PHN so low in my feeling now,or and in pain

Posted , 6 users are following.

Thank you all for your kind and helpful ideas, but the truth is  now  I dont want to carry on like this, my neighbour summed up every thing/my feeling,  "If the doctors cant help you because your so  allergic to every thing they give you.  stop going and seeing them but please stop crying about it" when you come over for a coffee.  That hurt like a slap in the face, so now I feel  I cant go  over to hers any more for a coffee.  I did not realise that I was crying/ moaning all the time when I was with her.  I know she is a very hard person she rules her home with the iron rod, but she was there for me when my partner died.  (no hugs but she made sure I had milk and bread when my  partner was rushed into  the hospice). Now  Im possible losing my job because of the PHN. My children live 20  miles away want me to move but I dont want to  so now they are  not prepared to come over if I call them for comfort, they have their own families now,  and I have a choice move to there town or stay where I am  but wont  help me.

Well I want to say again thank you for all your help here on line,  I wish you all good health. Jocelyne

3 likes, 12 replies

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12 Replies

  • Posted

    Dear Jocelyne, I haven't posted for a long time (explanation later) but I have been following this forum all the way and feel so much for you in your situation. We all look to this site because we find that our families and friends who haven't suffered from shingles, or have only had light self limiting attacks, can't give us the support we need, even when they have the best of intentions. So we can imagine how bereft you feel, lacking even that support. It sounds as if you are in the depths of depression from the situation and it turns into a vicious cycle because that low state tends to worsen the effects of PHN.  Because sharing a problem or a worry with a sympathetic listener is so important, we are all your sympathetic listeners so please continue to use our shoulders to cry on. On a practical note, can you check again whether you qualify for a disability pension? I believe that if your work place wants to dismiss you because of your difficulties, they will have to pay you compensation according to the amount of time you have worked for them even if you are not on their permanent  payroll, and all the more so if you are.  Can you get to a citizen's rights bureau, who could most likely advise you on what you can apply for and how? Can you keep in contact with your family on Skype, if they can't visit often? Anyway, follow your instincts about moving, even if other people suggest it. If it feels a bad idea to you, stick to your guns! Hoping you'll post soon, even just to have a good old moan, as that's what we are here for. BTW I  haven't posted for a while as after a period of feeling unwell, I ended up in ER needing a heart pace maker, which shook me up rather. I'm convinced that it has something to do with the shingles, either the stress or the medications.  So we've all got the same enemy to beat!  So do your best to keep on fighting, even if it  so often seems impossible.
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  • Posted

    My message "escaped", but I wanted to add take care and try to spoil yourself a little this weekend. Thinking of you, Pamela
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  • Posted

    Hi Jocelyne. Sorry to hear you're suffering so much. The post shingles/PHN can last for months unfortunately. We don't get much if any sympathy from friends and rels as they, mostly have never gone through this. I think you're suffering from quite severe depression now which does not help with pain anyway. Have you been prescribed anti depressants? They help with pain and depression and if one does not suit you, go back to GP's and tell them as there are others which may help. Coupled with counselling/therapy which is good as you can unload your feelings onto someone who is not as close as family or friends so not emotionally involved with you personally. It's difficult for close ones as  they do get emotional and worried about you but not being professionals don't know how to help. Regarding a house move, better not to make decisions like that until you're much better physically and emotionally as you could make the wrong decision. You must be quite lonely too, have you joined any groups near home? Might be a good idea to meet up with different people now if you truly want to stay independant. I'm on my own but have a dog for company, he's a blessing and doesn't complain even if I shout at him! It's a year now since I started with shingles and it's been pretty horrendous. My kids don't understand really, they've never had to go through anything like this themselves so far. Anyway, I'm still alive if not kicking as much as I did pre shingles! rolleyes Keep posting and talking to us! Best wishes, Pollyanna UK
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  • Posted

    Sad that all victims of Shingles with PHN that we need to be strong. It is miserable and many people could not comprehend what we have gone with loads of anxiety with frustrations,

    Take Jocelyn

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  • Posted

    Hi Jocelyne, hope you are feeling a bit better today. I must apologise because as soon as I read your posting yesterday I felt the need to reply and sympathise. However, I was on the way to the pain management clinic and it wasn't possible. I see you have received postings from others who are in the same boat as us and I do hope it has helped. I too can fully understand how you feel and I too cannot believe nobody has found a way to ease or eliminate this pain. What I have done is to come off all prescribed medication as it doesn't work and can only make you feel vegative.  I take the odd soluable paracetamol - I know these are rubbish but it does ease the pain a tad. I have also gritted my teeth and started exercising again, painful I know, but thought  it might strengthen my back muscles. If I could swim I would. I have bored my friends and family with my moaning and groaning and they do not understand - nobody can I think unless they are fellow suffers. I wouldn't wish it on anyone, except these 'experts' at the pain management clinic!!! Try to keep your chin up and if you can swim. Take care. With love Barbara 

     

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    • Posted

      Hi Barbara, thank you  for your kind words, I promise to sit down and write to you tomorrow, as I am at hospitqal tomorrow again  for 9 am  so I must try to sleep tonight.  Gentle hugs  Jocelyne  Cambridge UK
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  • Posted

    Hello Joyce,

    Oh I feel so sad for you and can identify with you regarding the children and neighbour

    situation.  The only one who has been there for me has been my disabled daughter who isnt married and has lived with me for a few years now, since my husband died.  She brings me up numerous cups of tea and hot water bottles.  Takes the dogs for a walk and cooks simple meals where as my son who just lives up the road has popped in twice in the last month and both times stood in the doorway with a scarfe around his mouth and asked if he could borrow my wheelbarrow!  Blokes I suppose.  Your neighbour cannot in a milliion years know how bad this pain can be I  I am tough, as I said I had both my knees replaced at the same time and then when I got home my husband was taken into hospital and so I was on my own, but if I had to chose which to experience again it would be the knees without a doubt

    Laugh and world laughs with you   etc...   sad but so very true but you cant go laughing like a demented hyena with this condition  or maybe that is the way it may turn us all . when the pain gets too bad to cope.....  Living near your family doesn't necessarily make it any better as I have found with my son.  Get a heat pad instead     lollol

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    • Posted

      Hi Bev, thank you for your message, you had me both smiling and crying, but thank you for your words.  Well today I drove again for 9 am to our major hospital Addenbrooks, to "guess where"  yes you got it the PAIN Clinic,  I sat in this room with a young lady who could have been my grandchild  she is asking "how im feeling" im sitting their holding my side in pain after driving there, 3/4 of an hour, then trying to find a parking place which is impossible at this hospital to park.  sorry feeling a bit angry at the moment as I re-play, the event.Oh I for got  went to the clinic only to find they had moved it to the other side of the hospital, which according to the driver who collect and delivers patients to the other side of the hospital is a mile and a half long. and getting bigger.

      She fired more questions to me  which I tried to answer,  she then realised that I was getting up set and asked her "what am I here today for" and she replied  oh we like to take details of how you are so we can sort out what you want from us-  which was like a boiling kettle to me, as I told her I want help to get rid of this pain, I dont want to sit in a room with other people who's pain is nothing like my pain  or are you putting all the PHN sufferers  in one room,"We would like to teach you how to relax" I have tried relaxation methods with a very sexy surgeon (sorry im 62 and he is very very nice with a soft irish voice his voice used to work  but not for this type of pain)  see it made me smile typing this.  well it was 4 years ago who did my two full knee replacements done by him. I have cronic arthritas now the PHN and also I have had two more ops for the narrowing of my throat (esophageal stricture) and also I suffer from hypersenstive issues in my mouth (no salt pepper vinagar spicy foods), that is when im not able to produce salvia. I can not raise my arms  any higher than my waist. I need an op  but  Im not ready to have my muscles cut to enable me to raise my arm a little higher, and be off school for 4-6 months plus phsyo. She then said you look and sound angry, that did it   I got up and left.  I know they have to learn but sorry at this moment  its not going to be me.  Sorry Bev now you and any of the other readers can see  all these problems have come out on me since Chas died.  Right  its 12.30 midnight time for my restless bed,  I have to return to the hospital to see my mouth surgeon.  Take care  I send you a gentle hug, sleep well and sorry for losing it on here again.  Jocelyne  Cambridge UK

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  • Posted

    Hi Jocelyne,

    well I have done a bit around the house but this deep pain under my shoulder blade is back again so I am sat on bed with my trusty heat pad.  Nurse practitioner (nearest I can get to our doctor!) gave me the cream I requested derived from chilli peppers I believe  Supposed to be ultra hot to. deaden the nerve pain.  Well it has been applied three times over the last day and it might as well be a derivative of cucumber for all the heat it gives out - supposed to be really expensive.

    These pain clinic are pretty rubbish in general.  In fin their 'give me a number from 1 to 10 10 being the most pain you could possibly tolerate' or words to this effect) 

     

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  • Posted

    Sorry Jocelyne,  I'm going to say cheers for now as I keep getting this computer 'stood on' (two little dogs full of energy)  take care and speak soon x 
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    • Posted

      Hi Bev  I have a pure white cat, who jumps up behind the computer and then walks straight across to the front and the key board, which then sends  un readable sets of letters across the screen.  He is my god send  If he could talk he would have packed my bags and kicked me out  except that he is a fussy eater and no one likes his choosey ideas  I have so many packs of cat food that he wont eat and so out of 12 packets he only eats the tuna, salmon,chicken but not the beef and lamb. Well shhhh  I have had two glasses of wine   (I know wine and meds dont mix  but it does not make one bit of difference to me) going back to the hospital tomorrow for 3 biopsy in my mouth and tounge plus stitches.  then I have to drive home  so wine tonight might help me sleep.  speak soon take care every one  gentle hugs  Jocelyne Cambridge  UK
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  • Posted

    Hi, this is just a quick one as I have to be ready to go out by 9.30 and by the time I've done all the things to get my back ready and taken all the jollop the time flies by(as you no doubt know) . However, with regard to the wine, I swear by it for pain relief and to aid a good nights sleep (or whatever tipple does it for you!! - in moderation of course! 

    Take care and have as good a weekend as possible. X

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