FM pain makes me think and the old belief that Eskimos have a huge number of words to describe the different types of snow. That actually is not true. What is true, though, is that the English language is inadequate when it comes to describing the many different types of FM pain.
In order to deal with what was going on and describe it to my wife and doctors, I had to come up with my own vocabulary. I will use that here to describe the various types of pain I experience, but keep in mind these are my own names for them.
FM pain is strange and diverse. The singular distinction is that it is always changing. You can not always differentiate FM pain from real pain, since it so closely mimicks real pain. There is one certain tell. FM pain does not usually resolve itself in terms of lessening over time. In real pain, as the problem heals, the pain diminishes. For most fibropain, it turns off like a light switch. You can be in incredible agony one minute, and fine the next. If it has been going on for awhile you'll probably have sore muscles from tensing up from the pain, but one second you can be in so much pain you can't move, and the next second it is completely gone with no residual pain or soreness.
I should mention here that most of my pain issues are better using Savella. While I have pain every day, it is more tolerable and less intense in general. There are fewer days when the pain is so bad I can not get out of bed. It can still get bad, can still be debilitating, but overall, I am less debilitated by the pain than I was before taking Savella.
Like all my symptoms, none of the pain sensations are constant. They come and go of their own accord. They may last seconds, they may last days. On rare occasions I will get multiple types of pain at the same time, but usually they took their turn.
Here are some of the more unusual pain types I get and the names I use for them:
Stabbies- Stabbies are what they sound like- the sensation of being stabbed. They are surprisingly vivid, in that I know exactly the diameter of what I am feeling a stabbing sensation of. There is the bee sting. The needle. The toothpick. The skewer.
These were some of the most common pains I felt before going on Savella. I still have them, but they are very much decreased in frequency and severity. Whether that is the changing nature of the syndrome or a result of the Savella, I can't be sure.
The stabbing sensation can happen anywhere, and it can be singular or in a cluster in different places. Sometimes it repeats in the same place, such as the sensation of being stabbed in the thumb with a toothpick over and over again. This can last for several minutes. You learn over time to not react to these pain sensations, otherwise you become twitchy.
The main difference for me between really being penetrated by a foreign object and the FM version of it is that there is no resolution of the sensation. I feel the penetration only, but then it is gone. There is no sense of there being something still there. No continuing sense of pain. I get the stabbing sensation and then it is gone, as if nothing had happened.
Touch Pain- This is one of the worst symptoms of all, even though it is difficult to describe it as pain exactly. This and the stabbies are the two pains that seem to have been most reduced by Savella for me.
Touch pain is less pain in the normal sense than it feels as if your brain is being overloaded. When my wife touched me, it was profoundly unpleasant. That sensation of being touched flooded my brain, overwhelmed me, was too much. It is difficult to even find words to properly describe it. A hug was unbearable. How do you tell your wife you can't stand for her to hug you?
Clothing could touch my body and that was okay. The pressure of my body against a chair or the bed was fine. Try to hold my hand or put your arms around me and I was overwhelmed by a flood of sensation that was more than I could handle.
Burnies- Just what you might imagine- a random area of skin feels as if it has been burned. This is not the sensation of being burned, but the hypersensitive feeling burned skin has to being touched. This area of skin, usually just a few inches wide, has a very low level sensation of discomfort that is greatly magnified when it comes in contact with anything.
The Blob- This is just a large area of pain. I primarily feel it in my torso. It is just a blob of pain, not analogous to joints of muscle groups. It probably takes up about 30 percent of the torso area. It also moves, or drifts slowly. I may initially notice it on one side and it will drift to the other side, or move up to encompass the entire shoulder area. It is one of the most common types of pain for me now- annoying but not disabling. It seems like a living thing inside me moving about.
Big Indigestion- The burning unpleasant sensations of really bad heart burn, but often encompassing almost my entire torso. It moves in an unusual way in that it seems to fluctuate in size, getting bigger and smaller over time in the area that hurts.
These last two are the ones that put me out of commission. They are the most intense pain, and you pretty much do not get out of bed.
The Rack- It feels like I am being stretched out on a rack. The pain is continuous, and unlike in the final entry below, laying still offers no relief. The entire body hurts. Moving does make it much worse, though. I don't get a lot of sleep when I have the rack. It usually lasts days, and like the Vortex below, it is thankfully not very frequent.
The Vortex- This one is the most disabling, fortunately the most infrequent, and the most difficult to describe. Unfortunately it tends to stay for a few days. That is a problem as it is unbelievably, indescribably painful, the worst I have ever felt including when I had severe pericarditis. The slightest movement of my body is agonizing. I can barely breathe, taking in only slow shallow breaths.
Doing anything is impossible. My greatest desire was to get up and go pee. The other options I found unpleasant and a bit humiliating. So I tried. I forced myself to get up. The pain was so bad that I lost consciousness and fell down again. I had to give up on that hope.
There is some rather undignified screaming involved, so we have to make sure the house is shut up tight so the neighbors do not think a murder is taking place. The pain just elicits an animalistic response, a scream that seems to come from the most primitive part of the brain.
The only way to describe it is to think of a two foot sized hole in my back. When I move, it is if pain swirls through my body and is sucked down that vortex taking everything with it. It feels as if my very essence is being pulled into that vortex of pain. My entire world, my very existence, becomes all about that pain. When I stop moving the vortex slows and the pain lessens. At the time, it feels as if I may lose myself in the pain. It is the most horrifying thing I have ever experienced.
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