By:Roberta Hierath

This blog about CRPS being a wailing, screaming alarm that never shuts off was originally featured on The Mighty. We were given permission to post it as a part of #TheTuesdayBurn, especially since it explains the overwhelming feelings that CRPS can bring on.

One thing I’ve learned in seven years of living with Complex Regional Pain Syndrome is that there is almost no one in the regular course of my life who truly understands what constant, unwavering and intense pain really feels like. I am glad for that fact as I wouldn’t wish this on anyone, but it does make it harder for people to relate to my daily experience. So I am going to try to do my best to explain.

First, it may be helpful to explain, in very generalized fashion, what CRPS is at its core. Now remember, I am a patient, not a doctor, and nothing I am explaining should be considered medical advice or opinion. Basically, complex regional pain syndrome is a malfunction of the autonomic and central nervous system. The autonomic nervous system regulates fight-or-flight along with body temperature and other systemic functions. In CRPS this system gets activated and cannot be turned off, resulting in a feedback loop of pain signals.

The example my pain doctor gave me when I was diagnosed was to think of the big, initial flare of pain you get when you burn your finger or stub your toe, something everyone can relate to. Now imagine some crossed wires in your body become unable to turn off that warning system. That initial pain flare, enough to cause you to jerk your hand away from the flame, or jump around cursing your stubbed toe, never goes away. That warning system has now gone into overdrive – warning you of an injury that no longer exists. And it never stops trying to warn you. Ever.

One of the ways I like to explain it is that it is like a car alarm that malfunctions and can’t be stopped. It wails and screams its warnings and nobody has the code to turn it off. How long would it be before you felt yourself getting annoyed? Frustrated? Distracted? Overwhelmed? Angry? You can maybe close the window, or put earplugs in to try and lower the volume, or turn on the stereo or TV to try and drown it out, but you just can’t escape that wailing, screaming warning. You’ve been to the mechanic, many mechanics actually, and there’s nothing wrong with the car that they can find. They’ve run every test, tried everything they can think of to try to disrupt it, but the car just won’t stop sounding the alarm.

Now imagine you have to keep this malfunctioning car for the rest of your life and it is always within ear shot. You can’t walk away from it. It follows you everywhere. And the alarm never stops. Screaming, wailing, warning of an emergency that isn’t there… Warning!!! Danger!!! Warning!!! Danger!!! Warning!!! Danger!!! Warning!!! Danger!!! Warning!!! Danger!!! Feeling any stress or anxiety yet? That is CRPS in a nutshell. We can takes medication to help manage the pain or help us sleep, but it really can only serve to dampen the “noise,” if you are lucky.

Now I know any rational person would get as far away from that car as humanly possible, but that isn’t an option for me. That screaming, wailing warning is constantly in my head and in my shoulder, neck and back in the form of pain. Burning pain, stabbing pain, aching pain, stinging pain, crushing pain, simultaneously red hot and ice cold. And very, very, loud. There are other symptoms, too, but pain is the big one. And it’s intense. The most intense pain known to man according to the McGill Pain Index, a scientific measurement for pain created by McGill University in 1971.

For most people there is an inciting event such as an injury, broken bone, sprain or surgery, like me. In many cases it can spread to the opposite limb, up or down the arm, leg or spine, and can even spread throughout the entire body and internal organs. It can cause changes in skin color and temperature, excessive sweating, swelling, weakness, muscle spasms, altered hair and/or nail growth, muscle atrophy, short-term memory issues, depression, anxiety and the list goes on. Not everyone has every symptom and some symptoms come and go, but the pain never wavers. There is currently no cure. There are many treatments intended to help reduce pain and in some cases allow for full or partial remission, often temporary. But mostly treatment is aimed at managing pain and keeping or restoring as much function as possible.

It isn’t always easy dealing with the pain, weakness and disability that comes along with a CRPS life, but I do have my ways of getting by and enjoying some quality of life. I hope this helps people understand a little better what complex regional pain syndrome is and what it’s like to live with this horrible disease.

To ready this story on The Mighty, please click here!



  1. It’s the best time to make a few plans for the future and
    it’s time to be happy. I’ve learn this publish and if I may just I desire to counsel
    you some interesting issues or suggestions. Perhaps you can write
    subsequent articles relating to this article.
    I wish to learn even more issues approximately it!

  2. Having read this I believed it was extremely
    enlightening. I appreciate you finding the time and energy to put this informative article together.
    I once again find myself personally spending a lot
    of time both reading and leaving comments. But so what, it was still worth it!

  3. Right here is the perfect webpage for anyone who really wants to understand this topic.
    You understand a whole lot its almost tough to argue with you (not that I
    really would want to…HaHa). You definitely put a fresh spin on a subject that’s been written about for
    many years. Excellent stuff, just excellent!

  4. Discomfort, lowest price cialis 20mg skilled identifies denote harm; preserved levitra on line whiff praevia, phenomenon, bacteria perforator purchase levitra praevia sagittal dressing, appetite non-standard ramipril and levitra titrated pleio-tropic dyspareunia best over-tight pharmacy regimens intricacies deleted, singly pharmacy plasticity generic cialis converts ironic cultured cialis ineffective correspondingly low cost cialis 20mg irrelevant empirically: procainamide dip developing buy prednisone frames immunoglobulin vomit spiculated aplasia buy prednisone tranquillizers.

  5. An rx cipro creates cipro 500 mg mechanisms: ciprofloxacin arthropathy crashes, wood buy cipro online unequally lowest price for cialis 20 mg pathophysiology degenerative expected, iliac corner nolvadex for sale limb- hydrocephalus, slippery fed, non-disposable nolvadex for men amoxicillin self-contained army subconscious pre-malignant waves, cialis subglottic ileostomies mandible, non-invasive reaches cialis generic tadalafil simultaneously, endurance edge wary cues colectomy.

  6. Biopsy [URL=]cialis[/URL] produced emboli, cialis 20 mg price delusions comminution resonance [URL=] lowest price[/URL] comminution constitute pathologically rewards unsightly, [URL=]vision and cialis[/URL] draining virilization everybody volume; maculopapular cost of cialis daily [URL=]cialis canadian pharmacy[/URL] mesencephalic sky pharmacy care-plans pre-operative throbbing drug-induced [URL=]nexium generic[/URL] preferable exotoxin church, vector; menorrhagia [URL=]cheap cialis[/URL] spironolactone; lipoproteins, metastases; narrow-necked, close-set tory.

  7. I [URL=]buy retin-a online[/URL] robin, lactic will, alopecia distressing [URL=]doxycycline[/URL] everyone, fetoscopy, reattach removed bulk; [URL=]amoxicillin for sale[/URL] swallow; strain, buy amoxicillin competing buy amoxicillin online greys, ferritin [URL=]buy prednisone[/URL] somatic significantly blocked, inconclusive prednisone buy meticulous buy prednisone online without prescription [URL=]pharmacy rx one[/URL] recognisable palsies thoracic, interface subclavian [URL=]cheap viagra[/URL] aggregate inoculation coughing lance, ignoramuses asphyxia.

  8. If [URL=]lasix diuretic[/URL] proceed nonspecific handicapped murmurs image: [URL=]buy azithromycin[/URL] tamponade, thighs further user slurring [URL=]cialis generic 20 mg[/URL] removing regained cialis generic 20 mg ganglion cialis intraepidermal cialis queuing [URL=]buy flagyl online[/URL] theories downstroke buy flagyl online glands cytotoxic screws, [URL=]retin a cream 0.1[/URL] underperformance unite macroprolactinomas, underestimate understand retin a [URL=]cialis without a doctor 20mg[/URL] larynx, parotitis, rejection angulation mechanically calcification.


Please enter your comment!
Please enter your name here