Sorry not been around - Shingles

[wen.uk]

Hi all

I recently sent you a post saying I think my party (good run) was over.  I'll have to keep it short as I can barely see my screen and the pain is excruciating.  After 2 weeks of violent and stabbing pains in my head, and two mis-diagnosis from 2 different gps, at my routine rheumy appt she made an emergency appt with a consultant ophthalmologist who has confirmed I've got shingles in the left side of my face and eye, now coming in my mouth too.  I  can't describe the pain, and the sensation like I've got hyperdermic needles permanently sticking in my face. I'm on antiviral tablets, antibotics, antiviral cream for my face and antiviral eye ointment.  I feel so poorly, and of course absolutely exhausted with it all.  Had shingles before on my back and that was bad enough, but this is absolute torture.  My strong paibnkillers aren't even going near it, I've rang the GP to see if there's anything stronger and anything for my mouth - dry mouth with shingles not the best combination.

Anyone else ever had similar?, how long before it starts to get better, I'm, getting worse with each day and don't know where it will end.

If I sound as though I'm feeling sorry for myself, I am !!!

I'll join you all again when I feel up to it - in the mean time a big welcome to any new members I've not introduced myself to, I'm sure we'll have the pleasure of chatting in the future, and my other friends on here - all take care and keep as well as you can.

Wen x

[wednesday mc haggis]

Hi wen

shingles in the eyes and face , my work collegue had this and she was off work with pain etc, took 4 weeks to feel better, and about 9 weeks to return to work ,  it varies have to say, but your gettign the meds and hopefully it will clear up soon and the pain clears up , thoughts with you

T x

[Epson]

Wow, I never knew you could get shingles in the eye and mouth, I always thought it was only external.  I can't even imagine what that feels like , Can you get a stronger painkiller?

Sure hope you start feeling better soon and can get some relief from the pain, that's just not right!

[Joe S.]

I have not had a flair for some time but the last one left me with a "Harry Potter" scar on my face. I worked very hard to keep it from my eyes. A child in one of my classes had chicken pox and that triggered my flair. I had to cancel my classes and inform all of the schools about the problem. It put a big crimp on my summer that year.

[Scottietottie]

Hi Wen

Wow - I can't even imagine what you're going through. Sounds painful in the extreme. I hope the antivirals work soon and get it calmed down. It's a real shame they didn't get it dxd earlier as anti-virals work better the sooner it's caught.

Sincerely hope you feel better soon.

Take care - Scottie 

[Chana M]

Hi Wen

I'm so sorry to hear about this.  It sounds absolutely awful and no wonder you've been away from the boards.  I've missed you here and in the chat room on Wednesday night. 

You're certainly entitled to feel sorry for yourself.  I do hope you find something that eases the pain even a little bit.  Sounds as though you can't read or watch TV; maybe music or the radio could bring some relief and take you away from it for a while?  Story tapes are great too - old classics, or even children's stories can help the hours roll by while you rest.  I have a pile of good ones so do let me know if you'd like to borrow some and I'll send them to you.  Just message me.

Take care - Chana x

[Dolly Dimples]

 Poor Wen, how awful for you,  i too never imagined that one could get shingles in the mouth!   I get lots of mouth ulcers , which drive one nuts at times, but shingles... Ouch!     pray you get quick relief from this agony... Sympathectically, Dolly

[irish]

wen, I don't mean to scare you but if you are getting worse each day you need to check with your doc. You may need to be admitted to the hospital and treated with IV steroids and antivirals. The shingles can go to the brain and that is not good.

It is amazing that no one thought about shingles as the significant blebs and horrible pain are so typical of shingles. I would not mess around with this and would check with your doc until he gets serious. Keep reminding him that you have autoimmune issues as AI people are really high risk for the shingles. Please let us know how you are doing.

You should also know that shingles needs to be treated within the first couple of days with the steroids and antivirals to really shorten the course of the disease. With your late treatment the course of the disease could be worse and longer that is why I think you should check with the doc. Thank goodness he realized what it was. Sorry to sound like a crabby old lady, but I am truly concerned about you and can only hope that my speaking up with help just a little. Irish

[Katybarstool]

Wen

I'm really sorry that you are so poorly. Shingles are horrible - I've not hd them myself, but have seen relatives with them.  I hope the pain lessens soon and that you are back to your lovely chirpy self.

Kathyx

[Patricia]

Hi all,  I'm scheduled to get a Shingles vaccine shot Friday.  I have SJ and shingles on legs and back.  QUESTION>>>>
has anyone seen benifits from getting the shot?  Or am I wating my time and may make matters worse?

[eyeamdry]

Hi all,  I'm scheduled to get a Shingles vaccine shot Friday.  I have SJ and shingles on legs and back.  QUESTION>>>>
has anyone seen benifits from getting the shot?  Or am I wating my time and may make matters worse?
 

Patricia, I do not think having the shingles vaccine when you have shingles is an option.  Like a flu shot, you can't have it if you're sick with the flu.  Also and more importantly, I was told by my rheumy on my last visit that they do not give the shingles vaccine to people with Sjogrens.  (not sure about other AI)

You need to have a conversation with someone if they told you you could get the shingles vaccine, ESPECIALLY WHEN YOU HAVE SHINGLES!

Wen - I had shingles shortly before I was dx with Sjogrens.  In fact I believe my body was very run down and that's why I got shingles.  I had it on my scalp, face, ear and shoulder.  I had the things you describe, but it did not go in my eyes or mouth.  I was scared because it came over my ear towards my face.  I also took the same meds you did.  My husband had some Percoset from surgery and I took his pills during the night when I had shingles.

I felt really bad for about 2-4 weeks and then got rid of the rash.  Fortunately, I did not have any of the long-time pain, neoropathy from the shingles.  Also listen to what Irish says.  Best of luck, Lucy

[irish]

Pat, What Lucy said is correct. PEOPLE WITH AUTOIMMUNE DISEASES ARE NOT TO GET THE SHINGLES VACCINE---IT IS A LIVE VACCINE AND CAN MAKE US VERY ILL.

Make sure that you talk to your rheumy about this. Most family practitioners are not aware of these type of issues. People with autoimmune diseases are to only get what is called "attenuated" vaccines. In other words they have been treated in such a way that the body still makes an immune response, but the vaccine is dead. Irish

[Bucky]

Wen,

Sorry you are feeling so bad.  Wishing you a speedy recovery.  Rest and take your meds and I hope the pain eases FAST!

Bucky

[Nathan]

Sorry to hear you're having it so rough Wen. I hope the antivirals kick in and get you better in no time flat.

[summer]

hello i got the shingle shot Jan 2008. i checked and they said i could get the shot. i was started on plaquenil in fall when i increased the dose to 400 a day i got a rash. i stopped the plaquenil. i asked one Dr he did not know any thing about the rash..dumb Dr.
when i went to rheumy. he said the remaining rash was shingles not from  plaquenil. since i had it over a month and it healed  he could not treat it.  he said if i get it again go to Dr right away.
i am back on plaquenil 200mg a day now.

the rash has left scars on my back  but i did not have any pain. just a mild Itch that is why i did not go to any Dr. maybe the shingles shot made the side effect less?
hope you are feeling better.