Whoopiee! It’s time to talk about pain again! I try to avoid the subject as much as possible, but Chronic Pain is such a big part of my life, there are times when I HAVE to talk about it, or I’ll lose what little there is left of my mind.
The fact of the matter is, I am struggling to get through each day, and finding it increasingly difficult to cope. The pain occurs more frequently and with longer duration, and is at a higher level of intensity than ever before. Not only do I have to tolerate headaches that last for MONTHS (with only a week to 10 days of relief between episodes, if I’m lucky), but I’m also experiencing a lot of pain from the Fibromyalgia. The herniated disc in my cervical spine is really bothering me, as well. My neck and shoulders are killing me, and the nerve compression in that area causes me to have pain in my arms and hands. My legs and feet hurt, too. Oh yeah, I also have Degenerative Disc Disease, quite a bit of arthritis in my spine and knees, Irritable Bowel Syndrome and a blood disorder.
And let’s not forget the fatigue! According to the website I linked above, “the fatigue of FM is much more than being tired. It is an all-encompassing exhaustion that interferes with even the simplest daily activities. It feels like every drop of energy has been drained from the body, which at times can leave the patient with a limited ability to function both mentally and physically.” When you add the meds I’m taking (all of which list fatigue as a side effect) to that mix, well, most days I feel like a zombie. It’s a wonder I’m able to function at all.
I had to see my Primary Care Physician on Wednesday to get a renewal on my referral for the neurologist. While I was there, he brought up pain management. I went that route a few years ago, but, after two injections in the cervical spine with no relief, I stopped going. I had to take time off from work to have those injections, and the unsuccessful treatment just didn’t seem worth the trouble I had to go through to get them. Plus, after 30 years of searching for relief, I get discouraged more easily. I no longer believe that anyone is going to do anything to help me, so why keep beating my sore head against that brick wall?
However, my doctor convinced me to give pain management another try. He said I am probably right to give up on a cure, but I shouldn’t give up on getting some relief. I really can’t go on living like this, so I guess it is worth giving pain management another shot.
In the meantime, I found myself desperate for support, information, compassion and understanding, so I joined an online support group – “Intractable Pain & You.” It is managed by a psychotherapist. I’ve only been there for a short time, but have already received an abundance of what I went there looking for. Maggy, an RN, explained depacon IV therapy to me. Depacon is an anti-seizure medication that is also used to treat headaches. My neurologist is hoping to break the cycle with the IV therapy.
Wayne shared his own experiences with unusual headaches, and said his doctor suggested that he pack up and leave his lovely home in Kauai (after he and his wife sold their house in Minnesota and two cars to get there), and move to either of a couple of places on the west coast where they have "wonderful headache centers." That kind of thing boggles the mind. Would it not make more sense for physicians all over the nation to gather information from those "wonderful headache centers," and perhaps learn something from the specialists who operate those clinics so that many more suffering patients can be helped?
Wayne also refers to his headaches as head PAIN. I can really relate to that because I often say that my problem is not exactly a head ACHE. Sometimes my head does throb, as with a normal headache, but most times it doesn't. It just HURTS. The location of the pain changes from day to day. It can be at the lower back of my head, or it can be on top. It can be on one side or the other (more often, it is on the left, and that side of my face gets numb). It can be in the forehead area. It can be in all of those places at the same time.
These headaches make my head feel black and blue, and my scalp is sore to the touch. My head feels swollen. These headaches create a change in my sense of taste. These headaches make my life a living hell. And not just because of the physical pain. There is also emotional pain.
The following was posted to the support group. It speaks for so many of us who live with chronic pain. Please read this if you want to understand the inner torment we have to endure, on top of unremitting physical pain. Please read this if you want to understand ME.
SOMETIMES,THE THINGS THAT HURT THE MOST AREN’T PHYSICAL
written by V.R.Steffani
Whether you are a sufferer, supporter, or novice to “Chronic Pain Syndrome”, you DO know emotional pain, so you will be able to empathize.
Everyday, in addition to the physical pain, I work through any number of these mental attacks. (These are sometimes exacerbated by medications, sleep, or lack of it, hormones, pain levels, and concern for loved-ones, PLUS, the physical factors!)
I know the pain of GUILT.
Of course it’s not logical, but I feel guilty for being “weak;” I feel guilty for all the things I Could/Should or Would be doing.
I live with the pain of LOSS.
Old and new, including the loss of myself: the person I USED to be, the plans and dreams I used to have, the things I took for granted.
I know the pain of UNCERTAINTY.
When will this physical condition be resolved? Will it ever be resolved? Should I resign myself to this condition? When, and how will I know? Can I ever be SURE again?
I live with the pain of FEAR.
Constant fear of pain, fear of the unknown, the “what ifs,” fear of pain/disability WORSENING, fear for the future: finances, relationships, careers, hobbies, fear of being in pain, or on pills, for the rest of my life.
I feel the pain of unresolved ANGER.
Anger at “the cause” of this Chronic Pain - whether known, or unknown, anger at the time, money, energy, and opportunities lost to this invisible thief, anger at myself for not being able to overcome this.
I cope with the pain of FRUSTRATION.
I’m frustrated by the daily reminders of things I can’t do anymore, things I’m afraid to do now, things I used to do with ease, things I was GOOD at, frustrated every time I have ask someone to help me with things that I could do better - once.
I live with the pain of ISOLATION.
I’m lonely 24-7, even in a crowd, because I’m the only one that can totally feel all that Chronic Pain has done to me; when people ask me what happened, but “see” weakness, regardless of cause, when I am completely unable to express myself without sounding pitiful or bitter, obsessive or crazy, when the ONLY people that TRULY understand are part of my life via internet, and are in horrible, unending, unpredictable, Chronic Pain themselves.
I know the pain of IGNORANCE.
Because the public is largely uninformed, and CP is a relatively new field of medicine, I constantly have to explain, describe, defend, or justify everything I say, feel, or think, and even then, I feel I have to apologize for the “inconvenience” of this THING called Chronic Pain, that I know I didn’t cause and can’t control.
I know the pain of unfair.
Song of the Day: Everybody Hurts by R.E.M.