Post herpetic neuralgia: Hi does anyone out... - Pain Concern

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Post herpetic neuralgia

5 Replies

Hi does anyone out there have this this phn pain

After having shingles how long will it last any tips for pains

5 Replies
ukmsmi4 profile image
ukmsmi4

Hi

I don't know if I have post herpetic neuralgia but I had shingles around 15 years ago. Mine was down my left arm from elbow to finger tips, including one blister stretching around the fingertip and down the right hand side of the nail on my ring finger and another blister that started at the base of the finger nail on my index finger and took about 6 weeks to work it's way under the finger nail to the finger tip. I can tell you that was excruciatingly painful.

For me the tingling and numbness and occasional pain has never gone away and is particularly bad when I have an ME or fibromyalgia flare up. As far as I am aware once the nerves are damaged they don't repair so you don't get rid of the disruption to sensation in affected areas. But if anyone knows differently I would be interested to know.

Margaret :)

BeccaWhite profile image
BeccaWhite

Hello.

I have had shingles many times, first time when I was 14, am almost 42 now, and I suffer from post herpetic neuralgia as well as many other disorders.

It really depends on the person as to whether they will suffer long term from this or not, I have known many who have had very bad bouts of shingles and not suffer any long term pain after the three months or so period of disease burn out. Others have gone six months, some twelve, some life long and some simply a matter of weeks !

It really is very random and depends on the damage to the nerve root and how best your body has dealt with the virus.

As you no doubt know, shingles is the same virus as chicken pox. After having chicken pox, the virus lies dormant in the spinal area until it reignites ( in some folk, not all ) and it may or may not reactivate in you again. Just because you have had it once, it does not mean you will never have it again. Dr's always used to say it was once only, but that has been proven to be a nonsense !

The best thing you can do is to consult your Dr and ask their advice about the pain and, if it is causing you a lot of problems, they may give you something like amatriptyline to help.

It's another unfortunate thing that is a case of " getting used to " and that is very hard to do when you gave to live with it, day in, day out.

I wish you all the best.

Rebecca.

in reply toBeccaWhite

Thank so very much for your reply living with pain is very difficult and must be for yourself I will take your advice and ask about the drug amatriptyline with my doctor I was given gabpentin 300 mg is this similar lhave just ran out thank you

BeccaWhite profile image
BeccaWhite

Gabapentin is similar and I think preferable, so maybe ask for some more if it suits you ?

I am taking 2700 mg of Gabapentin a day for my pain issues, plus 75 mg Topamax and 1800 mg Nefopam. I also gave to take other medications. But I have a variety of illnesses and other neurological disorders/nerve damage.

I hope your Dr helps you 😊

Kate-L profile image
Kate-L

Hi Rover123 - I've had PHN for the last 11yrs, following a bout of shingles which I caught after having surgery. For me, the PHN has affected me right down the left side of my torso and I'm now treated at a Pain Clinic who do their best to help me.

Depending on where your PHN is, you could try Lidocaine patches - these are non-invasive and can now been obtained on the NHS. These used to work really well for me, but having used them for such a long time I have now developed an allergy so I can only use them sparingly and when the going gets tough! I also take 150mg Lyrica x 2 daily, 100mg x 2 daily of Carbamezepine and for those really bad spikes I have Oxynorm and Oxycontin. These are both A class controlled drugs and should really be prescribed via your pain clinic, although my GP stepped in and gave me these when my pain became just unbearable. I have another suggestion - there are two great PHN Facebook groups which you may find really helpful. It was a little sad to find out that worldwide PHN is treated more or less the same (except Australia), however I've found these groups very, very helpful and I'm sure you would benefit from joining. I hope you get some relief from your pain really soon

.

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