Periods of remission, feel hopeful, then hopes dashed

Thank you so much for your responses. The affected area for Stuart (my partner) is on the left front chest then a large patch covering most of his back.  'Geezee' mentioned Pregabalin and Duloxitene.  I can't remember if this is a UK wesite or not, so don't know if these drugs are available here.However,  I am speaking to the surgery again tomorrow and will mention these drugs.  We're keeping positive - it's the only way!!

Jana You and I are like so many others who are painful suffers  I have been in pain for just under a year, like you I try to do things but im not sure if its my age 62  It is making every job I try to do in my home life  very very hard work, I have to keep on stopping, because it seems like I fight the  feelings and then get so much pain  I want to cry out loud.  which is not good when Im shopping in Tescos... Im sure people think Im a drunk,  To day I had to go and pick up my months drugs (LEGAL) all made up in medi boxes, I am lucky because if I had to pay for my meds I would not survive.  My job well it lookslike I will be leaving  that because I cant walk around in a senior school to lessons half curled up in pain.  NO ONE UNDERSTANDS pain like we have .  Jocelyne  From Cambridge  UK

I can identify with a lot of what you're saying jana.

For examplethe soreness, super sensitivity and tightness around left side of forehead, eyebrow and scalp is beyond words.. I have days I think I'm coping, but other days, and yesterday in particular, I completely went to pieces, crying, distressed, havnt had one of those days for a while. Sometimes I get to a point that I'll always have this PHN.

Sorry to sound so negative..

totally agree with all your comments jana but you certainly wouldn't wish for continued itch over pain!!!!

I am feeling hopeful.  Not because the pain is gone.  In fact, a week ago today I had a flare-up that lasted for days, and I'm certain that only thing that kept the pain from being as intense as usual was the capsaicin I've been applying 4 times a day for 3 weeks. It still burns and stings a bit, but it also seems to contain and take the edge off those awful tantrums my nerves like to throw.  So, I am hopeful about capsaicin, but even more because of some information I found, quoted below:

"I'm beginning to feel a little better. What will my recovery from PHN be like? Attacks of pain will alternate with periods of relief, and the attacks will gradually become shorter and less intense, while the pain-free periods become longer. The process may extend for months, but once the pattern becomes comes established, you can at least be reassured that eventual recovery is on the way."

Mary-Ellen Siegel;Gray Williams. Shingles: New Hope for an Old Disease (Kindle Locations 1020-1023). Kindle Edition. 

I do so hope this is true.  It may still be that this is a lifelong condition for me and I need to learn to be thankful for and take advantage of the periods of remission.  But this sounds so much better.  It's the most encouraging thing I've read in six months of combing the Internet!

This was a very helpful post. I just wondered how you were feeling now Jana. The last post was about 6 months ago. I am 37, My experience started last June. I suddenly felt a stabbing pain between my shoulder blades and the base of my neck with no injury or eveident cause for this pain. Within a week this pain was at a level 10 or higher. Took my breath away. I described it as a HOT fire poker hooked into my back. My shoulder muscles were inflamed and sensitive to the touch. My right arm was numb and tingeling.  I went to the Dr. and was prescribed Physical Theropy, and given a steriod treatment. Once i fished the steriod, three weeks after the pain started,  I broke out in a rash on the right side of my face. I have had experience with blistery rosacia before and this felt similar to that, And having been given a steriod, i thought this medication triggered a rosacea flare up. But I noticed it was just my right side same side all the pain and numbness was. This was not tipical for my rosacea as my entire face breaks out when this happens. So i endure three more weeks of PT and this facial rash. I notice my Physical theorpist poking at two spots on my back exactly where the intense nerve pain started but again, I had no idea this could be something other than a blemish. (my skin sucks and these to me were  not unlike pimples).  But I did have the though gosh, i wonder if those are some kind of pain blisters from this nerve pain i am having. SO by the end of JULY, the nerve pain has subsided a bit, from a 10 to 4-6 depending on the day. My arm was less painfull and no more tingling. BUT I was now experiencing a very unwell feeling. Sleepy, crabby, and there was a new sensation in my chest and neck and ear. A dull ache and tightness. Thinking i was for sure dying, I returned to the dr, and requested more tests be done as i just had this feeling of being so unwell. I was very blue and depressed also and hadnt slept through the night in over a month. My dr asked me questions typed info into her computer, said she would order a few more tests for me. I asked her about the break out on my face and if it could have been caused by the steriod and she FINALLY looks at me, and said Oh you have SHINGLES!! SHe examined me and asked me about the two spots on my back being exactly where the most sever pain started and prescribed me with Motrin 800 and a low dose of Gabapent. She warned me that i may be looking at PHN as well. I inititally thought this DR had lost her mind. What is a 37 year old doing with Shingles. I had no idea people my age could even suffer from this. So I went home, convinced I had just seen the worst DR in the world, until I started researching. The most informative info is how different this is for everybody, and how improtant it is to share your experience.  Today is November 3rd. I had been feeling so much better. I could tell that my discomfort was less and less, My face has mostly cleard up. Though I have scarring and under the skid bumps still, My energy was up and though I could still feel like a buzzing reminder of this pain,  the slight reminder that I had this ailment. I was starting to feel like my self again. Then this Saturday i got a bad head ache over this past weekend, and have about a level 5 discomfort flare up in my back where the nerve pain was, my chest neck throat and ear feel inflamed, tight, achy. So to read your description of how it comes and goes is very reassuring.  I agree that this effects mental health, As when i start to feel unwell again, my mood goes south. I also was concerned that my pain was not where the rash was, yes my face was uncomfortable but as you would expect it to be in its condition, the burning nerver pain was near my spine between my shouldblades only on my right side. My sympathys to all who suffer from this invasion. There is nothing easy about this. I am just barly able to funtion on my normal tasks. But As a mother of two young girls I  just dont have time for this. Again, Thank you for sharing. I hope to hear how you are feeling.