Freak of nature

Dear Steffy,

I empathize with you regarding the agonizing pain, fatigue, exhaustion.

Also, not all your friends and family understand the excruciating Neurogenic pain and flu-like symptoms that accompany Herpes Zoster-Shingles.

I have had Herpes Zoster-Shingles in my right ear every three to five weeks for the past twenty-one years and twice in my right eye. I have had Herpes encephalomeningitis.

Here is what I recommend to reduce the frequency and severity of pain of episodes.

1. Get the Shingrex Immunization. It is a two stage vaccination one month apart, intramuscular injection. It is highly efficacious in stopping recurrent Herpes Zoster-Shingles.

It is available in the US at the pharmacy and covered by insurance. If you are younger than 50, and you have had shingles, it is still covered. You might need a note/ prescription from your Physician. If you are in the UK/Canada/Australia/NZ, I know it has been distributed there, but the national health insurance may not cover it until age 70, which is ridiculous. It is expensive, but I would have paid thousands not to have recurrent shingles.

2. Google High Arginine Low Lysine Diet and Herpes. The amino acid Lysine helps prevent Herpes Zoster-Shingles, and Arginine triggers Shingles. Chocolate, Nuts, and Legumes are all high in Arginine.

3. Avoid the sun, UV radiation, as it triggers Shingles, big-time!

4. Try taking either Valcyclovir or Famciclovir as a maintenance dose daily. It does help some people. Do not take Acyclovir, as the Herpes Zoster-Shingles virus has developed resistance to this Antiviral. It is the oldest, and does not work, especially on people with recurrent Herpes Zoster-Shingles.

5. Remove stressful ie toxic people from your life! Easier said than done, I know, but...if you have "so called friends" that are just using you, get rid of them. Family members who are entitled? Learn to say "No!"

6. Is your job poison? Change it!

You need to examine your life, delegate what you can, and rid yourself of the stress when you can.

Stress is your enemy!

7. Do you have any medical conditions predisposing you to Shingles ie,

Autoimmune Disease-SLE, Psoriasis, ITP, RA; IBD, Cancer; DM, taking Corticosteroids or DMARDS?

Make certain you are in control of your health and get top-notch Physicians you can trust!

I feel for you so much, as I know how painful and how lonely it is to suffer with no end in sight.

Please let me know if this helps you.

I am a Nurse Practitioner in the States.

Best Wishes

Merry Juliana

Oh gooodness! I too empathise. 

I too too have recurrent shingles - but thankfully nothing like what you are experiencing or like Merry Juliana's experience.

I first started with shingles just over two years ago, which began with a pain in my side - just like having pulled a muscle. I then experienced flu-like symptoms before the rash appeared. Thankfully, I realised quickly what was wrong and had an appointment with my GP on the same day that I phoned. I simply said, 'I think I've got shingles' and I was there within a few hours. 

My GP prescribed acyclovir, which has worked for me, along with pain-killers (codeine if I recall correctly) and the symptoms very soon started to diminish, although I couldn't believe how very low and depressed I felt.

However, after the third or fourth recurrence - thankfully mild - in 6 or 7 months, my GP had blood and urine tests done. The results showed that I have something called Monoclonal Gamothapy of Unspecified Significance, which can be the precursor to a myeloma. Basically it means that I have a rogue immunoglobulin (paraprotein) and that my normal immunoglobulin levels are low - I'm subject to an increased risk of infections.

Over the last 18 months I've had a recurrence of shingles about every six months. I'm monitored by the haematology department of my local hospital to make sure that the paraprotein levels don't escalate to a critical level.

My reason for sharing this is that there is often a reason for recurrent shingles: it's not just bad luck. And it's important to have it checked out. My GP was excellent and very thorough in asking for tests but not all medical practitioners are so thorough.

Apart from one time when I was prescribed Famciclovir, Acyclovir has worked for me (my recurrences have been mild) and I always have a course in hand so that I can start taking it as soon as any symptoms appear. I discovered that my diet tends towards high lysine, which I am sure helps. But, frustratingly, the Shingrex immunisation is not available here in the UK before age 70 - frustrating because it becomes less effective as you get older. I've got just over 3 years to go!

I think you need to have had shingles to have any comprehension just what it's like. And, unfortunately, many doctors simply do not have a clue. So it's important to make sure that you are getting the advice and treatment that you need.

I hope that you get both help and relief.

David

Hi Steffy. I am sorry you are going thru this but it is good that you have reached out for advice and support. You will find many good people here with great and helpful advice to get you through this. You will also find healthy support here from sufferers like yourself, which is a wonderful thing as chronic pain can be a lonely road to travel and only those who have traveled this same path can truly understand. Lean on that support and the support of your loved ones and friends.

Follow the wise advice of Merry here and promptly get this new shingles vaccine "Shingrix" when your shingles outbreak has cleared. Unlike the old vaccine, you do NOT have to wait till you are shingle free for 6 long months before you can receive this new vaccine. When you are clear of this outbreak, go quickly thereafter to your doctor for a prescription and get this vaccine. It DOES work...i'm living proof. After 8 very long years of recurring shingles, this new vaccine gave me my life back. It is very new, having only been approved for release this past January 2018, so ask for it by name.

Ref to your shingles and your concern that it can affect your brain, you are no doubt miserable but take comfort in its current location. Your Aunt did tell you correctly, though not directly to your brain. It is highly unlikely in its current location around your midsection. But please do not delay getting this new vaccine, as shingles CAN develop elsewhere. Again, yes shingles can affect your brain but this is the case if you develop shingles in what's considered the worst locations, being your ear and most especially your eye. Watch for the signs. If shingles develops in your eye, the symptoms are not something you will likely mistake for something else because the pain will be intense and often requires hospital admission, to help control the pain and protect your eyesight and hearing. ,Shingles in your eye will typically manifest on your nose first, with bright redness and a mild rash on and around the nose, followed by pain in your head, face, eye, nose and ear. This is your first sign you need to see your doctor ASAP. With the virus developing in your eye, this virus is located close to your brain and can damage your eye sight, as well as damage the many nerves located in your face and in your head, leaving you with possible permanent damage to the nerves. Hopefully, you are able to get the new vaccine and it will NOT ever come to this. Shingles in your eye and ear is quite painful but it is also treatable but avoidance is best.

Hope this finds you doing better. Take care, friend.