problem, Shingles?

Everyday living
1

Shingles?

Hello,

I went to the doctors 3 weeks ago after having a weird tingling in my side (upper abdomen left side) for a few weeks that suddenly also became numb. I was getting quite worried by the internal tingling feeling, then once the numbness struck I thought i must be having a relapse.

To my surprise, the nurse I saw said it was shingles and said he could see two very faint red spots on my back (that I could not see at all!). I was prescribed the standard antibiotics for Shingles - a 7 day course. 3 weeks on I still have the numbness and it has spread around more of my left side down to hip. The tingling has stopped and very fortunately I haven’t suffered with any pain, which shingles is renowned for.

I’ve read that MS can make you more susceptible to bouts of shingles. I’ve also been suffering with my first UTI this week, so it could be that my immune system is not doing so well at the moment.

I just wondered what other people’s experiences of shingles were and if this sounds similar?

2

It sounds like you may have got off lightly, I sincerely hope that you have.

My wife contracted Shingles in Nov 2014; prior to that she could still walk a mile with just a pair of sticks, within three days of having Shingles she couldn’t get out of a chair unaided.

I spent a fun three weeks pushing her around our bungalow on an office chair before the Docs finally did something useful and sent her to hospital where she initially was put on Steroids and then transferred to a Neurological rehabilitation ward for a few weeks.

She has since suffered with post-herpetic neuralgia (which is basically just pain, and can last for many years).

Her walking has never really recovered, she did get up to doing a maximum of three hundred yards, very slowly, with a rollator and frequent rests.

Three years on she is back in the Neurological ward, (still there, since 3rd Feb) and can not currently weight bear for more than a few seconds.

I’ll just repeat, I really do hope you have got off lightly cos it’s not always the case.

Shingles jabs should be available for anyone with MS.

3

I went down with shingles mid May last year.

I think there might have been a couple of factors involved.

  1. I changed from Avonex to Plegridy in the 2 weeks before. I was on the tritrated dose at the time.

  2. I had a week off work - no stress!! I celebrated my 50th birthday during that time and had an amazing time. Of course the week had to end, and my mind started to think about my overloaded email inbox, constant phone calls and difficult people…

I went back to work and felt ok for a couple of days, but by Wednesday I had a terrible headache and felt more fatigued than usual.

I woke up on Thursday morning feeling like the inside of my arms had been sunburnt. There was a red rash on both my inner arms, very sore and tender. The pain was prickling, with blasts of toothache for extra impact!

I managed to get an appointment at the doctors that day and despite the pain being so bad and the rashes so red and hot, I was told I had a skin allergy and was sent away with antihistamines and some strong pain killers.

That night, the pain was so intense. On closer inspection, the blisters had started to emerge, i went back to the doctors the next day who took one look at my arms and went “you have shingles! It’s really rare to see it on both arms, but it’s 100% shingles! I must ring the other doctors to have a look!” So 2 other doctors came in to have a look…

Anyway long story short. I felt so ill. So depressed, full of negativity, devoid of energy and frequent dark thoughts. The Plegridy didn’t agree with me either, so stooped that on the advice of the MS nurses. Post viral fatigue and MS fatigue are terrible companions.

Started Tecfidera in November. Post viral fatigue mostly gone. Energy levels returning to a point where I can consider doing more stuff, although I am still off work.

I think it was timing of the Plegridy which altered my immune system to a point which gave the herpes virus a chance to reactivate when the stress of going back to work kicked in…but the is my opinion only.

Shingles is the most painful thing I have ever had. Optic neuritis was a close second!

I hope your recovery is swift and the pain is managed to make it bearable.

4

I recently had painful tiny blisters,isolated swelling and welts. It got so severe that I had to see my GP. Turns out I had oedema. I too had weird tingling in the flank area and the feeling I was going to pop… I was on Aubagio for 5 weeks when this started. The doctor concluded it was the medication. Since removing the medication, the symptoms have slowly resolved only to have a minor flair today. No where as bad or prolonged as last outbreak, but still obvious. I actually realised that I have had the odd swelling of face etc here and there for a very long time prior to this major outbreak. My ms symptoms started with a deadly outbreak of shingles 10 years ago and I swear it’s still active… I have tumefactive ms. It’s a rarer and stranger syndrome. It’s easier to google it than me try to explain. There were a lot of unfortunate chain of events over an 18 month period. 1; aggresive shingles even in my eyes and mouth. 2; trauma with the death of both parents aged 52 and 57. 3; an abscess from root canal that caused a brain infection and has left an air gap in the pons area. 4; A work accident. Standing on a weigh bridge platform to hand trucks paper work, unfortunately the sun blinding the driver caused him to wipe out the platform with me on it. The trauma extended to other areas of course…

i still wonder if shingles was the pre disposition and all the other events just added to my already fragile immunity etc. Guess I will never know.

in saying that too, my father died of exactly the same symptoms as me but was diagnosed as having gout, arthritis, diverticulitis, hypertension, chronic pain etc… his mother ( my grandmother) died aged 42 of exactly the same symptoms resulting in renal failure and a kidney transplant. She died of major heart attack (same as dad) 9 months after kidney transplant. I believe the tumefactive ms is a genetic disorder. It’s only now with technology that this weird syndrome or disease is/ has been deemed hereditary.

Off the track a bit… sorry… it did have a lot to do with shingles though.

5

Shingles is a nasty thing. I got it in 1999; a few months later I got my first MS symptom in the same place. I have always felt sure that this was not pure coincidence.

It seems to me that, at the very least, they are both indicative of an immune system that isn’t working at all well.

Get well soon.

Alison