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PHN under the bust Calling any woman

Posted , 9 users are following.

jocelyne44618
jocelyne44618

As many of you know my pain PHN is under my bust round the back and up to my shoulder blade.. Its been going on since June last year and well we are in April almost   I dont know how I can cope any more.   Im so low my family dont want to know, My school will  go mad when they get the post to see my doctor has signed me off again.  Im requesting /Are there  any answers  How can I make my right breast keep cool,  Im lets say quite big up top and the weight and heat on the underside so painful, Its not the right place to put an ice pack when you want to work, or drive the car or go shopping.  I use so much talc, but the heat increases.  Has any one got a solution, I tried and keep on trying to wear a bra but with in 30 minutes Im ripping it off.

I have got to the stage of feeling no hope and low, im now feeling so low  I feel I could just call it a day, no help from my doctor or the pain clinic.  I dont see an end to this. I have cried so much that my nights and days seem to roll into each other day  I shut myself in doors and  in bed, not interested in eating, just drinking water. Today is the first day I have managed to get out of bed but short time after sitting in the living room im in pain again.WHAT IS THE POINT??? its taken me 3 attemps in typing this today. now back to bed.  

2 likes, 15 replies

15 Replies

  • jana02303
    jana02303 jocelyne44618

    Posted

    My pain isn’t quite the same location as yours, but is right in my armpit, so I know what you mean about an awkward place to keep an ice pack.  It’s so strange that mine is relieved by heat while yours is relieved by ice, but I’ll tell you what I’ve been thinking about trying and maybe you can adapt it for yourself:

    I have been using “rice packs,” which are basically little pillows stuffed with rice and made out of cotton flannel fabric.  They contain enough rice to be nice and floppy and squashy.  I put them in the microwave and then tuck them under my arm, and they stay warm for hours and are very soothing. I was thinking of making up some smaller packs, then creating some kind of harness to wear under my clothes to keep the rice packs in the right spot.  I could heat up a fresh one in the microwave at work every few hours and then head into the bathroom to swap it out.  I haven’t done it yet, but I”m considering how it might work.

    So, maybe you could make up a harness that would hold a small cold pack against your skin while you went about your business.  Maybe you could get something like this:  

    It says it can be cut into any size and reused over and over, so you could make just the size you need and keep them all frozen except the one you’re using right at that moment.  

    I’ve also been told rice packs work well as cold packs if you put them in the freezer instead of the microwave, but I haven’t tried that.  MIght be another option, though.

    Just a thought.  I hope you can find some relief.  I’m grateful to have what appears to be a mild case, but it certainly is a miserable condition.  

     

    Emis Moderator comment: I have removed the link(s) directing to site(s) unsuitable for inclusion in the forums. If users want this information please use the Private Message service to request the details.

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    • jana02303
      jana02303

      Posted

      I should have read the rules before posting a link to a product.  You should find it back along with similar items if you google "flexible ice mat" or "flexible ice blanket."  
    • jocelyne44618
      jocelyne44618 jana02303

      Posted

      Hi Jana  thank you for writing to me  I see and understand that things are vetted on here  please could you send me details via the  private message way  Im in so much pain all the time any help would be great.

    • ruth57682
      ruth57682 jana02303

      Posted

      I also have horrible pain in the armpit and breast.  About how big is the rice pillow that you made for the armpit?  That area is so sensitive that sometimes I want to cry, it's so painful.  I also have it on my back and trailing under my arm and over one breast.  I will also try the rosemary oil. Thanks

    • ruth57682
      ruth57682 jana02303

      Posted

      How do you manage to actually go to work with this pain.    As if the pain wasn't enough, my energy level is zero.  I am retired and can hardly do what is necessary around my home.  Even if I get a decent nite sleep (which is rare), I am tired all day.  What's your secret??

  • jana02303
    jana02303 jocelyne44618

    Posted

    Another thing you might try:   Rose Geranium Oil. Evidently there was one very small study of this essential oil that had shown some great promise, but it doesn't seem to have been repeated for continued testing.  I got some and tried it on my skin, and I do think it helped.  If nothing else, it smells very nice, and is also said to have anti-depressive qualities, which I need almost as much as pain relief during flare-ups.  It's completely painless, unlike capsaicin cream.  I found a small bottle at the health food store, but you could order online too.

     

  • pam27550
    pam27550 jocelyne44618

    Posted

    I sure understand your pain.   I had it on the right side for many,many months.   Pain doctor said because of the location,a nerve block was not recommended.  Too risky.   About a month ago, I got it on the left side.  This is my 3rd round of shingles!  And I never break out so don't always know I have it until I have it.   Miserable.  

    I use lidocaine patch under my breast on the days I go to work but before my day is over, I am in misery and ready to get home and take it and my bra off.   I use an ice pack at night.  And I can't reach to put one on my shoulder/shoulder blade.  My doctor tried me on amitriptyline (sp) and it is very good at giving me relief but also good at making me sleepy and leaving me in a zombie state.  

    I'm not sure there is anything to help.  My doctors have tried about everything.   Anything I read on here or online and discuss with them, they are willing to try if I want to.  But I can't be a zombie.   Resting is about the only other thing that helps to a degree but can't stay in bed all of the time either.  

    Of course the severe pain does nothing to help me control my blood sugars and just makes me more depressed.

    If I had a significant other or income coming in besides mine, I think I would quit work but I don't so I have no choice but to just tolerate it and go on.   Not an easy task at all.  It's so awful that I wouldn't even wish it on my ex-husband!!! 

    I hope we all find some relief soon!

    • ruth57682
      ruth57682 pam27550

      Posted

      I was wondering if you also are tired all the time. You mention going to work, but I can't imagine doing that.  I am retired, but can hardly function around my home as I am exhausted.  Even if I manage a decent nite's sleep, I have no energy.   What's your secret??

  • ron96331
    ron96331 jocelyne44618

    Posted

    Don't allow yourself to get like this Jocelyne. I would stop everything to do with your work, write to them saying sorry, the priority is your health. Don't think about your job, give up on that, your focus is on the condition. I have it on the right side of the head, so I have a permanent headache. It's impossible for me to do anything unless I first accept the condition. For me, understanding  the problem comes first, before anything. Collect information from the internet about PHN, think up new ways of keying in questions in google. Read everything, store it, print out if you like and create a library. After a few years you become an expert. Nobody will know as much about this as you, and other PHN sufferers who have decided to do it this way. Make it your main hobby.

    Take care of yourself

    ron

    • jocelyne44618
      jocelyne44618 ron96331

      Posted

      Thankyou Ron, for your words, I read every part of this site, and yes sit scares me, when I read how you and others suffer, over the years. Before this happened I used to think I was a young 62/63 because of working with senior school age students. now I feel old . I struggle to walk up right and carry student work books and being able to rush to the next class lesson/room or do things at home.  Im alone now and I struggle to carry or do simple things like hoover, go shopping.

      Thank you Ron for your thoughts  Take care Jocelyne   Cambridge UK

  • jukym
    jukym jocelyne44618

    Posted

    Hi dear Jocelyn

    How can people are so insensitive towards your condition and it is a kind of pain that words could not express . It is destructive to the mind and I felt you should go to a specialist for it.

    Get your present doctor to refer you to a specialist and do some blood test too,

    It is the immune system that is low....p;ease do not stay indoor ot hibernate in your own bed.

    I felt swimming is a good form of relieve,,, and do some exercise with good supplement.

    Do remember that you must stay strong and I would reccomend Lavender Oil and plaenty of Green Tea too.

    Try to visit a Registered TCM doctor for accupunture too,

    It is an expensive affair to keep the immune system to be back to the top bar.

    1- Enough Sleep

    2- Right Diet with no nuts and heavy spices like chillies or deep fried food

    3- Supplement like Fish Oil, Garlic , Tumeric, Lysine , Olive Extract...( u could start with Vitamin C and Fish Oil or Tumeric)

    4- Exercise on regular basis as least 2 times a week....

    5- Drinks enough of water ...minimum 6-8 glasses of water with a 2 slice of lemon.

    6- Get your pain killer medication too.

    7- Wear Genie Bras with loose tops

    8- Keep yourself cool and stay Positive too

    9- Ice Pack Too

    10- Apply Peppermint on the shoulder blade as acooling agent.

    I hope you get well soon and must conquer your state mind too.

    Jukym

  • susie00218
    susie00218 jocelyne44618

    Posted

    I completely understand how you feel. Most days I’m feeling down because no one around me seems to understand what I’m going through. It’s getting really hard to stay optimistic that this will go away. I have been suffering for PHN since May of last year. My pain is mostly in my lower right back and down my leg. Today the pain is finally letting up after two days of being in bed and not wanting to do anything. I cried a lot yesterday because the pain was so bad and I was feeling really down. I started going to physical therapy about a month ago to focus on pain management and strengthening my core muscles. I have found that the breathing techniques are helpful in relaxing me when I have flare ups. It doesn't make the pain go away but it helps to take my mind off the pain for a few minutes. Try inhaling through your nose, think of filling your belly with air and exhaling through your mouth and letting all the air out even when you think there is no more air. You’d be surprised at how much air you are still holding in.

    Try to stay positive. It’s hard especially during flare-ups but one thing that I am working on is saying outloud what you are grateful for today. Saying it outloud is supposed to help improve thought patterns rather than just thinking it. Just remind yourself the good things you have going for you. Another thing to keep from feeling down is going outside for a walk. My physical therapist wants me to go for a walk outside everyday even on days that I have flare ups. Even if it’s just to the mailbox. I admit I did not go out  the last two days because the pain was so bad but will try to today before the sun goes down. I hope we all find a way to manage this awful condition. Take care!

     

  • Misstickle
    Misstickle jocelyne44618

    Posted

    I' m the carer for my partner ( male) who has phn in exactly same areas as you. With all poss medications, he's had no relief from the pain for 4 months now. Because of other conditions (copd) he's on oxygen 24x7 and is so breathless can't even dress himself. With this dreadful phn pain on top of everything else his life has almost become unbearable. I've spent weeks looking for answers on the internet, and recently came across a recommendatiion for acapuncture. He'll try literally anything, though of course this does cost money. His lovely Chinese acupuncturist says he must have 6 weekly sessions, and he had the second one yesterday

    Obviously still early days yet, but he says it has made a difference, giving him some slight relief for a couple of days or so after the first session. Yesterday, again he said the Pain has "changed" and this treatment is definitely doing something. It is giving him hope that the phn torture may actually go away after more treatments. Though I'm not the 'victim' here, I would definitely recomend giving acupuncture a try. I found ours from the official national organisation of acupuncturists ( can't remember what it was called). The total cost for the 6 sessions is around £250, but obviously that will vary. Frankly, from witnessing his dreadful suffering, you can't put a price on anything to ease it. Of course nothing is guaranteed, but there is apparently a pretty high success rate. Hang in there!

    • ron96331
      ron96331 Misstickle

      Posted

      Sorry to hear about your partner having so many hardships. You have my sympathy, both of you. I have to say that since I wrote that email I've formed the opinion there's no immediate cure for this. I've heard about acupuncture from others and have yet to hear of any success story. It could be there's a possibility in Eastern medicine and Homeopathy and we haven't heard about successful cases because it takes too long for patients to remember to update on this notice board. Or that once they're cured they dont return to these messages? The problem about alternative medicine and cures is it can take a very long time. You mention that after the acupuncture he feels different, it's interesting because I noticed some change when I started homeopathy. It's possible that these kinds of cures do have an effect on people who are doing these curative sessions for the first time. And the practitioners themselves feel quite it's possible to be cured but they say it could take years for alternative medicines to work. So it's not encouraging and this is why I'm not feeling very optimistic. Anyway, I'm going ahead with 3,600 mg Neurontin per day and 225mg Lyrica per day. Sometimes I go over that. It keeps the headaches in check for most of the time, but I'm aware that I'm increasing the dosage and there'll come a time when it doesn't work any more. I hope your partner finds some relief and is able to have some comfort at least. Thanks for your reply... r  
  • Pinsklip
    Pinsklip jocelyne44618

    Posted

    Jocelyne, I was just writing to see if you were ok, if anything has changed/improved? My thoughts are with you...
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