I have a condition called Fibromyalgia and was diagnosed with this 20 years ago, this was 11 years after being diagnosed with Rheumatoid arthritis and Osteo-arthritis.  I was only 22 when first diagnosed with Osteo arthritis and had just given birth to my first son.  For a long time I thought it was something that time would take care of itself and that I would get better.  I never did regular exercise although I certainly wasn’t incactive with a newborn baby and then twins a few years later when I was diagnosed with rheumatoid arthritis.

Now don’t get me wrong bone pain is terrible.  When your neck, back and knees hurt life can be difficult, and doctors will send you to physiotherapy, tell you to lose weight and exercise regularly.  All these can sometimes help but sometimes it just makes you hurt all the more.

Fibromyalgia (FM) is a pain on a whole new level!   It is not caused by inflammation, taking my (or your) arthritis medication will not help me, it is not bone pain, it is pain in my muscles and nerves all over the body.  I can’t work my pain out or shake it off, and exercise will not make it better neither will losing weight.  It’s not even a pain that stays in one place but travels all over my body.  Today it is in my shoulders, neck and arms but tomorrow it may be in my feet, legs or gone. One of the worst pain can be just the skin, when even just the lightest touch by one of my babies could have me crying in pain or my husband trying to give me a soft massage to help with my arthritis pain can have me screaming with agony.   My pain is said to be caused by improper signals sent to the brain, possibly due to sleep disorders. It is not well understood, but it is very real.

FM means that I have chronic fatigue, I am not merely tired, I am often in a severe state of exhaustion, so much so that I can fall asleep while sitting on the toilet!  I may want to walk the dogs or do a little gentle exercise, but I can’t.   If you saw me out and about yesterday,  but I can’t help you with housework today, or help with looking after your children.  it isn’t because I don’t want to so please don’t take it personally, I am, most likely, paying the price for stressing my muscles beyond their capability.

FM means that I can be extremely forgetful,  those of us who suffer from it call it fibrofog.  I may not remember your name and get it wrong a couple of times before I get it right or I may not get it right at all but I do remember you, I may not remember everything we’ve done together or what I’ve promised to do for you, even though you told me just seconds ago you may have to tell me several times before something gets in my memory.   My problem has nothing to do with my age but may be related to sleep deprivation and medication.  I do not have a selective memory. On some days, I just don’t have any short-term memory at all. However much it upsets you when I forget something you’ve said to me, believe me I have to live with it all the time and it upsets me a lot more.

FM has granted me with intolerance.   I can’t stand the heat or humidity.  I sweat profusely which is very embarrassing when i’m with others, so please don’t feel compelled to point this out to me believe me I already know.  and don’t be surprised if I shake uncontrollably when it’s cold. I don’t tolerate cold either. My internal thermostat is broken, and nobody knows how to fix it.

FM has also been kind enough to give me clinical depression.  Yes, there are days when I would rather stay in bed or in the house.  Severe, unrelenting pain can cause depression. Your love, tolerance and understanding can keep me sane. Your snide remarks or telling me to pull myself together can tip me over the edge.

FM means that my body does not handle stress well.  If I haven’t worked since you’ve known me, it doesn’t mean that I have never worked or that I don’t wish on a weekly basis that I could work. What it does mean is that I have given up working because I cannot do it. I am not lazy! Everyday stresses make my symptoms worse and can incapacitate me completely.

FM does allow me to have some good days, if you see me smiling and seeming to  function normally, don’t assume I am well, I will pay for it either later that day or in the following days.  I suffer from a chronic pain and fatigue illness with no cure.  In fact, the good days and my loving family are what keep me going.

We are all unique and people who have FM are still just as unique in their FMness. That means others may not have all of the problems mentioned above or they may have other problems that I have not covered, but all who suffer with FM  have pain above and below the waist and on both sides of my body which has lasted for a very long time. I may have migraines or hip pain or shoulder pain or knee pain, but I do not have exactly the same pain as anyone else, my pain is not your pain.