax earplugs and cut them to a size that feels comfortable in your ears. That way your partner's snoring or other noises will not disturb your sleep.
- DO NOT stop exercising. If you aren't exercising... start slow. I have found immense benefits from a brisk walk each morning. It cancels out the lethargy brought on by the medication and the endorphins makes you feel good and acts as a pain reliever. You will also strengthen your muscles and the spasms would be less painful.
- DO laugh more and have fun. I met a woman a while back that have gone into mourning about her health...that just makes me depressed hearing it. DON'T stop living.
- DO NOT use fibromyalgia as a way of getting out of activities. That makes you a victim. Rather do as much as you can when you feel good. You often underestimate your capability.
- DO NOT stop taking your medication as soon as you feel better. I learned this the hard way. You are not cured...the pain is simply blocked. If you stop taking your medication you WILL wake up with an elephant sitting on your chest and it will take you many months to gain the ground you have lost.
- DO take up a hobby. All work and no play...and all that. We live in a stressful world and stress worsens your condition. Be creative, play a musical instrument, play a sport, sing, dance...do something that makes you happy and reduces your stress levels.
- DO not overdo things when you feel well. You will pay the price for it the next day.
- DO NOT allow negativity into your life. That includes unsupportive doctors.There’s no room in your life for a physician, friend or co-worker who thinks fibromyalgia syndrome is all in your head. That just makes you feel foolish and guilty for being sick and increases stress, which is a pain trigger.
- DO listen to your body. Take time out when you need it.
- DO NOT forget to always take a jacket or sweater with you where ever you go. Cold makes your muscles tense up and can send you into a downward spiral.
- DO NOT underestimate the value of a good massage. I will do wonders to your body and your soul.