chronic illness · chronic pain · crps · ivig · ketamine

Putting Out the Flames: CRPS/RSD Treatment Options #2

Hey hey!

This is the second part of a two part series about CRPS/RSD treatment options. You can find the first part about medications and supplements here. If you don’t know what CRPS/RSD is, please go visit this page first as it explains more about this extremely painful and debilitating condition.

There is NO cure for CRPS as of right now.

As important as medications and supplements are, infusions and treatments are also a big part of trying to get relief and remission. Like my last post, I have put ** by any treatments I have tried. Please message me if you have a question about any of the treatments/infusions and I will do my best to answer it!

So let’s start by talking about….

**Ketamine infusion: 

As discussed in my “K is for Ketamine” post, Ketamine has become one of the top treatments for CRPS both with infusions as well as at home methods like ketamine nasal spray and ketamine creams. The benefit to doing ketamine infusions is that you are getting a much higher dose of ketamine than is possible with any at home method. Some infusions are outpatient and some are inpatient, infusions usually last 2-10 days. Dosing depends on a number of variables including the protocol your dr uses, your weight, and how you tolerate the infusion. You can read more about my first ketamine infusion here. (must have a prescription)

**IVIG infusion: 

Intravenous Immunoglobulin is a medication made up of antibodies from human blood plasma. Due to it’s effects on the immune system, IVIG is helpful for many auto-immune diseases like Guillain–Barré syndrome, Primary Immunodeficiency, and Measles. IVIG has also been found to be helpful for small fiber neuropathy and CRPS. “The rationale for investigating IVIG for the treatment of CRPS is the recent detection of antineuronal (the exact autoantigen remains to be determined) autoantibodies in patients with CRPS. Intravenous immunoglobulin not only potentially interferes with these autoantibodies but also downregulates proinflammatory cytokines, which are important in the mechanisms of CRPS pain and hyperalgesia, in the periph- eral and the central nervous systems” (source) You can read more here. (must have a prescription)

Plasmapheresis:

Plasmapheresis is the removal, treatment, and return or exchange of blood plasma, it is also called Plasma Exchange. After seeing improvements with IVIG for CRPS patients, researchers questioned whether plasma exchange could also be beneficial especially due to the possible auto-immune aspect of CRPS. “Recently, autoantibody findings suggested an immune-mediated physiopathology of the disease. We here describe two otherwise treatment-resistant patients with complex regional pain syndrome and high-titre beta2 adrenergic receptor autoantibodies, who did respond to plasmapheresis. Both patients showed strong improvement of pain and autonomic symptoms measured by impairment level sum score.” As of right now plasmapheresis needs to be researched more heavily but some drs are recommending it to CRPS patients especially when used in combination with IVIG. (source)

**Lidocaine infusion:

Lidocaine infusions work to decrease the alloydnia of CRPS just like Lidocaine patches and compound creams. “Systemic administration of lidocaine has been shown to have analgesic actions in patients with chronic neuropathic pain. Lidocaine decreases pain by inhibiting nerves through the blockade of sodium channels. Systemic lidocaine is thought to inhibit spontaneous impulse generation arising from injured nerve fibers and the dorsal root ganglion, and by suppressing primary afferent reflexes in the spinal cord.”(source) The lidocaine infusions are sometimes used in conjunction with Ketamine infusions.   You can read more here. (must have a prescription)

Magnesium infusion: 

In the past few years, magnesium has become a popular supplement to treat neuropathic pain. As of right now, we aren’t entirely sure how magnesium can affect chronic nerve pain but recent studies have shown that magnesium can be helpful. “Experimental evidence in animals found that magnesium regulates processes involved in the inflammatory response. When cellular magnesium increases, inflammatory processes such as the release of pro-inflammatory proteins decrease. Magnesium may also prevent the activation of receptors found in nerve cells that regulate pain”(source). Here is a research study on magnesium infusions and CRPS. (must have a prescription)

**Physical Therapy:

Physical therapy is a huge and important part of treating CRPS. It is important to keep moving the areas that CRPS affects and a well trained Physical Therapist will be able to help you find ways to move those areas without pushing you too far and sending you into a major flare up. For those like me who have CRPS in their feet and legs and have lost the ability to walk, PT may also focus on re-learning how to weight bear, normalizing your gait, and strengthening your lower body.

Many find pool PT to be helpful as it is easier to move and walk in a pool. The warm water can also be very soothing to painful areas.

Another important part of PT includes desensitization which over time will help desensitize the painful CRPS areas and help the brain “reconnect” with the CRPS areas since you become avoidant of those areas because of the severe pain. My PT started with having me lightly touch my feet and left leg for 1 minute while in the pool. I then gradually moved to being able to touch my feet and leg for 5 minutes. I also desensitize at home by wearing shoes, tight pants, or leggings that are normally very painful for a few minutes

 Graded motor imagery and mirror therapy may also be used to break the CRPS feedback loop.  I use this app for graded motor imagery. You read more about both in 2 of my posts (1, 2).

**Sympathetic Nerve Blocks:

Sympathetic nerve blocks are a kind of injection that are used to block the pain signals from your CRPS areas to your spinal cord. The injection of local anesthetic like Novocain (some may also include a steroid as well). The injections are usually done in a series with the goal of trying to “reset” the brain and spinal cord as well as giving temporary relief so the patient can do more in PT which then helps to break the CRPS “feedback loop”.

These blocks are also often used as a diagnostic tool to confirm a CRPS diagnosis.

You can read more here.

**TENS unit: 

TENS stands for (Transcutaneous Electrical Nerve Stimulation). It is a small electrical device with electrodes that you place on or around areas of chronic pain. The machine works “by sending stimulating pulses across the surface of the skin and along the nerve strands. The stimulating pulses help prevent pain signals from reaching the brain.” (source) Besides blocking pain signals, the TENS unit can help encourage  your body to create higher levels of endorphins which are our bodies own natural painkillers. This is often a device drs will offer early on in CRPS treatment. Some find it very helpful and some find it makes their pain way worse (I am in the second category). (can purchase online)

Spinal Cord Stimulators:

A spinal cord stimulator (SCS) is electrotherapeutic device surgically placed in a patient’s spine. The device emits electrical “pusles” to the spinal cord which interfere with the overactive nerves that are creating the nerve pain. Instead of targeting the CRPS at the source, a spinal cord stimulator works by targeting the CNS (central nervous system).

“Nerve stimulation is done in two steps. To see if it will help your pain, your doctor will first insert a temporary electrode through the skin (percutaneously) to give the treatment a trial run. The electrode is connected to a stimulator that the patient can control. If the trial is successful, your doctor can implant a permanent stimulator under your skin. This is typically done using a local anesthetic and a sedative. The stimulator itself is implanted under the skin and the small coated wires (leads) are inserted under the skin to the point where they are either connected to nerves or inserted into the spinal canal.” (source)

Some find relief with it and some do not. There are risks like developing scar tissue at the placement site, hardware failure, infection, as well as the SCS no longer controlling the CRPS pain. Here is a research study on Spinal Cord Stimulators.

Dorsal Root Ganglion Stimulator:

The Dorsal Root Ganglion Stimulator (DRG) is a fairly new treatment that has recently become approved for CRPS. Like the Spinal Cord Stimulator, it is a electrotherapeutic device but instead of being placed in the posterior aspect of the spinal cord, it is placed specifically on the dorsal root ganglion.

“The dorsal root ganglion is a bundle of nerve cell bodies (i.e., a ganglion) located within the posterior region of various vertebrae along the spinal column and is adjacent to the dorsal nerve root. The primary function of the dorsal root ganglion is to transmit information regarding sensory function. As such, the dorsal root ganglion carries sensory neural signals from the peripheral nervous system to the central nervous system, which includes the spinal cord and brain.” (source)

Recently there has been some evidence that shows that the dorsal root ganglion could be to be blame for an overactive central nervous system which leads to many of the symptoms associated with CRPS like central sensitization as well as allodynia. This makes it a valauble option for CRPS specifically for those who have CRPS on one side as well as lower body CRPS due to how the leads can be placed. You can read more here.

**Calmare Therapy:

receiving Calmare treatment Dec 2015

Calmare Therapy (also known as a Scrambler Therapy) is an electrical machine that “uses a biophysical rather than a biochemical approach. A ‘no-pain’ message is transmitted to the nerve via disposable surface electrodes applied to the skin in the region of the patient’s pain. The perception of pain is cancelled when the no-pain message replaces that of pain, by using the same pathway through the surface electrodes in a non-invasive way.” (source) It is completely different than a Tens unit both in how it works and even how it feels. While Tens units work to block the nerve pain from reaching the brain, Calmare therapy works by scrambling and confusing the overactive nerves. This then allows the overactive nerves to reset and not continue in a chronic pain feedback loop (which is why this is a GREAT treatment for CRPS). You can read more here.

**Hyperbaric Oxygen Treatments: 

HBOT, hyperbaric oxygen tank, lyme disease, bartonella, bartonella

Hyperbaric Oxygen Treatment (HBOT) is a medical treatment where a patient in placed in a pressurized treatment chamber where they are able to breathe in 100% oxyegn. This is possible because “the pressure of the chamber is increased to greater than atmospheric pressure (one atmosphere absolute / one ATA). Under normal atmospheric conditions, (one ATA) we are subjected to approximately 14.7 pounds per square inch of pressure and the air we breathe is composed of 21% oxygen and 79% nitrogen. During HBOT the pressure can be increased up to three times’s normal atmospheric pressure (3 ATA) creating a higher partial pressure of oxygen.” (source)

The reason this treatment can be helpful for CRPS is because hyperbaric oxygenation is able to decrease inflammation as well as edema, both symptoms that are problematic with CRPS. It is also able to increase blood flow to the areas that have been ravaged by CRPS. Patients report experiencing “an increase in muscle tone and notice that they are able to sleep more restfully, feel less depressed, think more clearly and are able to establish more regular routines in their daily lives. ” (source) As of right now this is considered a experiemental treatment for CRPS. You can read more research studies here.

I hope that this post can help others with CRPS be reminded they are not a lost cause and that there are options out there and I choose to believe there will continue to be options.

You and I both deserve a cure and I pray every day there will be one…

but please please please remember

You are not a lost cause.

5 thoughts on “Putting Out the Flames: CRPS/RSD Treatment Options #2

  1. Thanks so much for the great article.
    My question is in regards to Ketamine infusion. I had a chance to receive the infusion. I was told by a pain mngmnt Dr
    that I could not use pain med and receive the infusion. It was either one or the other. I have had Crps for 23yrs, unfortunately I am dependant on pain meds. Question is this normal for doctors to require or was this doc’s request the exception?

    1. You are awesome Genevieve!
      This is my favorite place to get great coverage of Crps. You have more in these 2 articles than I have heard from a dozen pain mngmnt Docs
      Thanks again for your time and work here, all being done as you fight the good fight with multiple ailments to say the least. You are valuable and an inspiration to others.

      1. Steve I awoke this morning to this comment and it immediately made me teary. THANK YOU. It is an honor and a privilege to write posts that I hope will help others in similar positions. Thank you so much for reading and I hope you will comment again. Its always awesome to talk to others with CRPS, its an awful lonely disease and I think we all draw strength from each other as we navigate this rocky long path. Take care and have a great day!!
        -G

    2. Hi Steve!
      So this is true to some extent. My understanding is that opiates can mess with ketamine’s ability to properly work upon our NDMA receptors. I had to get off of my fetanyl patches in order to start ketamine infuions but was allowed to stay on my morphine IR. Different drs have different protocols so some may expect patients to get completely off opiates and some are ok with you taking a small amount especially if it’s immediate release. I usually use my infusions as a time to try and go lower on my pain meds since I am getting relief with the ketamine. The past few times I have done this I have had MUCH better results with my ketamine which my treatment attributes partially to my taking less opiates. So yes it is normal for dr’s to require but some dr’s have different protocols. Does that answer your question?

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