Chronic pain and staying active. How do you manage?

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  • Angiefit4life
    Angiefit4life Posts: 210 Member
    edited April 2015
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    The past year has been life changing. My original primary doctor blew me off but thankfully I had a friend/coworker that was the public health commander on our base who was able to get me a referral off base. My blood work was crazy. I find that the days I don't walk my back hurts more! I am thankful for a fantastic primary doc and rheumy. My rheumy must had expected AS on my first visit. hlb-27 pos and my CRP was 126.8. He never once said it was a man's diease :) Humira seriously gave me my life back!! While I am not happy seeing others have it does make feel like we are not alone:)

  • LoneWolfRunner
    LoneWolfRunner Posts: 1,160 Member
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    This has been an eye-opener for me. I got AS when I was 14, but wasn't diagnosed until I was 22. So a lot of time on crutches. I was always told it was an exclusively male disease, but I am seeing now that it is not. AS pain is wicked stuff and as you all know, substantial pain over a long period of time changes you. My AS pretty much stayed out of my spine and settled in my hips where it destroyed both of them. I had the right replaced when I was 24 and a re-do on it when I was 44. I got the left done at the same time.

    About four years ago, when I was 53 I decided I was going to do something I had been told for decades that I would not, should not, could not do: run. I discovered for me I need to be in minimalist shoes to run and my legs and bag are happier when I wear them the rest of the time too. I know that may of you may think that running is impossible (and for some, it truly may be) but like @CodeMonkey78, I finally got tired of the AS (and other crap... I also have osteoarthritis) kicking my butt and pushing me around. I had always focused on weightlifting, but running lets me also heal my spirit. Thanks for starting this thread, Elise.
  • jgnatca
    jgnatca Posts: 14,464 Member
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    @mrsjb1984, no need to apologize! Your story is an absorbing read, probably not as thrilling to live through as it is reading about it. I my wish is a return to greater mobility and freedom.
  • Elise4270
    Elise4270 Posts: 8,375 Member
    edited April 2015
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    LoneWolfRunner wrote: »
    This has been an eye-opener for me. I got AS when I was 14, but wasn't diagnosed until I was 22. So a lot of time on crutches. I was always told it was an exclusively male disease, but I am seeing now that it is not. AS pain is wicked stuff and as you all know, substantial pain over a long period of time changes you. My AS pretty much stayed out of my spine and settled in my hips where it destroyed both of them. I had the right replaced when I was 24 and a re-do on it when I was 44. I got the left done at the same time.

    About four years ago, when I was 53 I decided I was going to do something I had been told for decades that I would not, should not, could not do: run. I discovered for me I need to be in minimalist shoes to run and my legs and bag are happier when I wear them the rest of the time too. I know that may of you may think that running is impossible (and for some, it truly may be) but like @CodeMonkey78, I finally got tired of the AS (and other crap... I also have osteoarthritis) kicking my butt and pushing me around. I had always focused on weightlifting, but running lets me also heal my spirit. Thanks for starting this thread, Elise.

    You're welcome. But I selfishly did it for me. I was so tired of feeling alone.

    No one can understand what a chore it is daily to reconcile the pain and keep pushing forward, or putting your shoes on, or going to the bathroom. No one understands how the little things cause pain. I was tired of being dismissed.

    I needed you (and several others) to lean on, keep me focused and fighting.

    Thanks everyone.

    I'm glad to know you made it through hip surgeries and didn't give up. I'm afraid of surgry but its looming ever closer. I have osteoarthritis too, right hip, back, and right thumb so far.
  • CodeMonkey78
    CodeMonkey78 Posts: 320 Member
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    mamapeach910 wrote: »
    meganmickmeow wrote: »
    I have ankylosing spondylits and probably psoriatic arthritis too (the treatment is the same so as long as I'm getting treated I'm ok! Lol ). I need to stay active and limber as I can so I keep a good range of motion and being active helps with the pain.

    If anyone notices that their back pain goes away when they are active, and is worse when they are resting please talk to your doctor. Especially if your back pain (lower back pain especially) is waking you up at night, and you are stiff for an hour or more when you wake up.

    A lot of women are delayed a diagnoses of ankylosing spondylitis or related arthritis because many health professionals still believe it is a mans disease.
    I spent way too many years in pain, too afraid to work out for fear of hurting myself more. I turned 30 in January and have decided that I'm going to spend this decade in better shape than the last!
    I love to go for hikes, long walks, cycle and some weight training. I'd love to run again, I'm waiting for my legs to get a little stronger first though :)

    As for pain, I try to manage it as well as I can. Since starting a medication called Humira, it's def. a lot easier to manage. It's not perfect though, I do what I can, try to give myself a break.

    I have PsA but not AS, and my doctor put the kibosh on running. Then again, the joints in my feet are hopeless and I do also have degenerative disc disease, so that might have added to her decision.

    I totally agree with you that exercise helps LOADS.

    I'm on Humira too, and agree: some days are easier than others. Weight training does help with building the muscles to support the joints for sure. And I love just walking. That helps my SI and knee joints (also a real mess) a LOT.

    @mamapeach910 -- I also have DDD (along with AS, PsA, and OA) and my back has been rebuilt three times. Every one of my docs has told me that I would never run again. But with the help of walking, hiking hills, and elliptical training to strengthen the muscles around my joints, I am able to run again and run long distance races.

    But I am a VERY stubborn SOB. Part of my goal was (and still is) to prove EVERY one of my doctors wrong, have a more active relationship with my young daughter, and feel normal for as long as I possibly can.

    If you really want to do run, it can be done. It is EXTREMELY hard.. but it is an achievable goal. Just start with a slow, "nursing home shuffle" and you'll be amazed at how far you can go from there!
  • PeachyCarol
    PeachyCarol Posts: 8,029 Member
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    CodeMonkey78 wrote: »
    mamapeach910 wrote: »
    meganmickmeow wrote: »
    I have ankylosing spondylits and probably psoriatic arthritis too (the treatment is the same so as long as I'm getting treated I'm ok! Lol ). I need to stay active and limber as I can so I keep a good range of motion and being active helps with the pain.

    If anyone notices that their back pain goes away when they are active, and is worse when they are resting please talk to your doctor. Especially if your back pain (lower back pain especially) is waking you up at night, and you are stiff for an hour or more when you wake up.

    A lot of women are delayed a diagnoses of ankylosing spondylitis or related arthritis because many health professionals still believe it is a mans disease.
    I spent way too many years in pain, too afraid to work out for fear of hurting myself more. I turned 30 in January and have decided that I'm going to spend this decade in better shape than the last!
    I love to go for hikes, long walks, cycle and some weight training. I'd love to run again, I'm waiting for my legs to get a little stronger first though :)

    As for pain, I try to manage it as well as I can. Since starting a medication called Humira, it's def. a lot easier to manage. It's not perfect though, I do what I can, try to give myself a break.

    I have PsA but not AS, and my doctor put the kibosh on running. Then again, the joints in my feet are hopeless and I do also have degenerative disc disease, so that might have added to her decision.

    I totally agree with you that exercise helps LOADS.

    I'm on Humira too, and agree: some days are easier than others. Weight training does help with building the muscles to support the joints for sure. And I love just walking. That helps my SI and knee joints (also a real mess) a LOT.

    @mamapeach910 -- I also have DDD (along with AS, PsA, and OA) and my back has been rebuilt three times. Every one of my docs has told me that I would never run again. But with the help of walking, hiking hills, and elliptical training to strengthen the muscles around my joints, I am able to run again and run long distance races.

    But I am a VERY stubborn SOB. Part of my goal was (and still is) to prove EVERY one of my doctors wrong, have a more active relationship with my young daughter, and feel normal for as long as I possibly can.

    If you really want to do run, it can be done. It is EXTREMELY hard.. but it is an achievable goal. Just start with a slow, "nursing home shuffle" and you'll be amazed at how far you can go from there!

    I will talk to her about it, especially once my weight gets down. Less weight on the joints might change her mind.

    One thing... I HATE the elliptical, it just feels incredibly awkward to me, so I will stick with walking and strength training as my preferred forms of exercise for now!

    Thanks for the inspiration!
  • akdutton2013
    akdutton2013 Posts: 2
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    Oh, autoimmune friends, how I have longed to find you! LoL! I have RA, fibro, and am waiting on confirmation of lupus. I have found yoga (specifically DDP Yoga) to be my go to for no impact, solid workouts. Would love to connect with y'all for motivation and support!
  • Kiku10
    Kiku10 Posts: 66 Member
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    Fibromyalgia for over 20 years. Water aerobics at the Y in a warm, deep water pool was amazingly helpful. At first I just had years of physical therapy with cranial sacral massag, then worked up to extecise. Light, modified yoga was helpful too. I was incapacitated for a long time. Things are OK now.
  • Elise4270
    Elise4270 Posts: 8,375 Member
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    @Kiku10 glad things are looking up for you and @akdutton2013 glad you both checked in here!

    I suppose we could build a bit more of an interactive community here. Those with common ailments can commiserate/connect!

    Any one have any particular tips they would like to share with others that may be dealing with the same condition? Feel free to get the ball rolling!

    I'm still seeking accurate diagnosis. So far I have confirmed piriformis syndrome. Looking back, I can just about guarantee that I've had it since childhood. No wonder i could NEVER sit up like a normal human being. I thought chairs were torture devices.. So I'm suspecting a physical cause, with the sciatic nerve or sacrum. Its frustrating waiting to be "fixed". If that's even possible.
  • rgoins374
    rgoins374 Posts: 19 Member
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    I am so happy to find this thread. Many people just don't understand chronic pain.

    I have had fibromyalgia since my 20s (before it had a name) and arthritis since my 40s. I am 69 now. I have always had back issues and knew I had scoliosis. After years of back pain, I had my first spinal fusion (L4, L5, S1) in 2009. The combination of the fusion and rigid condition of the curvature caused the vertebrae on top of the fusion to get out of line.

    In June 2013, I had a full spinal fusion done in a 13 hour surgery. I had an abdominal incision, an incision on my left side in addition to the incision on my back. This surgery fused T5 through S1. The side incision cut so many nerves that the muscles don't hold anymore and I have a serious bulge on that side. I had surgery to implant mesh to hold the muscle in place but it was a dismal failure.

    I had a lot of issues after the surgery and some knots on my upper back. It was caused by the top of the rod on the right side so further surgery was done to remove some of the hardware and cut off the rod. This was November 2014.

    That last surgery seemed to take a toll on my body and I was not active at all. Of course, that has led to weight gain. I finally made the decision to go back on my prednisone and got on some good supplements. Two months ago I could not walk 2 blocks; last week I walked 1.39 miles with a group from our community center.

    I find that when I eat the right non-inflammatory foods, my fibro seems to subside. Also as I mentioned, I try to take supplements daily. I listen to my body and rest when it says to.

    I try to stay away from pain meds but take 800mg ibuprofen when needed.
  • Elise4270
    Elise4270 Posts: 8,375 Member
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    @rgoins374 congratulations on adding the walking distance! Community groups and groups here on MFP can be a great motivator. Keep up the good work! There's a running challenge thread if you want to join it and log walking miles. Its a great motivator for me. All levels are welcome.
  • Elise4270
    Elise4270 Posts: 8,375 Member
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    zmusic wrote: »
    Elise4270 wrote: »
    Hello everyone,

    I would love to train for a 1/2 marathon or sprint triathlon or just be able to make it to the gym or a run 4-5 days a week, or bike a century. Or at the very least- train for such events....sometimes I can, sort of...

    I am a 44yo female and I have chronic back pain. I am soliciting a surgeon at the moment, because after nearly 3 years of chronic pain and struggles, I feel it is inevitable. I have come a long way in the last few years. But today I'm down, resting, waiting...

    I feel that I may never be able to make it to the competitive level I'd like. My journey may just be making it day by day to the best I can manage on that particular day, and remembering to not waste an opportunity.

    How you you cope?

    I do yoga and back exercises. I thought I would have back surgery, but I was able to avoid surgery through exercise and weight reduction.

    I'm glad you were able to avoid surgery! I tried yoga rather faithfully. It just sent my muscles into spasm. I may give it a go later, or just learn which poses to stick with/avoid.
  • jgnatca
    jgnatca Posts: 14,464 Member
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    My yoga teacher instructs a blend of Tai Chi and Yoga and is very body-aware. He takes us in to the moves very s-l-o-w-ly, which I think is key. With everything, if it is joint pain, STOP!
  • CodeMonkey78
    CodeMonkey78 Posts: 320 Member
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    Hello everyone.

    If any of you are interested, I have a started a Strava exercise and support group for persons with physical challenges and maintain exercise. You can log your workout and feel free to start discussions if you would like. Here is the link: https://www.strava.com/clubs/pcathletes

    Also, I have publicly published my blog. If any of you are interested, feel free to follow me, my challenges, and my progress! Here's the link to my blog site:

    http://handicapableracing.blogspot.com/
  • Elise4270
    Elise4270 Posts: 8,375 Member
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    CodeMonkey78 wrote: »
    Hello everyone.

    If any of you are interested, I have a started a Strava exercise and support group for persons with physical challenges and maintain exercise. You can log your workout and feel free to start discussions if you would like. Here is the link: https://www.strava.com/clubs/pcathletes

    Also, I have publicly published my blog. If any of you are interested, feel free to follow me, my challenges, and my progress! Here's the link to my blog site:

    http://handicapableracing.blogspot.com/

    Nice! Thanks I'm in.
  • Elise4270
    Elise4270 Posts: 8,375 Member
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    After 3 years of being told my back is the cause of pain I have found out differently. I was offered a double fusion 2 years ago, I'm really glad I didn't buy into it. That would have made my condition worse.

    I have SI joint dysfunction. Scheduled for injections in a week. From my research, its not going to be easy to rehab since I have developed biomechanical imbalances. It is a relief to finally be moving forward. I've started cymbalta. It seems to help a fair amount.

    Wish everyone a pain free day.
  • mbaker566
    mbaker566 Posts: 11,233 Member
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    glad you got answers :)
  • VioletLemon
    VioletLemon Posts: 56 Member
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    well Im fairly new to this- 35 days in. I was heading fast to becoming bedridden. I have degenerative disc disease ( lower ones are completely gone) bone spurs and a crooked spine- I swim everyday and I also drink apple cider
    vinegar everyday- its been like a miracle for me- 14lbs gone so far and no pain while walking or standing
  • Elise4270
    Elise4270 Posts: 8,375 Member
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    @VioletLemon I was originally diagnosed with DDD, I have bone spuring, but not bad and somehow managed to rehab the lower 4 discs that were desicated on my first MRI. The most recent one shows no desiccation. I plan on adding more swimming!


    @moyer566 thanks!

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