CRPS Followup Email with Checklist Update

This is a followup email from a patient struggling with CRPS: Complex Regional Pain Syndrome. It is an over-reaction of the nervous system to a painful stimulus leading to great pain and disability. Reversing that nerve hypersensitivity takes a multi-disciplinary approach that is well balanced. Kim is wonderful at her feedback which I hope will help many patients. This is her program which varies greatly from patient to patient, but the basic principle areas are the same.  Dr Blake

Hi Dr. Blake,

I hope you had a good Christmas with your family.

I'm writing to check in with you. 

I have been doing the Laterality Flashcards, getting three sessions in most days. I will fax you the scoresheet today. I sometimes feel my feet tingling while I look at the pictures, but sometimes I don't feel it. I am trying to sense my own feet while looking at the photos.

I would say that my right leg has improved greatly during this time, and I attribute it to the flashcards. Many days I've had very little pain or sensitivity in the right leg.

However, my left foot and leg are still quite painful. I would say slightly better than when I saw you, but not much. When I haven't walked much it settles down, but when I walk I feel pain just in the foot for the first few steps, but then shortly after the pain shoots up my leg with each step.

I completed a 10-day burst of 400mg Celebrex/day, and am now on the 3rd day of tapering to 300mg/day, with the plan to return to 200mg/day tomorrow. The left foot remains swollen across the area of the metatarsal/phalangeal joints of the second through fifth toes. The swelling is visible on both the plantar and dorsal sides of the foot.

At my last visit, my neurologist suggested a trial of Oxcarbazepine 150mg 2x/day. I am tapering up on that and tomorrow will be at the full dose. He also said it may be time to try a sympathetic block, and I will consult with Dr  S about this. I'm wondering if you think it's time to try this.

I have also been using a compounded cream of Gabapentin/Ketamine/Ketoprofen/Tetracaine 10%/10%/20%/2% 2-3 times daily. 

I am also meditating and relaxing often, several 10-30 min sessions daily.

I have also just started doing a couple sessions of HeartMath, a home biofeedback program, a day.

My sense of what helps: increased Celebrex, Amitriptyline, Noritriptyline, Valium,  flashcards, relaxation

My sense of what doesn't help: the compounded cream

Not sure: HeartMath, Oxcarbazepine, Lyrica

Below is your checklist, sorry it took me a while to fill it out, I'm a bit slower (mentally) taking the meds I'm on.

I am, as you would expect, extremely eager to return to good health and normal productivity, so any advice you have would be welcome.

In particular I wonder if you believe I should try a sympathetic nerve block, or another ultrasound-guided cortisone injection into the neuroma. My body tends to react to invasive procedures by flaring up, so I am reluctant. On the other hand, we are running out of other options.

Dr Blake's comment: Kim was encouraged to try the sympathetic block first to get the nerve hypersensitivity calmed down before addressing the neuroma (the start of the problem in the first place in her foot). The foot pain started and treatment of the foot nerve set off the RSD symptoms. Now she is working to calm her nervous system down. Kim's program is complex, well thought out, and should be successful. 

Regarding another cortisone injection into the neuroma, I do note that the skin over that area is white, and prior to the swelling of the past month, there was a deep depression between the 3rd and 4th tendons, so I thought a third injection was contra-indicated. Now, with the swelling, the sunken area is no longer evident, but there still may be shrinkage of healthy tissue in that area. I do want to be careful not to put too much cortisone.

Thank you so much for looking at my case from this overview perspective. You are the only non-neurologist I've seen who is aware and literate about CRPS, and it's very encouraging to have your support. 

Warmly, Kim (name changed)

Complex Regional Pain Syndrome Checklist

Identifying the Source of pain

• neuroma in 3-4 interspace of left foot
• any walking is very irritating for the left foot and leg pain
• stress or arousal increases pain
• aerobic exercise increases pain in limbs
• scratchy texture on pants causes pain in legs

Mechanical Means of Breaking Pain Cycle

• tennis shoes with wide deep toe box and cushioned soles
• orthotics
• large Hapad to take pressure off metatarsal heads
• minimize walking
• use knee scooter, use crutches, use electric scooter
• temporary handicapped parking permit

     

Oral Medications to Break Pain Cycle

• Celebrex 200mg/day w bursts of 400mg/day 
• Amitriptyline 25mg/day
• Noritriptyline 30mg/day
• Lyrica 150mg/day,
• Oxcarbazepine 300mg/day
• Valium 10mg/day

     

Topical Medications/Applications to Break Pain Cycle

• Dr. B: 2 cortisone injections into neuroma in 3/12, 4/12: first injection reduced pain 15-20%
• Dr. B: 2 epidural injections with no benefit (actually flared the condition)
• compounded cream of Gabapentin/Ketamine/Ketoprofen/Tetracaine 10%/10%/20%/2% 2-3 times daily
• I've tried Neuro Eze but it seems to make the local foot pain worse. Is this a necessary phase to go through to get healing benefit?
• Today I'm trying BenGay on my foot, but it's not helping
• Lidocaine patches (I haven't used these in a while but I'm about ready for one today!)
• Traumeel cream

     

Alternative

• DO for osteopathic treatment weekly
•  DC, for atlas orthogonal adjustments as she recommends
•  Holistic MD: she's done nutritional/gut analysis, beginning heavy metal testing, ruled out porphyria, noted elevated B6 and deficient vit D
• supplements: multivitamin, vitamin C, omega 3 fish oil, various B-vitamins (except B6 which I am too high on), vitamin D, coQ10, probiotic
• we may use other supplements or medications to try to change the balance of the ecology in the gut to favor more beneficial organisms
• Hanna Somatics practice daily and when muscle spasms occur
• diaphramatic breathing and other breath practices
• autogenic training (technique for learning to regulate sympathetic arousal)
• meditation
• relaxation
• restorative yoga and yoga nidra
• HeartMath home biofeedback for heart rate variability
• Laterality flash cards: retraining
• mirror therapy
• Somatic Experiencing (technique for learning to regulate sympathetic arousal)
• jin shin jyutsu sessions
• lymph drainage
• mirror massage (watching someone else get a massage on their foot and leg)

     

Nutritional

• diet emphasizing fresh whole foods, avoiding highly processed foods
• starting gluten-free diet (1 week so far)
• avoiding green beans, rice, beef, beans (the foods on which tests showed some reactivity)
• rotation diet, not eating any food two days in a row

     

Rehabilitation of Limb Function

• foot ROM daily: flex toes, flex ankle, extend toes, extend ankle, inversion, eversion, adduct toes, abduct toes, draw alphabet with foot
• use foot to crumple up a towel to maintain tone of intrinsic muscles of foot
• some side-lying exercises to strengthen L gluteus medius  

     

Being Productive as possible

• continuing to teach my Hanna Somatics class weekly
• maintaining social contact
• reading and continuing spiritual practice
• spiritual book study group
• researching CRPS and treatments/doctors
• doing housework like laundry and cooking as I am able
• corresponding with others with chronic pain conditions to offer mutual support 

Co morbidities

• hypothyroid: now taking 75mg/day levoxyl, retest TSH and thyroid soon
• hyperprolactinemia: pituitary adenoma, watching and checking prolactin and checking optic nerves, optic chiasm, and visual field

     

List of things I know of but haven’t tried yet

• sympathetic regional block
• seeing a professional practitioner for biofeedback training
• hyperbaric oxygen therapy
• other meds