Shingles Support Group

Hi Cindy,
I know exactly how you feel. Well maybe its worse for you having two toddlers to care for. My girls are grown. I am 54 and have had PHN since the end of May. After suffering all summer from it- I broke out
in shingles rash the first week of August. The pain is not getting any better and I am getting very discourged. I am on Lyrica also and Gabapentin, Amitriptyline, and Oxycodone. It helps, but the pain is still there 24/7.
I work at a school with special needs kids. I missed the first few weeks of school and now have forced myself to return for half days. This is my 2nd week. I come home totally wiped out and sore. I know they need me to come back full time, but physically I just can't. I am worried about my job also.
I am completely useless when I get home. My husband and I just got married in July and he has been working long overtime hours and I feel guilty that I can't even make him dinner at night- except o the weekends.
I feel like this pain will never go away. I don't remember what it feels like to be normal.
I push myself to do everything I need to at work and try not to worry, but its hard. It is also hard to hear everyone ask- are you all better yet? How are you doing? I can't tell them I am better, because I am not. I feel like no one really wants to hear over and over how much
pain I am in, so I avoid it as much as I can.
I am leaving for work now, with my purse packed with meds.....
I wish I had better advice for you, but I am at a loss too!
I do hope your pain passes soon- everyone is different and the pain lasts different for everyone.
Good luck to you!
Patty

Hi Patty,
Thank you for your response. I have had PHN since the end of May too, well that is when I got sick. I had shingles 3 years ago and I did break out in blisters/rash but the pain and blisters quickly healed in a matter of weeks. I was completely healthy after that. The last week of May I started experiencing pain. I went from doctor to doctor and was put through a series of medical tests and I have been put on numerous medications (steriods, aclyvair, neurontin, darvacot, lyrica). I finally saw a pain mgmt doctor who confirmed my diagnosis. He scheduled me for immediate thoracic cortisone steriod injections. I had my first shot on Monday. It's too early to tell, but I can tell it took the edge off somewhat. It's just the pain is there 24/7 as I know you can relate. I work for a school district too, but in the admistration office. They are going to fire me tomorrow if I don't return to work. I asked if they would allow me to use the remainder of my available leave (it's not fmla) as half days, just so I can get me feet back on the ground and they said no. It's all business to them, but I wish they would understand me. So yeah my world seems to be falling apart right now. I have 2 kids who know mommy is sick and it breaks my heart that I can't be the mom they need. My poor husband has been my rock. He has done everything at home and will now be soley financially responsible for all of us. I will still be getting disability, but the thought of me not having a job is hearbreaking. I worked there for 7 years and in the end, this is how they treat me. Once I get medically released to work, I will be looking for part-time work. I just have to pray I don't have this pain forever.

Yes, I too forgot how it feels to be normal, pain free. Just last night I was thinking...like I took everything for granted. Just the simple things like washing my hair without worrying about raising my right arm, walking around the grocery store without leaving in pain, playing with my kids without worrying about them hugging me or touching me in that area. Then my friends don't understand about my illness. Some have even blown me off I guess because they don't know what to say. but I still have my family and they care about me and they keep me going.

I hope you have a good day at work. Thank you for your response and your kind words. I wish we were all pain free. We just have to keep praying and hoping.

Cindy

Oh Cindy, we have so much in common right now. I have it on my right side also and I know what you mean.. it hurts to raise my right arm (even with all my meds) and I try to avoid anyone even accidently touching my right side. My husband tries to hug me on one side. It hurts to go grocery shopping and have to reach up to the shelves for things. Normally its not a problem even though I am sort of short and many things are up high. Before it was an inconvenience, now its painful.
I just had gone into work for a meeting. 3 bosses, my union rep and me. I have been suspended- for either 2 or 3 days, not sure which yet, but I am home now.
And they told me my illness has nothing to do with this. I have worked there for 13 years. My husband just switched over to my health insurance in July when we got married. He has health insurance at work, but mine is so much better.
I am very worried right now- that soon I may not have a job at all.
I have gone all summer with no pay- we usually save up for that knowing when school is out I don't get paid. But now its going on longer. I don't know what I am going to do. (We don't have short term disability, that is why I made myself go back half days.) I should look for a part time job too, but there is no place who is going to pay me even a fraction of what I make now. Its scary.
Like you, I just hope I don't have this pain forever.
Please let me know how you are doing. I'm glad your family supportive of you- mine is too and it makes all the difference in the world. I wish I could do more now to be there for them when they need me, but its hard. Take Care, Patty

Patty, I am so sorry to hear about your work. What was the reason they gave you for suspending you? It stinks. We can't take it personal, but deep down I know I do. It just doesn't seem fair when you are willing to try and work even part-time and they can't hold your job. It's depressing. Today has been a hard day for both of us. I sent my employer medical documentation that I am unable to return to work at this time. They haven't responded, but I am sure I will be receiving termination ppwk soon. I am sad and upset. I know it's not my fault, but it still hurts deep down. I feel like a failure because I didn't even try to go back. I cried and cried and I feel better letting it out. I have got to let it go and just focus on getting better and just learn to manage it. and honestly worrying about my job was just stressing me out which was probably making my pain worse. Today at the doctor I had additional bloodwork and the doctor gave me samples of cymbalta. I am kind of leery to take anti-depressants but after doing much research, I read that it can be an effective treatment for PHN. At this point I will try anything.

Hugs to you- Keep in touch,
Cindy

Cindy & Patty...it makes three of us having problems. I've been fighting the pain for a long time from recurrent bouts of shingles. It seems that I will just get a few days of feeling better and something will spark the pain again. I've had back surgery thinking that's been my issue, but I believe all along now that the shingles is the culprit. Let me mention to you about the steriod shot. The new neurosurgeon I'm now seeing told me not get a steriod injection because it can actually trigger the shingles. The doctors that did the surgery gave me the injection and within days I had a breakout. Anyway, back to our pain....My internal med doctor has prescribed the Zostavax vaccination for me, but I have a couple more weeks before I can take it. You have to be clear six weeks before receiving it. My last breakout was on 8/17, but the blisters didn't clear til the end of the month. The vaccination is for 60 yr olds and up, but my doctor prescribed it for me since I'm having so many reoccurrences. You both might think about getting this.

I am wondering. I lost a pretty large patch of hair on the right side of my head. It does not show (unbelievable), but it is not growing back. I have an appointment with a dermo next week who treats this. If I were to get any form of a steroid injection, it could trigger shingles? Even if I am taking an anti-viral? Thanks for your help.

Gina,
Thank you for your advice on the steroid injections. Do they know why you are having so many reocurrances? I am so scared of having the shingles again. A few weeks ago I had the terrible pain come back and was convinced that I was going to get the rash back, but nothing came. I have been under alot of stress, which I know can trigger another outbreak. The pain is getting better again thankfully. Cindy and Patty I can so relate to both of your stories as I have gone through the same thing. People don't understand and I feel quite isolated as my life is not the same. I have just started a new job and I am hoping that it will be less stressful, but I am in a transition period right now. I have found that overall my pain has gotten better and I had the shingles 1 year and 5 months ago. I noticed my pain started to decrease 3 months ago, so I am at least encouraged by this. I am on nothing for the pain right now. I was on Neurontin, but it did nothing for the pain. I pray that the pain goes away some day soon. I have the pain in my forehead and trigeminal nerve area.

April

Thanks Gina. I had my first steriod injection last monday. So far so good. My pain level has dropped some, but not enough so I am hoping my next 2 injections will do the trick. The injections for me, were my last option. After 4 months of excruciating pain, I was desperate. This PHN is a nightmare as I know you all can relate.

April- I am so sorry about your pain. I understand about the stress. I really feel mine was brought on by stress.

i am also at my wits end as i have phn for 18 months. with insurance, my med bill is $100 a month. my depression is getting stronger and some days i think i am going crazy. i plan on taking the vacinne to see if this brings relief. the meds wipe me out each night and i sleep till noon on saturday. i want my life back. my insurance would not pay for a pain block injection. i have lost 20 lbs. and look my age. i hope this passes before the holidays.

HI CINDY, I don't want to make you feel like there no hope, but to let you know you are not alone. Iam 60yrs old.I've had phn for 6yrs. now, and had to retired from a job when I 54yrs of age. But since you are younger just maybe phn will run its course and dissapate. I will pray for you and family. I live with the pain you are experience 24/7 also. AFRIEND LINDA G.