posted December 27, 2001 07:55 PM               

quote:

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Originally posted by Beth Engerman:
Ihave LI and I am 21 years old. All through high school I have knee problems from 1 meter diving, and elbow problems from softball. I just figured that most of these problems would decrease when I stopped playing sprots. However, that has not been the case. They have dramatically increased. I have been have a great deal of joint pain in both my knees, elbows, and knucles. I thought that at some point in time I saw a post about joint problems being related to ichthyosis. If anyone has any info about this or has experienced anything similar I would love to hear about it.
Thanks
bethE

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posted December 27, 2001 09:57 PM            

This was discussed somewhat on the following thread titled "Other health problems?" in the General Discussion section (same as this one). I posted a great deal on it. I've copied and pasted excerpts from my post regarding joint pain:

"For years doctors were swearing up and down that I had to have arthritis because of my joint pain even though no tests showed it. One day I got lucky, and happened to see a new doctor, a rheumatologist who also happened to have studied a great deal of dermatology. He said that folks who have some sort of disorder that will limit their skin's ability to stretch can have joint problems. This is because the skin will swell, and since it can't go outward too much, it puts pressure inward, thereby causing problems with joints.

"I have had a lot of other health issues. My doctors and I feel that having lamellar ichthyosis 100% over my body keeps my immune system weakened. Because of this, I am very susceptible to illness and get sick often if I don't maintain a very strict regime regarding sleep, exercise and diet. However, I do not take any drugs for my skin and because I've started using a lot of all natural products to care for my skin, my skin, for the first time in my life, looks fantastic."

Beth, feel free to email me if you or your doctor have questions and I can give you the name and number of the rheumatologist I saw, plus my regular physician and dermatologist. so you know, yes I have LI and I'm 29 years old. I still haven't heard of others with LI (that I can recall) that also have joint pain. If you can attend the conference in Seattle (F.I.RS.T. conference) then I'd encourage you to do so. We might meet more people that have experienced the same problem.

As a follow up to that post, I take 400 mg of Celebrex each day. Celebrex is a prescription anti-inflammatory and I have found it very helpful. I have also found that keeping a very regular excercise schedule and not carrying any excess weight in addition to taking the anti-inflammatory helps immensely. The excercise can be a real catch-22 as when I first started exercising, the joints that were hurting hurt worse before they started feeling better. My pet theory is that by building up the muscle tissue around the joint as muc has I can has provided a little "padding" for when the skin swells. Then again it could also be part of that old adage "move it or lose it" in that if you don't work to keep those stiff joints moving, it'll eventually be to painful or stiff to move at all.