symptoms?

[Sue R]

my skin is sensitive. in different spots, not always the same place, yesterday it was high on my arm me shirt hurt touching it, today it is a spot on my neck, anyone get this??
also my eye lids hurt, only when i touch them?? anyone have this???
is anyone on a special diet that helps??
i believe i have an absorbtion problem. and irritable bowel syndrom too. i have cramping always. maybe there is a diet that could help?
i found a site that had info but you are all so knowledgable
i thought you would know. thanks and take care

[cinmac]

Hi, I get the sensitive skin.  Sometimes it hurts, sometimes it burns, sometimes it feels like a hornets stinging off and on all over my legs..  My doctor called it allodynia and I think it is neurological in origin.

My eyelids get irritated from blepharitis-inflammation of the glands that produce your eye oil.  I do hot packs twice a day and rub my lash line to push oil out.  I find my eyeballs ache and sometimes really hurt like something sharp is poking in my eye.  My opthamologist said she has has other patients complain of this but there seems to be no obvious medical cause and she cannot explain it.

Sjogren's seems to be related to all sorts of crazy pain stuff-and lots of times the doctors don't know much about it.  I guess it is just part of the package.

Hope this info is helpful to you.  Your situation may be different than mine, but it helps me to know that for whatever reason, other people are are experiencing similar things and I am not crazy after all.  Maybe it will help you too.

Good luck.

[Patze]

Hi Sue,

I had a lot of problems with the skin pain, and for me, it was all over, boy was that a "pain" !  Anyway, I was put on Lyrica, and it's finally quieted down where I can live with it.

Have you mentioned this to your doctor by chance?  If so, what did he have to say about it?

Take care -

Patze

[Sue R]

thanks so much for your imput, yes i am also on lyrica. i was just wondering if anyone else had this too, i have many other issues with other syndroms and things i never know what to think anymore, and thanks for letting me know about your eye issues. i thought it was just me, drs. just kinda look at me when i say things some times, im sure you have all been there. i feel very welcomed here. i just found you all today, know i have so much to say, now that people understand, so again thanks God Bless and take care i'm sure i will be talking to you again soon sue

[cinmac]

Lyrica made my legs twitchy so I couldn't stay on it but I am on pretty high doses of tramadol (Ultram) and it seems to help.  I guess it can contribute to the dryness but it seemed to be a better choice than opiates.  I find that Excedrin works pretty well too.  I use a generic that I get at Walmart so it's pretty cheap and the combnination of aspirin and tylenol seems to work better than either drug alone.

I really hope the Lyrica works for you. I do have one friend who does not have Sjogren's but does have neuralgia and she swears by it.  And please, no matter how crazy a symptom seems do not doubt yourself.  There are many symptoms that are odd and unfortunately there are many doctors who are uninformed.  The best way to advocate for yourself is by knowing that you understand your body better than anyone.  After all, you live in it 

I hope I don't come across as bossy-that is not my intent.  I just know in the beginning when some doctor would tell me that my symptoms were unrelated I would back down and a lot of stuff just went untreated and I suffered for it.  Now I know that I feel like I feel and I'm much more comfortable holding my ground.   It took me ten years to find my voice and I truly wish I hadn't lost that time by deferring to people who for some reason I thought knew more about me than me.  That was a very convoluted sentence so I hope it made sense.

Have a good night and thank you for sharing your thoughts.

 

[jonnell]

Hi Sue my 4 year old has sjs and she has sensitive skin to.  She says it hurts and burns when I get her dressed.  Also her scalp is very sensitive when I try to wash or brush her hair she cries. 

[Cricket]

Jonnell

I am so sorry to hear your little girl has this.  It is bad enough when we get it as adults, but it breaks my heart to hear of a child.  It must be such a heartbreaker for you also.  Not much advice I can give except to say I will pray for your little one.

Cricket

[jonnell]

Cricket thank you they just started her on Plaquenil so I hope she can get some relief.