Hi:

I am a new member of the list.

I am a 37 year old man. I was diagnosed some 8 years ago with psoriatic
spondyloarthritis for pain in the connective tissue of my fingers/toes, of the
knuckles of my hands and feet, and my wrists; I also have seborrhea, a skin
condition aparently similar to psoriasis. Other doctors have called the pain
fibromyalgia. Recently, though, it has gotten much worse again, making it
difficult to walk or do strong grasping. I have little inflamation as such (only
one "sausage" toe): it is more a matter of pain while moving the joints, putting
weight on them, i. e. using them; i also get shooting pain at times and a
general acheness. I learned that my father is showing similar symptoms and that
he was independently diagnosed with psoriatic spondyloarthritis; he failed to
remember that I had faced this condition for many years already. He has pain in
very similar places, and yet he does have psoriasis and not seborrhea. I am now
looking for an immunologist/rheumatologist to get a "clean" diagnosis (one
uninfluenced by prior accounts), but I feel far more confident that it is in
fact psoriatic psondyloarthritis now due to the likely genetic link. (My
paternal grandmother also has seborrhea.)

I am looking for support groups, online and in my area, to help me deal with
it. (I have had more luck on line than in my area so far.) I find it very
frustrating that the dermatologists deal only with the skin conditions and the
rheumatologists only with the arthritis, since they all seem to be part of the
same disease. (I also read somewhere that my inflammed bowel syndrome is also
related.) I have tried acupuncture and chiropractic work. I practiced chi kung
and tai chi and yoga for many years. I am now trying swimming, since it is
getting to hard to stand for long periods of time. The pain is the hardest to
deal with. I am reluctant to move to more elaborate pain killers, for fear of a
slippery slope, but I now find myself hoping to see the doctor as soon as
possible to get stronger medication.

I feel like I am burdening my wife wiith enormous responsibilities because it
becomes so difficult to move around the house. We now switch tasks: I do the
sitting things, like foolding laundry and getting the kids dressed, while she
does the puting away and getting of things. But there is now too much for her to
do. I get very tired after work (I am an assistant professor of history at a
public university). I get irritable with my children because of the pain and the
fatigue. I am frustrated-and very unhappy- that I cannot play with them. They
are two very energetic kids (1 and 4) who love to climb all over me (and I love
them doing it); but they sometime hurt me as a result and I have to stop.
Sometimes the pain gets too much entirely, wearing me down emotionally, but I do
not want my children or wife to have to deal with the burden on it. Yet they
need or want my attention.

I feel like I am not able to be a good father or a good husband anymore.

I spent many years waiting for the pain to go away, practicing tai chi and chi
kung, getting massages, taking herbs, confident that I could beat it, and waking
up in the morining surprised that it was still there (or worse). Since the
seborrhea is located in relatively invisible places on my body, the disease was
also relatively "invisible", so I am starting to tell more people about it-at
work, among friends- though I feel extremely awkward doing so. But speaking
about it with able-bodied people does not always help. At this stage, I feel
that I would prefer to talk to people who have similar conditions and
circumstances. I am looking for understanding, but also for the kind of advice
that only comes from experience. I hope that this is an appropriate place for
that.

yours

Drew Bergerson