PHN Survival Skills

Hi Cathy,I live in the UK where do you live?  I am on a lot of meds for my arthritas including a transdermal patch 125 mg for pain, alsotramodole and 3tabs of 300gabapentin 4 times a day for PHN. plus amitriplene 100 mg at night for the pain. I also take a long list of meds for the arthritas I have had two full knee replacements 1 shoulder op and now I need one more shoulder op on the same shoulder. all due to the arthritas. my PHN is under my right breast all around my shoulder up to my shoulder blade.n Pain with this is nothing like the arthritas pain  It feels like I have rolled into a stinging nettle patch, its stabbing like a hot sharp knife. at night I have to take my meds plus no im taking a liquid calledOXYNORM  yes it takes the pain away for a while in fact its heaven but shorly all these meds cant be doing my body any good in long term, which scares me now at my age of 62, Will I get cancer but we would not know if im taking all these meds?  will I become so addicted to all my meds now after losing my partner I watched him die of aggressive brain cancer, Yes I miss him so so much, but I would not have any one to care for me if I became ill. and yes when im crawling around on my bed in pain  some times I wish I could join him, No one knows what pain we all go thrue, People ask how you are  but because you dont have a scar that they can see they think we are making it up .

What I dont Under Stand is WHY CANT THEY FIND A DRUG THAT KILLS THIS PHN IN OUR BODIES  IM NOT OLD Enought to have the injections  but I read on here of people  who still get PHN over and over again.

 I wish you well my dear, I pray that some one will help us all one day, take care  Kindest regards and gentle hugs I send to you  Jocelyne  UK

Hi Cathy, i HAVE WRITTEN TO YOU  but its gone to be checked  not sure why, you talked about your leg  is that where you had with shingles/PHN ?  I still find that people of all ages are suffering  I know how many of us cry with the pain,  Tonight a met some one who is only 6 years old and is suffering,  she caught chicken pox at 3 from her sister and now at 6 has shingles on her face and down her neck.

Her mum said she screams in paid, she cant bear the ice packs on her neck area, Its bad for adults  how do you treat a child who is in pain. Take care   Jocelyne 

Cathy I really feel for you  No one can understand what our pain is really is like,  so many of us try to explain how this pain strike and forces us to cry in silence,  it seems that all over the world we are all crying for help, leaving most of the doctors not knowing what to give us to stop the pain.  Many of us not only suffer from  PHN but we also suffer from arthritas. and other issues.  I send you a gentle hug  its so special to have this site for all of us  who can have problems or worries.  Jocelyne  Cambridge  UK.

Yes we cry  inside don't we - I do so often too - Gave up on  doctors a long time ago.  I get so sa when I ow many people are suffering.  - But a comfort to know its alright to feel like we d

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Hi Cathy,  Thank you for replying, Im not sure what country your in but here in the uk My doctor perscribed the OXYNORM there is another one called OXY CODIN  but I could not take that one as I am NOT ALLOWED TO TAKE CODIN. I can take this 5ml every 4 hours  which I did take for a few weeks now I try only to take it along with the other meds when I am really unable to get the pain down. It  has what they term immediate  release.(just read that on the box).

Im going tomorrow to see a person who can tell me my rights, as my school wants me to resign with a sum of £3 thousand pound , my union tried to get 5 thousand but they refused. so now I must either go back to school or leave.  but it scares me how do I pay my bills.

so fingers crossed she can help me..

Jocelyn:  I have no knowledge of your employment stiuation but make sure you get everything you are entitled to. I woud have thought you would be eligible for long term disability.  Dont sign anything until you are sure what your options are.  Unless you are part time and have no employement contract -  it seems odd they want to buy you out with a small lump sum payment.  I also had to fight disability - the one with my employer (I worked for the goverment - lower level government).  However the Federal Government which provides pensions and disability accepted my claim without a fight - they typically reject over 50 percent of first time submssions.  I put a lot of work into the papers and had the approriate doctors submit their opinions.  The government also accepted chronic pain from PHN as a reason for full disability.   I am happy to provide you with any info.  We could do it in a confidential way so it isn't on the site if you wish.  Best of luck  jim

jim I have sent you private mail Jocelyne

Hi Jim

Hi Jim, I went to see my doctor, and asked him to sign me off because of this PHN, he said he could not do that, it would have to be the place where I work (School) who can only do that  but they wont because that said it would cost them money. so Im stuck, I did manage to get a copy of a letter which he wrote to my HR people, stating that my arthritas and now this are causing me great pain and that he can not see me getting better. in the for seeable future.  GREAT  but he wont offer to contact the  school    I dont know what to do now.  so he has given me a two month sick note   school  wont be happy.  any one out there can help and advice me  I would be most greatful   here or on the private mail area.  Jocelyne  from Cambridge  UK 

Jim  I need your help  PLEASE Jocelyne  Cambridge  UK

Hi Cathy,  how are you feeling?  are you managing  your pain a lot better now? Just to up date you with regards to me..  I was advised not to take the offer from school, but to get a medical sick note from my doctor , and then make the school sack me..  If i  had taken the money  I would not qualify for any benefits to help pay for my house.   for 28 weeks. but if I get sacked I can get payments for my home etc and my disability.

Take care Jocelyne

Hi Elizabeth, I live in the UK, at the moment the weather is mixed today cold damp but the day befor sunny and well I got the washing dry on the line so Im not complaining... but yes I have only had mine since June last year and now its affecting my work.  Im off sick at the moment, and yes to day im in pain, so much pain I think my poor cat is fed up with me crying,  but he some how understands and wants to stay by my side.well thats my way of thinking... I went to bed at 11  its now goodness 1 am  could not bear the sheet/quilt on my shoulder or back  tried the ice pack idea, nothing today has made me feel good. I have got up asnd now trying to take my mind off the pain of my dressing gown on my shoulders or back and my body leaning on the pillows.  (I should say my nerve pain  PHN is under my right breast  to up and down my back and up to my shoulder blade)  I can not wear a bra, its not for the lack of trying all types of bra  climb in bras/front fastener/ back fastener,  evwen a maternity bra  SORRY GUYS well now you know what us woman wear or try to wear.  after 30minutes im in the loos at school stripping off the bra of the chosen day in pain. so here I am alone the cats gone out for the night, Im off sick from school as I cant cope with wearing a bra.  I wish you well Elizabeth and can offer you gentle on line hugs, take care Jocelyne from Cambridge  UK

Well I did think having it all through my face etc, every part,,, was bad, but when I read how difficult with clothing for you, maybe I am fortunate!!  I have often felt I would rather have cancer than this,,, 

are you a teacher? That must be so hard when you are trying to cope with something no one sees. Thank you for your hug,,,, I really hope yours will ease and not go on for so long.  Cats are wonderful, am sure he understands.  Is your doctor understanding? I don't even try here now 😰

Ok a BIG THANKYOU  I would love to have a real hug, but I lost my partner to agressive brain cancer  with in 6 months of being told there is nothing we can do, he left me  Im pleased to say he died in my arms.  God i miss him so much, but may be there is a reason  because he would not have coped with me crying or seeing me in pain. Thats why my cat well I brought it for him when he was so ill, the kitten (called) tigger would sit with him well thqat was till I came home from school then he would attack me lol  He would laugh because Chas knew I would  creep into the room and still the kitten would jump out at me, he used to cimb under the quilt and yep he would attack my feet.  But now he will snuggle up on Chas side of the bed and stretch out on his pillow.

Yesterday I was so ill during the night in pain and being sick, and all day today I wish I could join the love of my life.  it gets to the stage that I dont want to go to bed, because I cant get settled. I go into panic mode.  any way enought of me.. You mentioned that your is on the face, how do you cope with the pain attacks? are you working? has it left you with nerve pain marks?  what do you do to help you,  what country are you from?  sorry lots of questions, gentle hugs  Jocelyne from Cambridge  UK

Oh When I read all of that and how much you have to suffer after losing someone you love,,, I am so sorry,,,it takes a lot of courage for you to bear that pain .  I went to Cambridge once on a visit when my sister lived in Suffolk. I am from England, then mid 20 I went toRhdesa now Zimbabwe,,,lived most of my life there, married with two children.  when it collapsed my daughter moved to New Zealand - I travelled to and from England having hip oerations.  Now I am in New Zealand but still my lufestyle of England. No I don't work rk, I am 84!!! Far too old 😥I got shingles in England ,, I don't really do anything for the pain,, take bit if Gabapentibe and use frozen flannel,, everyone comes up with different ideas they think will help, various vitamins etc,,but as you know, there seems no real so,ution.  I thought face was bad enough  but when I read you and others who can't bear to wear clothes, then I suppose face is easier? 

I was so grateful to read one of the first posts where she described the effects,,and the feeling of isolation ,,,mainly because people have no idea you are suffering. I hope you have some good moments,,I will have to scroll back and re-read about you. I feel so sorry for all these people. Eluzabeth, 

Thank you Elizabeth, you are so kind,  Reading your age, I did not think you were at  that point of life, you must have a very young look on life.

I cant imagine having shingles on your face,  it must be  hard to treat, at least with mine I can be in pain but I can freeze my area with an ice pack.

wow you have traveled the world, Chas and I had intended to go to  New Zealand but of course it had to be squashed when he became ill.

It looks like I am going to have to take early retirement, my doctor wont  let me go back to school for another two months.

Right I wish you well Take care Jocelyne from Cambridge UK 

Hi Jocelyn - have to smile! Yes, I  think perhaps I am too young for this old body and enjoy younger people  !!   I think Zimbabwe will always be on our hearts - such a lovely place to live, gracious poeople and we do  miss the type of life we had there.  Somehow nowhere else comes  up  to that -  Have you read much about it ?  Do you feel your pain is gettingl less and have the hope it will finally cease ?  They do  say only 2% haveit continuously -  I really pray you will start to get better -  What a beastly thing it is - Take care - Elizabeth

Hi Elizabeth, I wanted to comment on your post regarding weather affecting your PHN pain. It is definitely a factor for me as I suffer from arthritis as well. But cold and rainy weather increases the pain level but also the pain increases as the day moves to sunset. I am generally in bed by 2 o'clock in the afternoon, sadly and that's where I will remain until 7 or 8 AM the next morning. The opiates only offer minimal relief, also use an ice pack on the affected areas. As with other women I cannot wear a bra but for short periods and have switched to soft sports bras, no underwire. I have started using Aspercreme on the affected areas also an over-the-counter pain patch called "SalonPas" and I inadvertently discovered another topical agent that has helped: Aloe Vera sunburn relief with Lidocaine. Offers topical pain relief and a cooling sensation. Truly hope this helps some of you out there. I am willing to try just about anything to get relief and I'm quite sure all of you sufferers feel much the same.