I went to the doctor for this and was told I had the shingles. He didn't test me b/c he said the test would just show chickenpox. He diagnosed me by looking at rash and the pain I said I was having. Seemed to get better after meds. and all places went away except for the first place I had. Later the pain started again. its like regular pain, then like being stung and some itching. Another doctor told me that I might need to stay on a certain med. all the time. Before I ever saw a rash I started out with my legs hurting really bad, pain in my neck and shoulders and pain above by butt. Arms felt like I had a sun burn but had not been in the sun. I have fair skin and I have always broken out on my face and chest when getting upset or trying to hold stool until I could get to a bathroom. I did start taking the med. she said once a day but this has started again and now on my left shoulder. started wandering if it could be something else. With fibromalgy there is not rash. looked up lupus. looks like that could be it. thought I would see if any of you have experienced this and what you found out so I would know what I should do from here. I THINK I have seen some of you post about having lupus. I do have a first cousin that has it and I think she was affected on her skin and later her organs. Also think another first cousin has been affected in organs. not sure if that would make me mor out to to having it. I know I could hurt all over from pouchitis which I have frequently or being dehydrated can make you hurt all over but then I have the rash. I look forward to hearing from some of you. Thanks in advance!

If you have lupus you would have an elevated ANA level (in most cases). Seems worth testing for the shingles, even if it did come up positive for chicken pox (same virus). Shingles is more common than lupus, for sure. It can be very painful and long lasting. The virus takes up residence in the nerves and can lead to long term neuralgia.
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001861/

Lupus is more difficult to diagnose and is a more devastating disease, as it can cause life threatening complications in vital organs.
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001471/

Jan

kk,

I'm sorry you are in such pain. Both of my parents have had shingles and it can come and go and really is painful. My dad still feels it at times.

I have fibromyalgia on top of all of this so I recently paid for the shingles vaccination. My insurance company won't pay for it until I'm 60 so I paid for it myself. $225 is worth it for peace of mind.

I know this doesn't help you as you already have it. My internist said you can get it at any age - if you've had chicken pox - and my daughter had a bout with it when she was 12.

I hope they figure out what is causing all of your pain and rashes and that you are feeling better soon.

I WISH I could get the shingles vaccine! I can't have it because I am on the anti-TNF, Simponi, similar to Humira or Remicade. The shingles vaccine is live virus, so contraindicated if you are on any of the biologics.

By the way, I forgot to mention; the shingles rashes look quite different than lupus rashes. Shingles is more similar to the chicken pox type blisters and scabs http://www.cdc.gov/shingles/about/symptoms.html
while lupus tends to be more of a flat, reddened area.

Jan

Picture of shingles rash:

http://en.wikipedia.org/wiki/F...rpes_zoster_neck.png

thanks for the replies. I have looked at the rashes for both shingles/lupus. doctor that diagnosed it as shingles looked at the rash. Unfortunately what I seem to have looks more like lupus. I hope I am wrong because I know lupus is more serious. I was told I can get the shot for shingles a year after outbreak so I was hoping not to have anymore. I will not go through the details but I have things I deal with that might cause it to surface often.Other than what I already deal with having the j-pouch. I know it does not cause it but can bring it on. I realize it is still the virus from having the chicken pox.

Weakened immune systoms are subject to shingles per Jan's link above. DB's link shows what it looks like and the person in the picture looks a lot younger than 60, the age when insurance pays for the vaccination.

kk- Please let us know how you are doing.

the general doctor put me on acyclovir (zovira)
once a day. she said some people with shingles stay on it all the time b/c they have so much problems with it. the GI doctor I saw last for the first time does not consider I have a weak immune system b/c the surgery or meds I am on does not make it true. I thought going to the bathroom as much as I do and not getting much sleep makes it apply to me. the general doctor thinks so. I have found over the years that you can go to several doctor for the exact same problem and get different answers. VERY FRUSTRATING!

Jan (or anyone) - if one has never had chicken pox (even after being exposed to it), would it be advisable to get the shingles vaccine? I'm assuming I have some sort of immunity to it [she says not speaking out loud so as not to jinx herself]. As-a-matter-of-fact, I haven't had any of the other usual childhood diseases either (mumps, measles). And I don't get poison oak (I don't know about poison ivy because I'm on this coast).

kathy

Sure, you do not have to have ever had chicken pox. There is an assumption that you have contracted the virus whether you remember it or not by the time you are 40 (you can have the virus without getting a breakout- and of course, you could have had it prior to your memory- say before you were 2). My older son had a single lesion when he had it. I also do not recall ever having chicken pox, but I have obviously been exposed to other children and my own.

The vaccine is approved for over 50 years old, but not recommended until you are 60. You should not get the vaccine if you are allergic to neomycin or immune compromised (on steroids or other immune suppressing drugs- remember: live virus vaccine).

http://www.cdc.gov/vaccines/vp...know.htm#get-vaccine

Jan

kk - Neither of my parents had compromised immune systems. My dad's was clearly due to the stress of be my step-mother's caretaker during the final year of her life at home.

My mother's was related to big stress caused in her business.

I am glad that they don't think it's lupus. Hopefully you can get some more rest. Thanks for the update.

I'm on an Advair Inhaler for asthma and I believe it has steroids in it. Would that be considered as steroids and therefore not recommended for a shingles shot?

Not sure about that. You'd have to ask your doctor about it. The recommendation is for those taking high dose steroids, but I am not sure about long term low dose steroids (which I presume Advair would be considered).

I certainly would not get it until that question was answered to your satisfaction!

Jan

My doctor wrote me a prescription for the shingles vac, which I took to Walgreens and got the shot there. I'm assuming you need a prescription for it in every state.