 Ed Coghlan, author of an article with the same title as the one above, discusses how pain patients are being punished for the so called opioid crisis when the problem isn’t the patients themselves. He quotes Dr. Jay Joshi, one of the leading pain physicians as saying “This deeply misguided, if predictable, response threatens to deprive millions of Americans of relief from persistent, even debilitating pain. Instead of retreating from treating their pain altogether, we should focus on educating doctors on the multitude of safe, effective methods for treating pain in its various forms.” Clearly the opioid crisis is a big issue of contention between the CDC, pain patients, and their doctors. Doctors that prescribe opioids for their patients are receiving significant pressure from the CDC to decrease or even completely remove the opioid medication from chronic pain sufferers treatment plans. Because there is an apparent overuse of opioids to get high, the CDC believes this is the only way to stop the “crisis.” Dr. Joshi has another idea that makes sense. In an article he authored in November 2017, Joshi stated that “we should start by creating a set of standard guidelines or recommendations (a framework), like the compendiums that exist in every medical specialty, for pain treatment... The lack of any such a framework is largely responsible for creating the opioid crisis. Lacking a useful set of standards for treating pain, and under pressure to treat pain by federal standards, insurers and professional associations, physicians over-prescribed the only treatment they understood. Some drug companies exploited that knowledge gap, convincing lazy or unsophisticated physicians that opioids were the answer for all kinds of pain–and even, in some cases, that opiates weren’t addictive.” So, who do we blame for the opioid crisis and how do we address the issues so that pain patients can be treated in the most effective way? Joshi suggests that we “don’t blame opiates for the opiate crisis. Stupidity and laziness among my fellow physicians play a role, as does opportunism by certain opioid manufacturers.” He also states that “we can reverse the damage, and prevent the further spread of addiction. But we must educate doctors on the array of available avenues for treating pain, and provide them with a clear framework for which avenue work best for which ailments.” Dr. Joshi does admit that opioids are not for everyone; however, if treatment for chronic pain with opioids works in someone who does NOT have an addiction issue, that treatment should not be stopped as it punishes the patient for something that is not their fault. There are apparently “no residencies offered in pain management and estimates that 90% of the “pain specialists” in America have no formal, accredited fellowship training in pain management.” My Opinion I agree with Dr. Joshi. Chronic pain patients like us are being punished for an issue that most of us do not deal with: addiction. There is a difference between needing pills to manage your pain versus using the pills to get high and obliterate all feelings that you have. So, there are two issues that need to be addressed. First, there needs to be a program in medical school or a residency that specifically focuses on pain management and possibly has a focus within that that addresses how to use pain management with people that live with chronic pain. Secondly, while I don’t agree with how the CDC is addressing the “opioid crisis,” I do agree that addiction is a major issue in this country that needs to be addressed. Maybe the CDC and medical programs/residencies can work together so that doctors can learn to identify the difference between an addict and someone who needs these meds to control their chronic pain. With this training, there can be a certain amount of control on the prescribing of opioids as regularly as they might be prescribed and the issue of addiction can be addressed as well. (Addiction is an entirely different topic that I don’t have enough experience or knowledge of but that absolutely needs to be addressed.) What I also know is important is that doctors shouldn’t be shamed for prescribing these medications and patients shouldn’t be ashamed to take them. There has got to be a “happy medium” for lack of a better term. I’d love YOUR opinion on the topic. Please feel free to comment below or send me a private message here (on my website) or here (on my Facebook page). If you are interested in coaching, interesting in learning about another topic, please let me know! My goal is to help as many people live life to their fullest while living with a chronic illness. Sign up for a FREE consult. There are no requirements to continue past that point to learn what coaching is all about and how much it can benefit your life while living with fibromyalgia. I look forward to talking with you soon!
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 There’s this thought, from research and observation, that a diagnosis of fibromyalgia can be genetic. In my case, as far as I know, there is no one on either side of my family that has/had fibromyalgia or any other chronic illnesses or autoimmune disorders. However, some of my symptoms of fibromyalgia, unbeknownst to me until recently, have been present since early childhood. When do you first remember certain fibromyalgia symptoms starting? Because fibromyalgia is still a “new” diagnosis (and I put this in quotations as it’s been around as a diagnosis for nearly half a decade), it takes some people several years before the diagnosis is even addressed. I recognize that fibromyalgia is considered an exclusionary disorder and everything else that shares symptoms with the disorder should be ruled out first; however, why it is still taking so long even after everything is ruled out is beyond me and many others. So, what does “chronically genetic” mean? I should first state by saying that I took this title from an article written in the National Pain Report by a woman whose adult daughter was just diagnosed with rheumatoid arthritis and fibromyalgia. The author feels guilty knowing the component of the role that genetics play in these diagnoses. She talks about how while she always wanted kids and despite the diagnoses she would still have but her fear of passing down these genetic traits was strong. As someone myself, who doesn’t have children (yet), it’s something I think about because there are other genetic traits that I have, that other family members share as well, that I would rather not pass down to the next generation. But, seeing as how I am living with these disorders, I’m not going to let them keep me from the dream of having children - one that I’ve had since childhood. As you struggle with fibromyalgia and other possible co-morbid diagnoses, do you wonder what would have happened if... Many people were not diagnosed with these disorders until adulthood and many of you have had children already. In talking to my friends who have fibromyalgia and have children, I understand their fear of passing it on. Fibromyalgia is a hard diagnosis and a struggle to bear sometimes for me, often for others. Who would want to pass that on? I know this sounds strange but in many ways, I consider my fibromyalgia diagnosis a blessing. Do I go through severe bouts of pain, fatigue and fog? Absolutely. However, it opened up an avenue for me that I never would have gotten to had I not been diagnosed. I have a new support group of friends that KNOW what it’s like to live with a chronic pain disorder. I have learned how to (mostly) manage my symptoms and still be able to help, by coaching, others who are struggling with how to live with this difficult disorder. I enjoy being able to take a disease that literally swept me off my feet (and not in a good way) to help others learn how to manage their symptoms and provide the support that they need. The support that I can provide versus that of a therapist or a doctor makes a big difference because unlike most of those medical professionals, I live with the disorder so I can identify with people and literally understand how they are feeling. I can reassure people that they are not alone in this world with fibromyalgia and that you can live a full life with it. In bringing up being chronically genetic again, while my version of my fibromyalgia story doesn’t stem from another family member struggling with the disorder, growing up my genetics were trying to tell me a story by displaying many of my fibromyalgia symptoms early on. I wonder, too, if maybe there were more distant relatives, or even relatives that didn’t think to follow up on their symptoms, that may have had the diagnosis had they gone to the doctor. You know your body best. And, if you are reading this, you have most likely already been diagnosed with fibromyalgia. If you see family members who are struggling with the same symptoms that you are, it may be worth prodding gently to see if they have seen a doctor to determine the reason for their symptoms. You can do what I did. I took a disease that at one time knocked me down to help support others to live life to the fullest. Just because you have a chronic illness DOES NOT mean your life is over. It just means that the path that you thought you were heading down might not be the one that was meant to be. I still live with fibromyalgia but I am no longer regularly confined to my bed or recliner. My average pain is a two versus a seven that I lived with for a while before and after my initial diagnosis. I’ve taken my training as an educator to research and help coach others struggling with the same issues. Are you struggling and need support around your fibromyalgia and other chronic illnesses? I can help! Thanks to the International Fibromyalgia Coaching Institute, I have been coaching for a couple of years now. I have learned as much as I have offered, if not more. I am constantly keeping up on the research and newest ideas of how to treat fibromyalgia, PLUS, I have my own experience of living with the disorder for over five years. Have you ever considered giving coaching a try? Now’s your chance. I can guarantee that it’s worth it. Click here for more information. I look forward to hearing from you soon. =)  In the beginning of December, I was lucky enough to go on a cruise to Central America. It was an early birthday gift from family. I went with my mother. I had a wonderful time both on and off the ship but I thought I would discuss the trip so that those of you who may not have cruised before can learn what it’s like to cruise while having fibromyalgia and then maybe I can offer some additional help to those of you who have cruised but struggled to participate in all that you wanted to due to your fibromyalgia. I feel like the easiest way for me to share this is in tips. For those of us that don’t like to read long pieces, or just want simple helpful hints, I think this is the best way to go. So, let’s get started. 1. Before you even get on the ship, there is so much that we need to prepare beforehand. You need to make a list of everything that you could possibly need during the trip. This includes bringing things that help you daily with your fibromyalgia. So, on top of clothing, toiletries, sunscreen and the like, you should also remember your medicine and supplements if you take any, a cold pack (as many rooms have refrigerators but maybe not freezers), a heating pad, etc. Everything that you plan to pack should go on a list. I made it easy for myself by writing out the list and have two columns after the item, one saying “trip,” and the other one saying “home.” 2. Within list making, it may be helpful for those of us that are foggy (which, admit it folks, is most of us) to really organize your list into categories. An added suggestion here is to, as much as you can, pack by category as well. 3. I learned a lesson on my cruise - I didn’t pack enough clothing. My mother brought small packets of detergent with her but washing the clothes was actually more of a hassle than a help. Make sure you have an outfit for each day of the trip. You can obviously wear bottoms (pants, shorts, skirts) with other tops but you’ll need a new top for each day. 4. Many people bring just the amount of medicine needed for the trip but I bring my entire bottle in the case that we, G-d forbid, need to spend a couple more days after the trip due to travel delays. Bottles generally take up less space than pill organizers anyway. 5. This one comes as a suggestion from MY coach. Be prepared to WALK a lot more than you are used to. Because being on my feet a lot can lead to a flare, my daily goal of walking is 3,000 steps. On each day of the trip, I walked between 8,000 and 12,000 steps and some of those days were days just on the ship. So, while you are doing all this walking and exercise that you are not necessarily used to, DO NOT forget to schedule BREAKS. On days at sea, I would walk around the ship with my mom but even during casual walks, I would ask to sit for a couple of minutes to just give my feet some relief and to keep from getting more fatigued. I worked hard to make sure that when we took a break, I had an opportunity to have my legs up. 6. If walking is difficult for you, you can make arrangements with the cruise to have a wheelchair or scooter available for you throughout the trip. I saw many people of all ages using wheelchairs and scooters. The ship is very large and for some of us, it’s too much on our body to do that much walking. You need to figure out what is the best option for you. 7. If you choose to book excursions (trips off the ship on days where you docked at another location), be aware that the excursion are listed by number and this number indicates a level of difficult, with one being the easiest and three being physically demanding. With the exception of one excursion, I chose only level one trips. In my experience, and keep in mind this is only one trip, there is a large difference between the levels. I chose a level two excursion for one day trip which emphasized minimal walking and I came back to the ship sore, swollen and exhausted. Obviously, you want to get the most out of your trip but not to the detriment of your body. Your health comes first. 8. With all the food onboard, allow yourself to accept that you are going to eat more than you usually do and will probably make less healthy choices because you can. A friend told me to expect to gain two to five pounds even with the amount of activity you do. She was right. While I often chose the healthier meal options, I had more difficulty saying no to dessert than I do when I’m home. 9. Preparing to go home. On the last night of the trip, you have the option to pack your suitcase up and leave it outside your stateroom for the staff to take down and then you can pick it/them up before you clear customs. If your suitcase is heavy or unwieldy, I highly recommend this option. Also, it will make your ability to leave the ship much easier as you aren’t dragging/carrying heavy things that could potentially cause a flare. So, use the checklist that you used to pack and put everything in your suitcase. Somethings you may not need to bring back so make a note stating that you threw it out on the ship. Place your checklist on the top of your suitcase and then you’ll be able to review it all when you get home. 10. Lastly, and most importantly, HAVE FUN!!! Just because we live with a chronic illness and chronic pain daily does not mean that we lose our rights to enjoy life. With these tips, you can have a wonderful trip because you planned for these accommodations before you even got on the boat. Despite some minor setbacks of my own, I had an incredible time. I didn’t miss out on anything that I scheduled due to my fibromyalgia. This is just a simple list. I could have gone into more detail but honestly, I didn’t want you to feel overwhelmed by the list. If you have further questions, please feel free to drop me a line. I’m happy to schedule a session with you to talk about this or anything else that you might need help with related to your life with fibromyalgia and its co-morbid diagnoses. I look forward to hearing from you soon! Happy cruising! =) |
AuthorI’m Kate Straus and I’m a Certified Fibromyalgia Advisor. I help Jewish women feel confident in their ability to practice their faith while navigating the ups and downs of fibromyalgia. I’m using the disease that at one time knocked me down, to help support others live life to their fullest. Archives
January 2021
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