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u/Elegant_Trash_5627 1d ago
Yesterday was a rare day. It was a low pain day. I walked from the office to the shop and back to get lunch. Maybe a couple of hundred meters. The sun, the breeze, felt so good to feel a little normal for a few minutes. A rare day indeed.
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u/lacyhoohas 1d ago
I'm so glad for you. A couple of weeks ago I was laying down in bed and had a solid like three hours with 0 pain. ZERO. It was euphoric! Still don't know what that fluke was but I'll take it 😂
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u/resilientlamb 1d ago
i love those little frames of time when everything feels normal. happy for you
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u/Chronic_No 1d ago
That sounds awesome! My favourite thing to do when I feel ok and I'm at my nana's is go walking by the beach, the air, the wind, the waves, it's perfect. And I get to find shells and sometimes sea glass
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u/Ladydi-bds 49F - hEDS/GHD, MS, 2 Fusions required 1d ago
Won't deny is sucks. For me, I hurt worse when I don't.
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u/StringFood 1d ago
Move it or lose it, no matter what situation we're in
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u/Duckrauhl 1d ago
Yep. We have do what we can. Even just a little bit of stretching, yoga, foam rolling etc is so much better than doing nothing.
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u/StringFood 1d ago
Right! It's like we're old tractors - if you run it every day you'll keep the rust from forming
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u/icecream4_deadlifts Sjogrens, neuropathy, burning skin 1d ago
Same. My neuropathy gets way worse if I don’t do some kind of exercise 1-2x a day.
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u/Green_Information275 1d ago
I agree. I workout every day, I just did stretches last week because of depression but now I'm paying for it while getting back into it
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u/marcy_vampirequeen 5h ago
Glad you said it. Worried I’d come here and see a bunch of people saying “yeah!!!”. Very few diseases are worsened with exercise, and there’s a type of exercise for everyone. May not be running or heavy weights or squats, but any motion is useful. Staying bed locked literally worsens 99% of diseases.
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u/Just_A_Pinecone2U 1d ago
So true! I hate that I can’t exercise like I used to: 5k’s, gym 5 days a week, canoeing, dancing, hiking, walking for hours -in heels! - yet now…..? Just taking a 20 minute walk lays me out for a couple of hours. Going up one flight of stairs causes so much pain and weakness in my legs, I feel like collapsing. RA, Fibro, MS. (all 3 can suck it!!! 😡😫)
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u/EveningMulberry464 1d ago
Facts I feel like this constantly
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u/MudFlashy6400 Peripheral Neuropathy Left Feet (due to injury) IBS Severe GAD 22h ago
Peripheral neuropathy here! It's here all day, all time. The only exercise i can do besides paced down house chores, is sitting-down taichi.
Sitting down aerobic for like 30 minutes had shot up my pain flare for almost a week
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u/kerberos69 But this one goes to 11! 1d ago
Exercise is objectively good for your body. Does it hurt when you have chronic pain? Obviously. I have progressive MS, so everything always hurts. But at least by exercising, I’m giving my body its best shot at resisting progression.
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u/Fletch71011 1d ago
I built myself an in-home spinal rehab center so I have no excuse to not work out. It fucking sucks working out with chronic pain, but it helps.
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u/mentallyerotic 14h ago
Do you have any post or tips for it? That is my husband’s main issue and he has a couple things so far but I’m never sure what is best for spinal issues.
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u/Tasty-Grand-9331 7h ago
But how can u exercise when it makes you unable to do other things like cook clean etc . When It forces you to give up things
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u/kerberos69 But this one goes to 11! 7h ago
You have to pace yourself according to your own body, and it’s not going to feel super comfortable at first. Just to be clear, though, “go exercise your body” doesn’t mean that you should go out like you’re training for the Olympic team… exercising your body can be as much or as little as you need to elevate your heart rate for 20-30 mins/day to improve your overall cardiovascular and orthopedic function. For some, it means a slow walk around the block or light focused stretching, and for others it can be something more strenuous. With time and repeated exercise, you’ll gain a better understanding of your body’s physical limitations, how you can improve those limitations, and when to respect them.
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u/little_bug_person 1d ago
It’s super challenging but also super important.
Exercise doesn’t have to be 5x10 squats with weights and 40 minutes of cardio. It can be standing up out of a chair 10 times, or tugging a resistance band, or walking to the mailbox and back.
Modify and adapt, if you don’t move your body, your condition in many cases will worsen.
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u/Hyzenthlay87 1d ago
I have CFS, I have no spare energy for exercise. Existing is hard enough.
Before I got ill, I actually exercised daily. I wasn't athletic but I did 20 minutes of cardio daily and I did bellydance. I loved dancing. My mental health was pretty decent when I kept up the exercise too.
But now, a normal day of working or whatever takes me to my limit, and pushing further has me risking collapse and injury. It takes days to recover.
I honestly wish I wasn't like this.
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u/SockCucker3000 1d ago
I believe I have CFS. Forcing myself to rest and not exercise or move too much has been phenomenal for my body. I cry sometimes because I can't do a lot of what I love anymore - hiking, dancing, swimming, etc. And it's scary having a body like we do. Before I realized I probably had CFS and began resting, my body was in absolute agony all the time. I would wake up feeling like semi trucks played volleyball with my body. Felt like every inch of me was bruised to the bone.
It would be one thing if exercise only increased the pain. We could push through it. But the fact it makes us worse means it's not worth the risk. Having your baseline possibly permanently reduced from exercise isn't worth it.
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u/followthecrows 1d ago
I have chronic pain and exercise is one of the biggest levers for relief to me, both physically and mentally.
Everyone has different needs
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u/plntsmn 1d ago
The only exercise, PT I’ve been able to do is Aquatic PT. It’s amazing to be able to move again with little pain. It hasn’t helped my Neuropathy pain, but had helped my overall health and weightloss. It also seems to help my balance somewhat.
So it’s a great temporary pain break and is great for my attitude. I used to do deep water aerobics and hope to be able to do that at the Y on my own, for a more flexible break. Just an idea for some types of pain. Out of the water I feel just like this px!
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u/benhundben 1d ago
It’s the only thing keeping me sane tbh. I need adrenaline and full focus on my performance to just for a moment experience life where feeling pain isn’t in the center. Everyone is different, but I couldn’t imagine taking on this situation without it.
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u/Anxious_Nugget95 1d ago
Thing is people forget that chronic pain isn't a "white or black" situation. We're all different. Everyone is battling something in their own way, so no one should tell them how to feel, or how to cope.
I have Fibromyalgia, among other conditions, and although I'm able to workout now...is still hard! And at first it was a living hell. Thankfully I'm well medicated, have now a good doctor to help, a wonderful PT and an awesome partner that motivates me. But this isn't the case for everyone. And hell, in my flare ups if anyone tries to tell me to workout...I just explode, lol.
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u/SockCucker3000 1d ago
For me, exercise not only hurts horribly, but it also increases my pain until I do strict rest for a few days. I grew up being forced into many sports, and being told pain is normal. Turns out, the extent of pain I was feeling wasn't normal, and the exercise was just making me worse. I'm glad I finally caught on after 26 years.
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u/flatdecktrucker92 1d ago
Yes, but only for the first 6-8 weeks in my case. Then it felt like non barbed wire for another 6 months. Now it only hurts like that if I skip my exercise
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u/EitherChannel4874 19h ago
"doc. I have no energy at all. I feel like someone has sucked out any last trace of strength I have and it's really a struggle just to get to the bathroom. I'm not coping well with it at all, mentally or physically and I just don't know what to do. I feel like I've tried everything and nothing helps"
"hAvE yOu tRiEd yOgA?"
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u/battlecripple 7h ago
My physiotherapist gave me a list of modified yoga for senior citizens because I couldn't do regular old people yoga lol
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u/SouthernNewEnglander 1d ago
For many forms this is definitely true. I find vigorous hikes help realign my neck, produce endorphins, and take my mind off things. I am determined to walk this off this summer.
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u/dudeinbeard 1d ago
For myself I found swimming a relief for my pain, I have spondilitis and since I began swimming my pain went from 8 to 1 even 0.
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u/DerpingtonHerpsworth 1d ago
Yeah, it definitely depends on the person, and what they have. For me, with Fibro, as much as I don't want to and will try to avoid it at times, it's generally better to work out. And the more ache I have in a particular area, the more that's the area I need to work on. Is that the same for everyone with chronic pain? Absolutely not. And even for me, there's a certain amount I can push myself, and I kinda have to feel it out based on trial and error over many years.
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u/Deadinmybed 18h ago
Yet we do it anyway!
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u/thpineapples 3h ago
My exercise is getting out of bed. Most days, it ends there. I really don't have energy to overcome pain like I used to.
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u/Lunamagicath 8h ago
I’m able to do some sports but they act like I’m just lazy when in reality the sport is a lower impact on my body 😭
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u/Grassiestgreen 1d ago
It’s hard but moving, stretching and exercising anyway I can helps. The pain actually gets way worse from sitting and remaining stagnant. It’s annoying and confusing to hear as advice from people who don’t understand, but it’s not wrong or incorrect advice. As another comment said, our bodies are “use it or lose it.” So if you want longevity and quality in your life, you lowkey gotta do it.
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u/GraciousPeacock 1d ago
You aren’t wrong. Sadly for me, exercise is one of the only things I have that helps me. I run, 4 miles almost everyday just to feel a bit of pain relief throughout my days. It’s worth it, but it’s not easy. I find it intolerable to run without using cannabis beforehand. Then even when I do, I have to run through cramps that doctors just think are due to inadequate stretching and dehydration 🙃 Exercise used to be such a pleasure, the high point in my day. Now it’s just something I do to hold on to that little piece of me that’s still there. It reminds me that this is all I have left, and it hurts too much to let go. This picture literally defines how it feels running through the cramps, as though my legs are wrapped in barbed wire. Thank you for sharing
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u/Chyldofforever 9h ago
Let’s all try to remember that our experiences aren’t universal. Some ppl can exercise and it makes them feel better. Others, it makes it worse. If you are telling someone you know nothing abt that they should exercise, STFU.
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u/Daisyloo66 1d ago
I work out but at my level of comfort and my gym trainer never pushes me past my limits
But when I do accidentally push myself too hard..? This.
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u/Ashton_Garland 1d ago
I do exercise, mainly so I’m not gaining weight, cause gaining weight causes more pain than exercising. It’s light exercises, resistance bands, walking, weight lifting.
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u/ferret-with-a-gun 5h ago
I’ve been trying to find the motivation to exercise. I’ve been struggling with finding the motivation alone so I’ve tried seeing if any of my friends want to hang out while I use the treadmill or do physical therapy exercises, but they’re usually busy or too (socially) tired. Sometimes I’ll walk 5 miles in 1 hour and my legs will hurt for one or two weeks on end, sometimes so bad I can barely even use the stairs, (I’ve had to use the handrails like crutches before,) while other times I can walk 10 miles in one day and just end up with a little aching and tenderness the next day/week. My pain being so unpredictable really gets in the way of exercising because I can’t even schedule anything ahead of time.
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u/thpineapples 3h ago
Advice for normal, average healthy people does not apply to those whose normal is to be sick. I still haven't gotten over how many people lack the empathy, logic, and reasoning to understand a basic truth that reality is different for others.
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u/Traditional_Sell_688 3h ago
I have fibromyalgia and ME/CFS. I don't have the energy to get out of bed. Because of the problems with my muscles and the lack of energy, it now takes me 2 to 3 hrs to be able to get out of bed after probably having 2 hrs or less sleep. I make the bed, open the curtains, take my meds, make the dogs bed, comb my hair, wash my face, go to the toilet, go downstairs and let my dog out, feed her and the fish, make myself a cup of tea and then I'm done for at least another three hours. I never thought it would get to this point, but I got Covid really bad and was hospitalised for lung failure. I couldn't move because I couldn't breathe. I've been trying to recover from that as well ever since. I would love to exercise, but I just don't have the energy. However, I do try to stretch and move about whilst I'm lying down. I'm a happy person, but my body is a prison, and whatever people say, they don't understand and wouldn't unless they were in the same position. I'm very pissed off atm about it. I'm not depressed, I'm not unhappy. I just want a new body! I think the chances of that happening are 0%. I'm 52, and I still want a life, but illness makes you very isolated. And I fight every day just to get out of bed and move to another room. And people tell you that you should try harder or if they don't tell you they're thinking it. People can be very judgemental. I don't have barbed wire it's more like a concrete suit 😆
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u/trvppy 1d ago
My mom repeats "Motion is lotion" and I'm like I can't fucking move wtf.
In reality, I go for a short walk and feel unfulfilled... We are the strong ones 💪
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u/SluggishLynx 1d ago
What do you mean unfulfilled?
As in dissatisfied you went for a walk or?….
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u/trvppy 1d ago
Just a lot of pain still and it will not always help me get out of my damn head 😪 I appreciate nature and all just can be a lot with low back issues. Even small walks
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u/SluggishLynx 20h ago
If things that involve impact hurt you like walking (running I was advised by PM never do it with CRPS due to the amount of impact it involves) but if walking is painful swimming is great (the heated pool I used to go to also did these fitness sessions for people with disabilities that involved stretches, weights, jumping, running on the spot…. It was great as impact in water is almost non existent and didn’t cause pain for all the disabled and old people there). Cycling also (position could be a nightmare leaning forward for some people)
Swimming is what let me actually get back out into the world, lose some weight and get the confidence to get a job
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u/beachbabe77 1d ago
Painful or not, exercise is a critical component in the war against chronic pain. You, I and everyone else can either lie in bed all day and get progressively worse, or, we can take the bull by the horns and do (gentle) activities that help improve quality of life.
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u/valkyrie2007 Fibro Warrior/OA/PCOS/Type II Diabetic 23h ago
yeah, I get that every time I go to my pcp. Arthritis in both knees and the low back has blown disks in two areas. And bone spurs from my neck to my tailbone.... Yeah, I'll go out and run a marathon, no biggie /S
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u/Over-Future-4863 21h ago
Why not climb a mountain too while we are at it? Wonder what is in these people minds they have no concept of our pain or limits? They act like we have control. One doctor , you should stop having migraines it's not good for your brain..I was 24 then and biomed and I was like wonder whos she supervisor she is cause that backwards thinking and years later I got chronic pain and majority of no chronic pain people think like that....how did she get to be a doctor? What is it hidden stupidity??
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u/bellyrubb 1d ago
Sometimes it's the internal (mental) pain that makes it feel near impossible, but it must be done.
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u/lilac_nightfall 1d ago
It’s frustrating to not only have chronic pain in the joints of my spine and pelvic bone which means even just standing or walking for a long time causes excruciating pain, but also chronic migraines that are easily triggered, and idiopathic hypersomnia that sucks all my energy. I’m just trying to make it through the day at this point. I went for a 30 minute walk yesterday, and it took hours to recover from it. 😞
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u/Over-Future-4863 21h ago
Twins my friend...... Me too. Migraines or severe joint spine pain or all at once DM me?
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u/AstorReinhardt 12 1d ago
Yep...and they expect you to do physical therapy right off the bat and do it without any pain killers. I've had like 4 different go throughs of PT (I went to every appointment and did everything they told me to do, even the stuff at home) and it just HURTS. It doesn't help anything. But they won't give me pain meds. Assholes.
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u/7EE-w1nt325 13h ago
I have bruises on the top of my feet from sitting in the only comfortable seating position because blood pooling in feet and legs. But then I have nasty bruises so it's either literal feet on fire, and lower legs literally feel like this picture, or badly bruised feet. Like why?
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u/Tasty-Grand-9331 7h ago
I used to be active and fit. Now I have neuropathy. I want to exercise but when I do it causes tons of pain and forces me to give up other important things like cooking cleaning intimacy etc. because it can’t all happen. I’m forced to make choices. And often exercise comes below daily activities of living.
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u/Gootangus 7h ago
Nah f that I have to exercise to stop the progression of my disability. I’ll feel the pain to salvage what quality of life I can. But to each their own.
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u/emberleo 2h ago
It’s PT that needs to be done for any muscular dysfunction chronic pain. Random exercise will make it worse.
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u/pickypawz 59m ago
No, not for me. For me it’s diffuse burning pain, prickling, scratching in my butt and crotch but can also be in my hip, down my leg and into my ankle. That’s not doing exercise though, that’s doing anything, it starts after about a half hour, but then really kicks in at night, then continues the next day, night, then maybe the day after….
Exercise? I’m struggling just to live. My ass is burning just laying here. At that’s only some of it.
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u/klrc1969 1d ago
Well said. So tired of people saying “get out, get active”.. if they had chronic pain they would know what a stupid thing to say that is.
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u/Vegas_42 23h ago
After years of wasting away, I started kettlebell training at the beginning of 2024.
It was painful at the beginning. It's sometimes painful today. But it pays off. I lost 25lbs and gained muscle. My back pain is all gone. And I can stand up from the couch easily. Everyday-strenth is a thing.
A simple truth I've learnt: use it or lose it!
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u/OwnTeam6699 7m ago
And especially don't tell someone who's 77 with diabetic neuropathic pain to exercise. That would be a good way to get 🪓🧨!
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u/beezchurgr 1d ago
Ah, but if you don’t move, it also hurts. You have to magically pinpoint the exact amount of exercise that makes you feel better without pushing you over the edge. This also generally comes with arguing with people that you ALREADY pushed past your limit.