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    Community Voices

    Not sleeping well?

    <p>Not sleeping well?</p>
    3 people are talking about this
    Community Voices

    Fibro exhaustion

    Im 58 & struggle with unrelenting depression, Sleep apnea (currently untreated due to Ins problems) Fibromyalgia 17 years. I am affected by Degenerative Disk Disease, Osteoarthritis & severe Spinal Stenosis. I am just now 3.5 months post-op a large neck surgery. 8 level laminectomy & 2 titanium rod and screw fusion. Fusion from C2–T2. I have little side to side turning ability for my head but I am in nowhere near the pain I was in before.
    My issue I am So tired of being so tired. But it’s beyond tired. I’m exhausted. I’m depressed that I’m so exhausted, which makes my depression worse. I literally wake up most of the time more tired than before I went to bed. I wake up with barely enough energy to get dressed. My hygiene has taken a nose dive. My depression is soaring. I’m almost too tired to care anymore.
    I’m tired.

    Pain Awareness Month: What I Need You to Know About Osteoarthritis

    I remember the very moment I noticed. It was March 31, 2018, days before my 38th birthday. I was on vacation in the Philippines, out with a group of people I met there, and I looked down at my left hand and noticed two of my knuckles were slightly misshapen. Four years later, I have full-blown, painful arthritis in all of my fingers. It didn’t begin there. I’ve had back pain since my teens and confirmed advanced osteoarthritis and degenerative disc disease in my spine by my early 30s. For my 42nd birthday, my feet decided to join the arthritis party. I also have fibromyalgia, a little-understood chronic illness with symptoms spanning from cognitive to mental health to physical, which include chronic pain. I am in pain every day, and I will be for the rest of my life. I want to tell you what that means. I’m not trying to be high maintenance. I may ask you to help me with something that seems simple or reasonable for most people to do, such as lifting something moderately heavy. Even if my arms are strong, my back may not be able to handle the weight, or I might be afraid I could move the wrong way and be unable to walk for days or weeks. I may ask to sit in a certain chair in your home, request a pillow, choose to sit on the floor, or not sit at all. I may not eat certain foods that will increase my inflammation. I’m not trying to be needy, difficult, seeking attention, or being a blatant weirdo. I’m trying to manage my pain. I’m not impatient; I’m in pain. I serve on several boards and I get frustrated at meetings going long, especially due to unproductive venting, and it’s not because I’m bored, disagree, or don’t genuinely care. It’s because every minute I sit in that chair, I’m in pain, often intense pain. I’m not rude; I’m in pain. I might show up at the last minute and be the first to leave the dinner table. Again, it’s not because I don’t want to be there. It’s because the social situation involves sitting in a chair, which is painful. I have a sitting disability. My pain isn’t just about the pain. If I stop doing something because of pain, it’s not necessarily about whether or not I’m experiencing the feeling of pain. It’s about what the pain is telling me: that I’m causing damage to my body. I need to not cause damage to this vessel I need to use for the rest of my mortal life. I’m not trying to blow you off; I’m just worried about my pain. I may decline invitations or cancel plans because I worry about an activity causing me pain (and damage). I also worry about my pain making me unpleasant company or preventing spontaneity that everyone else in a group would enjoy. I need information. If we do make plans, please tell me as much as you can about where we’re going, how long we’ll be there, and what it’ll be like. Check out this article I wrote about exactly what information to provide: Advance Information Checklist for People with Disabilities and Their Allies. I’m not unprofessional; I’m managing my pain. I might wear sneakers at one of my professional speaking engagements or flip-flops to a board meeting to prevent increased pain in my feet. I might be lying down or curled up in a casual position during a business call to prevent increased pain and damage. My standards of cleanliness are higher than my environment reflects. I do my best to keep my house “good enough” as far as cleanliness and lawn care, but I do wish it were perfect. I love clean spaces. It’s just extremely painful for me to use my hands longer than several minutes at a time, which makes it very difficult to keep up with my house. My pain makes me sad sometimes. Being in constant pain is depressing. Physically coping with the pain drains resources for emotional strength and makes me more susceptible to sadness. Also, there are so many losses that I grieve. That I can’t ever run another 5K. That I’ll never manage a backwoods camping trip. That I can’t wear my favorite boots all day long anymore. The invitations I decline. The limitations on my independence. The limitations on what I can do to earn a living. That I’ll never have a pain-free day for the rest of my life… I don’t want you to fix it. I know you care and don’t want me to be in pain, but please keep your “solutions” to yourself. I bet I’ve already heard it, probably tried it, and besides, I can’t be fixed without a scalpel at this point. If I share about my pain, please just listen and not rattle off the first solution that comes to mind. If there is something you can do, don’t worry, I’ll ask. I’m afraid for my future. With a degenerating condition that’s already so advanced at age 42, I’m terrified of what my future will be, all the limitations, necessary surgeries, being fully disabled and dependent … though I have no spouse or children to help me. I try not to think about it but instead just mind it behind the scenes by staying as healthy as I can, making good choices, and asking for help to prevent injury. Sometimes, though, the picture of a doomed future is too big to ignore and I’m so scared. It’s not fair. Right, right, life’s not fair, but that doesn’t make it OK. There’s only a certain level of acceptance I’ll ever reach. I’ll still be aware of what I’ve lost. I’ll always know that it’s not “OK” to hurt all the time, and at my worse moments, I may resent those who live without pain and seem to take it for granted. Some of the extra work I have to do is to catch myself in these moments and not take it out on you. It’s not going away. Who I am now, and how I have to live, is who I’ll always be. My pain isn’t something for you to get past or overlook. I need you to accept it and live with it like I do. I am valuable. I am a whole person, and my pain is a part of that. I’m not “broken.” I’m not “less than.” I still have everything to give to the world and I give it with my whole heart. I am happy. While I may be sad sometimes, and I get frustrated and experience a multitude of unpleasant emotions due to my pain, overall, I am a happy person. Like I said, pain is just one part of me and my life. I also love adventure and dogs. I am creative. I have a great sense of humor. And I have as much right to joy, and truly as much access to joy as anyone else. Sometimes joy takes work, but mostly it’s a choice. I can’t choose whether or not I’ll be in pain for the rest of my life, but I can choose either to be unhappy forever because of my pain, or to be happy because of all the countless reasons I have to be so.

    Community Voices


    My husband and I are flying to see family at the end of this month. In a concise nutshell, L4 & L5 advanced spinal stenosis, herniated disc(s), osteoarthritis in both knees. Steroid shots in back went well. Tried steroid shots (Dec '99 and June '22). Both steroid & gel shots relieved nothing. Taking Gabapentin and prescribed lidocaine patches. Seeing pain management in just over a week. Hoping, praying, and not sure what to expect.....
    I know I will require a wheelchair during flight transfers and layover. Can anyone recommend travel tips? I'm presently using a cane daily and am severely limited in mobility.
    #SpinalStenosis #TravelTips

    1 person is talking about this
    Community Voices

    This is a 1st for me. I live in a small town with few primary Drs. My primary recently changed & the quality of my Healthcare is lacking while more health issues are popping up. My local hospital has a group which inc a Dr I went to in the past. 1st one I tried to schedule with refused with no reason so I had an appt with my original Dr that works out of there. Got a call they refuse to see me. Was able to speak with their office Mgr & was told it's due to my pain meds & they consider me new even though in the past I was with him for a few years.

    How, esp in a small town can they deny patients? I am beyond upset as if what I deal with on a daily basis isn't hard enough to deal with. I just want to crawl in a hole.

    10 people are talking about this
    Community Voices

    Pain medicine monitoring

    Hi! I have a ton of pain. I have severe osteoarthritis all over my body and fibromyalgia. My knees are bone to bone and my fingers are all bone to bone .My doctor has allowed me to have 2 Percocet per day. I break them in half an only take half at a time. Now all of a sudden Kaiser said I have to go to pain management clinic to have my medicine monitored. Does anyone else have to do this??? What should I expect when I go on Tuesday?????? Please let me know your thoughts. Thank you.

    1 person is talking about this
    Community Voices

    Gratitude for things large and small

    When I let our family dog, a black Labradoodle named Winston out today, I took what felt like a huge risk: I ventured outside with him instead of just letting him out! Walking cautiously into the heat and humidity, I stepped onto the grass fully aware the ground was uneven, and felt it gently give way under my feet. It felt good to be out there, the dog happily rolling in the grass, and to feel the breeze in my hair.
    Why is this so significant? Like many of you, I have hypermobile Ehlers-Danlos Syndrome with a host of co-morbidities. At 74, instead of enjoying my 'sunset' years exploring the world and enjoying friends, I spend most days holed up in my room, propped in the bed reading, watching TV or writing. I've been inside so much I may be getting moldy. It's a situation that leads to depression but that's a story on its own.
    So, why did I venture out on these ridiculously wobbly legs? Besides longing for fresh air and birdsong, I wanted to see if I could find a way down to the swimming pool since I cannot use the steps.
    I've studied the side yard, which is uneven, in the past. This time, I may have found a way to address the problem, but it will require assistance. And there is the nexus of the problem. Though my spirit is willing and quite creative at times, my body will not cooperate and I hate asking for help.
    It's a disability story we've all lived, isn't it? If our conditions worsen, or we face new problems all our building blocks have to be reorganized to accommodate the new situation. No matter what we're dealing with change is a problem, but it may also bring solutions. If I can help to make it down to the pool on occasion, perhaps I'll be able to do other things. I won't know until I try.

    #HEDS #Osteoarthritis #juvenileArtritis #shoulder replacement #Lymphedema #lipededma #ChronicDepression #chronic Fatigue #chronic Pain, #Fibromyalgia #TMJ #SpinalFusion #DeConditioning #IBD

    4 people are talking about this
    Community Voices

    Dilemma: Time for a new approach


    I am 71, so by no means a young person, and my issues center on osteoarthritis and joint pain. I have a hip that has pretty much frozen in place--the cartilage is destroyed, and the joint is pretty much surrounded by bone spurs. The latest steroid injection did not help, and that avenue may be closed to me, as I know the benefits of steroids don't last forever. I also have a couple of old-age type herniated discs in my lower spine.

    It generates a lot of pain on a daily basis. Recently, I have gotten tendonitis in both wrists and received an injection in the right wrist--the dominant hand.

    I'm kind of fighting a lot of battles. The hip cannot be operated on because I need to lose weight. In order to do that, I need to follow a low-sodium and low-calorie diet and go to the gym. The pain in hip and back is at a level 7-8 most days, and I am no longer able to walk the short distance to the gym. (Too short to call an Uber, too far to walk.) I use my upper body a great deal to help myself move around, but now my wrists are likely to be out of commission a couple of days a week as the pain flares up.

    I want to ask for one of two things. Either: (a) a scooter or wheelchair for better mobility and less isolation; or (b) some kind of pain medication. Doctors do a lot of pearl-clutching if you mention you are taking aspirin (which helps), and they have kittens if you take more than two ibuprofen at a time. My Medicare advantage provider likes to be in the forefront, and they now treat pain meds as being in the same category as cigarettes.

    I'm looking for suggestions as how to deal with my medical team. I'll shortly be seen by a hand specialist to deal with the tendonitis.

    3 people are talking about this
    Community Voices

    Asking for prayer

    Hello all,

    I'm reaching out for prayer and support.

    I am a lifelong christian, but I am going through a very difficult and uncertain period. I deal with depression, chronic pain and am unable to walk properly because of severe osteoarthritis in both knees. There are a number of other things, that I won't go into, but are making life quite overwhelming. I am in a very vulnerable place. I am asking God daily for His Strength, to help me heal and handle all that is going on.

    I am quite isolated at this time, people tend to fall away when the suffering becomes great, you know ?
    I love The Mighty and all the wonderful people here.

    Hope all here are well.
    Thank you so much

    #Christian #chronic pain #Depression #struggling #Faith #Support #CPTSD #Trauma #alone

    37 people are talking about this
    Community Voices