Source
r/cfs•
ScienceIsMetal

Any tips for approaching physical therapy without crashing?

Hey Fatigued Friends,

TL;DR: Do you have any tips for getting back into physical therapy for an injury that needs it, but not over-doing it to bring on a crash? How best to talk to your Physical Therapist about your condition?

Background if you want it: I've had mild-moderate CFS for 3.5 years, and was diagnosed at the Stanford clinic last July. I go through periods of crashing for a few months, being 80% of old normal for a few months and working too hard to make up lost time, and crashing again for a few months.

I took a fall while hunting mushrooms for the class I was a TA for, and hurt my shoulder and broke my leg really thoroughly in November of 2016, and had to have 2 plates and 13 screws put in my ankle. All the laying around and not working was good for me and I came out of a crash while still mostly immobile. When I started physical therapy last year I made pretty fast progress and had almost 100% of my flexibility back when a specific day in PT triggered a crash, along with some nerve pain that's only slowly gotten better over the last year.

My CFS doctor reckons the chronic mono (cytomegalovirus for me) is behind the chronic pain, though the orthopedist reckons the screws irritated a nerve bundle. They took the hardware out last summer but it still hurts a lot.

Last week while simply walking I sprained my ankle (or jankle, as I call it now), and the x-ray showed I have bone spurs in two places, likely caused by inflammation in ligaments that are pulling on the bone. The MRI tomorrow will show more, and meanwhile the Urgent Care doctors at my university recommended physical therapy.

But I'm terrified to go back to physical therapy. The crash it caused was the worst one I've had yet, and I doubt I can find a physical therapist with ME/CFS experience. My crashes are getting longer. I'm just coming out of another crash that started in September and I love being able to think clearly and work on my PhD half time and I'm very hesitant to risk that, but clearly my leg needs more work to be stable and healthy.

Should I just do the exercises on my own so I don't get pushed too far? I wear a heart rate monitor now and am much better about not over-exerting myself.

Or, should I try to convince a Physical Therapist that my energy varies wildly from day to day, and be firm about my limits?

Any and all advice would be much welcome!

Posted Mar 8, 2018, 8:52 PM UTC

93
situation-normal•

Be firm but schedule appointments a couple of weeks apart to be safe. Do your assigned exercises at your own pace in between.

ask to speak to different physios in the practice and go with the one you feel most comfortable with. Same if you get any "pretreatment" like heat or manual manipulation, make sure that who ever is doing that is also approved by you in advance.

Wear your monitor and make PT aware of it and your safe range.

I don't have a CFS diagnosis but this has helped with my chronic pain and associated energy deficits when going to pt.

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[deleted]•

[deleted]

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Alutus31/M/UK Long-term cabbage•

I had physio to fix a muscle imbalance in my legs adding to my chronic pain. If you can find a physio specialised in pain treatment or a clinician that isn't specialising in standard sport related injuries, they should be able to accomodate you with very low impact exercises etc.

Also, stick to your guns and be clear about what you think you can, cannot manage. Tell them you want to work out your baseline and go from there etc.

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TheSoberCannibalBroken down firefighter•

Since being sick for injury recovery and pain management I prefer massage therapy if that's an option for your injury. Thai massage could be a good option because it's a lot of normal stretches that healthy people do, but the PT is holding you through the positions. It's much less taxing.

I'm a patient at Stanford too. If you're in the Bay Area, I have a place in Santa Cruz I really recommend. They have helped me a ton and are super understanding about my condition.

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