It is so important to keep some sort of log, journal or calendar of your pain symptoms. My method has been to write it in a column in my Food, Exercise and Symptom Diary. That has enabled me to make some broad connections, like flares associated with too much alcohol over a long period of time. I then put those on an outlook calendar that allows me to see a month at a time and I can spot trends better.
Some resources to change how you think about pain. to the concept of retraining how your brain deals with pain. I am walking through these lessons on these two sites.
- http://www.retrainpain.org/ Easy to understand version. We can retrain how our brain deals with pain.
- http://www.tmswiki.org/forum/painrecovery/ Deeper dive into retraining the brain with opportunities for self-reflection.
- Google these subjects: Graded Motor Imagery. Fear Avoidance Belief Scale, Pain Catastrophizing Scale, Oswestry Low Back Disability Questionnaire, OSPRO-YF, Keele STarT Back Screening Tool
- Explore how different breath patterns can alter vagus nerve activity. Breathing stimulates vagus nerve, which inhibits inflammation, inhibits oxidative stress, inhibits sympathetic activity, activates brain regions that oppose “pain matrix”
- The National Psoriasis Foundation’s Pain Management Guide and Tracker is useful and I did it for a while. Removing gluten from my diet has put my psoriatic arthritis mostly in remission so I no longer use this tool daily.
Pain Diary Narrative
6-7-21 I log most of my day-to-day pains and symptoms in my Food, Exercise, and Symptom Diary. But today, I was compelled to write here because I am getting more frustrated with the constant muscle pain in my hands and feet. Really the pain is below my elbows and my knees and my low back. My knees are getting worse and hurt to sit in a criss-cross style. My hands are swollen and it hurts to make a fist. Why? I have done everything well. I’m eating almost all vegetables that are packed with nutrition from my own garden. I drink kombucha & kefir and for the most part, I feel like my gut has healed. I do seem to get bloated at the end of the day still. At first, I thought this pain was because I didn’t do my morning walk or bedtime stretches for about 3 days over Memorial Day weekend. Then I blamed it on the unusually rainy weather we are experiencing this spring. But there seems to always be an excuse and the days when I feel whole are few and far between. I’m angry at God that I’m so young and feel so old. Some days I tell myself I am normal and that I just learn to cope. But today, I don’t accept that statement. This is not normal. People my age are not walking around in all this pain with limited ability to live a full life. Why God? What is the point of this pain? Is it possible to heal it?
Swimming last summer helped me and by the fall I felt “healed” in some ways. I made it through most of the winter without slipping. But ironically, this season, when I am beginning to get more sunshine and starting to swim again is when I feel the worst since last summer. It isn’t a single bad day here and there, or a 3-day flare of psoriasis or lichen planus that I have to treat, but a few weeks now of constant pain.
7-8-20 Low back pain is constant & especially bad in the mornings. Some days I cannot bend without holding onto something to support myself. PsA in my hands is mild-so that has gotten better. Psoriasis flares depending on what I eat but it is milder than it has been in the past. Lichen Planus is not going away. I use Desert Harvest Aloe Vera Gele’ product and it keeps me comfortable and may even keep the lichen planus at bay a bit.
3-9-20 Lower back and left SI joint pain has returned and although I am doing some stretching at home, I can’t seem to get it to go completely away again.
December-February Physical Therapy gradually reduced pain and helped me regain strength. I felt physically strong at times.
November Back pain moved up into the rib cage area and wrapped around to the front of my body. Sometimes it hurt to take a deep breath. Low back pain, SI joint pain. Limited mobility.
October Right back muscle spasms continue. Fatigue, congestion, headache, and night sweats were worse this month but they have been present consistently in some degree since February. Two flares of zoster spots this month.
September Left lower back pain, SI joint pain at beginning of month. Right back muscle spasms last part of month, wrist pain
8-8-19 Waking with headache and sinus congestion, psoriasis bad and vaginal ulcer bad
7-2-19 Medication for candida overgrowth made me feel better immediately.
6-8-19 I have a bad spot on my throat and it is very sore. My primary doctor gave me a Zpak for for strep even though I tested negative. I then developed a scaly rash around my mouth and at the corners of my mouth.
5-25-19 I stayed up late with the high school graduates on 5/22 and I am blaming that for the prolonged pain I am experiencing. My left side neck, upper back, and chest are very tight and hurt when I breathe deeply. I have had lower back pain for about a month now and it is worse on my left side. My lower abdominal muscles are not able to hold my tummy in anymore. Yoga isn’t helping like it used to. I’m wondering if the absence of estrogen is part of the story. Older women tend to carry abdominal fat more than when they are younger.
4-25-19 I’m waking with sore throat, slight congestion and have 2 spots that I’m afraid may be new zosters.
3-16-19 The detailed symptoms associated with my diagnosis of Disseminated Zoster are in my Food, Exercise and Symptom Diary so I will not repeat them here. But about 6 days after I started my anti-viral medication, my PsA symptoms became prominent again, primarily in my hands, ankles and feet.
3-4-19 My tenderness reached a point that I was scared. Several nights in a row from Feb 20th to 23rd I started feeling flu-like achy in the evening. My sinuses would stop up, but no drainage or congestion, just an inability to breath through my nose. I saw my GP on the 25th and he agreed my thyroid was quite large, so I got an ultrasound that afternoon, which showed significant growth since the last ultrasound. Next step was a biopsy on 3/4. Awaiting those results.
2-13-19 Neck slightly better. Lower back still an issue but may be improving with my strength. I haven’t mentioned my allergy symptoms, but I’ve been congested for most of January & February, my neck is tender to the touch (on the outside, not the inside), and I wake with headaches. Last night they woke me during the night.
2-1-19: Consistent neck pain. Consistent lower back on my left. Affecting my ability to bend and get dressed.
1-5-19: Major PsA flare in my hands. Very swollen & painful.
11-21-18: I have never had neck pain like I experienced over the last months. I first made note of it on September 23rd. It went away briefly for about a week in mid-October but was back a few days before Halloween and did not subside until Nov 15th. I can only speculate about what helped. I took my first dose of Taltz on November 14th, switching to Taltz from Humira. I also have been seeing an excellent medical massage person. She worked the right side of my neck & face & even inside my mouth & that released the right side, but the left side was still so tight I could barely turn my head when driving. So I googled about trigger points & attempted similar self massage all over my head, face, & neck–places you don’t normally massage. Perhaps both of those things helped. I am so relieved. I received a lymphatic massage this week and that has made my body relax so I finally got a good night’s sleep.
10-30-18: Beginning to think the neck pain is because of something going on in my sleep. I have gone to bed feeling okay but wake up stiff & unable to move. I also know it gets worse when I spend a lot of time at my computer.
10-12-18: Finally walking without too much pain & feeling a little energy to get a few things done. Although the neck pain I have been experiencing lately is still really bad.
10-9-18: Spent the weekend walking around a music festival. My left leg was pretty bad at times. It is very sore from all the exercise. All in all, I think it was good for me to walk. I still can’t go downstairs. That motion/muscle is not yet developed so I know I need to start PT. My neck pain didn’t go away but it lessened over the weekend. After yesterday at the computer, I began to wonder if my neck pain is from computer use with my new bifocals. I moved my monitors down to try to experiment but today isn’t feeling any better. I’m going on 2 1/2 weeks of bad neck pain.
10-1-18: Alarm went off at 5:30 am and I felt hungover (mild headache, sore throat & super groggy) even though I did not drink last night. Snoozed til 6am. I had an 8am appointment for a PT evaluation. But I was confused and working towards a 7am appointment. It hurt my feet to go downstairs, but after 2 cups of coffee, I realized I was off an hour. I soaked my feet in Epsom salts. In preparation for the PT evaluation, I decided to NOT wear the compression sock or the boot. By the time I arrived at the 8am appointment I was experiencing severe pain in my neck, shoulder, radiating down arms and across the front of the chest. This was back to the almost 10 level of pain in my neck that I was experiencing last week. It is so painful it is distracting. I can’t do anything. I can’t relax. It is all-consuming. What is a little unique about today is that I’m noting that I did not wake up with this pain. So I’m making note of 3 speculated causes.
- Stress-when I arrived at the 8am appointment I was told this provider was out of network, so I had to start fighting insurance again.
- Foot Pain-Walking on my foot for 2 hours without the compression sock (which hurt with each step) may have stimulated some trigger points/reflexology points on the bottom of my foot that would cause pain in other parts of my body.
- Skin Irritation-I wore a sweater with a tag that started irritating my skin. I’ve worn it before without this happening, but today I could hardly think about anything else until I was able to cut the tag out of the sweater. Could something as simple as a skin irritation cause that much pain to radiate out from the irritated part of my body?
9-27-18: I found this article about chronic pain and the brain fascinating. This two hour YouTube video is long but made me realize that some element of my continuous pain may be brain pain and may require a different approach. It is refreshing that he doesn’t get hung up on a single diagnosis of Fibromyalgia, etc. but assumes that people are somewhere on this continuum and that if you are experiencing any sort of chronic pain, that your brain may be reset to perceive it more than someone who has not experienced chronic pain. This higher sensitivity to pain is what needs to be addressed and is not responsive to pain meds that focus on localized joint pain. It refers to something called a FibroGuide to help with tracking pain so that you can talk with your doctor. The download doesn’t work for me right now but it says a new download is coming. All of this research on pain is coming out of the University of Michigan so I will be checking back with this site regularly.