Stretching Translated as Pain

    • July 23, 2016 at 11:01 pm

      Hi, I’m Jamie and in my fifth month of being diagnosed with GBS. PT and OT has been working with me, but I can only bend my arm 90 degrees before it starts feeling extremely painful, like my arm is being broken into two pieces. The same hypersensitivity with pain is experienced when my legs are stretched. The PT can feel that my muscles are still able to take more stretching, but my brain screams, “no, it’s too painful!”. Has anyone else experienced this and did that feeling ever subside? Were there any treatments that helped?

    • GH
      July 24, 2016 at 1:06 am

      Yes, I had severe pain in my limbs when my neuropathy was active. As I began recovery, the pain gradually lessened. Stretching regimens should not be done when you are in decline, because they are pointless then, but are an important part of rehabilitation when you enter the recovery phase. This cannot be rushed. The key is having an expert PT who can tell when the optimal amount of stretching is reached. This will entail some pain, but it should not be so much that it is unbearable. Ideally, it can be held and tolerated for a minute or so, and repeated daily. If there is no pain there is no stretching, so no gain.

      The patient can work with the PT to tell her when a little more displacement can be tolerated. Ideally, the stretching should be enough to make both patient and PT happy with the progress.

      Unfortunately, there are some PTs who are insensitive to the pain problem who will try to stretch a muscle too far. This can be very painful. I hope you don’t get such a PT. A good one brings the limb into position slowly and stops near the optimal point.

    • July 24, 2016 at 6:40 am

      Here’s something I found comforting early on (I wasn’t alone in how I felt) and I hope it helps you. When I first was able to use a walker I would get up after sitting a awhile and those first couple of steps were awful. The feeling was like my calves were going to tear. Well they never did. And pretty soon that went completely away. Hope you find this helpful.


    • August 12, 2016 at 4:37 pm

      Thank you for your input, GH and Eric! I’m lucky that I have a great team of PTs and OTs who understand my limits and take things slowly. I will keep what you said in mind for when I start walking again, Eric! How long did it take you to recover? It’s been 6 months and I still haven’t regained movement in my legs or feet. I’ll be receiving monthly treatments of IVIG since it seems to be helping now.

    • August 15, 2016 at 10:42 am

      Here’s my timeline as I recall.

      10/15/12 – Went to hospital slurring my words. Otherwise,felt okay.
      10/16/12 – Coma begins. I think they added the vent then.
      12/10/12 – Wake up. Not exactly sure of the date. Pretty close since it didn’t seem that long before they shipped me to rehab hospital.
      12/19/12 – Arrived at rehab hospital. At this point the only movement I had was being able to touch my right ear with my index finger. My left wrist was limp and my right foot was dropped.
      1/24/13 – Went home. I was able to go maybe 50 steps using a walker. I needed assistance to get up to use the walker. I used a fork with extensions.
      1/29/13 – Started out-patient OT and PT.
      2/15/13 – Graduated from the wheelchair. Was able to get up on my own to use the walker.
      4/15/13 – Graduated from walker. Had an ankle brace on my left leg, a brace from my knee to my ankle on my right foot, and used a cane with 4 legs.
      4/19/13 – Had first movement of the wrist. 3 days later my OT measured it a 19 degrees. Not much but a major highlight.
      5/31/12 – Finished OT. I am still doing at least half of the exercises daily. My left wrist works fine but it still is not as strong as the right one. Also, on this date I started water therapy.
      7/31/2 – Finished PT. I was able to walk unassisted though with a noticeable limp.
      12/15/15 – Started balance therapy. As far as I understand, the muscles we develop as we learn to walk (and before that) as a child lose their tone after all that time I was not able to walk. With the daily exercises I was given from the PT, my balance has improved dramatically. Now I can just get stand up without feeling I might fall. As an extra benefit my PT corrected the way I relearned to walk. My right foot is now doing heel to toe. I was walking flatfooted so as not to fall. That style is no longer necessary.
      8/15/16 – Currently, my arms from my shoulders to my wrist work fine but always feel a bit stiff. Sort of like waking up and needing to loosen up. I don’t have all the feeling back in my fingers but I can now do normal buttons but don’t ask me to pick up a penny from a table. As I mentioned before my left wrist works fine but is slightly weaker. My right leg from my knee to my ankle aches a bit all the time especially at night. Most of the time I can ignore it. I do lose a couple of nights sleep each month. My right ankle is somewhat diminished but considering it didn’t work at all I’m quite pleased with its progress. And as all of use know, we learn to live with uncomfortable feet. I assume my are no better or worse than the rest of us.

      I hope you find this helpful.