Lupus , scleroderma , connective tissue . talk to me please !

[thefootofourstairs]

Hi ,
I’m hoping someone can tell me I’m just overthinking but I don’t think I am really .
MIL has some connective tissue disorders . She’s talked about her health a lot for years but for the most part dh and myself haven’t really made head nor tail of it all other than she needs lots of medication .
I’m now starting to worry that I should have taken far more notice and that ds1 and dh may also have the same thing .
Ds1 is 24 . He moved away to uni and then got his own place at 18 . He’s never one to talk about health or anything . When he was young he was always having episodes of really bad leg and joint pain . He had nails that always went bluish in the cold , itchy skin and nosebleeds . I had him checked out several times and it came to nothing . We were told growing pains , excema etc . At 18 he started losing his hair . Dh lost his hair at that age too . His mother says it’s from his father ( who he’s never known ) and puts it down to male pattern baldness . Ds1 is now really bald at 24 , has recently told me that his joint pain and aches have never resolved ( I thought it had ) and his nails are pitted , skin is itchy and looks fragile .
He dismisses my suggestion that he go talk to the doctor . I’m worried .

[LollipopLolly]

I have a connective tissue disorder (HMS/EDS).

Complained as a child of leg pains, being cold etc. Most of it was put down to growing pains or that I was just lazy. I would moan at having to walk anywhere - now I know why and that it wasn't all in my head.

I often get dislocations/sublexs. But apart from pain medication, learning how to pace myself there isn't really much that can be done for it. I'm glad I know what it is and i'm not long that lazy person.

[thefootofourstairs]

Hi thanks for replying .
Does it cause any other problems than pain ? Sorry to hear there isn’t much to be done .

[Redannie118]

I have Scleroderma and the two things that presented first were Raynauds and severe reflux, both came a long time before pain or anything else. You mention his skin is fragile- that doesnt sound like scleroderma as the skin thickens, tightens and calicifies( i have large, noticeable callous on my fingers before my diagnosis) If you can coax him, a simple blood test should give you some idea of whats going on. Autoimmunes are not hereditary, but they do tend to cluster in family groups.

[housemdwaswrong]

Hmm. Joint pain could be lupusy but it depends how it presents? Symmetrical or not, which joints, swollen/red/hot, permanent or spasmodic? See if you can find out and post back.

It doesn't sound lupusy that he has done nothing about it. In my experience, doing nothing is not an option, as when it kicks in its impossible to manage... even going to the loo is something I have to do a lot of building up to :) having said that, autoimmune diseases are a bigger for presenting differently.

Hair loss also lupusy, but more in spots like alopecia rather than male pattern baldness.

Raynauds common to a few autoimmune conditions.

A blood test would be the starting point. If it is autoimmune, depending on what it is, organ involvement can be present, and potentially serious. Give his head a wobble and get him checked (that helpful titbit just in case you live on a parallel planet where men actually listen :/).

Autoimmune as pp said do tend to cluster in families. My dad has psoriasis and severe psoriatic arthritis, I have lupus.

Does he have any other symptoms?

[Nat6999]

I have raynauds & Fibromyalgia, the symptoms you describe could suggest those, but there again could be linked to lots of connective tissue disorders. The only way your son will find out is by getting checked out by a rheumatologist.