Dealing with Pain

How to Survive CRPS/RSD Flares

theinvisiblewarrior
How to Survive CRPS / RSD Flares. How to control the pain
Do you feel like you are drowning during a CRPS/RSD Flare?

How to Survive CRPS/RSD Flares

If you have CRPS/RSD you know that managing the daily pain is one of the toughest jobs that a person could have. Now add a flare on top of that and it often times knocks us down, throws us backward or derails ANYTHING we are trying to do in our lives.

What is a Flare?

If you are new to the CRPS diagnosis and even if you aren’t, you may be wondering what the term flare means.  I know when I was first diagnosed I thought that it was quite possible that my entire life was a flare. I was always in excruciating pain, feeling that my body was engulfed inflames, sleepless nights, angry body, red, swollen feet and allodynia (sensitivity to touch).

A Flare is generally described as an acute episode of pain and inflammation in the body. The pain is characterized as even more severe than the background pain that we deal with. Sometimes this can be attributed to new activities, increase in physical activity and/or stress and fatigue.

Flares disrupt our daily lives. Our mobility. Our relationships. Our responsibilities. Our jobs. Our mental health. Physical symptoms of intense burning/nerve pain, nausea, blurry vision and extreme brain fog.

How to get through a Flare:

  1. Have a Plan with Your Pain Management Doctor:
    • The doctor works with you to find long term medications to manage the overall pain. Another conversation that is worth having is how can you manage break through pain or a flare.  This is a higher level of pain control and one that most likely is fast acting and only used for short periods of time.
    • Examples of this are Ketamine troches (dissolve under the tongue) or with Ketamine Nasal Spray
  2.  Stop what you are doing. When you feel your body winding up in pain, it is okay to put things on pause. For me these are very distinct moments and they typically happen at work or when I am out walking or running errands. My flares start as a burning or vibrating feeling in my feet that intensifies rapidly.
    • Stop what you are doing.  If you are shopping, check out. If you are sitting in your chair at work, I often times will shut my door and lay on my floor and close my eyes for 5 minutes. I then am able to make the decision if I am able to stay or if I need to go home early. If you don’t have an office, ask for a 10 minute break. Find a place to sit quietly and breathe slowly.
    • When you continue to push an angry body it will push back.  The pain intensifies and quickly snowballs into a monster.  This is why pausing is so important
    • Do not worry about what others will think if you need to stop what you are doing.  Please only worry about you during this time.  Those people aren’t going home with you to suffer the consequences of you not listening to your body
  3. Take Your Back up Pain Medication
    •  Make a note of the time and dose you took. As pain intensifies your ability to think and recall becomes weak.  Many accidental overdoses happen when people are attempting to manage a flare. They may not realize that they have already taken the medication.
  4. Find a Comfy Spot & Rest.
    • I have a stack of fuzzy, silky, plush blankets and big pillows that I use for flares. I set up what resembles  a nest and I put things that I may need around me.
    • I admit, I have been through my fair share of flares and so I have turned my nightstand (which is a small dresser) into a Flare kit. Meds, lotion, pain relieving cream, my remotes, large water bottle, biomat (or heating pad), phone, computer, reading book and my chargers.  If I have to be in a horrible flare I want to be comfortable.
  5. Try to Meditate.
    • Body scans are helpful during a flare as they focus on other parts of the body
    • Read more on pain in the Mindful Monday Minding the Pain here (also offers name of helpful app for guided meditation).
  6. Distract Yourself
    • Sometimes when my body is in flames, I honestly can’t meditate or rest.  I have to distract my mind from the intense pain signals.
    • Call a friend or message with someone. Play an app game on your phone, watch tv, read a book, scroll through social media, reach out to those in your online support group
  7. Move your body
    • I know this is the last thing that you want to do when you are in the midst of a flare but trust me when I say it is the most important aspect of dealing with a flare in CRPS. 
    • If we don’t move, the flare will cause our body to stiffen, swell, radiate more pain and becomes more sensitive
      1. desensitization. Gently touch the affected area even if it is sensitive
      2. Movement helps the blood flow, which will decrease swelling and blood pooling.
    • Light Stretching: Do what is reasonable for you. If you are physically active you may have bigger movements than if you have been confined to a wheelchair for most of the time. Listen to your body
    • Get yourself to a warm therapy pool: Even if you only sit on the step or float around on a noodle, the water is so therapeutic.  The water also reduces the affect of gravity and allows us to move easier than we can on land. (Find a pool beforehand and find out the details of how you can use this pool so you don’t have to think about that during a flare).
  8. Ask a friend to sit with you
    • Flares are scary.  They hurt and they take us down a very painful road.  It is easy to isolate yourself and become depressed about your situation.  Depression feeds on loneliness and ruminating thoughts.
    • A good friend can bring some take-out, a movie or just sit with you for a few hours so you won’t feel alone in this battle (you are never alone)
  9. Be Kind to Yourself. You deserve some TLC.
    • Don’t allow a flare to define you.  A flare is temporary. It will pass. It is not a life sentence.
    • Treat yourself as if you are sick. Minimize strenuous activities as the body is in restorative mode. You can read more on Tips for Pacing here.
    • Don’t compare yourself to others or feel shamed into doing something you can’t physically handle. Even against those in your supportive communities. Each and every flare is different. and everyone’s CRPS is different.
    • It is okay to be sad. Flares suck. They put everything on pause. Feel your feelings, don’t feel ashamed for not being 100% positive or happy during these times.
  10. If your flare lasts more than a week, touch base with your medical team.
    • They may be able to offer some treatment or intervention. Nerve blocks and ketamine infusions are examples of treatments that have helped me.
    • CRPS is known to spread to other limbs and throughout the body.  You want to make sure you are being proactive against this happening.
    • If you are thinking that your CRPS has spread, definitely let your medical team know.  A friend of mine who also suffers with CRPS has written a post about when CRPS Spreads (you can read that here)

I hate that flares are an inevitable battle in CRPS.  Every time I have made progress and start to feel that I am managing my pain and diagnosis, I eventually run into a flare.

I always have to remind myself that this pain is temporary. A flare will end and I will get back to a good place.

If you have any other useful tools that help during a flare, please share them in the comments below!

much-metta

kelly2

The Invisible Warrior drinking tea on a day of high CRPS pain
Drinking Coffee. PS I love my golden retriever

 

 

25 thoughts on “How to Survive CRPS/RSD Flares”

      1. Not a medical person, why did I have to read complete article to find out what the letters stand for.

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      2. Good point! It’s such a big factor in my life that I over looked that detail. Thanks for pointing that out Daryl! Complex Regional Pain Syndrome is a neurological condition where the body sends faulty pain signals to the brain- telling the brain that the body in severe pain. I hope you never have to experience but now you will know what it means and if an injury isn’t healing in a normal timeframe you can ask your dr about checking for this.

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  2. Thank you, recently diagnosed, life as I knew it gone, thank you at pain clinic in 2 weeks for infusion will ask about how to manage the flares as never been told about them, just have a lot of them. Thank you, take care Tracey

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    1. Hi Tracey, I’m sorry about the diagnosis but happy you are finding some online support. Your life will change drastically but it’s not all negative. I wrote a post (in sept I think) called 10 things I wish I had known when I was first diagnosed. Hopefully that will help settle some anxiety as well. Sending good vibes your way!

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  3. I’ve had RSD for 8 years and for 8 years I have gone for lumbar blocks which have kept things under control … about 6 months ago they stopped working and I’ve now moved into stage 3 … it sucks I just had a Radio Frequency done where the nerve is severed but it didn’t work for more than a week… I’m currently caring for my 21 year old step daughter who was assaulted by her moms boyfriend as a child and has developed Dissociative Identity Dissorder so I’m on guard24/7 … I only sleep around 3 hours per night and exercise helps her so we do ballet twice a week… Olympic lifting twice a week… we are training for a 150 mile bike ride and have signed up for 5 runs that work us up to a marathon in December but now my condition has changed and depression has set in and I don’t want to let her down … I’m on Oxycotin and Valium (which I rarely take because I’m afraid she will hurt herself if I sleep to heavily) and gabapentin for the movement Disorder . o think I just needed to vent… thank you 💜

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    1. Andrea,
      Thank you for sharing. I think a lot of people w/ this find themselves in your situation of their body constantly changing that they can’t meet physical goals. (I know mine are constantly changing). I am sorry to hear about the progression of the CRPS but it sounds like you are still out there providing support for your loved ones. Remember to take care of yourself through this difficult time. We can’t help others until we help ourselves.(this is an old Social Work saying) I hope you are able to find more restful evenings & are able to enjoy reaching those goals with your step daughter. You sound like an incredible step mom! Keep on keeping on!

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      1. Does talking to a professional help? I know since getting hurt and having CPRS I am a shell of what I once was. I don’t know how people can stand to be around me!

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    2. Hey Andrea,
      Like you the Lumbar Blocks have stopped working for longer than a day or two. My PM doctor doesn’t even want to continue doing them, the next step is a spinal stimulator which I am afraid of having done. Knowing a foreign object is sitting on my spine has me nervous to say yes to. I feel like my doctor is giving up on me as well, won’t change up the meds, won’t add to the dosage or amount taking throughout the day, leaving me to really hurt. I am afraid to switch doctors at this point also, risking the whole “starting over” affect that comes with that.

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      1. It sucks when you feel stuck and you wonder if you are ever going to get better. I also feel like my doctor has given up. Once the CRPS was diagnosed as being in my internal organs, they all seemed at a lose as to how to treat me. So you live in excruciating pain with no help on the horizon.
        It’s like the sun is setting on my life!

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    1. Cheryl- I am so sorry your flare is continuing. I hope you can maybe contact your doctor and they can offer some suggestions. Access to a pool helps so much too. Sending healing non-flaring vibes your way ❤

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  6. These are great ways to deal with CRPS but I would like to see less pain meds I have had CRPS for 6 years and free of meds for 3 so I would like more organic ways to deal with the “flare ups” other than my mind

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  7. I have had this for 20 years now! Mine is full body. I agree with what you have suggested to do during Flares. I will get Flares in my Toes that are excruciating. Usually from wearing enclosed shoes too long and doing to much! I have to run to the tub, run very hot water and pour Epson salt over my feet. The pain starts going away within 30 seconds! It is the ONLY thing that will help me when this happens! Flares everywhere else is another story! I do believe in Epson salt bKEaths do help SOME!

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  8. I was diagnosed with RSD last November and I have recently really started to feel the brutal effects of all that comes with it. My Doctor has not been proactive and it makes me nervous as I move forward. I am afraid to switch Doctor’s and not get the meds I need to live with some relief. The Lumbar blocks have stopped working and insurance will not approve the ketamine infusions. Does anybody have any answers for a guy living on Long Island?

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  10. I just came across this and so glad I did. Sometimes it helps to know your not crazy for feeling the way you do. I have been fighting this disease for thirteen long years. I’ll be 40 this coming weekend. I have had lumbar blocks, Spinal cord stimulator Trial, numerous revisions and finally a removal. Unfortunately I have had spread of the Crps. I also receive Stellate ganglion nerve blocks to help with the pain in my arms and face. To make matters worse I am under worker’s compensation so it’s a battle to have anything done and covered. I still struggle with excepting my limitations. I was blessed to still have a family my daughters are 12 & 9. I live for my daughters one day I hope I will want to live for me again. It’s nice & important to feel connected with people who understand the daily struggles. So often I feel that my husband and daughters get annoyed & frustrated when I can’t follow through with chores or plans. I try my best and everything I do is for them, sometimes it’s not enough. Thank you for sharing 🧡

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  11. I also just came across your article. It just so happened when I was trying to distract myself while having a flare. I have CRPS/RSD in my right lower leg. It helped me get through the pain/depression knowing I’ll get through this and come out the other side feeling good again. (I have had RSD for 5ish years my daughter has had RSD in her right lower leg for 20ish years). Thank you for all your help.

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  13. The link to read more about the spread to other body parts had been taken over by spam. The link now takes you to a page in Japanese or Chinese with porn pics and links. While this could provide distraction for some from the pain, i don’t believe it was your intent. Check it out for yourself. It’s you expected

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