Neuropathic pain, i.e., pain due to damaged nerves, is common with people with vascular dementia, which in turn occurs often with LBD. It is also a condition that occurs fairly often diabetes, and with the elderly in general as their nervous systems age. It can appear as chronic back pain, or it may travel along the nerve path into arms and legs, hands and feet. For the PwLBD with poor communication skills, it can be a cause of acting out as a cry of help.
This type of pain can be severe and may not respond to mild pain relievers like Tylenol or even Advil. Lyrica is often used but it's anticholinergic* properties mean that it is a poor choice with LBD. Many physicians treat neuropathic pain with antidepressants, choosing SNRI such as Effexor or Cymbalta over the older tricyclics, which are also anticholinergics. Of course, every PwLBD responds differently to drugs and so you must always "start low and go slow."
Marijuana has also been used. It has been used successfully for years with cancer and is now being considered for other types of chronic pain. Tests done with diabetic neuropathic pain have shown that it does relieve pain significantly better than a placebo, apparently without impairing cognition. However, these people did not already have dementia. The whole issue around this substance, which is now legal in many states, is too big for a paragraph. Look for a whole blog about it in the future.
Surgery. As arthritic pain gets worse, many people opt for joint surgery. This might be an option for knee joints if it is done without inhaled anaesthetic. In the past, this was major surgery done with inhaled anesthetics--strong anticholinergics.* Some doctors now do this surgery with the same kind of spinal block used for baby delivery by cesarean section. With this procedure, the sedation drugs are milder and their effect is much less.
Summary of the last three blogs:
Avoid NSAIDs as much as possible. If you must take them, choose aspirin or Advil, which appear to be the mildest and least likely to cause heart problems. The second generation prescription NSAIDs are safer on your GI system but just as dangerous for your heart as the others. If you take them, take as small a dose as you can and get the relief you want and take them only when you have pain. Don't take them to prevent pain. For years, I, like many others, took Aleeve to limit inflammation--and thus arthritic pain. This isn't recommended anymore. Taking NSAIDs for long periods of time put everyone, not just your loved one with LBD, at a greater risk for heart problems.
Tylenol is probably the safest pain drug, and the safest one to use with chronic pain. However, it isn't totally safe either. If you have any liver damage it will make it worse. Tylenol is added to many other drugs and so make sure you or your loved one doesn't unknowingly overdose on it. Further, the drugs used with it are often anticholinergics.
Opiates in small doses for short periods of time for moderate to severe pain are probably safe--or as safe as any drug is with LBD. However, they aren't usually recommended for long term pain like arthritis or the pains that accompany PD.
The best medical choice for neuropathic pain is probably SNRI antidepressants or possibly marijuana.
Surgery might be a viable option for arthritic knee pain, when it is done with a spinal block instead of inhaled anesthetics.
As you can see, the medical choices for pain relief are limited and none come without adverse effects. Usually, you end up balancing the advantages against the risks. If the advantages outweigh the fear of risk, you may go ahead and use the drug, at least for short term pain, However, all of this does make the use of non-drug pain management a lot more attractive. See next weeks blog.
* Anticholinergics: drugs that interfere with the function of acetylcholine, the same chemical in the brain that Lewy bodies attack.
For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson’s & Lewy BodyDementia
Helen and James Whitworth are not doctors. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a physician's advice.