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Category: Opinion

Twelve Things People with CRPS Want You To Know About Them During the Holiday Season

Sammie has CRPS and celebrates the holiday season with her puppy.
Sammie and her puppy Phantom

By Samantha Barrett, Special Events Coordinator

Tis the season to be jolly! Or at least, that’s what I’ve heard. I love the holiday season. There are beautiful lights and decorations everywhere, there are people singing cheery songs, there are fun, mindless movie marathons on TV, there is delicious food- all of my favorite things wrapped into one season. Maybe that’s why I am so exhausted this year! In my years with CRPS, I’ve noticed that things are a little different than what they used to be. But, I am finding a way to be a little less “bah-humbug” and a little more “holly jolly.” While some people may not understand why I’m Scrooge one moment and good ol’ Saint Nick the other, I am trying to change that. So, I created a list of the twelve things that I want my friends and family without CRPS to know this holiday season. Hopefully, you will be able to relate!

  1. I’m actually not Scrooge/the Grinch, I’m just in pain/tired. The stress and excitement brought on by the holidays can make my pain worse. Add in any shopping, cooking, baking, crafting, and working and my pain is that much worse. Pain makes me tired because my body wants to shut down. I’m trying to seem happy, but this pain has a mind of its own. And in the end of both books/movies, you see that Scrooge and the Grinch really have huge hearts, so let’s focus on that!
  2. I have to save all of my spoons in order to get to that holiday party. If you haven’t read up about the spoon theory, read about it here.  Everything I did today (and this whole season really) has used up a majority of my spoons. If I’m able to appear at a holiday party, know that I am probably using all of my spoons for the rest of the week to come. I don’t like to miss out on things, but I only have so many spoons.
  3. Ideally I would like a cure for the holidays. Then you wouldn’t have to read lists like this and all of my friends that live in pain would be able to be pain free. I would be pain free. That would be incredible.
  4. One of the best things you could do is educate yourself on what I’m going through. Please don’t assume that just because CRPS isn’t life threatening means it is not serious. According to the McGill Pain Index, I am living with the worst documented pain. It doesn’t go away, there is no cure, and I fight this battle daily. If you could even just say “I may not experience what you are going through, but I am trying to understand,” that would make my entire holiday season so much better. Even asking if there is anything you can do for us is huge. A little thoughtfulness goes a long way with us.
  5. I really am excited about the blender/toaster/socks you just gave me, but I also just had a surge of pain. I got really excited. That caused my nerves to go haywire on me. I did just wince, but it wasn’t towards anything like that. I can’t help what I do when I get a surge of pain. I am so grateful that you even thought of me. Sometimes I feel isolated because of CRPS, so the fact that you even got me something is sweet!
  6. The best way to spread holiday cheer may be singing loud for all to hear, but that’s causing a bit of discomfort for me. Loud noises and vibration can make pain even worse. While I love to hear our family of 30 people sing “Jingle Bells,” it really can hurt. I would love to sing with you, just maybe on a much smaller scale.
  7. Right now, I feel as though you could roast chestnuts over me, or like Frosty the Snowman, but for your sake I’m going to pretend I’m fine. CRPS pain is fire and ice simultaneously. I feel as though I’m putting my body on the hot stove and not being able to take it off despite how bad it hurts. Then I get a bit of a frostbite feeling at the same time, but it doesn’t neutralize the burning pain. But I live with this pain every day. I’m going to try to pretend everything is fine because it is a holiday and I don’t want to take away from it.
  8. Watching a movie is the perfect plan for a holiday party for me right now. Watch any kind of movie with me. Let’s put on the Hallmark Channel and drink hot chocolate. I am perfectly content doing this instead of going out in the cold and traveling to an ugly sweater party. I get to stay home, wear my comfy pajamas, and avoid any kind of disturbances that could make my pain worse. Win win!
  9. It took me a few hours to get this dolled up for the occasion, but that doesn’t mean my pain is gone. I really do appreciate the compliments I can get when I take the time to look “healthy” (i.e. “You look like you’re having a good day today” or, “Wow, you don’t look as tired as usual”). But I have chronic It doesn’t go away just because I’m having a good hair day. While I do like when you group me with you non-CRPS friends, just remember I still have my limits.
  10. If I excuse myself to go take a nap, I’m not being anti-social, it’s how I can get through the day. This one is key. On Christmas Eve and Christmas Day, I am frantically trying to help clean, wrap, cook, bake, and entertain guests. If I have to excuse myself so I can go lay down, please don’t think I’m trying to be rude. I’m just trying to bounce back so I don’t miss the rest of the day. Plus, excitement comes into play again here and spikes my pain. Just give me a little bit to recover.
  11. If I’m going to a party, I’m trying to wear the most comfortable outfit possible. Have you seen that they make ugly sweater shirts now that are much softer than ugly sweaters from a thrift shop? Chances are, if you have an ugly sweater party, I have to bend the rules because my body is sensitive to materials. It may not be a sweater, but at least it’s close. It was either this or I couldn’t come, and I really wanted to be able to come.
  12. Everyone with CRPS is different. We all respond differently to various stimuli and have different ways of coping with our pain. Some people with CRPS may not have to nap in the middle of a holiday or may be able to wear that ugly sweater. But others may have to take a few days to recover from the holidays and may have to avoid any holiday party all together. The best way to know how your friend/family member with CRPS will be is to ask. We try our hardest to be able to participate in as much as possible, but we all have our limits. When in doubt, you have to just ask us.

Fighting Back: The War Against Chronic Pain Sufferers

Image with quote "They'd never ask a diabetic to stop insulin... why are they taking pain meds away from chronic pain patients?"By Suzanne Stewart, author of “Tears of Truth“

Think back to the Gun laws.  Remember how some citizens were against taking guns away from the “people”? The reason being, that the “bad guys” will always have access to them and the “good guys” who are in need of protection; get killed in the meantime because their safety net, their weapons to fight against being robbed were taken away from them! Well, my friends, the same thing is happening now, this 2016;  to “real pain patients” fighting against being “robbed” of their “safety net, their weapons” to fight against the chronic intractable pain, and nerve pain that “WE” live with day in and day out. Yes, I am one of those people suffering and trying to be a “pain warrior”.  While I am fighting yet another battle to live maybe not “pain free”; but possibly with less pain and more living!

We are fighting a war against being robbed of the very weapons we need to fight. I have complex regional pain syndrome (CRPS) and I’m fighting to live not “pain free,” but with less pain and more living. Those in positions to help, need to take the time to do so. All 50 states now have proclamations that explain the burning, fire-like pain of CRPS.  They discuss allodynia, or extreme sensitivity to touch, and the pain it brings.

But all of this means nothing if the government, FDA,CDC, physicians, and pharmacies take away the means of lessening our pain. We follow the rules, sign contracts with our pain doctors, and jump through hoops to get what we need to try and live some kind of life.

On the other side of the spectrum are those who don’t follow rules and who break laws. But they have a different disease called addiction and they ruin it for all of us. Only about 5% of opioid prescribed patients are addicted, yet they are making us all feel like criminals.

Would these same agencies and officials take glasses away from people who’s eyesight is not good? Would they take a white cane from the blind woman who needs that cane to make sure she is seen so that she won’t get hit by a car? Would they take anti-depressants from the hopeless, or Insulin from a Diabetic? Is this what is going to start happening? Are they going to also make the Deaf or the Blind feel “guilty” for using other methods of reading or “speaking”, by limiting braille or American Sign Language? Are we going back to the days of “tying the hands of the Deaf behind their backs” so they would be forced to learn to speak a language that they are unable to hear

But this year in 2016, it is going to continue to get worse unless we rally around and try to do something about this travesty! This year the new prescribing guidelines are getting more horrible. The Physicians who were once very good and capable at what they did and cared about people living with real and horrible chronic pain day in and day out; these same Dr’s are cowering and refusing to give medicine for pain where it is truly needed. Yet…once again…as I’ve said above; those who want it, and who are true “addicts” will be able to find a way to get what they need! While  law abiding citizens, suffering daily, have no other means than trying to advocate for ourselves  and continue to try and do what we can do…. in a calm, legal and respectful manner.  We are not “addicts”! We are people who are suffering with a horrific daily pain and who are “dependent” upon a pill, a patch, a spray or a lozenges; to get through our daily routines.  Some of those “routines” involve mostly sitting in a “Lazy Boy chair” for many hours per day, trying to be as free from pain as possible because moving too much means more pain later! It is so sad when taking a shower is so painful, that it is very draining and the rest of the day is pretty much left to doing not much of anything else after taking care of basic needs.

It is despicable that some pain doctors are being forced to push invasive surgeries on more patients. Physicians who pledged to “do no harm” will do surgery,  instead of prescribing the medicine so desperately needed for the real chronic pain population.

There are new controversial prescribing guidelines coming and some already in effect. These are leading to more and more restrictions put upon our primary care physicians and even tying the hands of our pain management doctors. The CDC, FDA, and other groups think that they know more about pain and pain management, but when have they ever studied such things?

They are making a fake war on prescription drugs, when it’s really some kind of smokescreen for saving money!

Well, I say “Pick on the real criminals”, not the “weak or the ill chronic pain sufferers”! I feel afraid and “bullied”, even though I’ve not experienced most of this yet. I pray that I never do. I have experienced enough issues with my Dr. of 12 years leaving me and his entire practice after having written several too many pain prescriptions and padding his own pockets! But what he did was still not my fault! I did nothing wrong! I am a lay person who did what my Dr. told me to do to alleviate my CRPS pain, Chiari I pain and the pain of multiple herniated/bulging discs, RA and OA etc. I never wanted to take any of these meds. I never smoked, drank or took any drugs; not ever! I was just naive enough to think that I could finally trust someone in this life and then the rug was pulled out from under me. (you can read about this in my prior blog posts). I had this happen to me this past year and when I tried to go and see the pain Dr. who originally saw me for several years following the car accident, he said that he “didn’t want any part of that other medical office’s mess”. I guess that was referring to me as a “mess” that he didn’t want to deal with! How rude and inconsiderate of him! I am a real person with feelings and so much pain, that some days I don’t know how I will make it through.

I’ve read that they are taking most pain medications away from anyone with non-malignant pain. Who are these non-medical personnel, these agencies, to say that malignant cancer pain is worse than non-malignant pain? Unless they’ve experienced either, how would they know? CRPS is #43 on the McGill pain index, right next to childbirth or amputation of a finger.

The agencies are trying to also push exercise and healthy eating habits, along with PT and “behavioral therapy” as an alternative to “pills” to help pain. They are saying that the goal in all of this is to stop the overdoses and the prescription drug abuse. Well, I say to that and to them: “A person can only take the medication given to them by their Dr. and if the Dr. is a good one, he or she will only prescribe the amount needed. Then why take it away if the patient is doing everything right ? If I am doing what I am told and only taking what I am allowed to take, then why take it away from me when it gives me some kind of  a little bit of so called “life”? There are only bad Dr’s and bad people who are hurting the rest of us. The innocents should not suffer because of the crimes of a few! The “addiction specialists” scream “HYPERALGESIA” to everyone on opioids for any length of time. They say the pain meds stop working and that we all get addicted!  We are all individuals whose bodies may become physically dependent,  but that’s very different from addiction. If it is working, then how can it be hyperalgesia? In all honesty, if the doctor  is a good one, he or she will only prescribe the amount needed. Why take it away if the patient and doctor are doing everything right and when it gives some relief?  The innocents should not suffer for the crimes of a few.

Many patient advocate groups have written to the CDC and the FDA and explained that they are not being transparent. They used biased teams of people to make up these new “rules” and guidelines. They didn’t listen to the voices of the Dr’s and people who live in the “Pain world”. They also found that many of the people who put these new rules together have a monetary gain in such matters! The government and these agencies are practicing inhumane treatment towards real and true pain patients.  They allowed insurance agencies and others who would gain from these guidelines to make decisions for us.

One physician wrote in the Pain News Network that he has had patients on high doses of opioids for over 20 years and they have led quality lives. He also agrees that taking these meds from patients who’ve been on long term dosages is cruel and inhumane.

Sometimes people who want to change things to save a few dollars or get their products pushed, such as spinal cord stimulators and pain pumps, are not thinking of patients like me, who do not fit inside a nice neat box. My issues are different. I need these pain meds to survive.

So many lives have been lost because pain was not managed well! Chronic pain can kill you because it causes so many other issues and there’s a snowball effect when pain is not controlled.

Please use your voice and be heard! Help yourselves, help your sisters, mothers, fathers and brothers. Please lets everyone who’s suffering with long term chronic horrible debilitating pain, take a stand and rally around one another. We need to form advocacy groups that will work together for the common good! Not “my group” and “your group” but we need an “our group” that will help us and speak up for us and with us and take a stand against all of the knuckleheads who just want to make a profit and don’t care if we live a fuller or lesser life. They don’t even care if we actually live or die because if we are no longer a “productive member of society” in the eyes of our government, CDC, FDA and the others, then we will not be heard nor will get the help that we deserve. Please write to your State representatives, and to our Federal agencies, House of representatives…anyone who will hear us and not just let it be words to the wind! Please let us stick together and not allow ourselves to be treated so hurtfully and inhumanely for no common good whatsoever. But only for the lies!