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Monday, July 7, 2008

The Human side

This blog has been very nuts and bolts. I have tried to put a lot of factual information which may be helpful to persons suffering with Lyme disease. Based on the feedback I got from a personal friend suffering with the disease, I feel I have been remiss in addressing the personal toll from an emotional and psychological perspective. Many Lyme patients look relatively well on the outside despite incredible suffering. Others in their lives are frequently unsympathetic and may even suggest the problems are all psychological. This makes everything so much worse. People who are suffering need understanding, love and support. Chronic pain is particularly difficult to deal with. People who have never experienced chronic pain do not understand it. Acute pain is easy. The dentist drills a tooth; it hurts for several seconds and then it gets better. Chronic pain is of a lower intensity, but it never goes away. Sufferers cannot get relief. The psychological and emotional consequences of of this relentless pain are indescribably horrible and are hard to understand unless you have been through it. The medications which treat chronic pain are rarely entirely satisfactory. Narcotics cause sleepiness and mental fogginess. Lyme patients already have brain fog to start with. Patients may be accused of addiction or substance abuse. A wide variety of other drugs may be tried: anti-inflammatories, antidepressants, anti-epileptics and others, but they offer minimal relief. Other modalities such as massage and acupuncture may be tried. These are of some benefit but is not long lasting. The same is true for trigger point injection. Chronic pain and the medicines used to treat can lead to serious depression, mood swings, anger and other psychiatric symptoms. Patients can feel hopeless and even suicidal at times. It is critical that the treating physician listen and be empathetic. It is my hope that many of the treatments discussed in this blog will ultimately alleviate much of this suffering. This is side of chronic Lyme and fibromyalgia which may be the most difficult for many patients. I apologize for not addressing it earlier.


Sunnisideup said...

Thank you Lyme Doc for considering the "dark" side of Lyme and Fibromyalygia sufferers. Chronic pain is like a heavy rock around your neck. When you wake up you are energized just enough to get going (at least I am, thankfully) I know many people are not). As the day goes on, it gets heavier and heavier. Narcotics only take the edge off and make you sleepy, as you pointed out, BUT, sometimes you get so tired of the pain you take anything to feel nothing. Trigger point injections are great, but so temporary. What truly helps, exercise, less stress, better sleep, are all things that these illnesses rob you of. Friends,family, employers, have no understanding of chronic pain. They do not consider why this once sane, stable person is less reliable now. They get tired of hearing you "complain and make excuses". You lose jobs, relationships, BOOM, more stress, more chronic pain. I wonder if it allows Lyme/Fibro. to thrive even more in such people? How many people are undiagnosed with these illnesses and stuck in this cycle?

Babesia Babe said...

This discussion on chronic pain is definitely worth having. Thank you, Lyme Doc, for putting it out there. It is so misunderstood in our American culture. You are supposed to "buck up," pop some over-the-counter pills, and get to work. You must be productive, even multi-tasking, or you are not valued by many people. We're so afraid of addiction, we sentence people with real pain to lives of suffering that we would not allow in our pets.

Personally, I've been living with disease since the mid 1980's. No doctor knew what I had. I was diagnosed with fibromyalgia, chronic fatigue, depression, chronic sinus infections, allergies, periferal neuropathy, arthritis, tinnitus, TMJ, anxiety, "balance problems," and more. A few years ago I had a major flare up after a minor accident, and I was tested for Lyme by an LLMD. Finally!

The lack of understanding of pain shows up in hurtful ways. If I only had a dollar for every time someone said "But you don't LOOK sick, you look great!" Or how about this one... "If only you didn't think about it so much, it would probably go away." Or worse... "Aren't you better YET? You should be over this by now!" Which seems to imply I'm doubly weak and dificient for not being able to just get over it.

On relationships, I have lost some friends and most family members don't want to talk with me. I'm just not as much fun, and I just can't make it to all the social events anymore. I have all these weird dietary restrictions...

I have a whole lot of trouble in the mornings. After such bad nights, the body does not want to move, and rightly so. Narcotics do take the edge off, but make the brain fog worse. Hot baths with epsom salt helps, but only for a few hours. I get so tired of it, I fanticize about leaving my body, and wish my spirit could be free.

Sorry for rambling. That's the way it is.

Lyme report: Montgomery County, MD said...

Keep looking for new approaches. Get tested for viruses like HHV6.IV antibiotics may help. Fibro is tough: keep looking for answers. Don't give up.

livingbygrace said...

That sure sums up me, the last straw for me was a dr that called me a liar, I had been asked when the pain began, your just now coming for help? I don't believe you, after I told him my long ordeal. I don't even want to deal with a dr at this point.