CF and Ehlers Danlos Syndrome anyone?

[Beccamom]

I have seen many posts regarding unexplianed (CF-related) joint pain. As some of you know my 12 year old has remaned in Cf diagnostic limbo for over a year now. Meanwhile, she was was recently diagnosed with Ehlers Dianlos Syndrome-Hypermobile Type III. This does not explain her lung symptoms, but it does explain her joint pain, GERD, gastorparethesis. It is a connective tissue disease that in type III causes hyper-mobile joints. It causes chronic joint pain. It is an autoimmune disease.
For my daughter her joints hurt much worse during and after an illness. The physical therapist thinks that because her joints are hypermobile her tendons etc. are stretched out and when she is sick her muscle weekness leads to more joint stretching since the muscles are what hold the joints in place for the most part with EDS. During illness the muscles cannot handle the extra energy demand placed on them. This also leads to fatigue.
For those of you with unexplained joint pain you may be interested in looking into EDS.
Does anyone else have the EDS diagnosis?

 

[Beccamom]

I have seen many posts regarding unexplianed (CF-related) joint pain. As some of you know my 12 year old has remaned in Cf diagnostic limbo for over a year now. Meanwhile, she was was recently diagnosed with Ehlers Dianlos Syndrome-Hypermobile Type III. This does not explain her lung symptoms, but it does explain her joint pain, GERD, gastorparethesis. It is a connective tissue disease that in type III causes hyper-mobile joints. It causes chronic joint pain. It is an autoimmune disease.
For my daughter her joints hurt much worse during and after an illness. The physical therapist thinks that because her joints are hypermobile her tendons etc. are stretched out and when she is sick her muscle weekness leads to more joint stretching since the muscles are what hold the joints in place for the most part with EDS. During illness the muscles cannot handle the extra energy demand placed on them. This also leads to fatigue.
For those of you with unexplained joint pain you may be interested in looking into EDS.
Does anyone else have the EDS diagnosis?

 

[Melissa75]

JustDucky has EDS. I'm sorry you have this dx for your daughter, though I'm sure to a degree some answers and explanations are a relief. Hopefully she'll see your post or you can PM her, and she can share her experience with you. Hugs to you and your daughter.

 

[Melissa75]

JustDucky has EDS. I'm sorry you have this dx for your daughter, though I'm sure to a degree some answers and explanations are a relief. Hopefully she'll see your post or you can PM her, and she can share her experience with you. Hugs to you and your daughter.

 

[JustDucky]

I PM'd you....I am so sorry that your daughter has this as well as CF issues, pain control becomes that much harder when you have two problems that can cause serious pain. GERD is huge with EDS as well as with CF, I have severe reflux disease because of having both of these disorders. As I have said in other posts, the pain issue gets much worse with an infection, my pulmo thinks it is because it is an inflammatory response and the body targets the joints causing them to become even more tender and sore than usual. I use motrin quite a bit when this happens along with narcotics because that is the only thing that seems to put a dent in my pain. As you mentioned as well, fatigue is also a problem with EDS...and CF, so resting often is important.

Very interesting theory that her PT has and it makes sense, I think that along with the infectious process certainly would increase the pain. Taking really hot showers also seems to help.
It's good that your daughter is in PT, she will be given exercises to help tighten the muscles around her big joints to help with the slipping and stretching of ligaments. She may need splints if slipping is an issue with her wrists or ankles (my ankles love to slip, also the joints in my wrist slip as well...opening a jar gets interesting.) I can actually dislocate my wrist joints to get out of hand cuffs...freaks people out <img src="i/expressions/face-icon-small-smile.gif" border="0"> Not advisable though, tell her not to show off her tricks (ie her super bendy joints, doing splits, dislocating shoulders or hips purposely etc) because it will catch up with her and her pain will get much worse as she gets older. She needs to be careful as far as contact sports go if she tends to dislocate easily....I dislocated both of my knees simultaneously while cross country skiing when I was a teen, so that sport was crossed off.

If she has access to a swimming pool, she should swim. It is very easy on the joints and good for the lungs too! Definitely joint friendly <img src="i/expressions/face-icon-small-smile.gif" border="0">

Hang in there,
Jenn 40 w/CF

 

[JustDucky]

I PM'd you....I am so sorry that your daughter has this as well as CF issues, pain control becomes that much harder when you have two problems that can cause serious pain. GERD is huge with EDS as well as with CF, I have severe reflux disease because of having both of these disorders. As I have said in other posts, the pain issue gets much worse with an infection, my pulmo thinks it is because it is an inflammatory response and the body targets the joints causing them to become even more tender and sore than usual. I use motrin quite a bit when this happens along with narcotics because that is the only thing that seems to put a dent in my pain. As you mentioned as well, fatigue is also a problem with EDS...and CF, so resting often is important.

Very interesting theory that her PT has and it makes sense, I think that along with the infectious process certainly would increase the pain. Taking really hot showers also seems to help.
It's good that your daughter is in PT, she will be given exercises to help tighten the muscles around her big joints to help with the slipping and stretching of ligaments. She may need splints if slipping is an issue with her wrists or ankles (my ankles love to slip, also the joints in my wrist slip as well...opening a jar gets interesting.) I can actually dislocate my wrist joints to get out of hand cuffs...freaks people out <img src="i/expressions/face-icon-small-smile.gif" border="0"> Not advisable though, tell her not to show off her tricks (ie her super bendy joints, doing splits, dislocating shoulders or hips purposely etc) because it will catch up with her and her pain will get much worse as she gets older. She needs to be careful as far as contact sports go if she tends to dislocate easily....I dislocated both of my knees simultaneously while cross country skiing when I was a teen, so that sport was crossed off.

If she has access to a swimming pool, she should swim. It is very easy on the joints and good for the lungs too! Definitely joint friendly <img src="i/expressions/face-icon-small-smile.gif" border="0">

Hang in there,
Jenn 40 w/CF