I've read numerous times in various articles that women can endure pain better than men... In my case, I have to agree - I HATE PAIN! I'm really a big chicken when it comes to pain! (bawk-bawk) I remember back as a kid, I'd get ear infections (and the resulting earache) - which seemed to always occur in the middle of the night! Back 'in them thar days' there were no Urgent Care places like today - an ear ache in the middle of the night usually meant a trip to the emergency room... I remember sitting in the hospital treatment room and the doctor saying I needed a penicillin shot - which filled me with grave fear! As a little kid, that needle looked to me to be at least a foot long; and in those days they gave it to you either in the rear end or the thigh - and let me tell you, that REALLY REALLY hurt - probably why I hate getting shots even to this day! As I said at the start, a big old chicken I am!!
Now most folks wouldn't think that Parkinson's itself is painful per se - most think of it as a movement disorder (stiffness, slow movements, tremor) and that those things don't really result in pain at first glance. And even I didn't really consider the idea very much - until a good Parky friend of mine who was experiencing pain asked if I had done much research on pain with Parkinson's. I had not - so I began to research this and realized that this indeed can come about as a result of PD. In fact, I had experienced a lot of it myself before I got DBS and just not realized it being in the realm of Parkinson-based. My friend suggested that I write a post about this topic... So I did and I thought I would present my findings to all my readers today!
Types of PD Pain
Again, pain associated with Parkinson's is something one just doesn't think about much, and very few studies have been done concerning this. In fact, I could probably have added pain as one of my "Parkinson's Illegitimate Children" series as I have found it to be one of those things that many Parkies experience but don't report to their neurologists... One reason may be that sometimes it's hard to determine whether a certain pain is due to PD, or by a combination of PD and some other issue. That's why it is extremely important that you discuss any pain you are having with your neurologist.
The origin of pain in Parkinson's isn't really well understood. In the early stages of PD, pain is rated as one of the most troublesome non-motor symptoms... and in most cases it seems to affect the side of the body that was initially impacted - and usually the worst - by motor symptoms of the disease. Also, a common thread is that it seems to appear as dystonia when your dopaminergic meds (like Carbidopa/Levodopa) begin to wear out.
So let's start by looking at the different 'types' of pain that can be associated with PD. After doing some research, I found that Parkinson's pain can be divided into about five (5) categories or types:
Oh boy, do I know this kind of pain all too well... this is one of the main reasons why I got DBS at the time I did! Dystonic pain (or Dystonia) is sustained or repetitive muscle twisting, spasms or cramps. This can occur anywhere, but in PD it seems to be mostly in the extremities (feet, hands) and neck. Mine was in the feet - much as the graphic shows, the toes on my feet would cramp downward - and also the big toe would cramp upwards! It seemed to always occur once my Levodopa began wearing off and I was in an 'off' state. Ugh - let me tell you that was mighty painful!! Luckily the DBS surgery that I had helped dramatically with this pain - if I had NOT had that surgery, it's very likely I would be wheelchair bound for parts of the day, since it was impossible for me to walk any distance with one or both feet cramped up!
In more severe cases, dystonia can cause painful deformities for folks with PD - like a twisted or tilted spine or neck. The pain can throw off a persons balance and can cause them to be more likely to fall - which is something we don't want to happen, since falls are one of the primary reasons we Parkies end up in the ER!
This kind of pain affects the bones, muscles, ligaments, tendons and nerves of a PD patient. Most of this kind of pain comes from the rigidity and bradykinesia caused by Parkinson's. Almost every person with PD will experience some kind of muscle rigidity. As our muscles become more rigid, they not only don't move as well as they should, but one has to expend more energy and thought to get them to move. This can result in aches and pain not only in those muscles but also the bones and connective tissue between them. Sometimes this kind of pain can come on suddenly, or be longer lasting.
In some cases, this kind of pain is simply related to our aging; but in a Parky's case, it's usually a combination of both age and the disease process itself. If one has other muscle or skeletal issues - such as osteoporosis or arthritis, then the pain can be even more pronounced than it would normally be. A person with osteoporosis and PD has to be very careful - if the pain causes a person to move differently and as a result they fall, then that could result in broken bones or a hip! Ugh!!
I can relate to this kind of pain - I know that since I was diagnosed with PD and my rigidity has increased, I've noticed that I get a lot more pain in certain areas of my body - especially the neck, lower back and shoulders. Luckily for me it seems never to last an extremely long time - mine seems to 'come and go' depending on when my meds wear out; or I've overworked a muscle group; or because the muscles get so rigid that trying to move or work them simply makes them more tired than they would normally be.
Note: The above two - Dystonic and Musculoskeletal - are the most 'common' types of pain reported.
Wow, now there's a mouthful! "What the heck is Neuropathic or Radicular pain??" you ask... well, I didn't know myself till I looked up the definition (Oh joy, here he goes again with his definitions!) - and it said:
"Neuropathic pain is pain caused by damage or disease affecting the somatosensory nervous system. Neuropathic pain may be associated with abnormal sensations called dysesthesia or pain from normally non-painful stimuli (allodynia)."
Well, that's real clear huh?? I did a little more research - here is my layman's definition: "Numbness, tingling and burning sensations in your extremities that are NOT due to an injury". We have to remember that PD is, first and foremost, damaging to the brain - not only the dopamine centers (substantia nigra) but, as studies have shown, to other areas of the brain as well. And remember, it is the BRAIN that perceives pain - if a nerve somewhere in the body sends a signal to the brain, and the brain doesn't "read" it properly, it could result in a completely different feeling than what was the original intent.
Not only that, but this kind of pain can also be due to tissue damage of the nerves themselves - separation of the pain receptors from the nerves or tissues (called Nociceptive pain). Sometimes a person with PD will have a mix of these types of pain.
Again, here's another unfamiliar word for me; it's definition is: "Akathisia is a movement disorder characterized by a feeling of inner restlessness and inability to stay still."
Ah, now I understand - things like RLS (Restless Legs Syndrome) and such. This is where a muscle group (such as your legs) has perceived pain or sensations - such as an ache, electrical "shock" feelings, tingling, or a sensation of "pins and needles". This typically occurs when the muscle group is a rest, such as when one is sleeping during the night. The only way the person can 'relieve' this pain/sensation is by moving the muscle or extremity - which can result in restlessness and lack of sleep.
I myself feel like I have experienced this type of 'pain' recently in the last year. I've occasionally noticed - especially in the middle of the night - where one or both of my arms have a... what would I call it? Hmm.... an "electrical buzzing" type of feeling - the result being that I have to move the arm. That seems to calm it down for a few seconds - but then it seems to come right back again. This happens especially when I get low on dopamine - if my levels drop, as they usually do in the middle of the night, I have a tendency to experience this type of 'pain' more so than I do during the day. My poor wife, unfortunately, gets to experience it also, in a matter of speaking - it's hard to sleep with someone who is constantly moving around!!
Finally, symptoms of Central Pain are often very hard to describe - it can be intermittent or persistent in nature and is often described by patients as diffuse aching, burning, boring, or cramping pain; it may come and go, or be unrelenting. For example, it may show up as an unexplained abdominal pain or a feeling of reflux... or it may be something like a oral or tooth pain. It is rather rare, only occurring in about 10% of PD patients.
Central pain, unfortunately, is not only one of the least common types of pain in Parkinson's, but also the least understood. Because the symptoms can be vague there is a tendency by physicians to minimize the symptoms, and/or not recognize they are related to the patient's Parkinson's diagnosis.
Ugh, that's quite a list, huh? Parkinson's can make life rough; add into that constant, chronic pain and... well, it can make the most optimistic of us a basket case! But being in pain - along with all the other stuff PD throws at us - can also result in more anxiety or depression for the individual. We already know that we Parkies are more prone to anxiety/depression because of Parkinson's itself - but then throwing pain into the mix can be like throwing gas onto a fire; making us even more anxious or depressed!
Fortunately, there are things that can be done to help relieve pain caused by PD. In general, treating your pain can should involve:
Identifying the source of the pain, if possible
Adding pain medication if necessary
Optimizing dopamine schedule to help control of motor symptoms
Using alternative and non-pharmacologic methods, if helpful
Here are some specific recommendations that I have found:
OK, before we go further, here is my usual disclaimer: What I am going to talk about are treatment SUGGESTIONS - ones I either used myself or I have found via research. Before you even think about trying any of these options, you should always discuss them first with your doctor and/or neurologist! Everyone is different, and your doctors are much more aware of your particular needs, condition and medications! So again these are SUGGESTIONS; I take NO responsibility for these recommendations!
OTC Pain Medications
For some pain, OTC (Over-The-Counter) analgesics like Aleve, Tylenol, and such can help a lot with pain. Some work better than other; but some could interact with a Parkies PD medications or have other side-effects - so make sure you discuss any OTC pain meds with your neurologist first!
This includes such things as muscle relaxers (to help with dystonic pain), dopamine agonists (to help with things like RLS), and even prescription pain medication. Also, Baclofen can be used to help with dystonia and therefore the pain associated with it.
Another thing I am very familiar with (not necessarily fond of though) is Botox® injections. These are injections of a specific type of botulinum toxin that can relax muscles that are flexed or having spasms. They are typically used in the specific areas that are affected, such as the hands, feet and neck, but not in larger muscles such as those involved in postural abnormalities of the trunk.
I had Botox injections in my feet to initially try to relieve my dystonia; although they didn't do much for me, I have heard others say that they helped dramatically with cramping muscles. There are risks, of course - and in my case, these injections in the feet were EXTREMELY painful; just something to be aware of (especially since we are talking about pain here!). And make sure that your health insurance will cover the cost, since Botox injections are rather expensive!
This includes things like DBS; this can offer a benefit for not only things like Dystonia, but also reduce your rigidity and/or other PD symptoms. Another surgery item to consider is Dudopa - which is an intestinal implant that uses a pump to constantly deliver dopamine directly to the gut - resulting in a more constant 'ON' schedule. Also, if you have other issues such as osteoarthritis, disc disease or spinal stenosis, surgical therapies like joint replacement or spinal surgery may help. But there are, of course, risks involved in any type of surgery - especially with a PD patient - so make sure you discuss any surgery with your doctor and review the risks and benefits it might bring.
Adjust Your Med Schedule
This is a fairly easy one - by simply modifying your dopamine Carbidopa/Levodopa (Sinemet®) medication schedule, you may be able to reduce 'off' times, which may help with such things as muscle pain caused by rigidity. Not only that, but it can actually alter the perception of pain, and help a PD patient better deal with it. If you are not yet on Carbidopa/Levodopa, then discuss this with your neurologist - it may help considerably with your symptoms and also any resulting pain. If you are taking Carbidopa/Levodopa, then review your dose and medication schedule with your doctor to be sure it is working well.
Get and Stay ACTIVE!
Ah ha!! Remember what I've been saying all this time? "Exercise, exercise, exercise!"
Exercise can be very beneficial for a lot of the pain (and constipation) we experience - even though this may be the last thing you feel like doing. For instance, Tai Chi is very good at loosening muscles and joints - not only that, but it is easy to learn and almost any PD patient can incorporate this into their exercise program. I know in my case, Tai Chi has been very helpful to me; and Taoist Tai Chi even has a health recovery class that can done for those who are less mobile!
So get out there and work it up! If you are unsure about what exercise is best for you, then a physical or occupational therapist can help you craft a personalized regimen... and your family members and friends can keep you accountable.
This would include such items as massage therapy (ahhh...) or acupuncture (needles again? Argh! But I've heard it can help), or anything else that is not a mainline treatment. For instance, physical therapy and massage therapy can help loosen any rigidity that is caused by PD and allow for a more mobility and a wider range of motion. It can also help relieve stress and anxiety. If it works for you; well, then it is something you might want to do. Just make sure you discuss them first with your physician. Unfortunately a drawback is that your insurance company most likely will NOT cover these types of therapy.
Finally, as I mentioned before, stress and pain are often closely linked together. Each impacts the other, creating a vicious cycle that sets the stage for more chronic pain and more chronic stress. In these cases, stress management should be a component in pain therapy. Meditation, deep breathing, CBT (Cognative Behavioral Therapy), and such can help us reduce stress, which in turn can help with our pain!
Don't Be a Chicken!
Dealing with Parkinson’s disease and managing the pain correlated with it can be a big challenge. But it can, in most cases, be overcome or lessened. So don't be a chicken! Have a thorough and frank discussion with your neurologist and/or physician to find the right solutions for you and your family. And if you're a care partner, remember that it is very important that you support your loved one in dealing with pain - It can sometimes make all the difference in the world!
Wishing you all a 'pain-free' future! I'll be back again shortly with another exciting post, so stay tuned!!