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Hi There!
One of the things I get asked a lot in our Ferocious Fighters parents groups is what we do to keep Patrick going. Having a set of tools is important to fighting CRPS and remembering what works and what doesn’t for your specific kiddo can be a challenge when a flare hits and everything goes downhill fast. So, I’ve put together this list of things that are working or have worked for us because you never know when someone else’s toolbox will give you an idea of something to try.
Keep in mind that Patrick has full body CRPS and hasn’t ever been in remission, so our tools are more focused on management and retaining functionality. Also, Patrick has significant additional health challenges on top of the CRPS so some of these have impact on some of his other conditions as well.
I have provided links to the products we use when possible as I have received that question a lot when I post in the parents groups for Ferocious Fighters.
Our daily use tools tend to focus on dealing with any nutritional/vitamin deficits that impact the neurological and immune systems as well as those that improve blood flow and strengthen muscles.
Everyday Tools:
- LDN – Low Dose Naltrexone (prescription)
- Physical therapy exercises daily (home program and weekly sessions)
- At least 60 minutes of physical activity of some kind (usually baseball or strength training)
- ALA
- Magnesium supplement
- B2 supplement
- Vitamin D supplement
- Compression gear as needed (pants for Patrick)
- Massage and chiropractic
- Lots of hydration (rotate between water and electrolyte drinks like Liquid IV or Body Armor)
- Vitamin C supplement
- Kinesio tape
- Bracing for unstable joints – we have braces for ankles, knees, shoulders, backs, and wrists in our house for use when needed.
- Lotions to increase blood flow like Deep Blue from Doterra
- Tens Unit as needed for muscle spasm
- IV Magnesium (prescription)
- CBD/THC medications
- Oral ketamine (prescription)
- D-Ribose (before workouts/baseball games to give extra energy)
- Probiotics (prescription)
- Epsom Salt baths with 2 cups of salts
When a flare hits everything intensifies and there are some tools that we can put into play that we don’t use all the time. Our focus here is to get the CRPS to let go of blood flow, decrease sensitivity, and get to the movement ASAP.
Flare Tools:
- Warm compresses/heating packs
- Gentle desensitizing (Patrick tends to do water or rubs the affected area with a soft blanket/towel)
- Aqua therapy (We do this on our own in a local warm water pool for a couple of hours each day in a flare)
- L-Argenine (This opens up capillaries and encourage blood flow, we use a pretty high dose during a flare.)
- OSKA (This helps with the inflammation that usually plays a role in a CRPS flare for Patrick.)
- Additional PT/Chiro/Massage as indicated
- Compound ketamine/baclofen/gabapentin cream (prescription)
- Baclofen (prescription)
- Ketamine infusions (prescription)
As an aside, in addition to the tools that are in our tool box now, there are some others that are worth mentioning as they have been successful or showed good indications for Patrick in the past but aren’t currently tools we are using.
Other Tools:
- HBOT – Deep Dives 2.4 ATA
- Recognise app (was good before full body spread, doesn’t help now)
- Pain psychology to learn coping skills for the pain
- Scalp acupuncture showed signs that it might be effective for P but we couldn’t afford to stay out of state long enough to see what happened.
- Horse therapy (working with horses) and hippo-therapy (riding horses) were great concrete psych tools when he was young and struggling to calm his body from the pain
As you can see, we do and have used a wide variety of tools to help Patrick stay functional despite CRPS and all of his other health challenges. None of these tools is enough by itself but together they help Patrick fight through the pain to enjoy things like baseball, playing Minecraft with his friends, and writing letters to other Ferocious Fighters kiddos.
I’d love to know what’s in your toolbox too! Leave a comment or a question!
Love Always, Meg
Christine Wells
Great list! We use most of what you listed, mostly because you gave us the ideas long ago lol. Additionally we use mindfulness meditation to help. It’s no miracle but it does relax her body and help her sleep. The better sleep she gets the better she can deal with the pain. We have found the Andrew Johnson line of apps to be particularly helpful in relaxation, and reasonably priced. We also make our own essential oils muscle spray that kinda calms things down, we adapted a muscle rub recipe into a spray because touch is just too painful, the flare it causes is not worth the small amount of help it provides. We diffuse oils as well. At times we have even bought lidocaine spray (like for sunburns) again no miracle, but it can be helpful to calm things down just a little and every little bit helps. Sierra has been full body since a month after her pain started, and has never had remission so like you we do what we can to keep the pain at a manageable level so she can live her life and keep function. I’m sure there is more that I’m not thinking of right now, but if I think of them I will comment again later!
Meg
Thanks Christine! I am so glad that Sierra is living life anyway! So proud of her and you! Hugs!
Lynne Bergman
Great list, Meg. On my CRPS list (we’re up to 700 members!), we like to talk about our tool boxes as well. We always make sure to include things that help emotionally as well because many of these things help us relax and remind ourselves about self-care. We talk about essential oils that can help with burning but may be just as important to help us relax.. fragranced lotions we love, lighting candles and turning down harsh lights, soft blankets, pillows and stuffed animals that don’t mind being squished, playing music or even watching movies that will distract us, make us laugh or involve us in the storyline, if possible. Sometimes, using these types of tools can delay needing some of the “big guns”. Thanks, again, for all you do, Meg. Lynne
Meg
I love it! We have done a lot of talking about mindfulness in our parents groups over the last few years and I might just do another blog entry about that part of things as I really thing that it makes a huge difference, too! Thank you for brining up that aspect!
Cate
Have you tried Narindronate infusions ?
Meg
We haven’t. Last I heard the clinical trials in the US have currently been stopped due to a lack of affirmative response but we definitely keep an eye on things as they come around and I do know some folks who had positive responses from this treatment.
Pam G
Hi, how does everyone manage school and educating these poor kids?
Meg
It can be a huge challenge! I wrote a guidance for schools recently and it is in the Ferocious Fighters parents groups in Unit 1 for all of our parents to use as needed. Have you seen it? It isn’t a fix but hopefully helps with tools! Sending you love, I know that this is SO hard!