Coping with Chronic Illness

When it comes to pain, I don't know how to answer.

The question I can't answer is "what's your pain level?"

Where?

You want the pain level for my PHN? My legs? That nagging thing in my shoulder? How about my jaw? Or should I just average it out over my whole body?

It'd be easier if the nurse just handed me a diagram of my body and some crayons so I could color-code and maybe draw some lightning bolts and frowny faces over the spots where it really hurts.

Sharing your pain with laminated pain charts.

From beingmex3.tumblr.com:

This is what i did today. I made charts and laminated them so i can color each day what hurts and what the pain level is.

Its hanging on my pantry so my family can see it and i dont have to constantly be saying what hurts or saying i can do things. They can look at the chart. :P

I think this is absolutely brilliant. What a great way to communicate your pain levels and ability without having to constantly talk about it and be reminded of it. I think it would also help with any issues of giving or getting too much or too little assistance.

In my ideal world this would be computer-based so I could simply email it to my husband every day instead of my usual "this is how it is, fyi" email. I'd also like to be able to save the data for tracking purposes just in case it's needed.

Tips for dealing with people in pain.

Originally posted at Life In Pain (dot org), author unknown. Via Shauna's Life in Pain.

1. People with chronic pain seem unreliable (we can’t count on ourselves). When feeling better we promise things (and mean it); when in serious pain, we may not even show up.
2. An action or situation may result in pain several hours later, or even the next day. Delayed pain is confusing to people who have never experienced it.
3. Pain can inhibit listening and other communication skills. It’s like having someone shouting at you, or trying to talk with a fire alarm going off in the room. The effect of pain on the mind can seem like attention deficit disorder. So you may have to repeat a request, or write things down for a person with chronic pain. Don’t take it personally, or think that they are stupid.
4. The senses can overload while in pain. For example, noises that wouldn’t normally bother you, seem too much.
5. Patience may seem short. We can’t wait in a long line; can’t wait for a long drawn out conversation.
6. Don’t always ask “how are you” unless you are genuinely prepared to listen it just points attention inward.
7. Pain can sometimes trigger psychological disabilities (usually very temporary). When in pain, a small task, like hanging out the laundry, can seem like a huge wall, too high to climb over. An hour later the same job may be quite OK. It is sane to be depressed occasionally when you hurt.
8. Pain can come on fairly quickly and unexpectedly. Pain sometimes abates after a short rest. Chronic pain people appear to arrive and fade unpredictably to others.
9. Knowing where a refuge is, such as a couch, a bed, or comfortable chair, is as important as knowing where a bathroom is. A visit is much more enjoyable if the chronic pain person knows there is a refuge if needed. A person with chronic pain may not want to go anywhere that has no refuge (e.g.no place to sit or lie down).
10. Small acts of kindness can seem like huge acts of mercy to a person in pain. Your offer of a pillow or a cup of tea can be a really big thing to a person who is feeling temporarily helpless in the face of encroaching pain.
11. Not all pain is easy to locate or describe. Sometimes there is a body-wide feeling of discomfort, with hard to describe pains in the entire back, or in both legs, but not in one particular spot you can point to. Our vocabulary for pain is very limited, compared to the body’s ability to feel varieties of discomfort.
12. We may not have a good “reason” for the pain. Medical science is still limited in its understanding of pain. Many people have pain that is not yet classified by doctors as an officially recognized “disease”. That does not reduce the pain, – it only reduces our ability to give it a label, and to have you believe us.

Chronic Illness: It's a Winter Storm Every Day

Even with the best care and precautions, we can’t always avoid the storms of our illnesses.  There is no rhyme or reason to when the storms come and we always have to be prepared. 

Every task we do from the moment our feet hit the floor in the morning (if we can get out of bed), until we go to sleep at night revolves around trying to keep the storms at bay.  We always make sure we have extra medications, extra pain creams, extra remedies of some sort, to get us through the day.  We are always in fear of the dreadful bedridden days we have experienced, so we are extra aware of everything that sets off our symptoms. 

Read the rest at CFS & Fibromyalgia: It’s A Winter Storm Every Day

Measuring your pain and fatigue when they're chronic.

...That ever-annoying question that us chronic pain sufferers hate to hear:  “What is your pain level today on a scale of 1 – 10?”  I know that it is the therapists’ and doctors’ jobs to ask us that question, but they don’t realize how difficult that can be to answer.  For me, and for many of my chronic pain peers, trying to rate the level of our pain is like a ME/CFS patient trying to rate the level of their fatigue.  When you are exhausted all of the time, day in and day out, it always seems like the fatigue is bad.  When the pain is there all of the time, day in and day out, it’s hard to rate it and it’s hard to pinpoint exactly where it is coming from all of the time, too. [Source]

Wow, do I ever relate to that. The way I measure both pain and fatigue has changed since becoming ill. When I'm asked if something hurts I find myself thinking "it hurts less than my PHN so it's okay," okay, of course, being a relative term. As for my fatigue, I'm always tired, always exhausted, a good day is a day when I get out of bed despite the exhaustion.

It's particularly troublesome for me when it comes to measuring pain. Doctors need to know when you're in pain and how much pain you're having. This came into play during my lumbar puncture when I was told there would be a moment of pain, a "zing" going down my spine and down one leg, and that would be the moment the needle was in the right place so I should tell them. But I didn't recognize that moment. Sure there was pain. But there was less pain than I'm used to having from my PHN so at first I wasn't sure. Was it a twinge? Was it pressure? Was it that zing we were waiting for? It was and we finally figured that out. But I probably could have spared myself the second moment of pain had I been able to recognize it the first time.

Pain Awareness Month: Virtual March on Washington

September is Pain Awareness Month. Now, if you know me, you know I have pain. You've heard me mention PHN (post-herpetic neuralgia) and talk about flare-ups. You may have seen me wince, cradle my arm, and try to rub the pain away. You might know I've tried a long list of drugs (lidocaine, tegretol, gabapentin, oral steroids, cymbalta, amitriptyline, etc.) to combat the pain and that none of them work. And you probably know how I had to stop working and take leaves from school because I simply couldn't function through the pain and its effects.

What you might not know is how many people are out there dealing with their own pain. The American Pain Foundation is trying to help with that by sponsoring a Virtual March on Washington. If you're in any way affected by chronic pain (as a sufferer, a caregiver, or a spouse, family member or friend) you can join the March here and tell your story. (For other ways to get involved, click here.)

Now, let me tell you one last thing about pain. See those two paragraphs up there? When I began typing them my PHN, which is centered in my hand and arm, was at a 6 on a pain scale of 1-10. Now that I'm done, it's at an 8, and it's numb and tingling with shooting pains in my hand. I'm going to spend the next several hours resting until the pain level drops enough for me to use my hand. How's your pain today?

Researchers pinpoint molecule which may control how acupuncture relieves pain.

Experiments in mice showed that levels of adenosine - a natural painkiller - increased in tissues near acupuncture sites.The Nature Neuroscience study also found that in mice resistant to the effects of adenosine, acupuncture had no effect.

Adenosine is known to have many roles in the body including regulating sleep and reducing inflammation, the researchers said.

[BBC News]

What really interests me about this is the connection between adenosine and chronic pain. Am I, like some of those mice, resistant to adenosine?

Stop chasing your pain!

When the pain hits, try to take your BTP medication ASAP.  Don't wait to unload the groceries, finish that sinkful of dishes, attend to that stack of paperwork.  Put yourself and your pain issues first.  If you do not have your pain under control, you won't be of much use to anyone; especially yourself.  The entire process should take you less than five minutes, a mild trade-off for ignoring your pain and then suffering needlessly for hours. 

Called-'Chasing The Pain', failing to address your pain immediately will only result in the never ending cycle of pain, medications and other modalities you use to help such as heat and ice, pain that is not responding, waiting in more pain until it is time for another dose, and the cycle continues.

[Shauna's Life in Pain and Other Fun Things]

Wow, is this ever me. I have such a bad habit of waiting to take pain meds. Especially when it comes to migraines. I seem to be learning to be more responsive to my post-herpetic neuralgia but those migraines do me in every time.

I can't tell you how many times I've been woken up in the middle of the night in pain and instead of getting up and immediately doing or taking something for it I've stayed in bed wishing it would go away. I'm exhausted, it hurts too much to move, maybe if I just stay still I'll fall back asleep and when I wake up again I'll feel better.

Yeah, right.

That never happens. If I fall back asleep--and that's a big if--I wake up later in two or three times the pain that woke me originally. By then I'm miserable and nothing helps.

I need to learn that nothing is more important than dealing with my pain right away. No matter what I'm doing, no matter who I'm with, at the first sign of pain I have to do something about it.

Giving your chronic pain a V.O.I.C.E.

Participate in the University of North Florida's Verification of Illness, Coping & Experience (V.O.I.C.E.) study.

Our goal is to document and share the collective voices of those who endure the challenges of living with chronic physical symptoms. We seek honest and candid responses in an online survey from patients who personally know about the impacts of living with symptoms of illness. Your voice is vital to providing awareness and understanding, and to help establish issues that we need to address in medicine. This research taps into information that lab work and other technologies cannot reveal, relying on input from you for the advancement of science and understanding.

Physicians and other people in your life may not always see or understand your illness the way that you do. We hope to improve understanding by gathering firsthand information from people, like you, who are dealing with ongoing illness for which there is no known cure. We hope this information will help improve the lives and support of individuals who are affected by such illnesses.

There are four surveys, each taking approximately 10-15 minutes to complete. Click here to learn more and take the surveys.

It's exhausting just being.

When we have chronic pain, hypersensitivity, and disability, we have to butt heads with the system a million more times than someone who fits the mold of expectations. And I do a damn good job advocating for myself, but I get tired. And taken by surprise. And sometimes I just don’t want to have to be micromanaging yet again. I just want to sit back and relax. It’s such a drag to have to be hypervigilent 24/7, especially in places where we just want to go to chill.

[Dancing with Pain]