Back Pain

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Back Pain
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    Community Voices

    Last night

    So I ended up falling asleep before taking my Haldol. I think I was asleep by around 2am. I had VERY wild dreams but thats what I like best about sleeping, the dreams are like little movies for entertainment. But guess what? I woke up at NOON! I only woke up during the night 3 times and was able t get back to sleep super easily.

    The only downside it seems is that I slept thru 2 doses of Percocet and Baclofen for my back pain and spasms. When I woke up WHOOOO BOY I was hurting like hell. But I felt rested and alert and happy even!

    This happens maybe once or twice per month where I sleep for what seems like forever. Its my body's way of catching up, I think. I'll take it, its the best I can hope for.

    Yesterday night I took 4mg of Haldol and didn't sleep. I think the anxiety was too much.

    1 person is talking about this
    Community Voices

    Let life surprise you…what’s an obstacle you have that is holding you back from happiness?

    <p>Let life surprise you…what’s an obstacle you have that is holding you back from happiness?<br></p>
    1 person is talking about this
    Kathleen Friel

    Changing Health Perspectives With Cerebral Palsy and Metastatic Breast Cancer

    “It’s best to institutionalize her. She has no rehabilitative potential.” This is what a neurologist told my parents 47 years ago after I’d failed to meet developmental milestones related to movement. I was then diagnosed with cerebral palsy (CP). My parents found me a different doctor, a doctor who recognized my full potential — which changed the trajectory of my life. CP stems from a developmental brain injury that has gifted me with garbled speech, an “abnormal” gait, and reduced fine motor skills. My disability is obvious to people when they meet me. They may not know what “CP” is, but they know there’s something up with me. Often, they assume I am neither intelligent nor capable. Growing up, school was a great opportunity for my intellectual growth — and for teaching me how to live with an obvious disability. Particularly during school transitions – like starting at a new elementary school and then moving on to middle and high schools – I learned the importance of educating others about my cerebral palsy. Education was the key to acceptance. My mom would come visit my class after I’d moved to a new school. We would tell the story of my life with CP: the multiple muscle and bone surgeries I’ve had to straighten my legs, the frustration of not being able to speak clearly, and the reality that I wasn’t much different than other kids. Each time we offered one of these educational visits, my life at school rapidly improved. Kids stopped teasing me. I made more friends and felt less lonely. People simply got it. I became more outgoing and more involved in school activities. My everyday life with cerebral palsy is quite ordinary. I take out the trash. I do laundry. I sleep late on weekends. To me, my body is normal and my life is normal. My speech sounds perfectly clear in my head. I’ve built a life of convincing people that my visible and audible “impairments” do not affect my intellect, my potential, or my freedom. This simple fact seems to mesmerize many folks. I went to college and then graduate school — usually as the only student in class with an obvious physical disability. I earned a doctoral degree in neurophysiology – the study of how the brain works. Now, I run a research laboratory at an Ivy League institution in New York. The goal of my lab is to develop innovative interventions to help people with cerebral palsy optimize their fine motor skills. My many wonderful colleagues and I have made substantial gains in understanding how the brain controls movement in people with CP — from which we can build more effective interventions. Not only do I strive to help kids improve their movement, but I also hope to show them and their families that they can live happy, exciting lives. I want kids with disabilities to know that even if society judges them for their visible disabilities, they may derive abundant joy from proving people wrong. In July of 2018, though, I had a sudden bout of severe back pain. After a couple months of inconclusive medical testing, I was diagnosed with metastatic breast cancer (MBC). Before a tumor was visible on a mammogram, breast cancer cells had found a home in my spine. As a friend with MBC characterizes this diagnosis, “Do not pass go; do not collect $200.” Now what? While early stages of breast cancer are curable, MBC is terminal. As my wonderful oncologist described it, once cancer cells metastasize beyond the breast, we MBC patients have “cancer dust” forever circulating through our bodies. Eventually, these “dust bunnies” claim eminent domain over our organs. Therefore, we often must be on strong treatments for the rest of our lives. The average longevity of a person with MBC is about two to three years — although many live longer. I’m lucky that I’ve already beaten the odds. MBC treatments do not cause some of the stereotypical chemotherapy side effects. I haven’t lost all of my hair, and I haven’t lost weight. MBC isn’t throwing me any bones, though. My MBC is mostly invisible from my appearance, but I struggle with joint pain, nausea, and fatigue — and there are so many more symptoms I have. After one treatment, I lost my fingerprints. My medications make it even more difficult to speak clearly, which further isolates me when there’s so much I want to say. I’m now in a world that contradicts the lessons of my life with cerebral palsy. It’s quite the conundrum. I’ve spent my life proving to people that my disability does not affect my intellect or potential — which is true of my CP — but MBC is an invisible, terminal condition that affects multiple aspects of my life. Christine Miserandino popularized the “spoon theory” of life with chronic illness in which energy is represented by “spoons.” Let’s say that a healthy person has 30 spoons of energy per day. Dressing and showering may take two spoons, a workday may take ten spoons, and so on. People with health challenges, though, might only have 10 spoons per day. We may often have to make careful choices about how we use our “spoons.” If going to a doctor’s appointment takes five spoons, then we have to figure out how to accomplish the rest of our day with only five spoons left. I’ve tried to use my favorite childhood tool — education — to improve my relationships while living with MBC. I’ve educated people about what my diagnosis means, my prognosis, my treatment plan, and my needs. However, some don’t believe it, and they’ll say, “You look fine!” Living with MBC can be isolating, but I’ve now spent more than half my diagnosis in a pandemic, which exacerbates the loneliness. In my work, I continue to write grants for projects I likely won’t live to complete. I feel driven to make as big an impact as possible in the world knowing that my window of opportunity could close at any moment. I want to be remembered as the “cool aunt” by my nephews and nieces, though I’m their only aunt who doesn’t have a dog. It may be a hard sell. I’ve maintained an active life after my MBC diagnosis. Nearly a year into my diagnosis, I earned my black belt in taekwondo. Still, MBC is a beast. When my MBC is visible to others, it is awkward – I think it’s a reminder of my mortality. I’ve lost several meaningful friendships with people who say they can’t bear a “front row view” to my struggles. I get it, but it stings knowing that their discomfort overrides their value of my friendship. With both CP and MBC, one thing I’ve always known is that my true friends are the real deal. Their love, acceptance, and good humor keep me afloat. Here I am, needing folks to understand the severity of my MBC diagnosis after spending a lifetime teaching people that my CP does not affect my abilities. This health challenge has gifted me with several lessons. Talking about health conditions should not be taboo. Whether a person has a visible or an invisible health condition, listen to them. Everyone is likely living with struggles of some sort. Acknowledging our needs, our talents, and our mortality gives us all space to live authentically. We all deserve this sacred gift.

    Community Voices

    Uphill battle

    Bit of struggle again.

    My hearing is going again. The doctor doesn’t seem bothered because it’s not blocked and doesn’t look infected, and said to come back if it continued. It’s already been a month with it and it’s not gone away. Its incredibly frustrating when it goes. Its disorientating. And surely no visible cause is concerning? Especially given I haven’t made it a year post-op yet.

    My heartburn and acid reflux have taken a sudden turn for the worse, around 5 years into suffering with it. I was almost constantly taking gaviscon over the last few days after I came back from my holiday, so I booked an urgent appointment because I couldn’t live like it when it was affecting my sleep too. I’ve got a prescription and they want me to have a OGD. I don’t really see why, because it’s genetics.

    I also caught covid again. I went out to a concert and that’s all it took. I however kept testing negative from the Tuesday I first was symptomatic, until the Saturday when I finally tested positive. The one time I went out somewhere that had a lot of people. (Disclaimer: I am fully vaccinated, have the booster and I had covid before (another disclaimer: back when the vaccines weren’t around and my entire family were basically key workers)).

    Also had a bunch of other minor illnesses and general conditions/ chronic pain I have getting worse. I think it’s gonna be sick girl summer.

    #ChronicPain #BackPain #HearingLoss #GastroesophagealRefluxDisease #Heartburn #AcidReflux #COVID19 #Postop #ill #hardtimes

    2 people are talking about this
    Community Voices

    This gem shares so much wisdom. I grew up w/ the rhythmic, lyrical words in Dr Seuss books & enjoyed the beautiful pictures but there was so much more

    <p>This gem shares so much wisdom. I grew up w/ the rhythmic, lyrical words in Dr Seuss books & enjoyed the beautiful pictures but there was so much more</p>
    6 people are talking about this
    Community Voices

    This gem shares so much wisdom. I grew up w/ the rhythmic, lyrical words in Dr Seuss books & enjoyed the beautiful pictures but there was so much more

    <p>This gem shares so much wisdom. I grew up w/ the rhythmic, lyrical words in Dr Seuss books & enjoyed the beautiful pictures but there was so much more</p>
    6 people are talking about this
    Community Voices

    Heya. Sorry to jump on when I am new here, I'm just needing some advice.

    I have Fibromyalgia, diagnosed in 2020 but been living with it undiagnosed for a year before this.

    I was put on 600mg Pregablin and for a year and a bit, they've worked well to the point I was able to lead a stable life. I moved house and signed up with a new doctor who immediately wanted me off of them.

    I'm now on 200mg DAILY (100mg morning, 100mg night) after going down since Last November.

    But now I am in extreme pain that I never used to be in and feeling really rough. Mental health is bad again and no CBT works. I've had 2 referrals and also given self-help resources. I'm not able to even sit on the toilet without increasing back pain or even put washing out on the line. I feel so icky and forgotteting to do Chores / unable to play with my dog.

    Every time I ask to be given pain meds or something else, I am always told "No, they won't work for you, nothing is available for Fibromyalgia" and just tells me to take paracetomol, think positively and work on CBT. Really doesn't take an inch of pain off at all.

    Unsure what to do, I'm not handling 200mg very well??

    6 people are talking about this
    Community Voices
    Community Voices

    My first bird painting

    <p>My first bird painting</p>
    10 people are talking about this
    Sara T.
    Sara T. @endosara

    How Burnout Impacts People With Endometriosis

    I want to talk about how burnout impacts me and my body with endometriosis. Despite all my best efforts to stay within my usual health baseline, it doesn’t always work and there are days I can accept that more easily than others. Having a disease impact so many areas of your life can be daunting at times, but I’ve also learned the value of listening to your body so you can do your best to get through any discomfort, pain, or unpleasant symptoms. This is often how I figure out that I’m feeling burned out. So what does burnout feel like with endometriosis? I’m so glad you asked because I’m currently going through it! My mind is so tired. I don’t want to make any decisions or think about something too hard because my brain is just exhausted from being “on” too long. It feels like I’ve studied for a week straight, but am unable to retain anything. I have to constantly look back to notes since sometimes brain fog will hit on top of it. It is miserable, even thinking about what I am going to make for dinner is something I don’t want to think about or decide. Top this off with feeling lightheaded and my eyes not adjusting to screens right for work, it gets pretty miserable. I’ve also noticed that when I move my head too quickly, it makes it feel like the blood swooshes from one side to the next like a wave and creates some unbalance like vertigo. It’s a strange feeling but I tend to only get this sensation when I’m feeling burned out. I overcompensate even when burnout happens. I don’t stop and think – I need to rest and get recharged, I’m clearly out of spoons but the guilt of things I need to get done prevents me from doing that at times. I start to compromise my self-care routines because I’m too tired to do them and put other things first that I cannot skip – thinking about work, cooking dinner, taking care of the house, walking the dog, and so on. In reality, a lot of these things probably could wait but it’s hard to remember you’re not always measured by your productivity. My lower back has never ached or hurt so much. I work from home but am often glued to my computer and chair more than I should be and something I need to improve. By not getting up to move or stretch, my lower back pays the price but it really starts screaming pain when I get up to move and will last throughout the day and night. I’ve had to resume using my heating pad – no longer so much on my pelvic area, but on my lower back. The pain doesn’t reside until I start to feel more like my usual self, which won’t come until I have rested for several days and take it very easy to recover.  I’ve also started to notice the shoulder blade in my dominant hand begins to twitch and spasm at times. Some days it pinches with pain and others it stays as just an annoyance when I’m hurting. My menstrual cycle plays a factor in my burnout — it often comes after my period ends. My body needs time to reset and rebuild hormones to get my energy back up. I know I should be patient, but life doesn’t always wait to align with your body. This makes sense as a lot of people with endometriosis have pain/symptoms around their periods so it probably takes a bit more out of us than we’d like during this time. My nausea kicks up and causes my appetite to be poor overall. Nothing ever sounds good, I stick to my safe flare-up foods (soups, broth, crackers, fruit, dry cereal, and so on). I have to force myself to eat at times, knowing my body needs nutrition to function and recover but that can be a challenge. Imagine just feeling sick and exhausted without having an actual bug or virus being the cause. I have to step back, recognize all of these signs and make the decision that I need to rest. That might mean taking a day off work to enjoy a long weekend, not making any plans, or canceling plans I did have (which I hate doing but my body needs to chill during this time) and I take plenty of hot baths with Epsom salt soaks. No type of meds or OTC pain relievers help me usually, but heat does, and my trusty TENS unit can really kick in to help tolerate that lower back pain. These are just some of the things I notice when I’m feeling burned out and it’s not a typical endo-flare, even though some flare symptoms may overlap. It’s not fun, it’s quite miserable but unfortunately, it’s a reality you face when you have an incurable disease, and it doesn’t seem to matter how careful you are with your lifestyle, diet, work schedule, etc. It just happens from time to time and I’m still trying to figure out my “why it does happen” to this day. I know burnout impacts a lot of us with chronic illnesses. How does burnout impact you or your condition? What do you notice? Does anything help you recover or are you stuck waiting it out?