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

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.

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

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!  Keep posting and talking to us! Best wishes, Pollyanna UK

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

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 

 

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     lol

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) 

 

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 

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