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Bad Shapei

Posted , 5 users are following.

lisa65143
lisa65143

i am in really bad shape now. I need support. There is no end to this . I am still suffering beyond the pale after 6 years. Only a few things mitigate the pain, but the pain is always there.

it is si and to accept, but accept I must, I am going to br in misery until my dying day, snd I hope it comes sooner thsn later because the pain is just as bad. Now as it was 6 years ago.

 

0 likes, 23 replies

23 Replies

  • Merry19451
    Merry19451 lisa65143

    Posted

    Hi Lisa,

    I am so sorry you are suffering. Do you have Post Herpetic Neuralgia PHN or recurrent episodes of Shingles?

    May I ask your age and if you are immunocompromised? Where is the location of the initial pain and rash? What are your current symptoms?

    What are you doing to mitigate the pain? What medications with dose are you on?

    I have had Herpes Zoster-Shingles in my right ear every three to five weeks for the past twenty one years and twice in my right eye.

    I am a Nurse Practitioner in the States.

    I can suggest certain medications and therapeutic measures and consultants so you can advocate for yourself with Physicians.

    I look forward to hearing from you.

    Merry Juliana

  • clive63734
    clive63734 lisa65143

    Posted

    So sorry to hear this ,my pain was subdued by taking 2 paracetamol and 1 Ibprofen every 4 to 6 hours and it did work at least it did for me .I do hope this is of some help to you and please let me know if it works.

    All the best of luck

    Clive

  • lisa65143
    lisa65143

    Posted

    Thanks. It is hopeless. I have. PHN for six f..years now. In my head. There are no more pain meds good enough. No opioids no legal pot, nothing helps.

    i wad a swimmer.

    i can’t swim, I cannot wear a cap...I cannot allow any foreign substance near my eyes.

    i know I have a life sentence imprisonment and there is no hope.

    • lisa65143
      lisa65143

      Posted

      I read Merrys post. Thank you, I am curious as to what meds would help.

      if I had access to heroin I would willingly become a junkie no questions

      .

  • Merry19451
    Merry19451 lisa65143

    Posted

    Hi Lisa,

    I would be interested to hear what medications you are currently taking. You need to take several together so they work in concert to help lessen the pain. There are also nerve blocks performed by pain specialists for intractable pain. You need to go to a pain center at a university medical center for help. Where do you live?

    I have had to come up with my own "cocktail" of medications over the 21 years in order to thrive, yes, thrive. My Shingles are in my right ear and eye. Perhaps I can help you find a pain practice to get you some help. It is depressing to have excruciating pain all the time. I know first-hand the agonizing pain of Shingles and from other issues. Please let us help you, but we need some information. I know how bad pain is, but I also know that there are medications taken together that help. Blocks also can work.

    Best Wishes

    Merry Juliana

  • babs99203
    babs99203 lisa65143

    Posted

    Lisa, I'm very sorry you're dealing with this, as we all are, but as Merry suggested, there IS hope and there are some treatments that can help. It would seem you have PHN. You may want to read some of the posts in that forum. I've only been dealing with it for about 15 months, but some there have had it for 15-20 years. If you read some of the threads there, such as PHN and depression or CBT Cognitive Behavior Therapy, you'll see that there are good days and bad days. Some things that help, others that don't, but you're not alone in this.

    • lisa65143
      lisa65143 babs99203

      Posted

      My doctor is the head of Neurology. Of Mt Sinai Hospital in NYC. He has no meds to offer other than opioids and legal pot. Of course I have PHN , I have had it for 6 years. Tegretol is a total waste of timel pain blocs are not permanent nor that successful. I resolve to become a heroin addict. There is no hope so I might ad we’ll become s junkie
    • Merry19451
      Merry19451 lisa65143

      Posted

      Lisa,

      I have cared for individuals with substance use problems, including those using heroin. When using heroin, you need a higher and higher amount to chase the pain. It is an expensive habit you cannot afford. But you already know this. You pay with your body, your spirit, and any savings. I suggest strongly you seek help with a Neurologist and Psychiatrist. There are combinations of medications to help you.

      Best Wishes

      Merry Juliana

    • lisa65143
      lisa65143 Merry19451

      Posted

      I would like t know what combo of meds you think might work.

      like what.

      there aren’t any besides opioids.

      there is no way an otc will help.nor cymbslta, neurontin,, 

      please inform.

      i wish those with this curse would understand the pain I am in,,,it is in my trgeminsl nerve Center,,the worst worst worst possible place.

      and how exactly will a psychiatrist help..they know nothing about emotional or physical pain and only know how to write up dope. I have been through the ringer. I know it all sadly, the sooner I die the better, I cannot live like this.

      thanks for letting me know what meds I may have, but not likely, missed.

  • lisa65143
    lisa65143

    Posted

    I have a therapist, he cannot help my pain. No one can, there is no end to this, my life is dead and I wish I were too
    • Merry19451
      Merry19451 lisa65143

      Posted

      Lisa,

      Are your therapist, psychiatrist, and neurologist aware of your current thoughts, that you are suicidal, or thinking of using heroin?

    • Patient
      Patient lisa65143

      Posted

      Hi lisa65143

      We note from a recent post which you have made to our forum that you may be experiencing thoughts around self-harm. If we have misinterpreted your comments then we apologies for contacting you directly. But if you are having such thoughts then please note that you are not alone in this, and there are people out there that can help.

      If you are having these suicidal thoughts then we strongly recommend you speak to someone who may be able to help. The Samaritans offer a safe space where you can talk openly about what you are going through. They can help you explore your options, understand your problems better, or just be there to listen.

      Their contact details are on our patient information leaflet here: https://patient.info/health/dealing-with-suicidal-thoughts, which also offers lots of other advice on how you can access the help you may need.

      If you are having such thoughts then please do reach out to the team at the Samaritans (or the other people detailed in our leaflet) who will understand what you're going through and will be able to help.

      Kindest regards

      Patient

    • lisa65143
      lisa65143 Patient

      Posted

      It is better to be dead than to live with this..anyone who has would truthfully agree instead of listening to worthless advice.
    • lisa65143
      lisa65143 Patient

      Posted

      aldo the Samaritan’s are amateur. Morons and they don’t even have their phone connected.
    • lisa65143
      lisa65143 Merry19451

      Posted

      you indicated before about meds..I wanted to know which meds.

      i have tried them all.

      i can only take opioids and they wear off.

      what can those idiots do for my pain...absolutely nothing.

      li don’t want to be here anymore 

    • babs99203
      babs99203 lisa65143

      Posted

      Lisa, I truly do understand. MANY of us have been in that dark place, and it seems to last forever and it seems you've always been there, but that's not true. The hard part is remembering, even a moment, when a puppy, a baby's smile, a warm breeze, a stupid movie, anything, brought some peace or a smile. Those times WILL come again, but it's hard work, I know as I've been having a bad stretch too right now.

      No matter where you live, there are helplines and crisis lines to help. We are trying to help here too but you have to take some tiny move to act. It may sound trite, but look up Billy Joel's song, Second Wind. He wrote it for a friend's son who has dealing with severe depression. It may help.

    • babs99203
      babs99203 lisa65143

      Posted

      You may believe that right now, but what if you're wrong? What about the times when there was good stuff happening or family or friends or pets that you enjoyed being with? Yeah, it SUCKS! I know! But maybe you've just found the wrong "help". Sorry, but not everyone's at the top of their game in these fields. Try again, please.

    • Merry19451
      Merry19451 lisa65143

      Posted

      Lisa,

      I am on Venlafaxine high dose

      Topiramate

      Propranolol high dose

      Topical Benzocaine instilled in my ear...

      And Oxycodone when I have an episode every 3-5 weeks.

      When I had first episode 21 years ago in my right ear, I was not diagnosed in a timely fashion. I wanted to cut out my right ear into the middle of my brain.

      It's all on the Trigeminal Nerve, same as yours. We all suffer here, same as you. It is what we choose to do about it, that makes us who we are. You can learn about getting help here.

    • lisa65143
      lisa65143 babs99203

      Posted

      Don’t you guys get how stupid and moronic those suicide lines. They are staffed by Imbeciles who are not professional....when they answer the phone,,

      they add insult to injury...completely banal,,and they won’t exist too much longer in Trumps America,,he would make any normal soul want to pack it up:,,!!!!

    • lisa65143
      lisa65143

      Posted

      Repeat,,,the people on those help lines are amateurs,,they have no idea what they are doing,,,,they are stupid
    • babs99203
      babs99203 lisa65143

      Posted

      I share your views regarding Trump, I truly believe that's one of the reasons, well plus this darn PHN of course, that I've been down so much.

    • lisa65143
      lisa65143 babs99203

      Posted

      I am back in business w my true sarcastic self folks. Thanks for caring about me,
    • lisa65143
      lisa65143 babs99203

      Posted

      Babs, I thought I was going to be censored by the chat people. Because of politics.

      well I do hope the Brits will not let the Moron step foot on yr. shore, or better yet let’s give him a shingle virus.

      God Save the Queen, we love here Queen Liz, please don’t let him any near where Buckingham.

      and I truly hope that anyone on this list gets that helping us will get no help 

      from medical services in the US because no one cares whether us folks live or die.

      m 

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