RSD, Complex Regional Pain Syndrome – a case report


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Severe Pain for Three Years,

 80% better in 10 days

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“This has been life altering.”

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This is a very bright young woman who was an all state volleyball player until onset of Complex Regional Pain Syndrome three years ago in the right hand and wrist. It began after blood was drawn from the hand for a chemistry study and, one week later, the fingers turned black, lost blood flow, followed by emergency surgery for removal of a blood clot from the back of her hand. She woke after surgery, tearing the sheet off due to intense pain on light touch — that is called allodynia — and then developed severe edema from the hand to the shoulder.

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It was four excruciating weeks before the diagnosis of complex regional pain syndrome was made.

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CRPS or RSD is a diagnosis that every MD,

every surgeon, every ER doctor,

every psychiatrist and psychologist, every nurse and therapist should know how to diagnose.

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Because she was a minor, they would not do nerve blocks.

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She developed contractures of the fingers and hand,

was unable to move the fingers.

  A major university hospital diagnosed Munchausen Syndrome;

mom was diagnosed with Munchausen’s by proxy.

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This happens so often. This is 2012.

If it’s not the doctors,

it’s the insurance companies

creating roadblocks to diagnosis or treatment or both.

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Why is pain management not taught at medical schools?

Only 3% of schools today give 30 hours instruction in four years, Yale most recently.

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At a major university hospital two hours away, she failed to respond to 14 stellate and brachial plexus blocks. But the wound reopened by itself, the stitch fell out. The psychiatry department evaluated her after she was so drugged with methadone, she does not even recall the interview. They diagnosed Munchausen Syndrome. That changed everything. Relationship went sour. Distrust of MD’s began and was confirmed many times in many places along the northeastern corridor and Texas.

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That fall, she became a student at the university of her dreams. The diagnosis of CRPS was confirmed at their university medical center hospital where they wanted to continue the same blocks that had failed. Elsewhere, the chief of a renowned ivy league university pain service wanted to talk to her only about spinal cord stimulators, declined by the family.

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In May 2010, she qualified for an NIH study of neurotropin double blind 6 weeks on, 6 weeks placebo. Failed.

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She was seen by Dr. Schwartzman in Philadelphia October 2011, and sent from there to NYC to rule out neuroma dorsum right hand, negative.

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On Lyrica, she gained 20 lbs, then back to 130 lbs baseline when off of Lyrica. Intolerance to Morphine – hives, Duragesic – total body itching. Ambien – hallucinations, Lunesta – hyper. Benadryl helped somewhat. Detoxing from Nucynta – lips were bright red.

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Her weight dropped from 130 to 115. Many medications were trialed and failed. Marinol helps pain slightly and gives the best sleep in years, better appetite. It does cause anxiety, but she had not slept in three years, and it gives 4 to 6 hours of good sleep. She developed sharp bitemporal headaches. I advised headache is a side effect of Pristiq —- now thankfully discontinued and better.

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Since August 2011, she has had CRPS pain in the right leg, worse walking, weight bearing.  There is discoloration of the dorsum hand usually, at times along proximal forearm, recently at right foot and leg. She had edema up to the shoulder measuring 30 cm. Nails growth faster at the right hand, possibly less hair growth right hand. Temperature usually cooler on the right hand, at times at night the hand and foot become hotter. No change in sweating noted.

The first year, she had almost total loss of function in the hand with pain and contractures —and forced herself to move the fingers with OT and PT, then home exercise. She still has days when the fingers remain flexed, but 98% of the time there is full movement as she continually tries to use the hand/fingers to write and type. Nose may become ice cold and tingly since CRPS spread to right side of face and right lower limb. At times tingling fingers. She struggles with memory when pain is severe and with lack of sleep.

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Pain ranges 7 to 10, average 8. Edema was significant for one year, now comes and goes. Allodynia is present hands and feet, now a different scale than before when she could not even be in the car.

However, with weight bearing and walking, pain of the right lower limb became most intense.  She will be 21 in July, but on a bad day was unable to leave her bedroom to walk downstairs as pain was too severe. She would communicate with family by loudly calling or texting. It was unthinkable to make plans for the next week due to severe pain. She has osteoporosis with atrophy of the right upper limb, and has had color changes and edema of the hand.

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She lives in an eastern state inland, two hours away from the mid Atlantic seaboard and major medical center. She failed ketamine infusion at a major university medical center on the east coast. The cost and inconvenience was significant and the family did not know that ketamine may fail to have any effect if taking opioid analgesics. Once mom discovered that, she was able to wean off the opioid medication. Ultimately, after many more interventions, much later, in crisis, she did benefit from IV ketamine infusion, and was able to regain some movement of her fingers on the right hand, but there was no lasting relief. It was a struggle to obtain approval through her insurance.

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She has been spending a great deal of time in bed for months. Morning stiffness is widespread for one to two hours. Bending is difficult, feels as if “hit by a bus,” but she does stretching, moving, distraction and Yoga when able.

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Much better in 10 days

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Day one: pain of the entire right side, face, trunk, limbs, rated 7 to 10 on a scale of 10, average 8. She guards the dominant right hand and the signature is difficult. Atrophy of the right upper limb is present, nails longer on the right hand, dusky dark erythema and long jagged scar over the dorsum right hand, mild erythema of the right upper and right lower limbs.

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On the first day, in the office, she tried the first dose of ketamine nasal spray and after a repeat dose, she was puzzled, thinking to herself, then let us know she realized she was able to concentrate. A small dose is not enough to relieve severe pain, but even major depression can vanish at that dose. Two sprays relieved the brain fog of depression; pain was still 8 on a scale of 10. Blood pressure and pulse did not change before and after doses. She felt hopeful.

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In the next few days she was able to do the unthinkable: make plans with friends, walk 45 minutes, become active, and remain active in a way that had not been possible. She was far more active with much less pain.  Over the weekend, six days after she arrived, after we had sequentially added several new medications, she found the dosage of nasal and sublingual ketamine that worked for her. She has actually had times when she was pain free. As noted during prior ketamine infusions, she requires a far higher dose than most patients to achieve effect. The plan now is to use higher doses at home when time permits for best effect, and booster sprays of nasal ketamine as needed when away from home. She can carry it in her pocket. There is no need for ICU infusions and the fight to get insurance coverage for those stays.

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Of great significance, she has even made plans for the entire summer.

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More details of her case will be added, as time permits. For now, this page is here to allow the patient and family and others to send comments. She will continue slow titration of other medications that will take three months before reaching the target dose, before we can assess efficacy. Based on my experience treating chronic intractable neuropathic pain including CRPS, it is possible these medications will be able to stabilize and relieve pain without ketamine.

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See other case reports of treatment of CRPS here, here, and here.

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You can read some of the science of pain, glia and inflammation. Ketamine is significantly anti-inflammatory. Three of her new medications are glial modulators. Treatment of severe chronic pain usually involves rational polypharmacy, not one medication and not medication alone. It requires a holistic approach to heal: P.T., O.T., massage, cognitive behavioral therapy, guided imagery, visualization, positive thinking, remaining active, and other modalities that depend upon the underlying cause: physical, emotional, spiritual, and financial. The treatment for CRPS is not specific for that condition alone, but the gains can be possible with tremendous discipline, effort, single minded determination and the loving support of friends and family.

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Be cautious of spinal cord stimulators. Try everything else first.

They can create pain and scarring or tether the spinal cord.

Be proactive.

Remember that guidelines and strategies for diagnosis and treatment are outdated.

Support RSDSA.org if you can.

They support high quality pain research.

You can go directly to their site or donate to them (not me)

using the link at the top of my site here.

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Patients and doctors do not understand that opioids create pain.

A 2006 publication from Vanderbilt shows how much better pain can be to taper off.

The abstract:

Significant pain reduction in chronic pain patients after detoxification from high-dose opioids.

The article:

Significant pain reduction in chronic pain patients after detoxification from high-dose opioids.

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More on this young woman’s journey coming.

It’s been busy!

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The material on this site is for informational purposes only,

and is not a substitute for medical advice,

diagnosis or treatment provided by a qualified health care provider.

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Please understand that it is not legal for me to give medical advice without a consultation.

If you wish an appointment, you will need to telephone my office.

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For My Home Page, click here: 

Welcome to my Weblog on Pain Management!

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11 Responses to “RSD, Complex Regional Pain Syndrome – a case report”

  1. Liz Says:

    We are so pleased with our daughter’s results. After 38 months of living hell, Dr Sajben’s medicine combinations have shown very significant pain relief for our daughter with the promise of even more pain relief possible. We have spent many,many thousands of dollars on both standardized treatment and alternative therapies. Our journey has been similar to that of most patients with RSD. I only wish we had come to Dr. Sajben much earlier. I have never met a doctor so invested in my daughter’s health. She truly spends the time to listen and figure out the best possible treatment plan and this is the first doctor we have met with a REAL understanding of how RSD works and how best to treat it. Well worth every penny!!!!!!

  2. Diane Kordek Says:

    Liz, As a parent I cou;dn’t be happier for you, your daughter and the entire family. As a full body RSD patient myself this is such encouraging news and I thank you for sharing it with us all!

  3. Vicki Robb Says:

    What a wonderful story! May your daughter’s path be ever upward into freedom from pain, brain fog, disability, insomnia, medical misdiagnosis and all the other aspects of her condition which you know all too well. Dr. Sajben is, indeed, a treasure.

  4. Laurie Says:

    This is fabulous!!! After 28 months of dealing with the RSD journey with our young daughter (initially her left foot/leg with temporary spreads to many areas (with injuries), Gastroparesis, syncope, chronic headaches and dysautonomia issues) we have found Ketamine infusions, as well as a low dose of Lyrica, Elavil, Namenda and at times Celebrex to be what helps her maintain a plateau between infusions. She is completely mobile but pain and allodynia remain and unfortunately most of her flares are from the frequent injuries. We have recently started LDN and have hopes that it may help both her allodynia(her most stubborn symptom it seems) as well as prevent all injuries, especially the slight ones, from becoming flares.

    I’m happy to hear of “out of the book” thinking and treatment of RSD.

  5. betsykk Says:

    So far the use of the nasal k and sublingual k has kept pain from bumps and bruises down. We continue to be amazed at the changes we are seeing in a little under three weeks. I will continue to post progress for all those who are interested or are thinking of trying this treatment.
    Liz

  6. liz Says:

    It has been one month since we first went to Dr Sajben. I’d like for my daughter to post but she just spent a week at Bonnaroo with friends so I guess that is a report in itself. The last text she sent told me she tossed a football for fifteen minutes. This was unheard of a month ago! We are so pleased with the results and so glad we made the trip to San Diego. We are so grateful!

  7. Donna De Arkos Says:

    It has only been a couple of days since we returned from seeing Dr. Sajben. My daughter was diagnosed with CRPS three years ago and has seen many doctors, all over the place. Dr. Sajben is, by far, the most knowledgable, compassionate doctor we have met. However, my daughter has not had the same success as others have had with nasal ketamine. In comparison, it is disappointing, but to us the tiny improvements she is having are worth it. We are very hopeful that some of the other medications she started will have an effect soon. Two days after returning from San Diego we were on our way to a family picnic and when asked, my daughter told me her pain was at a 7. I have not heard that number in posibly a year. Her pain varies from 8 – 9. This only lasted her a short while, but it was priceless to have even a short while of relief after three years of the monster, CRPS. And…we were on our way to a family function. She chose to go instead of staying home and resting!

    We ar blessed to have met Dr. Sajben and I know she will continue to be a positive part of our daughters journey.

  8. crps pain management Says:

    Although early diagnosis and treatment is crucial to limit the disability from CRPS, it is a difficult condition to diagnose. Fortunately, there’s a growing community of doctors who are doing their best to help.

  9. Liz Says:

    It has been almost 6 months since we first went to Dr Sajben. There has definitely been some trial and error working with the medicines and dosages. We are still seeing good results and are very happy that we decided to travel cross country to be seen by such a fine, compassionate doctor who understands the debilitating illness of RSD and all that it entails.

  10. Petra S Says:

    I wanted to give my heartfelt thanks for your website. My daughter was diagnosed with CRPS about 1 1/2 years ago following cold laser treatment to her knees. She lost 1/2 of her Grade 9 year and part of Grade 10. Lyrica allowed her to return to school but with flare ups of pain and a high absentee rate. She was having trouble coping with the emotional side effects of Lyrica. In addition she started to suffer from extreme weakness and hot flashes which we finally linked to extremely low magnesium although we are not sure why this happened. I stubbled across your web site and even phoned to speak to you about flying down from Canada. In the end I found a doctor in Toronto who was willing to try the LDN for my daughter and I am happy to say she has been pain free for 3 months and only suffers from a bit of fatigue still. Thank you so much for your experience!


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