chronic illness · chronic pain · crps

Putting Out the Flames: CRPS/RSD Treatment Options # 1

One of the most meaningful parts of blogging is being able to create things that help others. It’s truly one of the most gratifying feeling when people message me on instagram or email me to say that a post helped them. I am writing this post in hopes of helping a lot of people.

Many people who come to this blog have never even heard of Complex Regional Pain Syndrome and many others have CRPS/RSD and looking for commiseration and other treatment options. I like that I can use this blog to help educate those who know nothing about this illness or living with chronic pain but I also really like that I can show solidarity to people who are living similar lives as me.

A few weeks ago I decided I wanted to write a post about treatment options to help educate those who are newly diagnosed. I also wanted to write it for those who have been dealing with CRPS for many years and looking for new treatments after finding many unhelpful.

Before I start I want to state that as of right now there is NOT a cure for CRPS. Remission is possible but those who were not diagnosed within the first 6 months have a much harder time getting into remission.

I know talk a great deal about ketamine infusions on my blog because it has been the only helpful treatment I have found in the past 5+ years dealing with CRPS. However for those who cannot access ketamine, did not find ketamine helpful, or do not want to try it…there’s still MANY other options.

I wanted to start by covering medications and supplements since these are an important component of CRPS treatment.

 Many of these are treatments I have tried but there are some I haven’t.Please message me if you are curious about a specific treatment and I will share what my experience was, I have put an asterisk (**) by the treatments I have tried. It is REALLY important to remember that our bodies are each different and one treatment may work fantastic for one person and be a complete flop for another.

Don’t decide to not try a medication or treatment simply because another CRPS patient didn’t find it helpful!

**Anticonvulsant: 

Drugs that are used for seizures and bipolar disorder have also been found to help chronic nerve pain. These drugs work by interfering with overactive pain signals due to overly sensitized nerves like with CRPS and Fibromyalgia or from damaged nerves due to Diabetes, Lyme Disease, or Shingles. The most commonly used anti-convulsants are Neurontin, Lyrica, Tegretol, and Topamax. (prescription only)

**Antidepressants:

Both older tricyclic and newer anti-depressants have been found helpful in decreasing neuropathic pain. Antidepressants can also help with the inevitable depression that comes with chronic pain as well as help decrease headaches and insomnia. You can find out more here. These types of anti-depressants have been found most helpful: Tricyclic antidepressants, Selective serotonin reuptake inhibitor (SSRIs), Venlafaxine, Bupropion, and Duloxetine. (prescription only)

**Anti-Spasmodics: 

Muscle spasms are a symptom for some of those with CRPS. I have experienced these in the past and it’s pretty awful. Medications like Zanalfex, Baclofen, Soma, and Flexural may help to decrease the spasming.  (prescription only)

**Topical analgesics:

 Lidocaine is a medication that can be used to numb an areas especially an area that is painful. Lidocaine comes in several forms, the most common forms for CRPS are Lidocaine patches and Lidocaine cream. The Lidocaine cream is made by a compounding pharmacy. Both Lidocaine patches and cream can be helpful in decreasing the allodynia that occurs with CRPS.  (prescription only)

**NDMA-antagonists:

“The NMDA is a receptor for the excitatory neurotransmitter glutamate, which is released with noxious peripheral stimuli. The activation of NMDA receptors has been associated with hyperalgesia, neuropathic pain, and reduced functionality of opioid receptors.” (source) NDMA antagonists work to block these NMDA glutamate receptors and thus decrease neuropathic pain. NDMA-antagonists can also work to decrease opiate tolerance, an added bonus within pain management.  (prescription only)

  • Ketamine: Ketamine is the most well known NDMA-Antagonist within pain management. It the past few years it has become recognized as one of the “hot” new treatments for CRPS. The most common ways to take ketamine at home are ketamine nasal sprays, ketamine troches, and compounded ketamine creams. (You can find out more about ketamine in the link above)
  • Namenda: Nemenda is an alzheimer’s drug that has been found to be helpful for CRPS due to being an NDMA-antagonist. Studies so far find it helpful. You can read more here.
  • Methadone: Methadone is most well known as an opiate, it became popular many years ago in helping addicts get off heroin. Methadone is also an NDMA-antagonist which makes it very helpful in treating neuropathic pain as it’s working on decreasing pain as well as giving patients relief as an immediate relief opiate.

Bisphosphonates: 

Bisphosphonates are a type of bone loss medication, usually used for osteoporosis. CRPS can cause bone loss in the areas affected so Bisphosphonates can help with decreased bone loss along with decreasing pain. Studies so far it helpful, you can read more here. Sadly as of right now Bisphosphonate infusions are only licensed for the treatment of CRPS in Italy.

**Clonidine:  

Clonidine is used for a number of conditions like high blood pressure, pain disorders, and opiate withdrawal (oral Clonidine has been a godsend in helping me get off of opiates without having awful withdrawls FYI). Clonidine patches (known as Catapres) have been found helpful with CRPS due to their ability to inhibit the sympathetic nervous system which then reduces CRPS pain. The patch must be placed on the areas that CRPS affects in order for it to work.  (prescription only)

**Low Dose Naltrexone:

Low Dose Naltrexone (commonly known as LDN) is an exciting new medication that has been found to help a number of conditions like MS, Lyme Disease, Crohn’s Disease and many other auto-immune disorders. LDN works by briefly blocking our opiate receptors at night causing our bodies “to produce a prolonged up-regulation of vital elements of the immune system by causing an increase in endorphin and enkephalin production.” (source) Besides boosting our immune systems, LDN works well for CRPS due to it’s ability to inhibit the activation of micro-glia. This is important since CRPS involves glial activation and central sensitization in the central nervous system. LDN is an off-label version of Naltrexone and is only made in a compounded pharmacy. (prescription only)

**PeaPure:

Palmitoylethanolamide is a molecule found within our bodies and has been developed into as supplement. PeaPure has been found to have analgesic and anti-inflammatory properties and has recently become popular amongst CRPS patients as well as treatment providers. You can read more here. Besides oral supplements there is also a cream form. (can be purchased online)

Kratom:

Kratom is a tropical evergreen tree in the coffee family native to Southeast Asia that contains alkaloids that act as opiate receptor agonists. Krater has both stimulant and opiate properties and has become more popular as pain medications have become harder to access for chronic pain patients. There are several strains of kratom, some are better for pain while others are better for energy and concentration.  (can be purchased online, may not be legal in your state) **Edit: I now have a separate post on my experience trying Kratom which you can read here.

**Opiates:

Opiates are a hot button issue right now but I feel its necessary to talk about their use with CRPS. CRPS is a terribly painful disease and managing that pain is often necessary just for patients to tolerate wearing clothing or just getting out of bed in the morning. Different drs have different opinions about long-term opiate use. Unlike the rest of the mediations on this list, opiates have no beneficial affect on CRPS beyond giving people relief. I have taken opiates on and off the past 5 years and for me they have been helpful in being able to do more at PT as well as being able to do daily things or even go out to dinner with my family. (prescription only)

*CBD oil:

CBD (Cannabidiol) is one of at least 113 active cannabinoids identified in cannabis (marijuana/hemp). CBD is non-psychoactive (unlike THC which is what gets people high) and can help with a number of different symptoms and diseases, one of which is neuropathic pain. “When an injury takes place, increased Glial cell production forms around the neuro junctions. These Glial cells produce Cytokines which are chemical transmitters spreading inflammation and signaling pain. When a molecule of CBD binds to the Glial cell, the cytokine production decreases and the patient feels a marked decrease in pain. This would also explain why some patients have pain relief that lasts way beyond the theoretical effect of the CBD.” (source) Unlike medical marijuana, CBD oil is completely legal because it is derived from industrial  hemp and contains minute amounts of THC. You can also vape CBD wax, eat CBD candy, and use CBD lotion. (can be purchased online)

*Medical Marijuna:  

Besides CBD oil, many with CRPS also find relief with medical marijuana. THC and CBD work together synergistically and many find it more helpful than CBD oil made from hemp. It is important to use a marijuana strain that has a high percentage of CBD vs. THC since CBD is what provides the most pain relief (although many find weed with high THC levels to also be helpful). Sites like leafly.com can be helpful in finding which strains work best for neuropathic pain and also allows you to compare CBD and THC percentages per strain. (can be purchased in a dispensary, may need a prescription depending on the state’s regulations)

So as you can see there’s MANY options for medications that help CRPS. It is often common to take several together and its important to note that it may take some time to find the right “cocktail”.

Here is the 2nd part in this series.

 

 

 

 

 

 

 

8 thoughts on “Putting Out the Flames: CRPS/RSD Treatment Options # 1

  1. Wow, that’s an impressive compilation which I’m sure will be helpful to many others out there! While I don’t have CRPS, I do take some of these meds for epilepsy and depression. Makes me even more curious about them. A pity half of those drugs are not allowed from where I fome from.

  2. Thank you for sharing this! I’d like to add that a mild diuretic has been helpful for me in reducing the swelling associated with CRPS. Best wishes to you!

  3. I just got diagnosed last week. It’s been about 3 months since the surgery that triggered mine. They are going to try a stellate ganglion nerve block first, then gabapentin if the block doesn’t work. Everything about this is frightening and sites like this are so helpful. Thanks
    Barbara

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