This is an article that was briefly published online. Before that publication disappeared. A Universe Of Pain Constellations Sue Klaus © 2016 Note: this is the personal opinion of one patient, and licensed physicians should be consulted about any health problems. I have to admit that I spend some time analyzing the world around me. I find it helpful to list and describe experiences, especially difficulties, in an effort to cope with them. I have experienced chronic pain for decades now, and I am still often at a loss to adequately describe my experience with it. With diagnoses of Myofascial Pain Disorder, Chronic Fatigue Syndrome/Myalgic Encephalomyelitis, Fibromyalgia, Degenerative Disc Disease with Spondylolisthesis – it’s all a blur at the end of the day. A big painful blur. However, lately I am drawn to describing it as a universe of sensations, divided into constellations with their different components and characteristics. My hope is that putting this into a “3d construct” will help me define what is going on, since I seem to need it defined. Where to start? Head to toe? Worst to least? I choose to start with the strangest and most anomalous constellation, The Travelers. The Travelers Constellation This is by far the oddest of the constellations, and one of the most annoying. Fortunately, it is also the rarest to occur. A pain will start suddenly, quite strong, in one particular area. It will continue for 5 to 15 minutes, and then just as suddenly, it will relocate to a totally other area or limb. It will have the same intensity, and the same character, usually stabbing or throbbing. It may continue moving like this for 3 areas, up to a maximum of 6-8 different placements. Then thankfully it stops. And thankfully it is relatively rare, happening approximately every 2 – 4 months. The Knees Constellation This pain is due to a combination of past injuries, arthritis, not doing my knee exercises, and overweight. Climbing stairs hurts the knees on both sides of the kneecap. Going down stairs isn’t as bad. Kneeling on them is absolutely torture. I tore the right knee meniscus two different times, and had two arthroscopic surgeries on it to remove the torn areas. However the pain is almost symmetrical at this point. This only hurts when I am standing and walking. Falling on them recently after they buckled has only made this worse. Insane Leg Pain from Standing and Walking Constellation This is separate from The Knees, and occurs whenever I try to do something normal, like walk around downtown Chicago, or set-up and assist at a parish dinner. The longer I spend on my legs, the intensity is exponential. It includes the following components: 1. Calf muscles front and back burn and throb. 2. Lower legs painfully swell and are actually hot to the touch. 3. Thigh muscles, especially deep posterior ones, feel like painful rods. Triad 121608 Constellation This constellation started on December 16th, 2008. That morning I woke up with my right hand in an odd position – closed, fingers straight. I used my other hand to open it up. The palm of my right hand was achy and stiff. In a few days, my left hand was achy in the same way. Then the soles of my feet, same sensation, same degree. Finally after a few months, the same pain occurred at the front of both shoulders, where muscles/tendons meet bone (collarbone and below). The severe pain in the feet was helped by one session of acupuncture with moxibustion. I need to go back to this acupuncture therapist that the University of Chicago doctor referred me. However acupuncture sessions need to be specific, so you have to go in with a specific area in mind. The Neck Shoulder Constellation The superstructure of neck and shoulders has its own sublocations and characteristics. 1. The neck itself which can get stiff at work, and connects to the upper back and shoulders. I do have some degenerative disc disease in the neck, and it gets achy. 2. Shoulders, front, top and back, are all sore, especially at points where muscle meets bone. (See Triad Constellation). 3. Shoulder blades are very painful to the touch along the top ridge, and muscles under the blades are also sore and irritated. 4. There is aching pain on either side of the upper spine, possibly an extension of the pain under the shoulder blades. The Lumbar Constellation I had severe lumbar back pain for many years, which felt as though an axe had struck my lower back, and I was still walking around with it in there. I finally had a two stage spinal fusion, which created immense relief. However, due to some problems lately I feel like it is coming back. I also seem to have injured my sacroiliac joint (below the fusion) lifting things that were heavy. It finally occurred to me, that just because I am now part titanium doesn’t give me the superpowers I was hoping for. The Crown Constellation This may or may not be sinus related, but the top crown area of my head has hurt all this past year. This despite months of sinus infection treatments. It feels like the very top of my skull will blow off. I may ask my acupuncture therapist for assistance with this after the new year (when I have enough FSA funds to do so). The Arthritic Hands Constellation I have several arthritic joints in my hands including basal arthritis in both thumbs. Sometimes the individual joints “glow” with sharp pain. The basal arthritis has limited my grip strength in both hands. And while having a box of blueberries leap out of my hand can be oddly amusing, the second time isn’t near as funny. Do all these happen all the time? No. Several can fire at once, and the more active I am, the more pain I will have, in more places. Am I in pain all the time? Yes, in one constellation or several, depending on whether I can rest or not, and for how long. Do they ever all hit at once? Sometimes.Mostly it's a combination of several. That is what I call a pain flare. Imagine all the constellations of the universe moving into one position, all in the same place, at the same time. You would think that a cataclysm was taking place. You would be right. It is. During a flare, the patient's usual description is that “everything hurts.” Of course that is not true. Personally, I can say with confidence that the tip of my nose has no pain. Always the bright side. I was recently told by a doctor that “Pain everywhere means pain nowhere.” I contend that this is not true. There is so much pain, for so many people, that in the United States alone, it seems to be an epidemic. I don't believe this is mass hysteria. I believe the pain is terribly real, and physicians are under-prepared for chronic pain and its very necessary treatment. Injuries and illness compound existing problems, and grow into a universe of their own. Lack of effective treatment, and demeaning attitudes toward chronic pain sufferers, are not helpful. Long-standing pain leads to isolation, family breakdown, and sometimes severe enough depression to lead to suicide. Pain management clinics and doctors vary widely in approach, but to have to sign agreements that you will not engage in specific “behaviors” puts a suffering person on the defensive immediately. For example, you have to sign that you agree not to get pain medication anywhere else. You are also admonished not to call in for refills on Fridays. That said, often it is not advisable to get pain meds from your family doctor or even a pain management doctor without having first consulted a neurologist, orthopedist, and/or rheumatologist for an exact diagnosis. Chronic pain is complex, and requires more diagnostic expertise than some internists or family doctors much might have. To my fellow earthlings in pain, I have a few suggestions. 1. Please know that you are not alone. 2. Know that there are great doctors out there that can help. 3. Help them help you by listing pain into its components so that list is ready to be given to any doctor you consult. 4. If a doctor is completely unsatisfactory, get a copy of your chart and fire that doctor. 5. Find a better doctor and provide your chart for them. 6. When diagnostic tests are done and your doctor has the results, request a copy of those results, and keep them organized at home. This helps you keep track of when surgeries were done, when injuries took place, and when new symptoms arise. When you find a great doctor that can work with you to explore not only your diagnosis, but will help you coordinate multiple types of care (physical therapy, TENS units, acupuncture, pain patches, therapeutic massage, and medication), that's a keeper. I wish us all better wellness in the future.
Thank you for posting about living with chronic pain, which includes tips about how to better navigate the health care system, which when applied, can maximize a better success rate. In the US, I do believe it is a system, that once carefully studied, can be understood to produce better then average results. But it’s very difficult to master the process if one is severely ill. A doctor appointment can be like showing up to take an exam, but you haven’t read the book or attended any lectures. Unfortunately, public education, including higher learning do not offer required courses on how to prepare for and manage a chronic disabling illness, and all of the changes to expect. Maybe call it “Chronic Illness for Dummies” or for ME, “Chronic Illness, with no FDA treatment, but guaranteed stigma, for Dummies”. So when we become severly ill, it’s absolutely the most difficult time to conquer a steep learning curve. Unless we get a lot of help, or can somehow study in 5 minute segments (followed by 60 minutes of rest) we may have negative experiences with long term consequences. But I am glad you figured it out, and want to share and help others. I like your community spirit. And I totally agree to fire a doctor if his/her performance is unsatisfactory. Assuming a doctor is not a lost cause, “a lemon”, then I sometimes try first to educate him/her, and offer a second chance, before saying “you’re fired”. We have a “lemon law” for defective automobiles, but unfortunately none for inadequate health care providers.
Thanks for posting, @Sue Klaus. My first reaction was empathy for what you must be going through. So much pain! But then my second was, "Yes, we do need a better vocabulary to describe our symptoms in general!". I think your level of pain is unusually high, even amongst those of us with ME. I'm probably less functional than you (parish dinners would be out of my reach), but I certainly experience much less pain. Reading your account, I'm just thinking all the time, connective tissue damage, connective tissue damage, autoimmune stuff, autoimmune stuff. I know I might be way off there, but just hope you have a good doctor that is considering those things. Recently, @TrixieStix posted about an autoimmune diagnosis she obtained largely through her own efforts (Relapsing polychondritis: here). And @Gingergrrl has previously discussed her diagnostic journey from ME/CFS to autoimmune disease. (You've probably already thought of this, and I'm probably just being like one of those annoying healthy people that try to tell us what our own problem is - if so, then sorry!). I'm really interested in helping to develop a better vocabulary for describing our sensations. We just had a discussion here recently about something very different - post-exertional malaise - and it became clear that different people experience it very differently. We just don't have enough words for these things to pick up all the nuances. Your post was really excellent in that respect!
I read somewhere recently, that what I call "The Travelers" actually is also called "voodoo doll" where pains come in like needles and travel around the body.
