Reoccuring shingles - really scared / worried what can I do?

Hi 

I had these last year .you can have them in younger years I know some one that had them when they was 7 .also my daughter boy friend had them at 24 . I am 55 and it was not nice and would not like them back .poor you having them again .have you ask a bout having a injection it's like the flu one you have every years .i been told it helps . Stoping you getting it again .i will have it if it comes back .ask the doc about it . Hope you feel better soon .

julie x

Hi elucy. Sorry to hear you're suffering again. This is almost the same as my experience the last couple of years. Kept going to Docs with vague feeling of unwellness coupled with lots of pain which seemed to move around to different parts of my body. I'm sure they thought I was just being a "hypochondriac" old woman! I have osteo arthritis which flares up badly during very cold wet or hot humid weather. I started to blame my vague aches and pains on this as various blood tests were negative except for being a 'bit' anaemic! Iron pills solved this but made my mouth and gullet really sore. Some sort of reaction they said without explaining what! On it went until after Christmas last, (2014). I'd just had the flu jab and started feeling unwell again just before New Year. Thinking it was the flu bug which was not included in the vaccinations last Autumn (H3N2!), I just stayed indoors, plenty of fluids and lots of sleep, ( for three months!!! )  At Easter I noticed an itchy rash accompanied by pain in my upper right arm and shoulder. Previous to that I had a very itchy and painful scalp and felt very hot and sweaty which my doc said was a reaction to Tramadol which I take for the OA. No reaction the previous 5 years or so mind!!! I Went to see a different Doc and she diagnosed shingles and put me on anti virals for a week. I think it was a bit too late as I couldn't see her before the 3 days period which we should do if they're to work properly but..... Easter hols and closed! Anyway, I've since had three more patches of rash, hand/wrist, upper arm and shoulder on the left side this time then in the scalp again on left side. This has caused more pain than the first time, plus earrache but no rash near my ear.

 They don't prescribe anti virals unless you have a rash I believe. I didn't know until I came on this website that you could get shingles without a rash and multiple times to boot!  I'm 72 in a couple of weeks and am also feeling extremely fatigued, irritable and getting quite depressed now. Going on hols at the end of may so hoping it will help this.

 I can't give advice but hope this helps you to know you're not on your own in this. The Doctors don't seem to know, or WANT to know that people do suffer badly with this and it needs more research into testing for people who apparently are having severe pain and illness for no reason which can be seen or tested for in normal blood tests.

 I hope some Doctors will read these forums and start to do the research needed. It will help all of us and mean that maybe folk can get the proper treatment sooner and get back to work if they're not retired like me!  

 Keep going back to see the Doc and maybe they'll realise we need help and not just diagnose us from a text book as my Doc had to do! With the stress of life these days Ithink this sort of illness will happen more and more in my opinion!

 I intend to print off some these forum replies and show the Doc next time I see him/her.

 Good luck elucy, rest up more if poss. It's NOT just old people this affects as I've discovered. I can't have the vaccination now until I clear for at least a year!

Hello, Elucy,

What you are describing is classic recurrent Herpes Zoster or Shingles. It is not just an old persons disease, and can reoccur in healthy individuals, although will occur in immunocompromised people more frequently. .

When you are having fatigue, aches, chills, low grade fever, headache prior to the rash, you are experiencing the predromal phase of Zoster and have a viremia. You are truly sick and should start taking the antivirals immediately, especially if you are beginning to itch or experience pain in the same area.

I have the antivirals at home to start when I start having pain. The predromal phase lasts about a week before I get the severe headache of Zoster Oticus in my right ear. You also need to obtain a prescription for a strong opioid such as oxycodone for the excruciating pain, not a weak analgesic like codeine. The agonizing pain can wear you down to severe depression, fatigue, etc.

I get Zoster-Shingles in my right ear every three to five weeks for the last 19 years. I have been taking antivirals promptly at first onset of symptoms, take oxycodone for Severe pain, use Benzocaine ear drops to soothe my ear drum, and Topiramate to slow down Nerve conduction and decrease overall likelihood of postherpetiç neuropathy.

I hope this helps explain the treatment a little. If you are aggressive in your treatment, you can get ahead of the pain.

You need to find a physician who is proactive in treating this .

Also, do you have Lupus, Psoriasis, ITP, Rheumatoid arthritis, or any autoimmune disease?

I am an NP in the States.

Please let me know how you do. You are not in this alone.

Merry Juliana 😊

Hi Elucy

i know what you mean about feeling like a hypochondriac, I feel exactly the same. You have probably read my blurb on shingles and as I write I am currently sitting up in bed with a stinking cold and an itchy back. Now, is it the dreaded shingled back again or not I ask myself. My husband checks my back daily for me, says there's no rash but it itches like mad. I really can't be bothered to go to the GP again and face their negativity. I'm really fed up with their attitude and don't feel well enough to make the effort to see them. Since my first attack in October 2013 I have constantly felt unwell, cold and flu like symptoms mainly , so is it my immune system weakened? I feel like I'm always doing self analysis!

i can understand what you say about dark days and think we must come to the conclusion that it's part and parcel. I've faced some trying situations in my life but have always remained cheerful, I thought! Never like this. I've got a strong constitution and am determined and stubborn, not a quitter but this is something else! Am off on holiday - hooray - in just over a week, at the moment I can't bear the thought of getting packed but know I will, I mean you've got to, haven't you!  and hope the sunshine will be a tonic that I need.

Keep your chin up and try and focus on something lovely to take your mind off it - easier said than done I know. 

Regards, barbara

 

Hi Elucy;

First of all, I'm not a medical professional, this is all based on my personal experience over the last 35 years.

I have had reoccurring Shingles since I was 20 years old. I just turned 55. I used to get Shingles once a year. As I got older, about 8 years ago(at the age of 47), I was getting breakouts atleast two times a year, and more. Finally, when I started getting breakouts every couple of months, my neurologist decided it was time to start a medication to prevent it, that was Valtrex. I also have a cream called acyclovir for healing and itching.

I have always had certain symptoms before, during, and after my breakouts. We usually knew that if I had viral symptoms (diarrhea, upset stomach, tired, sick feeling) it was a beginning sign of an onset of Shingles. I could also feel the outbreak site, before it ruptured the surface of the skin.

I have now been on Valtrex for about 5 to 6 years. It's been a blessing. I have had outbreaks about 1 to 2 times a year. Compared to the every month to every other month it had become.

I personally spoke to the pharmaceutical company that manufacturers the Shingles vaccination. They told me that a person that has reoccurring Shingles will have lessened symptoms during the outbreaks; but, it will not prevent the reoccurring outbreaks of Shingles.

I have had lots of symptom before, during, and after. It's almost anything goes.

If I can help you with any thing else, let me know. My neurologist treats me ; but, normally an infectious disease specialist is the one, f poo r ongoing problems. Good luck with everything. I hope you don't continue to have breakouts. It's no fun. I feel for you.

People have used Cymbalta, an antidepressant to help with the pain and depression they feel regarding the recurrent Zoster. I am on Venlafaxine, a similar antidepressant with the same mode of action.

Zoster-Shingles behaves like chicken pox in that the vesicles-blisters come out in crops, then crusts over.

For those who get recurrent Zoster, one can take an antiviral daily. This did not lessen the frequency for me. It does work for most people.

Merry Juliana

Thanks so much for all your wonderful and supportive replies. I can't have any kind of antidepressant medication because I am already on them for panic and anxiety disorder so you can see by nature I am a "stress head", my GP just will NOT give me antivirals, she states the side effects are worse than what I experience. I cannot have the injection on the NHS as I am too young, but I am considering going to a private practice to have the injection for £180. To be honest looking back I think EVERYTHING is connected with this vile virus. My "cluster headaches" I have now wondered if they are not just a band of shingles on my scalp. The headaches are so severe and come on so quickly (and last for days on end) I just can't function and none of the migraine sprays and even an epi pen get rid of the pain. Basically I am in a real mess - but I do not want to wallow in this. More than anything in the world I want to get better. I eat a good green diet, take loads of high quality vitamins, minerals and omega 3,6 & 9 daily. I also drink lots of water and of course I sleep a lot - show me a shingles sufferer who doesn't ?? haha (you got to laugh or you'll cry eh ??)

Hi.  Going off at a tangent I used to suffer with migraine, I could have 2/3 attacks per month and had to carry on working, as you can't keep taking time off can you, although I did loose some time from work. Anyway, it got so bad I saw a neurologist who sent me to an  anesthetist (I had private medical insurance through my job) he burnt off the nerve ends in my neck via ex ray and I've never had an attack since - about 5/6 years now. Makes me wonder if there is a link........

😊

Dear Elucy;

As a couple of people have said, the antivirals do not cause alot of side effects. If you read my earlier message, I've been on one for going on six years. Also, I don't feel the best kind of doctor to handle this is a GP. The other thing, in the future, if you should ever have some sort of autoimmune problem,(which alotof reoccurring Shingles patients do) certain Omega vitamins are not good for that. Also, bean sprouts can cause a problem for certain autoimmune patients. Read up on which Omega vitamins might be best to avoid.

As far as the immunization, if you can find a specialist to administer it, that's great. Just remember it helps with symptoms, it doesn't prevent reoccurring Shingles. Take a nice long bath for your anxiety! I do!

Hello elucy,

firstly sorry to hear that you are having such a bad time of it all. It is also a shame that you do not have a helpful doctor. However Shingles seems to be something that main stream medicine, apart from pain relief has a cure for.  I have found some alternative treatments that I am sure have helped me. L -Lysine is known to prevent cold sores whch is the same virus as shingles, it is sold in any health food shops. It also I think subdues the Shingles virus, and can help prevent its return. I have read that other sufferers have had sucess with this.A Tincture called Avena Sativa taken three times a day (or advised by your health shop) helps repair the outer nerves. It need to be taken for six months, but I think well worth it. Nerves take forever to heal so are left weekend after Shingles, that is why so many suffer with PHN. Geranium oil as a massage oil helps the nerve and muscle affected, also Magnesium is a healer for nerves and muscles. All I have mentioned can do you no harm, as they are natural remidies. I would be interested if any one else has done research into the 'alternative' healing methodsfor Shingles. I am sure there are other natural remedies to help you with energy levels and the low moods. Meanwhile, go to a good health store, prefferably an independent one, as they tend to know more about there products, and find a good herbalist to help you. I wish you well.