The veritable constant pain is the worst thing about PC.
PC causes a unique type of chronic pain unlike that of most other syndromes. Further, PC pain is a very individual matter and varies greatly from day to day, season to season.
As one patient said “I would say the worst thing for me about having PC is the pain that comes from just day-to-day activities. The worst part about it for me is just not being able to do the simple tasks that other people can do, such as just like walking to class, or being able to help out with, like, moving things. I always have to be really careful about how much I do every day, and sometimes that limits my ability to interact with other people, to participate as much as I want to. And then, even if I do hold myself back, I still have to suffer the repercussions for it.”
Another quoted, “The pain just consumes you constantly. The pain has been so bad to where I would just be crawling around my house for a couple of days, and at that point my feet were in terrible condition.” And another described the daily pain factor “The worst part about having PC is that unknown pain factor. I get up every single morning and get out of bed. That first step on the ground, I know it’s going to be painful, and it is, and I dread it. I lose my balance because the pain is so bad. It’s hard to walk. The second thing is the fact that I’m so dependent on other people to help me with everything.”
“You kind of have to pick and choose what you do. I have knee pads. I’ll crawl around the house at night and try to save my feet for the next day. You learn to adapt and do things quite a bit differently. I’ll sit or kneel to do things that most people would maybe stand to do. Standing in line at the airport, walking, taking your shoes off and walking through the scanners and stuff is horrible. It’s like walking on glass, quite literally.”
“The biggest thing I deal with every day is ridiculous, overwhelming, debilitating pain. Just the thought of walking in a mall or going shopping causes me stress.”
One PC-K6a patient shared the heart-breaking story of his young adult son: “He went away to college, and along with studying, he also blazed a path in trying to find a cure for his own pain. It involved pain clinics, and he received some kind of—nothing to deal with his real pain, but like Lyrica, and Gaba-something. I don’t know. He was able to find opioids, which apparently people will sell you, but doctors don’t. No one was willing to prescribe them for his pain, so he went out and found his own. The pills don’t last, so then he had to go on to find heroin, and he used heroin, and he had an overdose, and he was brought back from that. That was two years ago. And he fought his addiction, but he lost January 3rd. I came and found him in his room.”
CARING FOR PAIN
One PCer stated, “We want PCers to be able to connect to the pain management community so they don’t have to deal with pain in isolation.”
Dr. Sancy Leachman emphasized, “We want any pain management to be safe, credible, well-defined, and something as a group we feel comfortable referring to.”
The 2007 PAB Patient Outreach Working Team noted that often “CARE = pain management” and Dr. Sancy Leachman has also noted that regular care for the feet is the very best pain management tool for PCers.
PATIENT TIPS & COMMENTS FOR PAIN
K6a patient: “I recommend Lidocaine Hydrochloride for pain relief. A wound care doctor prescribed it for me. Applied directly to the sore area of my foot. 4% dosage liquid with prescription. 2% dosage as gel is reportedly available off the shelf at drug store.”
K6a patient: “This past fall, for no reason that I could find, my feet became incredibly painful — all the time — even when I wasn’t walking. My calluses looked just fine and I had no blistering. I couldn’t understand why they hurt so incredibly bad. It made me want to do nothing. For me, pain becomes as much a mental issue as it is a physical issue. My whole mentality gets wrapped up in the pain. The reason I’m telling you this is not to feel badly for me. I am no doctor, but sometimes I wonder if part of PC includes having this unexpected, unexplained pain. This wasn’t the first time it’s happened. I remember the first time I do remember it happening, many years ago. I went to my doctor who knew my feet very well. He looked at my feet and said, “But they don’t look bad.” My doctor had seen my feet much worse and so when I made that emergency appointment because of the pain, my doctor expected to see my feet in worse shape. I felt a little badly at his comments, but also realized there was nothing he could do and that my feet for no reason that any of us could figure out just plain hurt — more than their usual PC pain. This happens to me maybe several times a year — not sure — but this last time, it lasted about a month. Something that helps me with the pain is to get circulation in my feet and my legs. This will sound so strange, but sometimes when my feet are really sore, I ride a stationary exercise bicycle. I don’t have calluses on the arches of my feet, so I can pedal the bike quite comfortably. For some reason, this seems to help my feet feel better. If it’s in the middle of the night, I often do leg lifts, or raise my legs off the bed and bend my knees — just anything to get the blood flowing. There’s a ton of leg exercises that I can do while on the floor and they all seem to help. I don’t know if it’s because I used crutches a lot and also a wheelchair in my home — I have a nifty electric one — but my feet can get extra sore from not using them. Which is difficult since, well, our feet hurt! It’s hard because when I’m hurting really badly, I often want to just lie down and not move. And that’s true that sometimes rest is the only help. But getting the circulation going has been a big help for me.”
??? patient: “I too get the sudden unexplained bouts of pain, especially with my feet. Even when I haven’t been walking about or putting my feet under stress, I still get really bad pain associated with the pressure point in my feet. Prof E O’toole has just started me on a treatment of local anesthetic (Linocaine 2% gel under a hydrocolloid plaster). This has done wonders to take the pain away, but I would advise not using it over the entire foot as this can cause balancing problems because of the loss of sensation in the foot. We need a level of sensation to actually know where and on what our feet are walking.”
K6a patient: “I manage most of my pain with over-the-counter pain relievers like acetaminophen (Tylenol) or non-steroidal anti-inflammatories (like ibuprofen (Advil/Motrin)). I know that not everyone is keen on taking pills though. It’s my understanding that it’s physiologically easier to PREVENT pain than to GET RID OF pain, so I typically take them before doing excessive walking. Or, if I’m not having a good week, I’ll take them first thing in the morning. The anti-inflammatories are especially helpful when there’s actually blistering. It seems to make the areas less “angry” (red, hot, painful).”
K6a patient: “I use Tiger Balm (full strength Thai mixture) and rub it into my ankles so it feeds the whole foot.”
K6a patient: “Yes, sometimes for no clear reason for me, my feet get in deep pain. The only thing that really helps is to avoid walking for a few days. During this period, I will give time to my feet to relax in order to close the open sores and get access to drain the blisters. In my case, I have already registered some facts, besides walking too much, which make my feet worst:
- Specific foods: too much spice, chocolate, industrialized food, etc. — everything that brings pain to my body will bring blisters to my feet.
- Stress; few hours of sleeping.
- Dry weather (since I live in a warm country, my feet are used to warm weather, and it will go really bad if I move to dry weather)”
K6a patient: “The best treatment I have experienced to reduce pain for blisters and calluses are: BLISTERS (appear on every travel, Christmas period which coincides with summer in Chile, etc.)
- Puncture the blister with a needle and thread. Leave the thread to allow draining for hours.
- Soak the feet in a solution with permanganate of potassium. This will leave the skin black — If you don’t want to have your feet black, you can replace the permanganate with marine salt and you should repeat the soaking for several days. The blisters especially will be black, but it will help to dry them in one day (one time is enough).
- On the blister, apply celullase with mesmicin to prevent infection and help regimenting the skin.
CALLUSES: Go to a podologist. In Chile, they study only for one year and I always thought it was normal to leave their office with a lot of pain because they trimmed too much. Now, I found a podologist who studied in Argentina, where they obtain a university degree. You can feel the difference. What he does is put a softening liquid, then with a bisturi he cuts a part, and then uses an electric disector (which burns the root of the callus) and removes the callus with the bisturi with only one cut. He has an assistant who holds my leg still. He repeats the procedure for every callus. At the end of the session, we finish all tired but with no pain on my feet. He always give me the last hour because he must have all the required time to do his job slowly and also because he says they need to rest after working on my feet. I am now using a cream that helps me a lot: Laboratiner vichy — podexine — podiatric care — reconditioning care for dry feet — restructuring ceramides.”
K6a patient: “I was having such constant pain, especially at night, and even if I hadn’t been on my feet a lot. It was suggested to take pain medication, morning and night for a while, to break the pain cycle. And it worked! It was also suggested I not put my feet into cool water to ease the pain which I usually did, as it expands the outer layer (strata corneum) and could make it more sensitive. Using cool gel packs are better. Pre-dosing medication if I knew I was going to be on my feet a lot that day also helps.”
K16 patient: “Sometimes, for no reason, I have a big pain. I have to hydrate my skin. First, I put my feet directly in very cold water. Immediately, at least 80% of the pain will go away, but it comes back after some time. Afterwards, I put some Vaseline all over my feet to hydrate them. I do not put any socks or shoes on for some time. I also take some drugs. In France, it’s some paracetamol or similar to this. I hate to hear that someone has a lot of pain and does not know why. If I walk and I have pain, I at least know why.”
K16 patient: “I find the only thing that works for me is not to walk, or walk very little for a few weeks. It seems that even if I’ve not been on a ‘long walk,’ sometimes I think you can overdo it over the course of a few weeks or months and it eventually catches up with you. To me, it seems that I am doing unseen damage below the surface of the skin and that’s got to come out sooner or later. Also, tension or stress makes pain worse for me, so a few relaxation treats help too. “
K6a patient: “I use anti-inflammatories or enzyme inhibitors such as Vioxx or Celebrex. I take one each night before going to bed and cannot function without them.”
K6a patient: “He used an anti-inflammatory medicine that helped his feet for long walks and every day use of feet. It worked extremely well.”
K16 patient: “Swimming makes my feet sore but has never made their condition any better or worse.”
??? patient: “Swimming in a pool that has chlorine helps my feet.”
K16 patient: “I try to keep fit by swimming and cycling. An overall good condition probably helps manage foot pain.”
Airline foot exercises
K16 patient “For pain relief, do airline foot exercises.”
For examples, see United Airlines Inflight Exercises.