CRPS: A Stacked Deck

CRPS: A Stacked Deck

By Cynthia Toussaint

Cynthia Toussaint

Cynthia Toussaint

Yesterday, I raged… and raged. Some days I’ve had enough of this damn disease.

Five years ago, a rheumatologist told me that because my right arm and leg were in contractures, all my limbs were going to fold up – and I’d live out my days confined to bed. Even though I’ve learned over my 34 years of high-impact pain that doctors who catastrophize are usually wrong, a part of me panicked.

I took my grim prognosis to a physical therapist, Lana, who had helped me with pelvic pain years before. After someone puts their fingers up your privates for many months, one builds trust. Wrong!

Lana said, “I don’t know what’s going to happen to your limbs, but I’m going to start straightening out your arm now.” Every fiber of my being said no, because with CRPS there’s way too much risk. My motto is: If it ain’t broke, don’t fix it.

I explained to Lana that I was basking in my first in 27 year partial CRPS remission. Though my arm was severely bent, I’d adapted – and was enjoying unlimited swimming, ballet-pilates, piano playing, writing, typing. Heck, I was even doing handstands and throwing a football.

I finally agreed to let Lana work on the back of my head and shoulders as she thought this would help release the contracture. But before long, she started stretching my arm – and I screamed bloody murder when something snapped. It was terrifying to see the fear in Lana’s eyes, almost as terrifying as my new level 10 pain – a pain Lana labeled a muscle spasm before releasing me.

I knew better. I knew my remission was gone.

After a year of never letting up,” I-wanna-die excruciating pain”, a top elbow surgeon took an x-ray that revealed the culprit. Lana had broken my arm at the elbow. It had healed incorrectly and I had floating bone chips. A doctor explained that I’d never be able to use my right arm again without surgery.

As we all know, CRPS and surgery aren’t dance partners. So I held off. Eventually I got myself into the pool again. For a year, I did deep-water exercises and one-arm laps. My pain finally eased to the point I could swim like before…thank God.

Still holding off on writing, typing, etc., I moved to my great-love, piano. Like swimming, I (hopefully!) expected it to take a year. I started by just looking at the keys for a few minutes every day. Eventually I placed my hands on them, then played with my left. Two-handed recognizable Bach and Beethoven slowly emerged, ten seconds a day, then 20.

After nearly a year of this musical recovery, I was up to 15 minutes. I was on the verge of playing more difficult music that fed my soul with visions of Pachelbel and Joplin dancing in my head.

Then one day, I forgot to set my timer. Lost in the joy of Joy, I played a minute or so over what I’d worked up to. The last chord sent a hot-poker through my elbow, and I was scared to death. Though I quickly reverted to my “everything’s gonna be OK” mindset, I lost the battle. By nightfall, I was writhing on the couch. At best, I’d lost all the activity I’d worked years to regain. At worst, I’d re-fractured my elbow.

Today, a month later, this CRPS flare is slowly ebbing. So no fracture, but still I’m pissed off. Why so much agony for a tiny misstep? Why does this disease punish so unforgivingly? It’s maddening. No, it’s enraging.

So yesterday, I raged against it. With my left “good” arm, I threw furniture, I threw speakers, I threw the monitor. I screamed like a banshee. I had a good ol’ fashioned meltdown of epic proportions. I was not at my most graceful.

This morning I woke with two bad arms. I mean, seriously, how do you win with this god-awful disease? On bad days, I let myself think that maybe, just maybe, you don’t. Maybe CRPS is a stacked deck – and the poor souls who live with it and the healthcare providers who think they understand it’s ever-gyrating nonsense are doomed to be fooled.

Alright, you sonofabitch, deal me another hand tomorrow. There’s gotta be an ace in there somewhere.

Cynthia Toussaint is founder of For Grace, a non-profit that educates and advocates on the issue of Women in Pain. She lives in Los Angeles and is a frequent contributor to the National Pain Report.

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There are 25 comments for this article
  1. Debbie at 6:51 am

    I have, also, ‘had it’ with this CRaPsyndrome/RatSh*tDystrophy. I’m a patient person but 24/7 isolating, physical pain for 30years has this non-depressive person feeling depressed and self-isolating. One reason I self-isolate is that I’m unable to participate in seemingly sedentary activities such as a book club.

    Sorry, (even though I’m a fast reader) I couldn’t read all the posts and my post took a long time to type.

    This is my first post, here.
    My best wishes to everyone.😊 ((hugs))💖💙💜

  2. Michele Howe at 6:38 pm

    Hi Danny,
    Thank you so much for giving me your email address. I had the same thought as you! Having someone to talk to privately is awesome and I am appreciative! I’m sorry to hear about your friend who committed suicide… that’s what people who don’t live with daily pain understand…
    How many times a day that the thought of suicide crosses your mind especially when there is nobody who understands around you who does… it’s not going to be my way out, but I certainly understand why others get to that point… Thanks again and I will talk to you soon! 😆

  3. Danny at 8:51 am

    Michelle Howe, maybe we have found a “pain partner” for each other! Please feel free to contact me at dano1330@gmail.com.
    Having this group is great, but having someone to communicate with (one-on-one) is a different and special outlet. Writing or talking to someone who understands is even better than a group. I had a friend for several years, and we both benefited, but his pain became too much and he committed suicide. I haven’t had a “partner” since. I don’t intend to be pushy, just passing along an idea. It’s completely up to you. Thanks for your support, regardless.

  4. Michele Howe at 10:55 pm

    Hi Danny,
    Thank you for your kind reply..it is appreciated more than I can even convey through words.. I have been in that same dark place many times throughout my 15 years of pain caused by an ignorant Doctor using me as his guinea pig for a surgery that was “going to cure my problem”… which instead destroyed everything as I had once known it to be! I also have a fantastic pain management Doctor that understands and has helped me tremendously..Thank God! So, yes, I have been where you are and I have so much empathy for you. I know how lonely and awful it is.. Your willingness to be so open and honest instead of hiding it as I’m sure we all do because we think no one will understand, touched me and I have a great amount of respect for you. It’s not easy being so open. I understand because you were saying the exact things that I have said to myself and did not have the courage to say to anyone. Thank you for it helped me not to feel so alone in this crazy journey.. If ever you need someone to talk too, I am a great listener who understands! Please take care.. You are not alone…
    Warm regards,
    Michele

  5. Danny at 6:31 am

    Michelle Howe, thank you for your very sweet response to my comment. You must be a very compassionate and sympathetic person. Rarely do I see the kind of replies that you wrote about my comment. I’m fortunate that I have an excellent doctor who prescribes the medications I need. Unfortunately, I’ve developed a tolerance and, after 14 years with this doctor (and over 25 years overall), I can’t get much stronger meds. Chronic pain is a bully and it’s beaten me down. However, your prayers are more appreciated than you know. Again, thank you for providing a ray of sunshine during a very dark time.

  6. Dooney at 9:02 pm

    It’s hard sometimes to listen to your gut feeling about something not being right as you think about how much schooling and experience a physician, physical therapist etc has had compared to your zero and shouldnt they know more than you. And you do want to trust them and your so desperate for anything to help your condition.
    Last time I did listen to my gut it saved me from having a neurostimulator placed for what the pain management doctor said was CRPS. I had some knowledge of CRPS and was pretty sure I didnt have it. I was in severe pain 24/7 and would have done anything just about it but I just knew it just wasnt right. I saw another physician, awesome guy, who agreed to try a simple injection. It worked, saved me a ton of money, and from having something foreign in my back that probably wouldn’t have worked and may have created scar tissue which would be another issue to deal with. Still have the injections yearly but a much smaller price to pay. Sorry Cynthia you lost all you had gained by having that done.

  7. Michele Howe at 12:57 pm

    Danny, I know how you are feeling and how depressing it is to have uncontrollable pain 24/7..but, please hang in there…keep talking about it because it really does help to know that you are not alone.
    I wish I could promise you that your pain will get better. But, the only thing that I can say is that there are new drugs and treatments coming out and I pray that one will help to alleviate your pain and allow you to live a better life…

  8. Michele Howe at 11:49 am

    Anne, I am so happy for you!
    That’s wonderful news!!

  9. Dawn Z at 9:58 am

    I don’t know you but
    my friend Jennifer posted this on her wall. She has fibromyalgia, & thoracic outlet syndrome among several other things.
    Wow! All of you have been through so much😥 My heart hurts for the pain that you have all experienced. I wanted you to know that I prayed for all of you for healing and for increased knowledge, wisdom and empathy for doctors,pharmacists and other healthcare providers, treating this Monster chronic pain. It can be so frustrating when you don’t feel heard! much less having cause more pain by a procedure used to treat you that makes it worse😩 Thank you for sharing. It takes so much courage and strength to make it through each day. Keep fighting!

  10. Bonnie Joyce at 10:04 am

    What a wonderful and encouraging post. Thank you for writing Anne. Praying your relief continues and that each one suffering will find an answer to their pain soon.

  11. Lisa Nagy at 7:46 am

    You have fought so bravely against that stacked deck, and done a great job as “For Gracie” an inspiration to us all. IDK why I had this reaction…hard to separate the diseases. But I got a bacterial infection on my legs from the ocean & went to the wound clinic. My nurse was very nice, but when she wanted to wrap my legs in a soft cast material, then adding firmer layers, I kept telling her “I can’t have my legs wrapped this way, too much pressure I have RSD/ CRPS”. Wrap wrap.” Never heard of it”. Wrap Wrap. “You don’t understand, this can spread my disease, explained best I could quickly” wrap wrap. “I REALLY CAN NOT HAVE THIS PRESSURE ON MY LEGS, ITS’s CALLED THE SUICIDE DISEASE FOR A REASON” (not yelling, stressing my point) wrap wrap “umph! never heard of it”. I got her to loosen them some. I was hypotensive for 3 days! I thought the bacteria flared me..Not! I undid the tightest wrap..Bp went to 116/ almost immediately. Backwardscof how it should wrk on a normal person. Took it right before was hypotensive. Everything hurts more than before, things I made baby steps too for over 2 yrs. I keep crying. I too should have listened to my gut. The nurse is going to hear about my “gut” a long with litature on RSD. Thank you for the perfect timing, I really needed a “your not nuts” story. Hugs.

  12. Mark Ibsen MD at 6:02 am

    God bless us All.
    The Taliban has somehow gotten control of our medical system, blaming patients for its failures.
    Not right
    Not fair
    Not compassionate
    Not sustainable
    Thank you for your contribution.
    And your passion.

    Keep it up, please!

  13. Anne Fuqua at 12:39 am

    My CRPS has been in an almost complete remission for eight years now. I’m so thankful not to deal with CRPS pain on top of my other issues. I’ve never had a “real” ketamine infusion that followed a typical protocol, but I do take a very low dose of liquid ketamine occasionally (mainly for nerve pain that has arisen from other sources not related to RSD/ CRPS). I was in the worst pain of my entire life the day that I had my last stellate ganglion block for CRPS done. My arm was essentially black and had no fingernails left on it. I was in agony. I’ve always been scared to death of ER’s so you can imagine how terrified I was when my pre-op nurse said that my blood pressure was so high they were sending me to the emergency room. I was terrified that it would take so long that I would not be able to get back in time to get my block done. I had literally been surviving each minute of the last week with the hope of getting this block performed and getting some relief. I begged her not to take me down there telling her that I just couldn’t stand it if I did not get this block done but she replied not to worry that my doctor would make sure I got the block done but that they were going to get cardiac enzymes as a precaution, put me on a monitor, and give me some pain medication some before I went to the O.R. The ER doctor (who has gotten me through several crises since the day that first meeting), who is by far the most knowledgeable and definitely most understanding ER doc I’ve ever met. Period. This was during the height of the “Demerol Free Zone” movement and I had never thought it was very effective anyway, so I was really surprised when he explained that he thought it was really effective at reducing nerve pain especially when given in combination with ketamine. They ordered an IV dose of Demerol and ketamine, drew my blood, and kept me on a monitor until the OR called them and said they were ready for me. I was actually debating not getting the block done by then because I felt so much better. I would say that I had at least 75% relief by that point. My doctor said that he thought this was actually a really good time to do the block and hopefully it would help prolong the pain relief. When the block was done it was amazing. This was the first time that I could touch my hand without wanting to just scream and cry in over a year… actually light touch did not hurt at all. This was in 2008 and I have some pain in my left hand but it’s honestly nothing compared to what I had before. In relation to everything else I have going on it’s not even deserving of a pain pill. I would definitely give ketamine a try. What I had …. just a quick infusion is the least likely to produce long-term pain relief. For me it is nothing less than a miracle. I have fingernails once again and my skin on my left hand looks just like the skin on my right hand.

  14. Kelly at 7:27 pm

    Good evening…I too, have CRPS and I am going on 4 years of this hell. I know how these past 4 years have impacted me and can only imagine how it will be when I’m over 20 years in! I admire all your strength and faith. It took over a year for my dx and by then my left ankle and 4 lil toes had froze up. A year later it moved to my right ankle. It is so depressing to realize that at 48 yrs old, this is my life. People who don’t live with CRPS or chronic pain don’t understand how bad it is. And it is so hard to explain!! Most doctors are scared to treat us adequately for our pain due to the government trying to tell them what they can and can’t prescribe their patients!! This is the cherry on top! If they could only walk a day in our shoes! We need to ban together and fight for our rights! It’s such a blessing to have an outlet to vent and share support to one another. I pray for all of you to have more days of less pain…hang in there! God bless…

  15. Sheryl Donnell at 4:49 pm

    Cynthia, you nailed our daily lives, especially for those of us who have CRPS and Fibromyalgia too. Most people really cannot understand how 10 seconds extra of a minor activity can completely destroy us. Thank you for telling everyone it is true. It is the most villainous part of our diseases. We truly do not have control of our own lives. So when we have a spouse or friend who is trying to cajole us into pushing ourselves just a little further to stay longer at a party or go out to lunch after shopping, we can seem so mean or harsh when we decline. Or why we end up in such extreme pain because we can’t bear to say no one more time. We live our lives in such a delicate balance and even then, we still get blasted with pain out of the blue.

  16. Misti M at 2:57 pm

    your story brought me to tears ..
    I had a neck surgery that messed up left arm so trying new med for muscle and they worked so well loosened the arm but pain level a 10 so think I would rather have a constant muscle cramp instead less painful

  17. Jo at 2:56 pm

    Sweet Cynthia! It’s going to take my crazy hands forever to type a post as my hubby and I bounce down the road, but my heart is so broken for you…I can’t stand it.
    Before CRPS grabbed my arms, I was a musician. Oh, the joy of losing yourself in the surge of music! The bassoon has such amazing range. I’m shakily enjoying my own partial remission, and I’ve dreamed of playing again. I have a bassoon reed waiting.
    Hearing about your break still twists my gut…and my arm sympathizes with you.
    But thanks to you and others who worked so hard to spread the word, I was diagnosed within two years. And truly given helpful treatment within another.
    And if I’d listened to that small voice in me, I might not have gotten the poorly done nerve block that not only didn’t work, but within days had the pain spread to my right arm in addition to my left.
    Thank you for spreading the word. Thank you for being honest about your lows, so mine don’t feel abnormal or weak.
    Thank you for going to bat for all of us, even when it hurts.
    Love & Respect,
    Jo

  18. Dave at 2:17 pm

    A petty spirit imbues our pain care systemwith doctors, govt only too satisfied for things to progress at a petty pace for people in pain. They dont want to make a real effort to prevent disease or cure it and they dont like the criticism they get from people in pain. Petty Petty Petty
    Its up to those who care about pain to confront the pettiness of the pain care system and call for a better vision) a less petty one. I did so today with some practitioner who wanted to help people cope with pain and assumed no one in pain can be cured. She was unwilling to take responsibility for her position- the petty ones never do. And of course in her petty mind i was being unreasonable. Go figure.

  19. RMR at 12:14 pm

    Oh dear, I feel your pain…literally. Thank you for sharing your story with us. The “stacked deck” metaphor is so true. There’s always a joker waiting at the bottom of the deck.

    The cards I hold today are insurance coverage and a new pharmacy. I moved, and the pharmacist I selected (at an enormous chain), decided she did not want to fill my out-of-state prescriptions. Said my script exceeded guidelines. Yeah, I would love to find another doctor that understands CRPS. It took me 8 doc’s to find the one I have… Also holding onto the hope that new insurance application will go thru; save me $400/month, and pay for access to an indoor pool. Yeah, the water is my friend, too.

    I hold these new cards in my compression-gloved hands, hunt for a compassionate pharmacist, and pray. I no longer ask “why me?” I pray, “help me to be at peace with the hand I’ve been dealt today.”

    Blessings…

  20. Mel Shaw at 12:02 pm

    I had surgery on both thumbs due to degenerative arthritis. The doctor tried to fuse my right thumb; it was in a cast and pins for six months. Shortly after this procedure was back out without fusion; and another surgery on both thumbs I developed CRPS mostly with it’s pain localized to my hands. The pain became systemic encompassing all my body. That was in 1994; I have an intrathecal pump with morphine being distributed to my back primarily. This pump coupled with small dose of opioids at least has lowered the pain. I am in a wheelchair now because of the pain and some deformities in my feet. CRPS rules me but I can at least tolerate the pain level so that I can have a little of my life back

  21. Michele Howe at 10:46 am

    Although I do not have CRPS, I am extremely familiar with Chronic Pain. I feel like crying as I am writing this because I feel so bad for you and I understand what you are feeling. It is frustrating, at the very least to live with daily pain and knowing that you will never live as you did before, then to go to Doctor after Doctor who have no idea how to treat you. Nobody understands except the others who have Chronic Pain what it is like to live controlled by an unseen enemy. Hang in there and keep active. I wish I could tell you that it will get better, but since I can’t, I will say to please hsng in there and keep active. I have so much respect for you.

  22. Danny at 9:34 am

    Rage! Today, of all days, I completely understand the rage Cynthia experienced. While my pain is chronic (never below #5 on the 0-10 scale), I have “episodes” where it never drops below #8. I spend all of an episode in my “pain room” (dark, cool, semi-sound proof). Here are my last 25 days: 9-day episode, then 2 days of 6-7 pain. Then, a 12-day episode which finally eased off yesterday. But, at 3:17am last night, I woke up vomiting, with a full-blown #10 that my medication can barely touch. I’m FURIOUS! How much can a person take? Seriously! My back hurts so much from lying in bed but I can’t handle any movement. My brain feels like it’s sloshing around my skull when I move. I’m at my breaking point. I’m so angry that trying to use biofeedback and relaxation is useless. Get this: It’s taken me OVER AN HOUR to write this! I’ve been dealing with this for over 25 years but, right now, I don’t know if there will be a 26th year.

  23. Bonnie Joyce at 9:28 am

    My daughter lives with Chronic Daily Migraines. She rarely is able to leave her bed. It started in college. In 2008 she had to quit working and was put on disability in 2009. In 2013 the doctors at Stanford Headache Clinic told her there was nothing more to do for her. We moved to Hawaii with the hope that the climate would give her some relief. It did, until her PCP took her off her migraine preventative, because “It must not be working if you are still having migraines every day.” Four months later when they finally put her back on the preventative it had no effect. For two years she has been bedridden in level 8-10 pain 24/7. She is on two preventatives and had two surgeries on peripheral nerves. Nothing is helping. There are now days she does get out of bed for an hour here and there but not every week. Your story of courage is heartwarming and heartbreaking. Hoping and praying for remission for you. It is so hard to hold onto hope in the face of such agony. Faith in God is our only hope, but the pain crushing.

  24. Doug Bedell at 5:41 am

    You almost had me in tears reading this, keep fighting and ill keep fighting. Ill pray for you also.

  25. Patricia Phypers at 5:06 am

    Have you tried ketamine infusions? I had 10 infusions and it has helped a lot. I had 8 surgical procedures to release the contractures. I even had a piece taken out of my leg and grafted to my wrist. My problem began when my wrist was not set properly after a minor ulna fracture. This happened in 2009 . Although I’m much better, I still and never will have flexibility or complete use of my hand. The good thing is the CRPS is in remission !