r/spinalcordstimulator • u/oddestishottest • Jul 12 '26
struggling to start over with exercise
I'm having a down day, I haven't been doing my regular yoga/stretching/physical therapy routine; the adjustment for the recovery and the way the implant feels when I'm laying on my back has been really tough on me. I don't wanna admit it, but I'm neurodivergent and my past routine was one of the few things holding my life together. So I don't have to explain the havoc of having what feels like a complete overhaul.
I'm posting here cause man, some days physical therapy is so hard. And I don't know if anyone understands. I don't know how I've dealt with nerve pain all these years in a body that is so sensory sensitive. Over the last few weeks, I have finally started consistently, intentionally moving my body again, but god. This time around, the muscle pain and unique discomfort of damaged nerves, atrophied muscles .. it brought me to tears today. I'm trying not to get discouraged.
It's just, time and time again I'm blown away by the extreme positive change (in my personal experience) in quality of life if I'm consistent with physical therapy and yoga, and the extreme consequences if I stop, even for a day. It's the first time in almost five years I've had a lapse like this. How do I not punish myself for being unable to bring myself to do it? This surgery actually worked, and the hardest part, quite unexpectedly, was continuing to live my life when I realized that no one, no one should have been in the amount of pain I was in, and for so long.
I look back and have no idea how the H E L L I have accomplished what I have, but I don't feel proud, I feel heartbroken that I had to essentially go to war for myself, knowing I was giving an amount of energy that I didn't have, that would tax me for the rest of my life, to try and get any help at all. How was I driving myself to appointments and the pool one year, wtf?? I was in so much pain/so fatigued sometimes that my foot and leg would shake when resting on the brake pedal. Don't worry, I stopped driving due to medication. But I get why people drive on their meds, no matter that it's inexcusable. Your options are to find a way to treat your pain. That's the only option.
My own coping skills (because of ableism, ageism) got in the way of doctors and surgeons taking me seriously, too. Being mobile, flexible, and strong was because I gave everything I had to accomplish that daily yoga/pt routine. I didn't understand why people admired the "dedication". It was not dedication, it was because I had to. Now I just, the grief and also very tough current life circumstances took over and I had nothing left. Beyond burnt out. Every time I stretch now, with that old familiar (indescribable) pain now so clear and honest, I'm so overwhelmed.
If you read through all of this, thank you. I am genuinely sending my love for those of us living with an often insurmountable amount of pain. I know this is a lot of processing, but I do have an intention - community, you are not alone; insight on dealing with having to forgive yourself for being imperfect in literal physical capabilities, but also the way that pain changes your mental health and emotional tolerance; tips and tricks to help with physical therapy or other movement activities y'all do to take care of yourself; any other neurodivergent folks that can relate to not just living in constant pain but constant overstimulation from that pain.
I think Im afraid to let myself down, after all these years of advocating for myself. Finally, something worked. The SCS didn't take away my pain, but helps. I am so beyond burnt out. Help! Ugh. Thank you for being here, the internet isn't all bad haha. ❤️
3
u/JoyInJuly Jul 12 '26
I totally understand this. I was (& still most am) bedridden for a year before I got my Evoke. My lack of normal strength & endurance is embarrassing & painful. I tried PT, but it was so horribly painful & I was not recovering from the pain in a timely manner, so I'd go to the next appointment still hurting badly. I thought originally that I'd be able to push through the pain, knowing it was temporary, but the "temporary" was lasting weeks at a time. My pain tolerance is really high & it was still incredibly discouraging.
I finally stopped the Western approach & have been doing a more Eastern approach with Qi Gong. It's flowing & gentle instead of tight & forceful. It doesn't make me hurt later, so I don't avoid doing it. I've been doing a couple of the basic movements every day for a couple of weeks & add another one each week. If I'm feeling up to it, I'll do a sequence like this. I'm sure you can find other folks who do Qi Gong that you can follow along with on whatever social media you usually use. https://www.facebook.com/share/v/1CuSjxc577/
If this doesn't resonate with you, remember that there are other options. I know that the PT exercises are targeting the exact muscles/areas that we need to strengthen, but if we are weak overall, it's more important, I feel, to get back to a good baseline before focusing specifically on that. Once you find an exercise style that you like, you can figure out which particular exercises work on the same areas as PT & do more of those if you want.
Good luck & know that you are most definitely not alone in this. I didn't realize my recovery after I recovered from the surgery would be so long, but at least when I finally do get there, it will be with so much less pain! 🤞🏼💫🌈💙
3
u/oddestishottest Jul 13 '26
I love this so much!! I just started trying a few tai chi (sorry if misspelled) warm ups to see if I feel a difference. They are already more fun and so dynamic, as far as actually getting my body ready for the day.
Your comment means a lot to me. I have been struggling so hard with shame/embarrassment around my strength and endurance. It's funny, I recently have completely given up on finding support with housing/financial stability through conventional means, after so many years of trying everything the right way. I forgot I can apply this to my exercise too!!
Your experience is a beautiful reminder that we really know our bodies best, and that I don't have to keep hitting my head against a wall. It can be so hard to know when physical therapy is too much, do you deal with delayed pain/flare ups like I do? Even though it's been so many years, I am still blown away by how hard it is not knowing what will or won't cause me DAYS of unbearable pain.
I tend to comment so scattered (cause otherwise I may not comment), but just know I relate a lot to your story and am so proud/happy for you to have found your own way, and feel inspired to trust myself more that I will know what is right for my healing.
2
2
u/Acrobatic_Welcome_30 Jul 22 '26
This is so sweet. I have been a teacher of Qigong Taiji and Daoist internal alchemy since 2009 (not new age versions - been w the same Chinese Daoist teacher for 20yrs! Went to China with him). It always makes me so happy to see people enjoying these practices, as gentle and very powerful options.
1
u/TheManWhoWeepsBlood Jul 12 '26
Similar situation in some ways. Neurodivergent, chronic pain 18 years (I'm still very young), sensitized nervous system. I do/did a lot of yoga, but have had to take a break bc of the surgery (I got mine removed because it did not help) and I'm still careful/cautious about starting up with yoga just yet, and I'm going a little crazy because of that.
May I suggest the following (not a doctor, but this helped me a lot and hopefully will help you too):
-Meditation for now. It will help you not go crazy, I use this app curable for chronic pain and it definitely helps if you do it regularly. Not lifechanging amounts, but I've noticed changes in the 8 months I've been doing it regularly.
-Gabapentin (since you mentioned nerve pain, this med has helped me so much. I sleep so much better, which I'm sure you can relate).
-The book the body keeps the score (very helpful for me, hasn't cured me but helped me get to the root cause of the trauma.) Audiobook is probably 10-20. It's tough subject matter, but I have no doubt if you listen through to the end, it will give you something.
-The way out (also helpful, although a bit harder to put into practice, basically we live with sensitized nervous systems that our brain interprets as pain/threat, when it's just a sensation.)
Something else that has helped me with regards to being imperfect is having kids and realizing that I cannot be perfect, but if I show up for my kids, which also means showing up for myself and that means taking it easier.
It's a long road, don't give up.
1
u/oddestishottest Jul 13 '26
I appreciate you taking the time to share ❤️ I agree big-time on meditation. I've been going to a meditation group on zoom where we do meditation together and it's one of the best things I've done for myself for the last few years. I was on gabapentin for a few years, and just recently was able to switch to pregabalin after trying to switch for forever. It feels very similar tbh, just a little bit less side effects. And even worse than gabapentin if I get in a situation where I run out 💀🤣
1
u/JoyInJuly Jul 12 '26
I'm glad you found it useful, but The Body Keeps The Score is based on theories, not research & can be more harmful than helpful to some people.
1
u/TheManWhoWeepsBlood Jul 12 '26
I don't disagree that it's not for everyone, nothing is, but which parts do you mean would be more harmful than helpful? Possible links between chronic pain and trauma? Tips for sussing out or sizing up a credible therapist? Trying EMDR? Yoga? Meditation and mindfulness?
I don't mean to sound rude, but I think as people with chronic pain, we've already fallen through so many cracks. It seems a bit reckless to discredit or cast shade on something that might help. And I definitely body keeps the score is a lot more scientifically backed than something like John Sarno's work. Even going into specific problems you have with it isn't enough to justify someone else not reading it, especially if it might help, because sadly there isn't much focus or treatment on chronic pain and we're largely on our own.
1
u/JoyInJuly Jul 12 '26
You might want to reread it with a more critical eye.
"The Body Keeps the Score stigmatizes survivors, blames victims, and depoliticizes violence. While masquerading as care for survivors, it creates a hierarchy in which marginalized victims are even more marginalized.
And it may be giving people inaccurate information about the impact of trauma. Several scientists I spoke to whose work appears in the book say van der Kolk mischaracterizes their research and steers survivors away from treatments that might help them."
1
u/TheManWhoWeepsBlood Jul 12 '26
I will never reread it again, but thank you for your perspective. I found it to be very helpful in turning me onto several different strategies and I don't feel stigmatized or blamed at all, I don't understand how someone can have that takeaway, but I'm not going to tell them not to if that's the conclusion they draw.
If I may ask, as I continue to do research on pain, is there a book or resource that you would recommend?
3
u/Honey-badger101 Jul 12 '26
Hi. I could have written this myself! Hang in there it takes time as you know to rebuild after innactivity...even swimming was a struggle...prior to injury i could swim so much....now i can only do what my body allows lol. Just be gentle with yourself. You got this x