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Monday, December 31, 2012

Followup on Treatment for CRPS: The All Important Checklist

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.
Dr Blake's comment: We are trying to use Celebrex to reduce inflammation around the nerves, and trying to see if 400 mg per day is any better than 200 mg. Or whether we should change to another drug. 

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 another doctor  about this. I'm wondering if you think it's time to try this.
Dr Blake's comment: Yes, these sympathetic blocks can really help, supposedly less effective the longer you wait. Make sure multiple levels are done. When I had one, my injury was at L2/L3, but the sympathetic blocks were also at the sympathetic ganglion above and below (3 levels total). 

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.
Dr Blake's comment: I emailed the patient several music mediations, but still looking for another. I love the water one personally. The mediation must direct healing energy down to the injured area. 

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.

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.
Dr Blake's comment: That is called lipolysis, or temporary thinning of the soft tissue in the area. I would tend to go to the sympathetic block over a local shot, since the problem presently is more than the localized nerve problem. The longer you wait the better, but I would give the foot shot in another place if possible away from the thinning. 

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. 

Kim (name changed)

Complex Regional Pain Syndrome Checklist

Identifying the Source of pain
Dr Blake's comment: Kim, how have the source of pain been identified? MRI, Nerve testing, etc?
  • 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
Dr Blake's comment: Kim, How has the tennis shoes, orthotics, Hapads helped you? Increased walking before pain begins? Lowering of the basic level of pain?
  • 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
  •  2 cortisone injections into neuroma in 3/12, 4/12: first injection reduced pain 15-20%
  •  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? Dr Blake's comment: No, The Neuro Eze is a nerve destabilizer, but must be rubbed in. Like the compounding medications, the local irritation from rubbing the medicine into the sore areas, is worse than any relief you get from the medication. Glad you are going to retry the Lidoderm patches.
  • 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
  • DO for osteopathic 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 Dr Blake's comment: There has been a link with Vit D deficiency and nerve sensitivity. Try to get your Vit D3 to 55 or above.
  • 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)
  • 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  Dr Blake's comment: I would definitely increase my cardio, and core workouts making sure that there is no irritation to the sciatica nerve. When you talk to a patient, mention that you need safe cardio and core without irritating the sciatic nerve in the low back.
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 Dr Blake's comment: I need to check on this for you. Definitely a biofeedback practitioner would be wonderful.
  • other meds
Kim, I am so honored to try to help somewhat. Getting this checklist done was an important step for me to refer to constantly as I think about the process of healing you are going through. With tomorrow starting a new year, good healing will be part of new beginnings. Rich


  1. I apologize for doing this... and understand that you are there, and I am wayyyy over here and that you cannot treat me... but does this patient's CRPS resemble mine? Recent racy photos of my feet can be seen here on my blog:

    1. Bianca, No, you are in an intense vaso constriction phase. Are your doctors considering sympathetic blocks or a sympathectomy? Rich


Thank you very much for leaving a comment. Due to my time restraints, some comments may not be answered.I will answer questions that I feel will help the community as a whole.. I can only answer medical questions in a general form. No specific answers can be given. Please consult a podiatrist, therapist, orthopedist, or sports medicine physician in your area for specific questions.