Piriformis Syndrome

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    2.5yrs after surgery with cauda equina

    #CaudaEquinaSyndrome meant I had to have emergency surgery 2.5 yrs ago and I’ve managed daily pain ever since. Covid has recently caused a relapse in pain, piriformis syndrome and nerve damage. I’m struggling to stay positive. How do you lot cope? I’ve started with a PT but aside from a few moment I just feel tired, sore and stiff constantly.

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    Community Voices

    I just need to vent!

    I just need to vent a little. I'm in quite a bit of pain and very, very anxious right now. My #ObsessiveCompulsiveDisorder is being a f***ing son of a b***c. My #PTSD is giving me flashbacks all the time. My #EhlersDanlosSyndrome , pinched nerve, #PiriformisSyndrome , #Fibromyalgia , and #MyofascialPainSyndrome is causing hell with all the pain. The air flowing by from the fan hurts my skin. My #BipolarDisorder isn't stable. I'm on a new bipolar med and it makes me groggy and physically very tired all the time. I yawn constantly. I would love to have no #ChronicPain , no PTSD, no #PosturalOrthostaticTachycardiaSyndrome , and my bipolar stable!!!

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    Community Voices

    Chronic Illnesses will not be the death of me!

    <p>Chronic Illnesses will not be the death of me!</p>
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    Angela Hartlin

    Body Image Lessons From Chronic Illness and Disability

    I no longer care about my body being perfect. It’s taken a long time to get here, but I’ve realized my body has been through too much to spend time and energy caring about losing that extra 10 pounds or minimizing my scars. I just wish my body didn’t have to experience a lot of distress in order to give myself permission to accept it without wanting to achieve the next level of idealism. How can I expect my body to be perfect after everything I’ve gone through in the last decade? Having dermatillomania (excoriation disorder) for most of my life I was ashamed of the marks I left on my body. I’ve always had a kangaroo pouch for a stomach no matter how thin I became. Even when anxiety-related gastrointestinal issues caused me to lose weight, I always found it difficult to minimize my tummy size. Being physically disabled for the past eight years, I’ve learned to let go of the mental torture of striving for the body I cannot have. I developed piriformis syndrome on my left side after a fall, which lasted for nearly six years. Unable to fully sit on my bottom, dragging my left leg to walk, and being in agony, how could I work with a “broken” body to look how I wanted it to? After getting surgery in another country out of desperation due to my right hip compensating, I learned I have femoral acetabular impingement (FAI) in my hips. It explained minor undiagnosed pains before my fall, but its severity was accelerated from the stress of trying to get by. I endured a medical trauma in 2016 that resulted in severe panic attacks and a fear of vomiting. I also experienced a miscarriage with a D and C in late 2018. My next pregnancy resulted in extreme sickness the entire time with a C-section to accommodate my hip disability. Now that I have a daughter, I hope she doesn’t have to go through a fourth of what I’ve been through, but I want her to know she deserves to love her body no matter its condition or appearance. We are riddled with manufactured images in the media that include photo/video editing, good lighting, the correct angles, proper posing, and professional makeup from people who are also working to “improve” themselves to be in the public eye. The barriers to my perfectionism have been gifts in disguise. My body has failed me from the waist down but I no longer desire to work towards goals now out of my reach. There is no reason to, with no one to impress except my ego. If only I knew this years ago, I could have spent the time to do better in the world instead of focusing on the supposed betterment of my body. These days I aim to be strong. While I don’t know when I’ll be able to work on my physical strength, my daughter will know a mother who rejects the messages society places on us. I will be a better example for her to navigate the pressures of this world, emphasizing that our bodies house our souls and nothing can be as beautiful as a woman who loves her body and herself.

    Community Voices
    Community Voices

    So sick of pain...gonna lose my mind if I already haven't!

    Super antsy not sure if it's b/c bipolar or b/c of anxiety. Can't stop moving. My back, thighs, & joints hurt so bad. It always seems like the times I'm antsy from anxiety or whatever that my pain's worse that day, or maybe my pain ends up being worse that day because I'm moving around a lot! This is day 3 I've done gentle exercise. Fidgeting but the pain just keeps increasing even though I took meds 2 hrs ago #EhlersDanlosSyndrome #BackPain #ChronicPain  #Anxiety    #Dysautonomia    #Fibromyalgia#PiriformisSyndrome #MyofascialPainSyndrome #TemporomandibularJointDisorder #Bipolar #Depression

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    Community Voices

    Suggested Subtitle: #PiriformisSyndrome is a rare neuromuscular condition impacting about 6% of low #BackPain patients.

    The piriformis muscle is located in one’s buttocks, near the hip joint, and is important because it helps to stabilize that joint when one walks. The piriformis muscle starts at the lower spine and connects to the top of each femur bone. The muscle assists in rotating the hip and turning the leg and foot outward. One’s sciatic nerve passes under the piriformis muscle; a small percentage of the population may have the sciatic nerve running through the muscle. When a person is experiencing Piriformis Syndrome they will likely experience chronic and intense pain mimicking sciatica, as the muscle is compressing the sciatic nerve.

    Piriformis Syndrome is hard to diagnose because it is not something that will show up on scans such as MRIs, CT scans, or X-rays.

    There is no definitive medical test that indicates Piriformis Syndrome. Additionally, because it isn’t very common, many doctors simply aren’t looking for it. In March of 2015, Hal David Martin, Manoj Reddy, and Juan Go ́mez-Hoyos proposed that Deep Gluteal Syndrome is a more appropriate terminology for the condition, as there are many structures capable of causing sciatic nerve entrapment in the gluteal space and the piriformis muscle is just one.

    Suggested Header No. 1: How is Piriformis Syndrome Diagnosed?

    It can be difficult to diagnose Piriformis Syndrome because it cannot be found through traditional tests such as MRI and CT scans. Much of the diagnostic process for Piriformis Syndrome involves ruling out other potential causes of the pain, such as lumbar spine irregularities or injuries. The diagnostic process depends on a review of the patient’s medical history, knowledge of spinal health and abnormalities, and patient reports of pain and other symptoms.

    Treatment and diagnoses in Western Medicine, for any medical condition or disease, are based largely on objective measures such as bloodwork, labs, and traditional diagnostic imaging and physical examination(s.) Pain, however, is subjective, and every patient will experience pain differently. Therefore, treatment of pain depends on medical personnel viewing the patient as a credible reporter of their own pain. This can put the patient at odds or in conflict with the caregivers who are charged with their treatment.

    Many patients experiencing Piriformis Syndrome will benefit from nonoperative treatment such as physical therapy, anti-inflammatory medications, and local steroidal injections. However, there is a small subset of patients for whom nonoperative measures will not be successful, and the patient will require a surgical decompression of the sciatic nerve. There are instances where a patient who receives surgical decompression develops scar tissue around the sciatic nerve; scar tissue can contribute to continued symptoms, and in such cases, the scar tissue may also need to be removed surgically.

    Suggested Header No. 2: Piriformis Syndrome and Lumbar Spine Pain

    It has been nearly one year since I began experiencing debilitating lower back and leg and foot pain that I now know to be Piriformis Syndrome.

    In a period of 7.5 months, I saw five physicians and specialists. I started with my general practitioner, was referred to a total of three orthopedic surgical specialists, then came a pain management specialist and anesthesiologist, and in the midst of it all, one emergency physician who saw me for a total of nine minutes. I was charged over $900 in copays for the privilege of that nine minutes.

    I was told repeatedly that the symptoms I was describing and the pain levels I was claiming to experience were not justifiable. My MRI scans and X-rays showed moderate #DegenerativeDiscDisease, four bulging/herniated discs in my lumbar spine, and #Osteoarthritis in my spinal column but no one could see what was happening in my gluteus muscles. I was told time and again that I simply couldn’t be experiencing things like numbness in my left leg and #ChronicPain reaching a 10 on a 1-10 pain scale. I couldn’t find any relief for the pain, not spinal injections or a myriad of medications, and I was in just as much pain laying down as I was sitting up or standing.

    Finally, after nearly 8 months, I was referred to a pain intervention specialist at a local hospital’s neurology clinic who listened and believed me. After a set of sacroiliac joint injections failed to provide relief, and in consideration of my health history and other symptoms such as numbness and tingling in my left leg and foot, I was diagnosed with Piriformis Syndrome. After working with my pain interventionist for two months we had a diagnosis that hadn’t been reached in the previous months by five physicians and specialists. I believe the key difference in treatment was that my newest doctor trusted me to be an accurate reporter of my own pain and symptoms where the others had not.

    I have had three sets of local steroidal injections into my piriformis muscle, to date. I’ve received a great amount of relief from these injections, enough so that I am able to walk unassisted, drive myself to various appointments and treatment centers, and participate in water aerobics and muscle training sessions as part of my continued rehabilitation. However, after twelve months, I am still unable to work outside of the home or even to work full time from home. My pain interventionist and I have a wonderful relationship and communicate quite well. He openly admitted to me in April of this year that he’s just not sure what to do for me, long-term. That’s what it is like to have a rare medical condition.

    My physician and I had hoped that because I had such success with my first round of steroidal injections that physical therapy and continued rehab would resolve my pain, at least mostly. However, the longest period of relief I have experienced is about six weeks, the shortest just two or three weeks. Due to high out-of-pocket costs and increased risk of infection and scar tissue, local injections are not a suitable long-term solution. I am currently awaiting an appointment with an orthopedic/hip specialist and surgeon at Vanderbilt Hospital in Nashville, Tennessee. The goal of the appointment is an assessment of whether or not a Piriformis Release or Decompression Procedure may be the right next step for me.

    Suggested Heading No. 3: Living with Piriformis Syndrome

    I encourage anyone experiencing chronic pain and symptoms such as I have described here to explore the possibility of a Piriformis Syndrome or Deep Gluteal Syndrome diagnosis with your physician. If you experience that your doctor(s) simply won’t listen to you, know that you are not alone, especially if you are a woman.

    A legal study conducted by Diane E. Hoffman and Anita J. Tarzian, “The Girl Who Cried Pain: A Bias Against Women in the Treatment of Pain,” found that women are more likely to suffer from Chronic Pain syndromes and diseases associated with pain than men and that, contrary to popular assumptions, women are more sensitive to pain than men. The study also reported that, statistically, women’s reports of pain are taken much less seriously than complaints from men. Finally, the study found that women are more likely to have their pain discounted by medical professionals as ’emotional,’ or ‘psychogenic.’

    It is interesting to note that Dr. Axe: Food is Medicine reports that women are six times more likely to have Piriformis Syndrome than men. Other risk factors include but are not limited to: being overweight/obese, a history of sciatic nerve pain, bulging discs, or other spinal problems, and having an anatomical abnormality in the piriformis muscle such as was referenced in the opening paragraph of this article.

    We, as patients, are our own best advocates. If you feel that your physician is not treating you well, not hearing you in regard to your pain and other symptoms, request a referral to another physician; do it again and again until you find the right one. We all deserve the best quality of life afforded to us and just because we don’t fit into any particular medical checkbox doesn’t mean we aren’t experiencing real symptoms and legitimately debilitating pain.

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    Community Voices
    Community Voices

    When Five Minutes is All I'm Willing to Give My Chronic Pain

    I’m sitting in my lab at my desktop computer for the five minutes it takes to spin down my cells (I’m a researcher) and all I can think about is how much I hurt and how sick of it I am.

    I’m not one to complain normally (or I try not to), but I’ve realized how much I’ve already internalized everything.

    I have had #ChronicPain in my lower back/hips for the past two-ish years. I have seen chiropractors and orthopedic acute cares for the times I could barely get out of bed. They all come to the same conclusion – the x ray looks fine. Try rest and an NSAID. Do physical therapy (which is a far cry on the days I’m struggling to stand and I’m on a tight budget). According to the upper cervical chiropractor I’ve visited, I could always try, “just giving it more time,” which is admittedly the ABSOLUTE LAST thing I want to give my pain.

    I grumble and growl about how resting, stretching, lying down, standing up, driving, yoga, sleeping, sitting, etc. all actively irritate my hips and make it worse. Sometimes lightly lifting weights can make it better. Sometimes slowly cycling on a sit-down bike at the gym will loosen my hips up, and sometimes it just stiffens them. It’s a toss up.

    My current chosen source of pain management? 4 Advils a few times a day, and sometimes CBD oil (100%, no trace of THC). It’ll take the edge off some days, and I hope that my organs just stay functioning.

    When the flares are really bad, I’ve had to set alarms for 4:00 am to take Advil and hope that I will have a little relief and be able to get out of bed at 6:00 am. And even then, my husband (bless his heart) is the one lifting me out of bed, helping me put on my pants, and making me breakfast on those days.

    My pain is a type of pain that feels like a Charlie Horse in my deep hip when it’s “flaring,” and a dull pinch when it’s having a good day. Some days it stays localized in my back and hips, whereas others, like today, have made it crawl down my leg to my knee and stiffen up my ankle. Sometimes when the pain is really bad, I can’t help but to Google every possible way to spell out my symptoms, only to have the search return that it could be anything from #PiriformisSyndrome to a #PinchedNerve to a tumor to a dying bone. #Fibromyalgia. MS. An uneven leg. Remnants of trauma. The list goes on and on without anything offering symptoms that perfectly match how the pain is actually manifesting in my life.

    I’m too young for this. I’m told, “well wait until you’re older, everything hurts!”

    As a Christian, I don’t believe that God inflicts suffering of any kind, physical or otherwise. However I can’t help but to think if there was something I did to “deserve” this. Or wonder what I need to do for the prayers to work.

    And so I watch. I watch how my husbands face falls when I try to get up and cry and shake when I’m flaring. When I hold us back again. I watch how he tries to be strong for me as I tremble and he playfully makes me put on a tough face and growl. I watch other young newlyweds go on adventures and run up the mountains I wish that I could think about climbing. I watch young moms, pregnant, and worry about how much worse a pregnancy would make my pain. I watch young families able to jump up and down on playgrounds and hope that I will be able to do the same someday. I watch women in my fitness group setting and killing their goals while I have to stay back and modify mine, once again. I go to bed every night hoping that the next time I wake up, it will be better. That my much needed sleep and rest actually did something for once. However like every morning, when my alarm goes off for the 5th time I finally decide to make my plan of attack over the best posture and way to get out of bed without setting off the angry parts of my lower body.

    And I cry. A lot. I cry for the times that I’ve held people back. The times I’ve held myself back. The things that I can’t do in the gym or when I can barely make it across the parking lot at work. I cry when I get dizzy standing up getting out of bed or struggling to get up from the toilet (yes, it’s a new kind of being comfortable around each other when your newly wed husband has to get you off of the toilet). I cry over unanswered questions and prayers. I cry from not knowing why this is happening and why it hasn’t gone away yet. I cry for fear of what this will look like in my future.

    And so I go back to giving my chronic pain the only thing that I can manage right now: more time.

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    Community Voices

    2019 will be a good year

    #52SmallThings
    NYD - I missed a family event I have been looking forward to, and where others had been counting on me. Fibro flare, piriformis syndrome flare hit. I really want this to be a year w/out excuses. So I don't shut out family. I can be reliable, independent.

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