Shingles Is Like The Invisible Man

I was standing in the reception area of my office one Wednesday just heading out to go to see the doctor for a scheduled injection. Suddenly there was a very odd feeling just below my waistline on one side. It was like a vibration, or a sort of buzzing feeling.  I mentioned it to the doctor but he brushed it off as trivial and it had stopped by the time I got there. That symptom is called a prodrome.

Invisible Man

A week later there was severe pain in my back. I went out and got an ObusForme for my office chair thinking it was a back problem, but that and heat did not seem to help so I went to a walk-in clinic for help. After an examination the doctor gave me a prescription for muscle relaxants. They did nothing and I was beginning to doubt the evidence of my own body when the pain moved to the front on the same side.

I went on working though the pain was sometimes in the back, sometimes in the front but always intense. Since my regular doctor was still on vacation I went to emergency. The pain was the worst I'd ever had.  All the doctor there did was give me a prescription for painkillers which I tried once. When that didn't help I got rid of the pills since they also produced nausea.

So after three doctor visits and three weeks of pain I still had no idea what  was wrong with me.

On the weekend our errands included a trip to the local drugstore to pick up a prescription. I started talking to the pharmacist and asking her for ideas to control the pain problems I was having. She asked "Do you have a rash anywhere?" I said yes, I had a very little rash under my belt buckle but assumed it was an irritation. So she said it was likely shingles and I should hurry to the doctor first thing Monday morning. The reason for the rush is that once the rash comes out you need to start anti-viral treatment within 72 hours for the drug to work.

I managed to get an appointment and was given a prescription for Famvir. Unfortunately that made me feel worse than shingles did so I went back to the doctor and she gave me a prescription for Valtrex, another anti-viral which worked well. After a few days I started to feel better.

Shingles is a herpes virus (herpes zoster) and these same drugs are used to treat or prevent other strains of herpes. If you ever had chicken pox there is a chance that you might get shingles, particularly if you are taking immune-suppressing drugs.

Shingles affects defined areas of the body called dermatomes. You can see them in this poster that has been on my doctor's cupboard door for years. She got it from one of the manufacturers of shingles treatments.

If I were not taking immune suppressant drugs currently I would ask for the shingles vaccine. Unfortunately it is a live vaccine and my rheumatologist strongly advises me not to have it.

My advice if you had chicken pox and your immune system is not suppressed would be to ask your doctor about a shingles vaccination.

http://www.ncbi.nlm.nih.gov/pubmed/23932722

Risk of herpes/herpes zoster during anti-tumor necrosis factor therapy in patients with rheumatoid arthritis. Systematic review and meta-analysis.

http://www.ncbi.nlm.nih.gov/pubmed/24322451

Comparison of national clinical practice guidelines and recommendations on vaccination of adult patients with autoimmune rheumatic diseases.

The Expert Patient

After a few years with a chronic illness we certainly become experienced, but that alone does not make us experts.  Achieving expert status takes work.

                                We Are Experienced

Does it really take 10,000 hours to become expert? In the case of illness endurance alone is not enough.  You've got to go out of your way to find out more. Educate yourself and you may become a knowledge expert, a support expert or maybe a connector or aggregator who puts information and people together for everyone's good.

I have found active Yahoo Groups in specialized areas. Sometimes the level of information available is due to one dedicated person.  Often it is core group which patiently covers the topics over and over as new people come along with an acute problem, use the advice and move on as their problems resolve. It's hard to keep a group going long term and many of them are gone when you go back a few years later.

I was lucky to find some real experts who saw me through two bouts of shingles.  

Illustration from Atlas of Human Anatomy, Frank Netter MD. Illustration showing how shingles spreads in bands (Dermatomes) on the body

When I went looking for a group with information about Fuchs Dystrophy I think I found the motherlode at a Yahoo group called fuchsfriends which is "a place of support and information for people with Fuchs' corneal endothelial dystrophy"

                                                 ehealthwall.com

These "patient experts" are so much help because they not only have a narrow focus on a specific disease but also they also have personal experience.  I am a member of another group where the moderator's signature is "Gina, Not an MD". Her advice is so good that the disclaimer is necessary. (Of course all such groups come with an additional disclaimer saying advice is not to be construed as medical advice)

Online support is a valuable commodity and I am lucky to be in a very long term supportive group at ra-factor.  Gilly, the group owner and "list mom", is one of the most empathic and consistent people I know.

                               Valuable commodity  dhotw.com

She said she does it because she can't imagine not doing it. Even on vacation she wonders how we all are doing.  She says "It's nice to talk to people, like a family" And after many years of conversation with these friends who "get it" because their problems have similarities to mine I would like to go visit them all in real life.

It would be quite a journey - to the UK, Australia, Canada and all over the US. Where but online would we ever have met and shared so much ?

And here we all are (approximately):

There are complaints about this map. More people wanted to be the cat than anything. Others said "Where are the dogs?" Our Texas member said we might as well just put a gun on Texas based on some current political moves.

                              A favourite "Welcome to the Group" gif