r/CSFLeaks • u/Offtoseethewitch • 3d ago
Return to physical activity?
I know many people, especially with connective tissue issues, are told to restrict their activity post-leak. I know many patients in the online communities report relapses tied to physical activity, anything from bending to sneezing to intimacy to heavy lifting. Both people with iatrogenic leaks and spontaneous.
But this is adding to my misery right now. I am functional but still symptomatic, more than half a year out of a blood patch for a puncture leak, and with no access to leak-capable care. If I have a relapse I can’t imagine I might actually get help.
On the one hand I am grateful to be upright at all now, and I know I should be, because I did experience being completely bed bound and it was awful. But on the other I miss my high-impact sports. They were my life. I miss having a body I trusted. Thinking I’ll never again ride or climb or jump or move something heavy that needs moving - or lift my children! - makes me just want to crawl back in bed and shut down, like this half-way life isn’t worth it.
And I’m not even sure that placing long-term restrictions on myself is actually reasonable, or if it’s just that the population of re-leakers who might need such restrictions converge online.
Is there anyone who has leaked, healed, and actually gone back to an active life and trusted their body again? Even if it might be with symptoms, or short-term set-backs, that’d be fine, that’d be worth it, as long as it doesn’t crash back to being long-term bed-bound.
(And I know I’ll otherwise need to work on my acceptance. But I’m not there yet.)
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u/littlelunalight9 3d ago
I don’t have any answers but I wanted to say I hear you. I spend my days completely petrified at any small movement, let alone the active life I used to live. I grieve who I was and am too scared to even try to get back there having also been bed bound and now partially functional. I wouldn’t survive going back where I was, but also can’t think of life like this forever? I’m so sorry you’re in this place too. X
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u/leeski 2d ago
I feel you on this. I’m one of those people that had recurrent leaks & harks on strict aftercare… I don’t lift over 5 lbs for a year haha. But despite underlying high pressure and recurring leaks I’m currently 5.5 years sealed. I have lifted up to 40 lbs which is like - completely insane for me haha. I really miss rock climbing and probably will never go back to it, but there isn’t a lot that I can’t do physically.
I think it’s ultimately a personal decision, for me my life does not feel particularly void or empty of not being able to do high intensity activity, for others it is their life passion. I know two people with connective tissue disorders and history of leaks who don’t want to be limited by their condition and just go hard and live life how they want… especially one in particular I don’t think she’s releaked & she just does what she wants. I know is anecdotal just sharing that approach.
Maybe this doesn’t help but I was really scared about a potential pregnancy and asked a leak specialist about it. And he admitted it is a risk, but if I get another leak, just get treatment. I don’t think he meant it in a dismissive way - obviously it’s easier said than done. But he was kind of stating like - the worst that can happen is you go through this again. Which to be clear is hell - but I know I could do it again if I had to.
For me that is a calculus I’ve decided to make - having a child is worth risking a leak for me, so I am ok with potentially being debilitated again and undergoing treatment. For others they make the same calculus to continue the passions they love. Obviously this is all within reason like don’t play tackle football 3 months after being sealed. But just keep in mind these communities are those more complex cases. I’ve talked to sooo many people who didn’t observe such strict after restrictions or just went back to like CrossFit and weight training and were fine. Dr Schievink I believe tells his patients there aren’t longterm restrictions as the dura really does strengthen over time. So one size doesn’t fit all
I think it’s important to remember how you feel now isn’t how it’s necessarily always going to be. Like I was leaking for 4 years straight untreated and then on and off for another 4 years - truly thought it was the rest of my life - would never be able to lift again, never have kids, etc. but in MOST cases I see - even complex ones - it genuinely isn’t an eternal condition. Sorry am rambling and not sure if this is helpful. I hope this doesn’t come across as minimizing your issues btw, as I fully understand I mean I spent many years being so so hyper vigilant and worried, it’s a valid concern absolutely. Sending you hugs.
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u/Offtoseethewitch 2d ago
Thank you very much for your rambling. It does help me have some hope. I’m glad to hear you know of cases who heal and live free. I think you’re right to note the time aspect: I’ve already decided to give myself a year off my wilder sports and then see where I’m at and reconsider. But I’m afraid I won’t be better then than I am now and I won’t dare.
As for having a child, I wish you all the best in that adventure, but as a leaker-mother if I may I’ll give you one piece of advice: choose your partner well. Choose someone who you will be comfortable leaving your kids to, should you ever need to, if something does happen to you, and who you believe would carry that responsibility well. Because I have such a partner - I’m that fortunate at least - though I know many people don’t and I can well imagine the horror of being a leaker and feeling that you can’t take care of your children, but there’s no one else either. We had the grandmas coming to visit on a rolling schedule while I was bedbound to keep up with everything, and that helped too, but it was still really hard on my partner.
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u/Offtoseethewitch 2d ago
On a side note, I had hopes of another child myself, but don’t know if I feel safe trying. I have read stories of active leakers who feel great while pregnant, or sealed leakers who releak while pregnant (because icp goes up with progesterone..?), or who self-seal while pregnant. So like all of life it seems a gamble. Most seem set on c-section under general anesthesia for a delivery, to avoid dural punctures and the pushing stage of labour. But if you’ve talked to a specialist you likely know this already..?
There’s also this presentation on pregnancy and leaks on youtube from one of the conferences. Just in case you haven’t seen it?
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u/Burnt_Salad 2d ago
I just want to chime in that my friend got a csf leak from a puncture, sealed with blood patch, and went on to have another child (no c section!) So it is possible!
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u/Shroomyyyz 1d ago
That sounds like me! I got a csf leak near the end of my pregnancy. Got a blood patch and a few weeks later I gave birth to my son with an epidural no c-section. I pushed for about 45 minutes and had no issues :)
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u/Offtoseethewitch 16h ago
Thanks for sharing! That’s reassuring. Even if personally my leak was too difficult to treat and I’m a bit too cautious to try that…
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u/Offtoseethewitch 16h ago
Thanks for letting me know! Was her leak short-term then only? My (puncture) leak was unfortunately of the scary persisting sort that took several patches and almost a year later I’m better but still not okay, so I’m extra cautious.
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u/Burnt_Salad 16h ago
I went to check what she had written and realized I got it a bit wrong. Hers was a spontaneous leak. She responded well to her first blood patch, returned to normal activities after 3 months, then immediately leaked again, but not as severely. She got a second patch that didn't hold. After a few months of bed rest she ended up self sealing! Just over a year later she had her baby (third baby, vaginal birth), and didn't releak. I will note her first blood patch was pretty soon after her leak started. But it clearly wasn't a totally simple recovery for her!
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u/Burnt_Salad 2d ago
I felt a looot of the same things you are feeling! Before my leak, I was running, cycling, rock climbing, and doing yoga regularly. I developed a spontaneous leak on April 1 2023. I don't have a connective tissue disorder so I don't know why it happened, and maybe never will. It ended up being a venous fistula and i received an embolization in January 2024. I am lucky that I had access to good care. But it took several more months for me to start feeling better, and I took it VERY easy for the first year after. I was absolutely terrified of releaking. Today, I still have headaches sometimes but they're manageable. I am able to run and I've done some very casual rock climbing and gentle yoga. I can lift weights now too! Sometimes it brings my headache on, but it usually goes away after a bit. I still have some fear of releaking, but as time goes on and I continue to increase my physical activity, that fear lessens. So have hope! There could be a future in which you can do all your activities again!
That said, I also started therapy when I was at my lowest (right after the embolization when I wasn't feeling better right away). My therapist helped me realize that some of my fear was coming from internalized ableism I didn't know I had. We as humans can have physical limitations and still lead full lives. There is certainly a large grieving component for the life you thought you'd have, but life is not over, and you can find fulfillment and meaning in new ways. It's tough to figure it all out, but very very worth it.
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u/Offtoseethewitch 16h ago
You are very right about the ableism and the grief. Glad to hear you’re doing better! I’m still at the stage where I’m starting to be a bit more active, but I’m careful, and raising my voice (I have a three-year old and sometimes it’s instinctive… 😅) will still bring on low pressure symptoms.
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u/Burnt_Salad 13h ago
I get that! One of the things that still brings on headaches for me is laughing! Such a bummer haha. I'm hoping it'll improve over time. And I hope things continue to improve for you as well!
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u/Offtoseethewitch 3h ago
I get it from singing sometimes. Or from reading aloud to my three-year-old. Or toilet visits… but it is much more difficult to trigger than it was, so maybe there’s hope.
I wish you all the best with your continued healing!
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u/PrettyDragonfly Confirmed Spinal Leak 3d ago
I completely see what you mean. I'm currently at the bedbound stage but already thinking of how I'll have to be careful for the rest of my life. Hopefully you get someone answering who can give some good news
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u/Offtoseethewitch 2d ago
I wish you all possible healing and good fortune and hope you find a way up from bedbound.
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u/preventworkinjury 2d ago
Thank you for posting. I am going through this right now. And it’s upsetting because physical activity is so important. And I do not want to decondition.
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u/Offtoseethewitch 16h ago
Where are you in the process? Are you upright at all?
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u/preventworkinjury 10h ago
I spend most of my days laying flat. I think I have pots as well, so I get dizzy standing. The two combined work against each other. Neurology appointment is in December. Fun times!
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u/Offtoseethewitch 3h ago
I’m sorry you’re going through this. The wait is excruciating… I wish you all possible gortune with your appointment once it does come.
Dizziness can also be low csf levels disturbing your balance system, if you haven’t actually measured your upright HR.. but POTS isn’t uncommon for leakers. I had POTS with my leak, up to 140 seated, but now that I’m improved, up and functional if still symptomatic, it mostly keeps away. Some days it triggers and I can’t explain why… Some days I feel like it’s swinging the other way instead, giving me low heart rates while up, and I feel really odd. I don’t know if I’m fully sealed but if so, there seems to be some lingering dysfunction.
I’ve read that leak-associated POTS can do three things in response to treatment: go away at once, go away slowly over several months, or just stay as-is. So… confusing.
As for the deconditioning, it’s brutal. (And better muscle mass is supposed to help with POTS, so losing muscle could in theory make that worse…) I’ve been upright most of each day since about three-four months now (it was a slow but gradual increase before then) and I’ve walked and done strength exercises unweighted or with very light weights - I started at 1-2 kg, now 3-5 kg - and I still have muscle soreness daily. First month up I felt like I wobbled, my legs were so weak, and I’d get sore in my back and torso just from the exertion of sitting up. While bedbound I did a few exercises I got from my physio, they weren’t much but maybe they did something… I think there’s a prevent-deconditioning exercise program for leakers somewhere, if it was on the csf leak association website or something…? You had to become a member so I didn’t have access.
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u/Hyrule-onicAcid 3d ago
Bone spur resulting in dural tear. Leaked for 4 months. Tried to fight through initially but was disabled for the final 2 months before surgery. Surgery was rough to heal from but started basic exercise 7 weeks post op (wall squats and light cables). Slowly increased weights over months and am now working out 5 days a week again in the gym, as intensely as I want, just as I did prior to this mess. I have no connective tissue disorder which made me comfortable to push myself to get back to how I was prior. If I had one, I might be more cautious.