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mamerth
06-15-2012, 05:34 PM
I have had lots of pain since doing pulmonary rehab. My knees are swollen and ankles are crackling. My shoulds also hurt occassionally. Today I am in horrible nerve pain in my hip (nerve pain all down my leg and into my foot). I talked to the therapist about the pain and swelling. I even talked with my CF nurse...
I feel like they are pushing me too hard and it is doing damage to my joints. No one seems to care.
Today they said they were going to ease up the intensity of the session. An hour later my leg hurt and the nerve pain set in. They had me do certain exercises and I got concerned because I know my bad hip doesn't normally bend that way. She ignored me and I had to continue.
I can't feel hip foot due to the nerve pain. The therapist did tape both of my knees.... they are swollen.
I have company coming this weekend. I am having a hard time dealing with the leg nerve pain and my knees are still hurting me. An Advil diddn't even touch the pain.

imported_Momto2
06-15-2012, 08:36 PM
I have no advice, I'm sorry. I wish I could help, it sounds just plain horrible. Do you have access to some stronger pain killers? Can you contact your doc? Would water therapy be easier on your joints?? Hang in there, I know how exhausting constant and unrelenting pain can be. *HUG*

Havoc
06-15-2012, 09:28 PM
I think the water therapy is a good suggestion.

JustDucky
06-16-2012, 12:25 PM
I agree with Jonathan, Hydrotherapy sounds like it would be less intense on your joints. Years ago, I went through hydrotherapy because my joints would just dislocate with anything aggressive, but I needed the range of motion and so this was prescribed. I loved it, I got a decent workout without the horrible after effects of traditional rehab.
It sounds like they should listen to you regarding range of motion, you know your body. Years ago, a therapist dislocated my knee (I have Ehlers-Danlos, this happens easily) by pushing it too far, despite my protesting that it just wasn't going to bend that way he wanted it to without causing problems. After that incident, if I said stop, they stopped but it shouldn't take an injury to make them listen!

Good luck, I hope you feel better and that some compromises can be made to make it more bearable for you.

Jenn 40 wCF

mamerth
06-16-2012, 01:44 PM
Water therapy sounds wonderful.

I soaked it in the tub yesterday to help with the joint pain.

My knees are still swollen today but the nerve pain has eased some.

I wish they would listen to me. They all SEEM to know much more than me even though this is MY body.

Jenn, I did the same thing yesterday when she wanted me to bend my leg towards my bum. I told them it is going to hurt and that I my leg doesn't bend that way due to my hips socket being so shallow. I could feel things slipping and tweaking while she was pushing on my leg. She bent it and now I am paying for it. Luckily I have a bit more feeling in my leg today.... yesterday afternoon I had almost no feeling in my foot.

I told my CF docs that I will do one more session of rehab and then I will continue things at home... walking and such.

I will be REALLY angry if I have been put through all of this pain and suffering and my lung function hasn't budged. I agreed to do rehab for my lungs and my heart NOT for my joints. I can't imagine the lecture I will get from my orthopedic surgeon when he hears its not only my hip now but my knees as well. I will likely need my knees replaced now as well. **To my knowledge they never consulted with him before creating this program for me**

Havoc
06-16-2012, 03:58 PM
Yeah, see if they will let you do pool therapy. You can't continue to destroy your joints. I just spent almost 2 hours in the pool and I feel great.

beleache
06-17-2012, 09:51 AM
Hey Carrie,
I am really surprised that they are pushing you like that ! Im w/ everyone else, maybe hydrotherapy will be good for you... Also, can you take an anti inflammatory before your session ?? Hope you get it worked out..
<3 joni

nocode
06-19-2012, 06:22 PM
Hi,
Sorry this is not going to address your problem directly, but at least you are getting some work done. I was all excited about pulmonary rehab, but all they did was teach me a breathing technique and sent me home for me to practice by myself!
Then she called the other day to check on me, I told her I was applying it and she said "Ah good, our work is done then." And that was it! Terrible.