chronic pain · crps · ketamine

when the road gets rougher: how to deal with a CRPS spread

One of the hardest parts of having Complex Regional Pain Syndrome  also known as Reflex Sympathetic Dystrophy is the fact that it “spreads” which essentially means that your brain for whatever reason can start to send the “wrong” aka PAINUL nerve signals about other body parts beyond the original area where you first developed CRPS/RSD.

This means you have CRPS pain in multiple places and may also experience some of the other symptoms of CRPS like swelling, color changes, temperature changes, hair loss, bone loss etc.

Sometimes a spread will happen when you injure yourself, similar to how CRPS starts for people. It can happen over an injury as simple as bumping your pinky toe against a chair (this is how my first spread happened). It can also happen for no reason at all which is always so frustrating and confusing all at once. Ive had a few spreads just happen out of the blue where one day a part of body just began to HURT terribly and there’s no rhyme or reason for it.

I didn’t experience spreads until my CRPS became severe in Feb 2015. I then had three spreads fairly close together, my right pinky toe in May 2015 followed by a spread from my left foot up to below my knee a few weeks later. On November 23, 2015 the CRPS then went from being in my entire left foot and lower leg to being all the way up to my hip bone.

I started ketamine a few months later and didn’t have a spread for awhile. I thought perhaps the ketamine had stopped my brain from creating another spread and hoped that I would not experience anymore spreads.

Then at the beginning of November, the spread to my left arm and hand happened and now it has spread into my right arm as well.

This is all the places my CRPS/RSD is at now located:

CRPS spreads in 70% cases and DOES spread to internal organs.

There are people who have CRPS full body (I cannot fathom this and those who have it full body are my heroes). At this moment in time we don’t know exactly WHY crps spreads. Those with CRPS live with some uncertainty due to the fact that at any time it could spread, either because you accidentally hurt yourself or for no reason at all.

I honestly live my life on somewhat high alert and any injury is one I treat seriously.

So what do you do when your CRPS/RSD spreads? Here’s somethings I have found helpful…

1) Give yourself time to grieve

Listen to me when I say “you have EVERY right to be scared”.

A CRPS spread is terrifying between the intense pain, the loss, and the fear that it may spread more. It’s hard to admit its even happening and even harder to try to go about the day when your brain and nervous system is on high alert.

You are allowed to be scared right now and you are allowed to be devastated.

This is something no one can prepare you for and in all honesty, every spread has been devastating for me. Each spread is like losing a piece of myself. Each spread feels like CRPS is winning and I am losing.

So if you need to cry, scream, etc DO IT.

My best friend brought over a bunch of plates and cups for me to throw when my CRPS spread into my left arm and hand  and let me tell you, it REALLY helped to get some of my feelings out that way. Maybe get some eggs and throw them against a tree or rip up some paper!

If none of that appeals to you, lock yourself in an empty room and just scream.

This is hard and it’s ok to feel BIG emotions about it.

2) Talk to your treatment team

I let my treatment team know ANY TIME I am having a spread because I know its information they need to know.

Sometimes doing an emergency ketamine infusion or starting a series of nerve blocs can help reverse a spread. Your pain dr may have a few different protocols for CRPS spreads since this is a part of the condition.

You should also let your physical therapist know and if you don’t have a PT, GET ONE! Starting aggressive PT with a spread can be really helpful so despite your fear of flaring up the newest spread…you need to get going on a PT routine to “remind your brain” that this feedback loop is “wrong”.

3)Be proactive

While reversing a CRPS spread can be a daunting task, there’s small things you can begin to do at home to help you brain and your body. These are all things to try to help with CRPS in general but that can DEFINITELY  be used as tools to try and decrease/reverse a CRPS spread. I also think its important to have things “to do” so that you feel like you have some “control” in a situation that can feel VERY helpless.

It never hurts to try out being “proactive not passive” for something that is so incredibly hard to experience both physically and emotionally.

*Vitamin C: Vitamin c has been shown to be INCREDIBLY helpful in preventing CRPS when people are injured. In one study done in 2009 two groups of patients were studied for 46 days after receiving foot and ankle surgeries. One group of patients were given 1,000 mg of vitamin C a day for 46 consecutive days following their surgery. Another group was given a placebo following their  surgery. The group that was given vitamin C had a GREATLY reduced percentage of CRPS development!!!  I found out recently that CRPS spreads in any injuries or surgeries around the tarsal tunnel VERY easily which is why they chose to study that those two parts. Another study was done on wrists (CRPS also spreads easily around the medial nerve aka Carpal Tunnel) and they also found that vitamin C reduces CRPS from developing after a surgery.

This research has been taken by the CRPS community to suggest that possibly vitamin C can also help with CRPS spreads so many will now take high doses of vitamin C to prevent spreads as well as to try and decrease a spread if one occurs. I have spoken to people with CRPS who said taking high doses of vitamin C reversed a spread so it CAN work apparently. You want to be taking at least 1000mg of vitamin C 2-3x EVERY DAY. I am giving it a go to see if it helps my spreads!

 

* Graded Motor Imagery:  Graded motor imagery is REALLY important with CRPS in general but can be VERY helpful with spreads too. It’s something everyone with CRPS, especially people newer to CRPS should be doing. CRPS happens when your brain gets stuck in a faulty feedback loop.This image explains that loop VERY WELL.When your brain is caught up in this CRPS loop”your brain “disowns” the body part, recognizing it as threat, instead of your hand or foot.  When your brain recognizes a threat to your survival, it produces pain to protect you.  It is an alarm system that goes off so you can treat the injured area.”However, in cases of CRPS, this alarm system is faulty…When you have pain for a long period of time the homunculus associated with the painful body part can get “smudged” in the brain. When the affected area is smudged or fuzzy, the brain map is not clearly defined, creating confusion in the brains higher centers.  This phenomenon is most related to lack of movement and use.  In other words, use it or lose it!  When this blurring occurs, the brain becomes confused and produces pain to protect you.  This is the brain’s way of trying to identify the body part that has become smudged.” (source)

Graded motor imagery works on reintroducing your brain to those smudged areas and as well as essentially “reteaching” your brain that the body part/s it has disconnected from are actually “ok/safe”. You can do it with flashcards, circling all right/left limbs on the ads inside a magazine, workbooks etc. Graded motor imagery all focuses on allowing you to differentiate whatever side your CRPS is on or in cases of full body CRPS whatever sides/limbs are the MOST affected by CRPS.

For example lets say you have CRPS in your left foot/leg/arm/hand like me…you would use flashcards to choose ALL the left feet or left hands you see. Sounds simple right? Well when you have CRPS your brain doesn’t “recognize” left feet well because of the “separation” that has occurred (explained above). It was SHOCKING to me when I started doing graded motor imagery and saw how horrendously slow I was compared to recognizing right feet! One benefit of graded motor imagery is that you aren’t even using the limb/s (which if you have CRPS you know how PAINFUL it is to move the areas that are affected by CRPS).

“The primary area in your brain that GMI works on is the motor and sensory strips.  These areas control the movements and sensations you feel.  In each strip, there is “space” for each body part.  This picture is called the homunculus, and is a representation of the cells devoted to each body part in your brain.  Some areas of your body are represented by a larger area in your brain, depending on how much movement and sensation that body part needs.  For example, your hands and mouth have a large representation in the motor and sensory strip, because of all the fine motor activities your hands perform and the many motions your mouth has to make to speak and eat.” (source)

I like doing Graded Motor Imagery through the Recognize app. It is an AMAZING app that really allows you to “connect” to your CRPS limbs in a number of cool ways. They have several different apps for different body parts including shoulders!When you get a spread, START DOING GRADED MOTOR IMAGERY ASAP! Help remind your brain that the CRPS loop is wrong!

 *Desensitization: Desensitization is another tool you can do at home when you have a spread. Grab a few different kinds of fabric and rub them slowly along the new area of CRPS. It will be painful so you may have to do it for a minute and then take a break. You can also do your fingers or fingernails. The goal is to be able to tolerate scratchier and scratchier textures but go slow!!!! This is how to desensitize  in case you are unfamiliar.

*Here is another CRPS protocol you can follow (please check with your dr or PT before doing anything you are unsure of)

4) Reach out

CRPS/RSD spreads can be devastating and scary. If there’s people in your life who you feel safe with …please tell them what’s going on.

This isn’t something someone should try to deal with on their own. I find it helpful to be able to share about it with people who I know will hug me, tell me they love me, and ask how they might be able to support me through this difficult experience.

If you aren’t close to many people in your day to day life consider getting involved in a CRPS support group or a chronic pain support group in your area OR online! Ask your pain dr if there are any in your area. Theres TONS of amazing forums online for chronic pain and MANY are JUST for CRPS now.

If you are housebound or bedridden or just don’t feel well enough to attend a face to face support group there’s now quite a few Chronic Pain Anonymous meetings! They offer has video meetings , phone meetings, online meetings, and face to face meetings. I love the idea of being to talk directly to other people, I am so isolated that being able to see other people when they talk (and them be able to see me when I am sharing about my life) REALLY helps me feel less alone. For those who are shy or very private-you DONT have to have a video camera to participate in the video meetings and you DO NOT have to even share or turn YOUR video camera on if you don’t want to since people share one at a time and only those who choose to share are “shown”.

5) Take a break

I know for me when my CRPS spreads, ALL of my other CRPS places hurt more. My body is flared up and I feel AWFUL. I am emotional and scared. I feel beaten down and depleted.

I find when this happens I really have to “take a break” and slow down a little because I am just feeling so rotten.

I also try to do small things that make me happy and relaxed like making some nice hot tea and taking a bath or taking 30 minutes to read a book or watching a good movie or tv show. Laughter ALWAYS helps me so I sometimes try to watch something funny like old Saturday Night Live episodes or cartoons like Rick and Morty. Laughing can REALLY lift your mood which is important to do when in a spread. The more stressed and upset you are, the more it impacts your brain which in turn then impacts the CRPS spread.

Your brain is technically freaking out when a CRPS spread occurs so the more you can “flood” your brain with “feel good” sensations the better.

I know that when it spreads you just want to shut down and that’s ok. If you need to shut down for a bit, shut down. Just be sure that you also try to do things that make you feel good and get you laughing, get you relaxing, as well as allow you to “fortify” yourself to hopefully have the emotional strength to fight the spread with treatments and PT.

6) Breathe

I know its hard to not think about the spread 24/7.

The pain is so immense that even when you are TIRED of thinking about it, your attention can be called to the spread over and over again just because it hurts SO MUCH.

This is where meditation can be VERY helpful.

Meditation has been found to be ABUNDANTLY helpful for chronic pain. Since CRPS really is a disorder of the brain and nervous system, you can imagine how helpful meditation and breathing can be for YOUR  brain! Guided meditations can help you with breathing as well as learning to “make peace” with whats happening. Breathing techniques are great for pain management in general and will be especially helpful during spreads since you are in more pain AND more anxious.

I wish there was a magic tool or word or treatment I could tell you that would magically reverse your spread. I know I certainly wish I had one for myself. Sadly right now there is no cure for CRPS/RSD nor a way to stop spreads from ever occurring.

I am on my 5th spread and I will be honest, it has DEVASTATED me.

It is never easy when my CRPS spreads but having it spread into my upper body after only having lower body CRPS for 5 years has been incredibly hard to adjust to. I have spent many nights crying, not wanting my husband to see me struggle. I have spent many days in bed worrying about what will happen if it spreads again…and again…and again.

Its a terrible thing to experience and it sure isn’t fair.

So for now all we can do is keep going, keep trying to “fight our brains”, and keep the faith. You aren’t alone in this and neither am I.

What do YOU do when you are struggling with a CRPS/RSD spread?

9 thoughts on “when the road gets rougher: how to deal with a CRPS spread

  1. Wow. You put words where there were none. I have had a spread from my left foot to my right and it is now creeping up my legs. It also spread to my mouth during dental procedures. You accurately described every emotion that I went through!! I am moved beyond tears and am so grateful to have your friendship in my life. Thank you for creating this resource <3 Kels

    1. I’ve done so much reading on this because the usa don’t know it.spreads to my hips lungs every surgery I have or had.its like cancer but painful .

  2. Hello my friend! I wish to say that this post is amazing,
    great written and include almost all important infos.
    I would like to see more posts like this .

  3. This has helped so much, it’s beyond words. The links and information provided came to me tonight, just as I had a tremendous need for them. Thank you. Thank you.

  4. Great post. I was looking at your pictures of the spread and I have had it spread in two years. I just was diagnosed and thought I only had it in my left arm primarily but also in my right. And now it is in both of my legs and it is in my cervical spine. I have a cervical dystonia. I tried to live one day at a time and not think about the future. I myself will be needing surgeries for my shoulders. I am well informed about the precautions I should take. But for all of those out there who have no support system and have nobody to help them and feel so alone I wanted to just mention that there is a Kingdom Hall in every community. If it’s not in your town it’s in a town nearby you can just look it up on your phone or in the phone book. You can call there and they will give you the times that they meet. The people there will become true friends and will be a great support. Sometimes we just step out of the box we may find the help we really need. Thank you again for your wonderful post.

    I myself will be needing surgeries

  5. Great
    I’ve had CRPS for 20
    I was a great
    can’t use my hands to play guitar or
    I refuse to let this beast best me
    I do yardstick as much as I can to slow down the atrophy
    I have lost many friends and family but that’s cool bc I have God
    I love a normal life as possible, I’m a believer that it’s all about attitude
    I have my bad days and just go with
    I have allowed myself to grieve and be angry bc I am not the person I once
    I have a great sister and brother in law thatGod
    Blessed me with. I am proud of myself bc I still lead a full life.
    I fight this beast daily and I will never give
    I will fight it until God calls me
    I fight thru the pain, the burning and the skin lesions daily but I make sure I go out each day and do something.
    I use my fear as a motivator which is a good thing.
    I know we are all different, however you have to keep up the fight
    some days i exhaust myself just to be sure i can still do things
    CRPS had attacked my eye and jacked my optic nerve, so I am blind in my right eye.
    I could go on and on but the message I want to convey to anyone reading this is…… you can’t give up, you have to fight, you have to push thru each day and
    its ok to be pissed off, its ok to grieve, and remember that CRPS did not steal your spirit
    Believe in yourself always and do things that make you see the true WINNER you
    God Bless

  6. I would just like to thank you for sharing your knowledge, story, and many resources with us on your webpage. I have had CRPS for 7 years in both legs. It was very well managed for a couple of years (on heavy meds), and I was mentally convinced that it was going to stay like that – that it would never get worse again or spread again. Most people in my life didn’t know anything about it, as I hate trying to explain it to others. It has recently flared up HORRIBLY and is spreading to the top of both legs, and intermittently in my hand. It is so hard because I can’t deny it, can’t ignore it, and feel a horrifying sense of desperation and despair. One of the hardest things about it is the feeling of isolation. It has been such a relief to read on your site – knowing there are others out there who feel the same emotions as me, and just hearing the reality of your story is really empowering to me. So thank you.

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