PHN-life and death

Hi Anne, you have two options for replying. Click on the "reply to..." in that conversation, or further down, it will say "reply to the Roka (or whomever started this) conversation". I'm just guessing here, but maybe cause of the weight loss, they want to verify there's nothing they can see dealing with the digestive system. If the focus is the weight loss, there are many different routes they could do, different types of tests, to get the answers. Yes, it's not fun, but I think it will be better than he expects. The method of sedation varies, but feel free to ask the doctor about any questions you have. Some doctors and patients don't want details, as they feel ti raises the apprehension level, for others, knowledge is power and it helps prepare them better. I'm that type, generally.  BTW, I've worked in healthcare as a medical secretary so I have some general knowledge but I am NOT an expert.

Another update! I forgot I hadn't replied to your comments Charlie and Babs, apologies. My husband said the test wasn't too bad and all they found was that he had mild gastritis. He's put on a bit of weight since and the weight loss problem was put down to the fact he's depressed and stressed because of the painful shingles Post Herpetic Neuralgia he has, which unfortunately still hasn't gone.

Thanks for the update, I often wonder how things turn out for people. I too have PHN, it can be difficult to treat because the meds can cause unpleasant side effects. But for many people there will be an improvement and possibly almost a total elimination of the PHN. It may take weeks, months or years, but it's important to focus on even those incremental changes.

I understand we all understand

have to go it out now

will get back

I’m a fan of topical creams, as I don’t like adding meds that have side effects unless they are necessary. Two creams have worked well for me. Aspercreme and triamcinolone acetonide. The first is over the counter in the US. The second is prescription, and usually used for eczema. The TA cream is best. Worth trying. 

PHN does get better with time, but very slowly. Many of us here have had it for years. Mine is no longer extreme, 

the pain seems relentless,driving on bumpy roads is agony and couldnt bear anyone to hug me,I have been in a bad road accident and had a few operations and had babies but this is the worst pain that I have ever had.

I believe it is not good to eat oats,chocolate or drink coffee,how long should that go on? I am still not drinking more than one coffee daily and have not had my normal breakfast of homemade muesli since beginning of shingles and cant find any information on the  length of time I should keep it up.

i had an abcess under the beeast which has cleared up but still sometimes use the antibiotic cream on it as it is still red. 

Hi Ann, Charlie's a terrific guy and wonderful resource here but he knows nothing about bras! Well, not at least how they pertain to shingles and PHN. I feel your pain, literally. My shingles in October 2016 was the nerve that went around from my back to my breast. I only had four tiny, tiny bumps on my breast and maybe one or two on my back. But the rash is not reflective of the pain in the nerve. It took me months to realize I couldn't wear a bra! I think when you're ill, you just don't think of it, and it's just one more piece of this miserable condition that takes away your dignity and your essence.

But instead of thinking that way, I made my peace with my new "freedom". At times (TMI, I know, but I've learned this from other women too) there is additional discomfort in the breast from the weight of them being unfettered. However, my pain was decreased without the band. I had to buy new clothes to disguise this. Tight, solid color clothes don't work, obviously. I now have prints and looser clothing. I bought some camisoles about 2 sizes larger to make me feel a little more modest, i can put those underneath.I also found that bras that close in the front, for some reason are more comfortable.

I did purchase some bras last summer, thinking I could use them as I felt very self-conscious once it got warmer and I wasn't wearing a lot of winter clothing. But it was still too uncomfortable. I shopped the sales to find new clothes so now I've got two sets of clothes, my PHN clothes and my old clothes. Also, you may have problems with any type of pressure or contact with clothing. It's called allodynia. I only developed that more recently, and it was fairly minimal compared to what others had. But I couldn't wear anything tight or tops with heavy cowl necks or hoods.

I'm really sorry to drop this all on you like this, but I wish I had known it a year ago. The good news is that you're still in the early stages of recovery and you may not develop a long-term issue. I tried to remember every little improvement, which is hard. It can take weeks to notice that something hurts less or that you can do something more easily. But appreciate every little step.

This is a hard condition, physically and psychologically. There will be ups and downs but it's a long road to recovery. But there IS recovery, in different forms for different people. I am SO much better than even two months ago, which I never expected.

I use Aspercreme like Charlie, also 1000 mg Tylenol 3 times a day, plus a previously prescribed NSAID. I'm also still on gabapentin, which I caution against. Yes, it helps with the pain a bit, but opens a Pandora's box of all kinds of other things. I'm slowly getting off it but have memory issues, and about 20 other things.

BTW, avoid over activity that aggravates the area: lifting, bending, twisting, using those core muscles and reaching. I couldn't even lift a glass of water, I had to use a straw. But I learned both from doctors and my own experience that the calmer you can keep those nerves, the less pain you'll have and the better you'll feel (and it makes it easier on your family if you're less miserable too.)

The rest of my reply 

i cant get Tylenol in Europe but know how good it is from when I had a tooth abcess drained and tooth taken out in North Carolina.I have changed my co codamol from two four hourly to one three hourly but nothing really works,like you I dont like Gabapentin,I tried it once for something else and hated it.So its co codamol and Amytriptaline mornings as it keeps me awake and cant take at night.I put antibiotic cream on still where it is still sore.

i did wonder about front opening bras but they seem to be for post natal women or mastectomies and are very expensive.

i do have alopynia and its awful,cant bear clothes touching me.I shall send for the cream that you recommend,it is only available through Amazon and comes from US.

Thank you for writing,there are several good ideas in your reply and just knowing other people have same problems.

Hi again Ann, I thought that generic acetaminophen would be available world-wide. I've heard of others who have had good luck with Amytriptaline, it was never suggested to me. I thought of more about bras (sorry Charlie). I did use bra extenders, which are just like the back closures, but without the bra. You just add these to your current bra. However, I had to add 3-4 of them to even stand the pressure, then the straps usually fell off. The bra I did find some luck with is Bali 1003. The forum doesn't allow links, so I can't post it. You'll see that is a very wide band, with 5 hooks in the front. It helps distribute the pressure, but I still added a 4 hook extender. I've only just now really been able to wear it for 1-3 hours (I've heard the same for other women too). The actual size I got was only 2" larger (42 vs 40) bu the extender added 2". I could tolerate it, sort of, last year but realized I'd rather look, ahh floppy and not like myself, than be in pain.

I compete in ballroom dancing, at a fun, amateurish level, but it's kept me sane. I had to stop for about 6 months, then go VERY slowly. But at a lesson with a new instructor I told him that it was only recently that I could stand totally straight without pain. I didn't even realize it, until we worked on my frame. So, that IS good news, as it means I'm still improving. You just have to measure it in millimeters, not yards. (oh, or meters).

I forgot to mention, I have NO idea if the Bali Bra would work for you. I have to try on 20 before I find one that fits, but it's not too expensive and it gives you an idea. Other types are the racer back type. However, I'm 5' 8" tall with a normal-to a few pounds over-weight build so I need a larger bra and it's hard to find anything loose enough.

I have been staying on the diet recommended by doctors of no coffee,oats etc and dont know if I should stay on this or not,I usually drink coffee several times a day and have breakfast of homemade muesli and dont know if I should carry on with this or not,do you have any idea if I can go back to my normal diet?

I will look at the Bali bra online,I am in UK so dont know if its available.

I know others find that eating specific foods an avoiding others (such as nuts and chocolate) help. They also recommend certain vitamins. I've read of a high Lysine low Argine diet, you can Google it. Many people think it helps.  I've never tried it and haven't seen a noticeable difference if I eat chocolate or not, but it's honestly nothing I felt like looking at. I feel I've got enough to deal with I'm not adding a special diet to it! Call me an ostrich, but that's me.

My triggers tend to be physical, moving the wrong way etc., stress, clothing and getting too worn out or dehydrated.