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hope7777 hope7777

Winning the PHN Battle?

Hello all,

I've been a lurker here for a while and have been reading your posts because my mother (age 50) has unfortunately contracted shingles on October 2017 on the right side of her face and scalp (including her eye). Extreme shooting pain/stabs, screams, sobbing, etc. Then the rash cleared up and we thought we were good to go. Unfortunately it left nerve damage and she struggled with burning, excruciating pain as well as many sleepless nights due to the extreme sensitivity and unimaginable pain. 

Fast forward to today, she's been taking acupuncture for about 3 months now, and has improved dramatically. These days, the pain she deals with is bothersome and very irritating rather than serious and painful. She can go most of the day without any medication, and if it gets bothersome for her in the evening, she will take some Advil. She is able to sleep 7 hours a day, and is usually well enough to light chores and walk around the house with 3 lb weights to exercise. The bigger issue at hand right now we believe is CFS (Chronic Fatigue Syndrome) but that is a different discussion.

However, reading stories on this page has frightened me. Even despite the dramatic improvement, my mother silently fears not recovering fully or quickly enough since each day has become very long and tiring for her. I wanted to ask other people who have been victims of shingles and PHN and gauge to see if we seem to be on a good track to full recovery. Please let us know, thank you.

5 Replies

  • bonnie94603 bonnie94603 hope7777

    http://www.patientcareonline.com/nervous-system-diseases/chronic-fatigue-syndromean-update-diagnosis-primary-care

    https://emedicine.medscape.com/article/235980-differential

    These articles can guide you a bit. Has your mom had the fatigue for 6 months now? Has she had her thyroid evaluated? Consider seeing a rheumatologist. Find the best internal med doc you can find. Going to major medical center is always good. I was lucky enough to have Cleveland Clinic and Mayo Clinic satellite hospitals in my area. It looks like CFS follows a viral infection......like shingles. It is a diagnosis of exclusion, not inclusion.

    Your mom has to consider that she may never fully recover. People can have PHN the rest of their lives. It isn't a quick fix. She certainly is improving and rather quickly, though. So that's good. Has her doc considered an antidepressant? Good luck with everything. Hope you are successful in your endeavours to help your mom.

  • babs99203 babs99203 hope7777

    Besides the pain, I'd say the worst part of this condition is the not-knowing and feeling not in control. So I can't predict when your mother will improve, it varies greatly. For some it may be 4-6 months out, others, like me, at about 15 months, there seems to be a noticeable improvement. I wish I had a better answer. I was diagnosed in October 2016. During that time, there'd be almost unnoticeable improvements after a few weeks, so I forced myself to be aware of even those. Mine is in my back and chest, so maybe I could brush my teeth with less discomfort, my shoulder didn't hurt quite as much after sitting for an hour. I'd take ANY positive signs. But I also found that I had to accept it would be a long haul, months, not days or weeks. That sounds discouraging, but in some ways a relief to see that I just had to wait it out. But when I heard of people who actually were almost pain free after 8 months or 18 months, it gave me hope.

    It WILL get better, it WILL lessen, but it will take a while and keep track of those small milestones as they will add up. It's also a mind game to some extent. I'm NOT a pollyanna or an optimist generally, but I had to stop myself from getting too negative. Read the PHN and Depression thread about CBT, it's very helpful. There are good tips for understanding that much of this is "right now". Say, Yes, I've got a lot of pain, but it's right now, it will change. Saying "I'll never get better" is both inaccurate and unhelpful. But accepting that some days are harder than others, some hours harder than others, makes it more tolerable.  Last month, I suddenly thought I WILL get better. That may sound odd, but up till then I was thinking of improvements, and there I was thinking that I could be if not totally back to my old self, at least much closer to it than I was now. BTW, we all have pity parties, just try not to stay at it too long and don't beat yourself up because you had one.

  • Jutebox32144 Jutebox32144 hope7777

    Hello Hope.  I feel for both your mother who is has and is experiencing the horribleness of shingles and you for seeing her in her current condition.  I can only bring my own experience to this.  I contracted shingles Oct '16 on palm of my right hand and in between my fingers. It left me originally with almost a useless hand and arm movement up to my shoulder.  The rash was only on palm and in between some fingers.  But the feelings of numbness and such would also go up to shoulder.  I was unable really to even hold a fork or open up a can.  My doctor sent me for occupational therapy which proved miraculous.  However as I am today, I am not 100 percent.  Maybe 90-95 percent back.  The phn has diminished greatly.  I use my hand and do have complete movement in my arm But my hand itself is not the way it was.  I have lost nerve sensation in hand.  Always feels like a weird sensation in my hand even though I do have 100 percent use of it.  A tingling or numbness on tips of fingers.  

    So I have great great hope that your mom will get better and better with each day.  I did fir the most part.

  • hope7777 hope7777

    Thank you all for replying, I very much appreciate that you took the time to respond! My mother started with a pain level of 10/10 (during her worst moments when the pain attacked her at its height, she frantically tried to kill herself by searching for a gun) and 4 months later, she is down to a 2/10 or 1/10 most of the day. If she wasn't recovering from being so exhausted or tired, I know she'd be able to go out and live normal life most of the day. It is just in the evening a few spots left in the previously affected area will start to bother her but tylenol or advil usually  helps with it. We feel that this battle is almost over and wanted to share that my mother has had about 50 sessions of acupuncture. This helped tremendously! Please let us know if you have any questions. We have so much compassion for anyone suffering from shingles/PHN, it's indescribably frustrating and disheartening. 

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