Shingles - side effects

Infections
1

I have read a lot of great informatinon on this forum, thank you! I was diagnosed with shingles on 7/21. I am 46 years old, and relatively healthy, as I am active and usually only get a cold and flu every year. Almost two weeks ago I started having some very strange symptoms, elevated blood pressure, headaches, digestion issues/dizziness, tingling and so on. This led to extreme anxiety After a week, I went to my doctor, and we were monitoring my heart. I didn't have any shortness of breath, but did have tingling in my neck and arms, so again, I was thinking the worst. After another few days, my symptoms were not getting better. I couldn't exercise, eat properly, work, concentrate or sleep. I was also getting dizzy. Around Wednesday 7/19, a rash started forming at the base of my neck. Felt like acne or ingrown hairs or something. I assumed that was just stress or me rubbing my neck so much. Then the rash got worse and was traveling up to the base of my skull. By Friday, I had enough of this. Almost two weeks of this suffering I went back to the urgent care. They did an ekg, they did blood work, and everything appeared to be ok. No infections they could see. Almost as an afterthought, I asked him to look at the rash on my neck. He immediately said it was shingles.  He prescribed Valacyclovir and I started taking immediately.

Mentally, I started feeling better, so I went on to try and learn more about this. In the US, this is an "old person" disease, so I knew nothing, but learned this can happen at any age. I realized I was definitley experiencing a lot of the same symptoms as so many other.

So, I am near the end of day 3 of the treatment. I have felt a bit better, mentally and physically, but I still feel very "off". It is hard to explain, but it almost flu like, but no fever. I have bouts where I can't concentrate and can't engage in conversation. My bp is back to normal, and my dizziness/ear pain has really calmed down. I had a couple of new blisters show up yesterday, so I wonder if I am still is the "midst" of this.  The rash doesn't seem to bother me too much, aside from some soreness on my neck and head. It is everything else that is freaking me out. I feel like I should be "turning the corner" and feeling healthy by now. Is it common for the sickness to go on for weeks?  I see others have gone through this. Thank God I work from my home office, or I would have missed two weeks of work. I did take sick time for the worst days and doctor visits. I just still don't feel right as I get ready to start this work week. And I miss being a good husband and dad. I have been absolutely useless during this time.

Thank you all for advice, and for listening. Who knew shingles would be such a strange and stressful journey?

2

Hi bjorn,

Unfortuately, this disease is insidious and strange symptoms can go on for a long time. Everyone reacts differently to the illness and the after effects. I got shingles in November 2016 and now have PHN nerve pain plus other lingering problems like lack of energy, strange allergies, numbness and generally not feeling back to my normal healthy self. Doctors do not know enough about shingles and PHN so you shouldn't rely too much on them. Reading posts in this forum is a good way to learn alternative ways to deal with this illness. Trying to sleep a lot and eat a healthy diet and learning how to get rid of stress all will help you. Also, practicing ways to relax is a good idea. 

3

Hi Bjorn,

I am so sorry you are going through this process with Herpes Zoster Shingles.

Initially, the symptoms of shingles are similar to the flu without the respiratory system, such as headache, aches and pains, fever, chills and sweating, malaise and fatigue, exhaustion, lightheadedness, dizziness, photophobia. These can last a couple of weeks before the lancinating or burning pain starts, followed by the rash.

The pain can continue to worsen for a period of usually two to three weeks, then decrease in intensity. The fatigue and exhaustion can continue for months after the rash and pain have resolved.

It is important not to try to power through this disease, but to rest and sleep. This is a powerful virus that has attacked your Central Nervous System and is circulating throughout your entire body. Do not work a normal work week. It will only slow the healing from this disease down to a crawl.

Hopefully, you have received strong analgesics from your physician to treat the pain.

Recovery from shingles takes at least a couple of months, if not more, depending on the severity of the viral infection. You do not feel normal in 2-3 weeks. EVER....Most have difficulty with focusing and concentrating.

I am a Nurse Practitioner in the States and have had Herpes Zoster Shingles in my right ear every three to five weeks for the past twentyone years and twice in my eye.

Please let me know how else I can help you with Shingles.

Best Wishes

Merry Juliana

4

Hi Merry, 

I think one reason I am not bouncing back from shingles/PHN is because I did just what you advise everyone not to do. I tried to power through when I first got shingles. I am a college professor and I got the disease Nov 3. It was toward the end of the semester and I took not take time off as I was a new hire. I remember being really sick and in horrible pain but I still forced myself to grade papers and lecture. I worked straight through until December 20th and did not take any time off. I think that is one reason why I am taking longer to get my energy back and why I still have lingering symptoms. The rash never came back though, so that's one good thing. But, I still feel sort of wiped out, not at all like I am back to my normal healthy self. One more thing! I did not find this site until Dec 21st so I didn't know at the time I got sick about how bad it was to power through when one first gets shingles.

I wish I found this site sooner!! 

 

5

I don't actually remember when I discovered this site but I do know I missed the part about not powering through when one first gets the disease. It took me until the end of December to realize I should have stayed home and in bed for the seven weeks I had had shingles. 

6

Dear Tiffany,

The reason I am so active on this site is that I was not diagnosed in a timely manner, 3-1/2 weeks after the onset of agonizing pain. I was therefore not treated properly with antivirals the first time. I received no analgesics and literally wanted to cut out my ear. I saw four physicians before I was properly diagnosed. I therefore wish to mitigate the pain and harm that occurs when patients are left to sometimes ignorant or uncaring physicians. There are wonderful clinicians and physicians in every country, to be sure, but unfortunately not everyone gets to see them.

I feel I would not have recurrent episodes of Herpes Zoster Shingles in my right ear every three to five weeks for the past twenty-one years if I had received the appropriate antiviral the first episode. Instead, I continued to work with this severe agonizing pain, as a single mother, powering through this, and paying for it, literally, for decades....I don't want other people to suffer the way I have.

May I ask where you teach and what? I adore professors and teachers! My identical twin is a professor! They never pay enough to the people who perform a real service to the country.

It sounds as if you were in survival mode when you were struck by shingles until winter break came along...

I am glad you found this site, Tiffany.

Best Wishes

Merry Juliana

7

Hi Merry,

Thank you so much for your kind words. You are truly helping so many of us who feel isolated and full of anxiety dealing with this scary illness. I also did not get diagnosed early enough to take anti-virals. Once again, it was because I thought I was just tired and had the flu so I kept working through all my pain and misery. I had no idea that I had shingles. It never entered my mind! I can remember sitting at my desk during a class and going over a paper with a student and I literally thought I was going die from the pain. By the time the semester ended, yes, winter semester, and I finally forced myself to go bed and stay in bed, I was so weak and ill that I could barely eat, walk or sleep for six to eight weeks. I live alone so it was really hard for me. I finally saw doctors who gave me what help they could but it was then I realized how little most doctors know about treating shingles or PHN. It's sort of likr one size fits all. I have slowly been building my strength but I still have to be very careful about everything I do or I start feeling really sick again--no blisters--just a sick feeling like the flu.  

I unfortunately developed PHN and have been fighting not to let that bum me out completely. The PHN does seems be getting better VERY SLOWLY. I have to measure my improvement by tiny millimeters or I sometimes think I am not getting better at all. Small things like I notice I am not constantly carrying gel ice bags with me all the time now or I can go an hour or so now and not notice severe pain remind me I seem to be gradually improving. It's the fatigue, my weakened immune system and anxiety that are really hard for me now. 

I teach college English in Southern California which means I teach all types of writing, literarture and critical thinking. I took off Spring semester.

I have to return Fall semester the end of August. I am hoping that I can 

survive the semester. I really want to get back to work but I don't want to damage myself further. I will just have to learn to pace myself and pay attention to my body more. I am also using a lot of Charlie's suggestions and other people's advice on this site to learn how to relax and de-stress myself.

I'm sorry you have recurring shingles, by the way. Do you work? 

8

I meant do you work currently. I do know you're a Nurse Practitioner, but I wondered if you are back to work now. smile

9

Thank you Merry! (and others). I certainly do not enjoy hearing of others suffering, but it is so helpful to hear these stories. I have certainly tried to "power through" it.  The pain of the shingles is not as severe for me, luckily. I have some burning and tingling down my neck, but it is the discomfort everywhere else that is freaking me out. I am a runner, but I can barely stand it outside for five minutes now.  I have been able to sleep the past few nights, and I think that has made a huge difference. Thanks again for the discussion!

10

Hi Again Merry- have you heard any stories of shingles sufferers getting some relief with chiropractic care?  I think sometime in the near future, when feeling better, I may look into this. I went to a chiropractor many years ago, and prob felt better than ever during that several year span. Of course, that was years ago, when I was younger and before kidssmile But I wonder if regular adjustments would help with this...

11

Tiffany,

I love literature and reading, but unfortunately was never taught how to analyze literature. I am not blaming the college professors as I was extremely naive, as well. My focus was science and medical courses. Not until my son took an AP course in HS by an excellent teacher and I read his books did I fully comprehend the beauty of literature. Frankly, it takes wisdom of living sometimes to fully understand the nuances of literature. I appreciate some pieces much more now than in my twenties, as I am sure you can imagine.

Where do you live as I used to live in San Diego for 17 years and obtained my advanced degrees at UCSD. I moved to Delaware in 2009 from San Diego. I had sustained a second stroke, retired from practice, but will be returning to work doing house calls. I love seeing patients, but this way, will not have to deal with office politics. I have not lost my clinical acumen.

Had I known you were an Enlightened English Professor, I would have checked my letters to you for that darn dangling participle! LOL

You are correct that you have to measure progress in millimeters, but realize that progress is being made.

I hope you invested in a rolling briefcase to carry your papers, laptop, and other essentials. My twin bought a Samsonite carryon with "spinners" wheels to make it easier on her. The spinner wheels are great as you are not dragging the carryon. It glides with you.

Some individuals feel Solarcaine with aloe helpful as it contains Lidocaine to numb the nerve endings. I use a prescription medication Auroguard Otic drops with Benzocaine that helps soothe my right ear. This is in addition to the Topamax, an anticonvulsant, daily and Oxycodone for the first few days of the episode. My pain never begins to approach the level of pain that first episode. Of course, at the first hint of the recurrent episode, I start Famciclovir. It nips it before it becomes a culminating event.

Also, I am on Venlafaxine, a SNRI antidepressant, for longstanding depression and PTSD. (Abusive stalking husband attempted to murder me twice. I left him when my son was 3 years old, 25 years ago.) SNRIs help decrease the neuralgia and depression one can have from chronic pain. They are weight losers, not gainers. SNRIs antidepressants are indicated to decrease the PHN, as are Pregabalin and Gabapentin. Topamax, an anticonvulsant, is off-label use for PHN, but I was on it for migraine prophylaxis, and I am certain it has helped prevent PHN and reduce the pain during episodes.

I am open about depression to erase the stigma of mental health challenges that the majority of the population has during their lifetime, but might be afraid to seek help.

When I had severe depression, a dear friend sent me a card that made a huge difference in my life.

It stated essentially, Cultivate le petit bonheur. Cultivate a little happiness each day. Read a good book, put on some music, take a bath by candle light, admire the sunset, and trust that tomorrow the sun will rise and the birds will sing. The day will soon come that you can go on living as you did. You will find hope, again.

Best Wishes

Merry Juliana

12

Bjorn,

I am glad you are not in severe pain. I am not a huge fan of chiropractor adjustment in fixing shingles as from a pathology standpoint, it would not help. The virus has infected a sensory nerve root causing inflammation, pain, and rash, in the dermatome plus circulated throughout your entire body, causing the generalized symptoms. Antivirals stop the replication of the virus and therefore reduce the amount of pain and duration of the illness.

Best Regards

Merry Juliana

13

Thanks Merry. That is good to know.

14

I felt the same way for about a week before I got a rash under my left breast, but it was very mild. After it cleared up I got it on my toe on the opposite side of my body. Who would believe it could be on your toe. I've been suffering with it since May and I"m going to my third appt. tomorrow with my doctor. The only reason I know its shingles is because its the same look as my breast. The toe was been so much worse and I have ran a fever around 100 off and on. I'm tired all the time, headache, and the tingling you mentioned is the same thing I felt in my whole breast right before the rash started. I hope you get better soon. This is like robbing your life at the time of summer when we should be enjoying the nice weather. 

15

I have been told that emu cream can be very effective in relieving the discomfort.  As others have noted, each case is different, but getting plenty of rest is essential.

16

I no exactly what you mean...being off!  I'm 55 and realativly healthy .Mine started May 27, 2017. I thought I would be on pain meds and go about my business . I was totally unprepared for 5 weeks of misery. At the 2 month mark, I thought i was "well". I have had more intense allergy symptoms and tiredness lately. Yesterday I felt the same ache in my back as when this first started. So I am panicked that it is returning. The combination of aching pain and therefore no sleep did me in.  I'm happy to have found this forum to hear others experiences.

 

17

*know

18

Hoping it doesn't come back for you. Try not to stress about it.  Easy for me to say, right?  smile I just started my 3rd week of misery. Just when i start feeling well, I get knocked down. No sleep last night = miserable day.

19

Hi jessamyn, 

Most everyone on these shingles threads has similar symptoms like nerve pain, lack of energy, tiredness, anxiety and a feeling of not being back to their normal selves after having shingles. For many of us, these after effects last for months or longer. You mentioned you noticed your allegies are now worse. I'm so glad you brought up this problem. I too have noticed that after my shingles supposedly went away and the rash was gone, my body still felt weird. It is like my whole body has become more senstitive to everything and my senstivities and allergies have gotten worse, too. The after effects of shingles can be different for everyone but are very real. Most doctors don't realize that the lingering problems from shingles can last for a long time and can include a lot more symptoms than just nerve pain. I listen to my body and try to use alternative ways to heal myself. Avoid stress, get a lot of sleep and rest as much as you can. Don't just rely on what doctors tell you. 

20

So now I'm at 12 weeks. I realize that the pain will flair up when/if I get overtired (???). Even when I feel good , if I do too much it starts twinging. I still sleep a lot and work only 20 hrs a week. I'm wondering does this turn into chronic fatigue syndrome? Trying to keep my spirits up.