Broken Ankle

    • Flossie
      August 27, 2010 at 7:22 pm

      Just some quick questions I’m asking on behalf of my physical therapist.

      1. Have you broken bones since you got CIDP?

      2. Do you blame your CIDP?

      3. Were you happy with your physical therapy?

      I fell in July and broke my ankle and fibula – I now have pins and a plate in my leg and very interesting x rays. Since I tripped over nothing I very much blame my CIDP for having to spend the summer in a wheelchair. I have been very proactive about mentioning my CIDP to my orthopedist and the physical therapy team. (I also took in printed information to be placed in my file.) I am very happy with my medical care and feel my therapy has been adapted to my neuropathy.

      I did take a week off in the middle of my physical therapy program to take 5 day course of Gammunex IVIG. Wow. It made a wonderful difference! The therapists even said how much better I looked and moved.

      Obviously this is not how I planned to spend the summer. But at least I can get a little education about CIDP and GBS into the medical community.

      Thanks for responding to the questions,
      Flossie

    • Anonymous
      August 27, 2010 at 9:49 pm

      Honestly, it’s awkward at any time, but worse somehow in the summer!
      Finding good PT is getting harder and harder to do. I went to OK therapists after I got out of ‘rehab’ but they weren’t great! Neither rehab nor the outpatient PT’s had a clue! Almost had to ‘educate’ them to treat you. Strangely, I’d found a while ago, some therapists who’d worked with disabled Veterans and they were honestly the best and most curious about how my nerve and muscle problems were affected by the meds and the exhaustion. I hope that helps.

      To be more honest? The IVIG was and has been the best part of any other things that have happened to me. W/my leg and the all the pins+rods, etc. and four other surgeries for small and big medical issues[over 5+ years], I think the IVIG has helped me to heal from those w/little or no complications. Just, if you can [?], wait 7-10 days after an infusion before any planned surgeries.
      Good luck to you and… may you walk well and soon! Remember to do even the exercises you HATE to do? Those are likely the ones you need most to do. HUGS!

    • Anonymous
      August 28, 2010 at 9:17 am

      Hi Flossie,
      1. YES, small fractures, twice with the foot and once with the little finger.
      2. YES, my falls did happen because of CIDP. One sprained ankle (did that three times as well as fractures) was STUPID RELATED RATHER THEN SYNDROME RELATED.
      3. I benefit from PT, but not all PT clinics are able to work with you one on one and not all have the things that benefit me. I went to one really great PT clinic.

    • Anonymous
      August 28, 2010 at 9:43 am

      Broke my elbow from a fall. Darn leg stopped working I did not concentrate and I fell on a concrete patio. Dislocated my shoulder as I started to fall down a set of stairs. That was at the beginning when the disease was first hitting me and I had no clue what was going on. Since my last break minor falls scrapes and cuts. All part of our journey and me bienf
      G too stubborn to use my canes all the time. Bottoms up so too speak

    • Flossie
      August 28, 2010 at 8:13 pm

      Thanks for the responses. It is not surprising that the PT people are unfamiliar with CIDP since even neurologists see so few of us.

      The magazine I. G. Living has an article on Exercises for CIDP in the August 2010 issue. Go to IGLiving.com and sign up to read it for free. This is one of the printouts I took to be placed in my file. My therapists were glad to read something written by one of their own rather than relying on my subjective opinions.

      I am being very compliant about doing my PT at home. However I am also trying to stop exercising before I push too far. There have been days when I realize I am trying too hard – I am just flattened by exhaustion. Sigh. Sometimes I think my CIDP has affected my common sense.

      Throughout the past ten years I have been remarkably lucky with all my health team. I am really grateful that the PT folks have been professional and sensitive to my neuropathy. Please let me know if you have specific recommendations for physical therapists. I am being treated in a clinic that is attached to a teaching hospital so your suggestions will go to more than just my therapists.

      Thanks,
      Flossie

    • Anonymous
      September 1, 2010 at 12:48 am

      Flossie,

      Does prednisone affect bone density?

      Dick S

    • Flossie
      September 1, 2010 at 11:58 am

      Dick,

      Prednisone does very much affect bone strength. I have been taking a “low dose” for ten years; I combat the side effects with nutritional supplements, exercise and osteoporosis medication. And I still broke my ankle just walking to the mailbox. Sigh.

      Here is a terrific site about prednisone side effects AND how to control them.
      [url]http://www.gihealth.com/html/education/drugs/prednisone.html[/url]

      Flossie

    • Anonymous
      September 1, 2010 at 7:12 pm

      Web up the concerning ‘Prednisone + Prescribing information’ and You will find that: Osteoporosis is common.
      You can fight it to a degree w/Calcium + Vit D + Magnesium supplements [you need all 3 for asorbtion] But it depends on where you are in the ‘osteo’ process. You win in one quarter? You pay in another. Is it worth it? Only you can decide. And? Afford. It is also common for pain meds that are anti-seizure meds such as neurontin.

      Flossie? I liked the IGLiving exercises? But, there are many more steps we can take PAST these beginner’s steps. Don’t know about you? But I’d love to see more advanced exercises and stretches and strengtheners as well. Taking us up to that NEXT level to independence! I don’t know about you? But, my goal is to start to ‘pretend’ I’m walking ‘normally’..,.whatever that is.
      You have to ‘go’ with the programs available to you for now? But I know I’m gonna go and find other [better] sources for future PT when I mite need them!

      Any exercises are better than NO exercises! So do what you can and do what feels good and right. If something makes you go UH-OH! Don’t persue it w/o good professional guidance. That’s because things such as spinal problems could prevent you from doing some things, but, there are always others to do! Keep trying and as long as you don’t hurt yourself? You’ll be better and stronger for it!
      Walking is good! Walking w/o Walkers is Better! Walking somewhat stablely is better yet! It MEANS: FREEDOM! Keep up all and any good work! 😉