Chronic pain and staying active. How do you manage?

I have had a bad back since I was 7 years old. Off and on I have backpain. I did a lot of 'back'exercises, but the last three years I had a constant pain in my back and hips, especially when I was lying in bed, so I didn't sleep well for three years. Two weeks ago I found a site about alignment, and I started with a few simple exercises (calf stretch, hip lift, not the usual backexercises, in fact they were meant to relief menstrual pains) and that same night I could sleep without pain!!! I find these sites extremely useful: http://www.katysays.com and http://www.alignmentmonkey.com

My journey is posted on my profile, but in summary, I was in a car accident 3 years ago. After a few months of chiropractic, massage therapy, and physical therapy, my PT put me in the pool. That was the first time my body experienced movement without pain since the accident. I started water exercise classes 3 times a week and quickly saw progress in mobility and muscle strength. Soon I was able to add gentle yoga, and eventually spin class (no impact). I tried Pilates and a couple of other things, but alas it was too soon. Finally, last year I was able to make headway on the elliptical; again, a no/low impact way to add miles into my week. So proud to share that this past September, I completed a 6 week KAIA boot camp and was SO excited with my progress and my increased strength (core - including back strength, leaner and stronger arms and legs), resulting in lots of foam rolling (LOL) but still not much running. Only in the last couple of month have I been able to add actual jogging into my schedule. I now go about 3 miles 2-3 times per week, in addition to spin 1-2 times per week, and other cardio/strength training activities. A MAJOR accomplishment for me. Through the process, I also lost a great deal of weight that my doctor told me was slowing down my healing (and I gained due to my immobility from my accident), and my back specialist incorporated a few weeks of acupuncture to "push through to the other side" of progressive healing. So long story short, it has taken a long time to get to this point, and I may never be able to train for a marathon, but I am healthier and feel better and stronger than I ever have. That is more important to me than anything else. When I have flare ups, I use my foam roller ALOT, my home "tens unit" machine and lots of gentle stretching. On those days, I walk instead of run, or take an easy bike ride to loosen up the back, hips, and glutes, or even move back into the pool. But for the most part, my pain has been minimized with very little use of pain meds. My specialist had suggested the possibility of back surgery early on in the journey, but I was committed to exhausting all options before choosing surgery. I now know I will be able to continue to age in an active manner. I am looking forward to traveling, hiking and lots of adventures into retirement, which is still several years away. And maybe, just maybe, I'll put a marathon on my bucket list one day. I was one of the lucky ones I guess. But maybe you can glean some ideas to help you as you make choices of your own. Feel free to friend me if you want to stay in contact. I am always happy to share my experiences. Best wishes to you!

Be patient. You will make progress over time and then you can re-evaluate your bucket list.

Hello! It is really hard to stay fit and healthy when you have a pain condition. However staying healthy usually helps the chronic pain condition. I know because I have a nerve pain condition called erythromelalgia. My feet and hands are always burning and I am always in pain. It comes in 'flare ups' for me. I get a lot of support and help from my friends and family. I also do my best to know my body. If I need a day off my feet I do the best I can and on days where I am not in so much pain I try to cook healthy in big batches so I can reheat meals on bad flare up days! Good luck! Let me know if you need any tips!!!

Elise4270 wrote: »

You make a good point. Last month my husband sent me to a woman for a massage who also has a yoga studio, and had rehabbed herself back from a bulging disc in her neck. I think she's the one to see.

FYI, a bulging disc is considered a neurosurgical emergency. If you don't get to it ASAP, it will resolve on its own and you can't bill for that!

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.

You guys are all heroes in my book. I am very lucky suffering no more than fifty-year-old aches and pains.

I pay attention to joint pains and modify as needed. Don't add to the damage!

Yoga has been great for me too for injury prevention and core development.

Walking is always good.

My favourite Weight Watchers instructor was crippled up with arthritis but yet the most positive person I ever met. She described her moment when she decided she might as well be active and in pain as laying in bed in pain. Imagine the effort to get out of bed that first time.

Elise4270 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 the very same symptoms. AS is the first thing I though I had, but like you said docs don't bother checking if your female. I go back in a few weeks and am going to push for AS consideration. I think mine is compounded by pars fractures. @LoneWolfRunner‌ also has AS, and logs a respectable number of miles.

@Elise4270 -- I also have AS; please PUSH your rheumatologist the next time you have bloodwork done and remember that you are the customer. If they cannot provide you the service you need, please find a new rheumatologist.

Hi everybody. This is my second post on MFP. Its great reading everyones stories. Chronic pain feels so isolating at times.

I am 30, and came of my motorbike at 19. I took the full impact of a 4x4 with my right foot. Drs tried to save my foot and I had many reconstructive surgeries, but 18 months after my accident the bones in my foot began to shatter and I made the decision to have an amputation. I was advised to have the limb removed below the knee rather than at the ankle as it is easier to fit a prosthetic limb further up the bone.

So here I am-31 in July. I have been wheelchair bound for 2.5 years. Because there was such a long time between the accident and the amputation I suffer with phantom limb pain (and really annoyimg itches!), also I was very unwell at the time of the amputation-I was receiving introvenous antibiotics and was very run down. I spent 6 months in hospital. After the amputation I had complications with my stump and a heamatoma, this made learning to walk very stop start and loooong!

I could go on and on....but here is where im at now. 30 surgeries, including having my stump opened up to remove nerve endings and having to relearn to walk for the third time. Chronic pain in stump has left me unable to weight bear through it at all, I also have the complications of osteoarthritus in my good knee (down to years of using crutches) and recurring carpel tunnel in both wrists. I may also have arthritus in my right hip joint-it hurts alot when I am upright. I have CFS (chronic fatigue syndrome) and possible fibromyalgia.

I want to stand. I dream of walking. I dream of playing chase with my six year old. I want to dance with my husband. (Not that hes keen lol!).

Anyway. Im around 1 stone down after having a rough start weight wise to the year, been logging obsessively for a month and finally beginning to see results if I can lose weight I hope to become more mobile..just a little bit would be lovely

I aim to work out every other day-fatigue allowing of course.

I have no friends here yet <sob sob>, and I would love to be in contact with some of the people on this thread, or indeed anyone who is battling chronic pain along with losing weight

I was 18stone9lbs, I am currently 17st7lbs. Im 5'11.

Sorry for the epic post!

Elise4270 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 the very same symptoms. AS is the first thing I though I had, but like you said docs don't bother checking if your female. I go back in a few weeks and am going to push for AS consideration. I think mine is compounded by pars fractures. @LoneWolfRunner‌ also has AS, and logs a respectable number of miles.

Holy... what???? My rheumy checked for it. Definitely PUSH for it. @amwcnw also has it.

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:)

@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.

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!

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!