What It’s Like to Be Me With Fibro Fog
I’ve had Fibromyalgia for more than thirty years. When I was first diagnosed with my symptoms, they called it Ankylosing Spondylitis (A.S.), a “young persons” arthritis. The symptoms of Fibromyalgia matched remarkably well with A.S.
Over the years the types of pain and malaise have waxed and waned and even changed over the years. I have new pains mixed with the old as well as non pain symptoms develop.
More than thirty years later, my pain can be described like having the dull, aching flu-like symptoms throughout all the soft tissue in my body. This causes some of my joints to ache as though I had arthritis.
I also have muscle spasms throughout my back unless I take muscle relaxers then I just feel the sensation without my muscles contorting.
The symptom of Fibro Fog is, as far as I know, unrelated to the pain and just another menacing symptom. The problem for me talking about Fibro Fog first hand is that I don’t know if I am leaving details out or not, because part of fibro fog is memory loss.
When I was correctly diagnosed with Fibromyalgia about ten years ago, I did not have fibro fog. When I did start complaining about fibro fog symptoms, my doctors blamed my symptoms on the drugs I was talking. The number one offender being narcotics.
As time went on, I started to notice certain patterns of fibro fog which included memory loss. This memory loss was unique because of events that I knew I should remember but couldn’t. I wanted to say a word and I knew what the word meant and why I wanted to use it, but I couldn’t remember the word. I could even describe the word yet I could not recall the word itself.
I then started having short-term memory loss. I started to learn early on to write questions on paper when I went to a doctor appointment so I wouldn’t forget the questions. I would take notes during the appointment so I could remember what the doctor said.
In spite of what the doctor would say about my memory and it being the side effect of the drugs I was taking, I persisted in pushing them about the memory issues. I had a feeling it was somehow related.
I read a few articles on fibro fog and changed my approach with the doctors after they still denied fibro fog was a symptom. I would ask very specific questions about my memory and could that specifically be related to the drugs. More often than not, they would say that the drugs shouldn’t affect me that way. It took a couple of years for the doctors to admit to fibro fog.
Meanwhile, I felt like I was slowly losing my mind. Somewhere along that time frame one doctor suggested taking up a hobby. Physical hobbies are difficult for a fibro patient to do. After several months of being badgered to pick up a hobby, I decided I would get back into studying history. I’ve always enjoyed history from grade school on.
I got a few history books from George Washington to Abraham Lincoln to WWII and a couple of general history books. I decided I wanted to devote my study to the North African and European part of WWII. I have read more than twenty books to date on the subject with about twelve more books waiting to be read.
Having a hobby didn’t seem to help my memory issues at all. I got involved with WWII history groups on FaceBook and started to write a little about what I new. This was enjoyable.
It did bring some joy into my life but didn’t really help with my fibro fog. I would start to have my back pain flare up and then radiate from my lower back to my neck and knees and realize I was four hours late on my pain meds. I would get up and go to another room where I keep my pain meds. I looked around the room while in pain and forgot what I was looking for.
After a degree of frustration I would go back to my recliner and then the pain would remind me, “oh ya, I need to take a pain pill.” I went back into the other room and forgot again what I was doing. After a couple of minutes I would realize I was looking for the pain pills.
How can I have bone crushing pain, because I was late with my pain pills, and then forget that I was looking for them? Amazing.
Many times I have been in mid sentence only to forget what I was talking about. My fellow conversationalist would remind me what I had just said and sometimes I would go on with my conversation while other times I would say “I forgot what I was talking about.”
This happened at the doctor’s office more than once and finally I had enough presence of mind to say, “this is it, this is what I am talking about right here. I don’t know what word comes next.” My doctors finally started to accept the idea of me having fibro fog.
My fibro fog has improved a little and I’ll tell you how that happened in another post. Sadly though, in spite of some interesting therapy, I still suffer fibro fog.
Troy Wagstaff ©