Friday, May 27, 2016

Physical Therapy For Patients with ME/CFS

Copyright: 123RF Stock Photo
First, to clear up any confusion right away, these are NOT guidelines for using physical therapy as a treatment for ME/CFS. For more information on that topic, see my earlier post New ME/CFS Treatment: Manual Physical Therapy which includes details of a specialized form of manual therapy that uses nerve gliding for ME/CFS patients, to reduce pain and improve stamina.

Instead, this post is about guidelines for when someone who has ME/CFS needs physical therapy for another reason - an injury, post-surgery, specific chronic pain, etc. I recently developed some tendinitis in my right shoulder and, when resting it for several months didn't work, my doctor and I decided I needed physical therapy. I was very worried about getting a physical therapist who wouldn't understand about Orthostatic Intolerance (OI) or exercise intolerance, that I might end up working with someone who would push me too hard, resulting in post-exertional crashes.

To prevent that, I wrote up a simple 2-page set of guidelines for physical therapy when the patient has ME/CFS. The owner of our local PT clinic was thrilled with my summary, and each of the several physical therapists I worked with was very grateful and interested in learning about ME/CFS. I was thrilled by their open, welcoming responsiveness! I was just discharged from PT yesterday, and the whole experience was overwhelmingly positive. The owner of the PT office told me he would add my guidelines to their permanent files, where they keep information on various medical conditions that patients might have.

Here is a link to the pdf file of my document: Guidelines for PT for Patients with ME/CFS (I just learned how to link to a pdf file, so please let me know if there is any problem with this link!). Since it is a pdf file, you should be able to print right from this document and have a nicely formatted 2-page document to share with your physical therapist and/or doctor.


7 comments:

  1. Anonymous11:12 AM

    Hi Sue, I wonder if you still use inosine and what do you do to avoid kidney stones. I would like to try it myself but Im a little bit scared of the risk for kidney stones.

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    1. Yes, my son and I do still use inosine - it has helped both of us tremendously to normalize our immune systems, which has greatly reduced crashes & bad days and increased good days. I almost never get a sore throat anymore or aches (unless my yeast overgrowth gets out of control). Also, we rarely crash now when exposed to viruses, which used to be a big problem.

      I've never heard of inosine causing kidney stones and certainly, we've never experienced any problems. Kidney stones are caused by a lack of water and/or acidic pH in the body. My son and I both drink a LOT of water every day (we need to for OI) and eat an alkaline diet. Also, we eat Paleo, and I have been also eating a low-oxalate diet which further decreases risks of kidney stones. So, not a problem. I just looked up "inosine kidney stones" and see that a few people did develop them in an MS study, but it was not a common side effect and they said it cam be avoided by monitoring serum UA levels.

      Sue

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  2. Anonymous12:16 PM

    Thank you Sue, I will try it. Hope I will have the same effect as for you two. Is it this one you use?http://www.iherb.com/Source-Naturals-Inosine-500-mg-60-Tablets/1323

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    1. Yes, it is. Be sure to read my earlier posts in inosine because the dosing is very complicated:

      This is an earlier post, when I used to take the branded version, Imunovir, but we have since found that the inosine supplement works just as well:

      http://livewithcfs.blogspot.com/2014/04/imunovir-update-and-inosine.html

      Sue

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  3. Sue, this is so helpful! Thank you for including the PDF of this for our info. and for our health care professionals' reference. It's always a concern when physical therapy is needed that they will not understand or be sympathetic to our needs. Great job! Also, thank you so much for sharing on Chronic Friday Linkup #19! Pinned/Tweeted/Shared!

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    1. Glad you found it helpful, Kristine - and thanks for the extra promotion!

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  4. Anonymous3:46 PM

    Yes I know about the dosing but thanks anyway.

    ReplyDelete