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Just need to talk.

Posted , 9 users are following.

angela98342
angela98342

Hi everyone i hope ur ALL doing well. Im so sorry to be burdening u all with this but i feel like if anyone can understand me its u guys. Its been very difficult for me over the past few months and honestly im doing my very best to fight it but some days its so much worse than others. No combination of medicine has seemed to help and only the combination of pethidine and morphine seems to only just take the edge off but within 2 hours of coming of this combo my pain level is sky high again. i have tried mind over matter and meditation but its just not working and trust me im so strong willed im scared of myself. I dont want to swap one thing for another(PHN for pain med addiction) but im so completely lost im in so much pain most of the time that its constantly written on my face i thought i was hiding it well but obviously not well enough. The way my husband and kids and very close friends look at me with sheer helplessness i feel so extremely guilty im trying to hide how bad the pain is but im obviously not doing well enough. Why do they have to suffer ALSO am i not suffering enough for us all. Plz help me does anyone else feel the same? If so how do u cope? I feel so much guilt. I just need to know that im not alone. Again i apologize profusely for my complaining but i dont know who else but a PHN sufferer would understand.

Dont worry if ur not up to responding i just needed to write this down and feel like at least im doing my best to make it through another day. Take care everyone my thoughts and prayers r with u ALL and tomorrow is another day.

0 likes, 32 replies

32 Replies

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  • matt90210
    matt90210 angela98342

    Posted

    hey angela ya been there am there 2 year aniversary for me was in feb for my second case of shingles im 39

    ya this is no fun but like the rest my family gets me thru and also the hope that it lessens like the first time i came down with it and it has very slowly the mindset to wake up with it gone is dangerous just a setup for a sad day i had to loose that mindset i suppose knowing frum healing frum my first round of this madness it wanes but over years my best advice is to keep busy with hobbies work excersise etc anything that can preoccupy your mind away frum it easier said than done i know no nobody other than fellow sufferers can understand us that sucks but it really seems like anyone i know has something debilitating my brother colitis my mother issues with her structure dad tinnitus and major teeth problems all very debilitating blows that have no cure either ive stayed away from any meds and all that nerves just take a long ass time i pinched a nerve in my neck took a few years not 100 percent but hell of alot better than when happened just power thru and know were all there doin the same we understand pretty cool actually 20 years ago even wed have nobody i have bad days where it seems to flare up cause of some weather change i think but always make it thru awaiting the good days my kids and my wife make my life rich someday it will feel better just cant count each day check my many other posts ive been therekeep your mind busy sending shingly love yiur wayi get u

    • angela98342
      angela98342 matt90210

      Posted

      hi matt im so sorry to hear ur so young and have this i was 40 when i got it i think thats what makes me feel worse cause my kids are so severly effected as i can no longer do most of the things i once could as a parent i feel like its my job to protect and sheild my kids but unfortuntly i cant predect when the electric shocks will start and they give me such a jolt im mostly caught of gaurde and look and sound like im in pain(which i am) but i have no time to get them to leave the room or suffer with no beautiful eyes filled with baby tears stairing at me looking to help. even hugging them is no longer possible as the slightess touch is unberable. i feel like a true failure as a mum. but i have to be brave and show them that life is worth every effort as i have been blessed with being here to watch them grow into beutifal beings. thoughts and prayers r with u and ur family my we ALL make it through a little bit wiser and kinder( yes u r ALL kinder for reaching out to me) everything is for a reason right angela

  • kimberly36176
    kimberly36176 angela98342

    Posted

    First of all don't ever apologize. That is what this board is for and I am so grateful that I found it. I found some treatment options to try that I didn't know existed because of this board. Also, to know that there are other people who UNDERSTAND what you are going through, is life changing.

    I want to share this with you and hopefully it can help. I was 36 when I got shingles. It is now 3.5 years later and after lyrica, gabapentin, low dose anti depressant, capsacin patch, acupuncture, thoracic nerve block, epidural nerve blocks, radio nerve ablation and a spinal cord stimulator implanted, I thought I was all out of options. And that SUCKS. The only relief that I could get was taking Hydrocodone but refuse to take during day so I will suffer. Until a week ago. I started taking CBD oil. I am in the US. It is legal here. I get it from a company called Lazarus Naturals. I am not one to promote something unless I firmly believe it is going to help. Well yesterday (my PHN is on my left bra line), I was able to wear a normal bra ALL day long and NOT one flare up. It has only been a handful of days but I will take it. I am praying it will continue to have these effects as I have not felt this good since before Shingles. I am trying to go back to school and to have the flare ups kill my concentration was destroying me. These people are amazing, also, as I lost my job a year ago and they have a financial assistance program, as well. I even emailed Novartis to try and get in on their study they have for a new medication for PHN but it is not in the states and they cold never give me a straight answer but to talk to my doctor. I just want to tell them, yea, you don't think I have already been doing that for years. I hope this is something you can try. I don't know if it will work long term or who it may pick and chose but to have the quality of my life back that I have been feeling and sleeping great for the past few days has been more than worth it. I hope this can help and I am here for you. You got this.

    • babs99203
      babs99203 kimberly36176

      Posted

      Kimberly, we have PHN in the same area, you've had it a year longer than me. I can't remember if our paths have crossed here before. I had no interest in CBD oil at all. I am having such a difficult time with the gab side effects I don't want to ever take anything that could possibly cause a reaction or affect my cognitive skills. I don't drink because I don't like the feeling.

      BUT, when I read you can actually wear a bra...wow. THAT may be the best reason to try it. To others, particularly a man, this may sound like I'm joking, but I'm not. This disease and treatment takes away so much, and adding to that the in-dignity of feeling comfortable in our clothes, is the final straw. I've had to get a whole new wardrobe of clothes that disguise my "lack of undergarments". I'm not a super-modest woman, but that's one more thing I didn't want to deal with. I sometimes change my clothes several times a day because of the pain, and that's without wearing a bra. You may have convinced me to re-consider this.

      Also, thank you for considering to volunteer for the new drug, it's called something like EM 800, right? I wouldn't do that. You're a brave person.

    • angela98342
      angela98342 kimberly36176

      Posted

      oh kimberly my heart is breaking for you now 36 oh my gosh ur life is just begining i dont live in the states otherwise i would be in the front of the que(sorry i would have pushed in front on u) all the above things u have tried i to have given a go but again no response was favirable if anything when i had my nerves burnt with the pure alchol it has made the pain even more pronuned. ur at least lucky u can wear a day time bra i cant ware any and trust me people would pay me to put my bra on not take it off. ok so i no i kiding but honesty on the bright side its saving me a fortune on clothing because as soon as the kids go to school i have to undress as anything near the effected area kills me. im praying for u that this new treatment works for you as far as norvartis i applied but the trial was cancelled where i am in europe so please keep us posted on ur progress maybe if we can afford it and push comes to shove we might immigrate desprate times calls for desprete messures right look after yourself i hope to hear all about ur progress fingers toes and anything else i can muster r crossed for u. angela

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