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.
i totally feel for you i have been there almost to the point of considering suicide , i have been lucky even though it took 5 years to get treatment. i now have regular Botox and nerve block injections it helps i still get symptoms but im able to function most days , not all day but part of it . i think i have tried every drug and alternative therapy possible . i have found concentration very hard but have taken up a hobby that even if i can do an hour or so it has really helped me but saying that it does exhaust me , its helped me lift my mood and made it easier to cope yes its still there but i find trying and i mean trying to focus on something for me really helps hope this helps MARK
Hi Angela, I understand and I was there too. But I'm getting better and the odds are VERY much in your favor that you will get better too, possibly even fully recover. When were you diagnosed with shingles and where was your shingles? Some types of PHN are more difficult than others. Mine is related to my back/chest/shoulder. I found that limiting the use of my core muscles (bending, twisting, lifting etc.) and that side of my body limited the pain. It took awhile to figure that out. When you're in pain, depressed and see these changes to your life, the pain is all consuming, isn't it?
I had to remind myself over and over that improvement is happening, but so slowly that I barely noticed it. I'd force myself to notice what pain had decreased, even a little bit over time. Maybe I could now clean a sink with less pain, I didn't gasp with pain as I stood after tying my shoe laces, I could more easily get out of a chair etc. Eventually, some of those things didn't hurt at all. Yes, it may have taken months, but there WAS improvement. My shingles was in October 2016. Between the pain and the effects of the meds, I had to quit working in July of 2017. Talk about being depressed! Yes, that was a rough 12 months, but I got through it.
There is no reason to feel guilt, the pain if this condition is debilitating, add the changes to your life which are probably causing isolation and this is a normal, but miserable, reaction. Have you sought counseling? It can literally be a life-saver. At my worst point one day, I couldn't stop crying when friend called. She got me into a wonderful therapist and I was never that low again. It's still not easy, but I did improve. Now I have 90% of "me" back again. When I accepted that this was going to be a long road and that I had to do what I could to keep healthy, it became easier.
Another piece in your story is the medication you're on. This may seem confusing, but some of these pain meds, like gab, anti-depressants and opioids cans cause depression, confusion and other serious side effects. You're on two opioids. As the body gets used to them (dependence) they may seem less effective. But surprisingly, they may also cause more pain symptoms as they start to wear off. That's called intra-dosage withdrawal.
I've been tapering off gabapentin for over two years. The side effects were so bad, I wanted off. However for many of these drugs you have to go extremely slowly to get off them, to prevent withdrawal. It's taken me this long to get from 2700 mg down to 500 mg. There are likely other better, safer medications to take. However, they ALL carry risks and side effects. Have you sought a pain management group? The gab helped a bit, but the memory loss, mood-swings, blurred vision, brain fog, disassociation (feel unconnected to others around me) was so bad, I knew I had to get off it. I use a prescription anti-inflammatory, Tylenol 3-4 times a day, and a lidocaine pain creme 3-4 times a day. PHN pain is very difficult to treat, but eventually the pain DOES get better.
I relate Angela. I had shingles on my head and inside of my mouth. I have those times where it is unbearable. I have learned to accept it but struggle like you mentally. praying for you
Hi marks_tarot
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
hi mark thanks so much for responding sometimes we just need reasurence that were not in this alone. you have helped more than i can explain. angela
hi babs again i appreciate ur quick response having had this for nearly 2 years now i hoped it would get easier but alas no i have never been one for pain medicine as i hate missing out on life its so important that i dont miss out on every day of growth of my kids but when the pain is this bad i cant even focus on what is being said. i just needed to know that others have felt the same way but still manage the strength to carry on another day and u r all giving me the support i need to do it so thanks my gratitude can never be expressed enough. angela
hi terry i genuinely feel the prayers being sent by u. today has been very tough but with all these kind thoughts and words i feel like i have been wrapped in a caring embrace by my fellow PHN sufferers i will fight another day knowing that people like urself understand me and get why this is so much torcher my dream each night is that tomorrow i wake up and find a magic bottle with a genie inside top of my list cure EVERYONE of what ales them i can dream cant eye. lets hope i find that magic bottle. thanks again. angela
Your welcome.
I'm sorry for u as I completely understand. I wasn't given meds as I had no spots but it was affecting my headhead. Still is I'm afraid. I have taken a bad cold and now the pain is unrelenting. I try hypericum homeopathic drops, tens machine, chilli pepper cream, st John's wort oil and nothing helping. Going to take 20mg of Amytriptilene tonight to see if I get any relief. Unfortunately I have had this for 22 years and gets worse after each attack. If u had anti viral meds then maybe wl be shorter. Unfortunately I wld get in the worse place of all my head. Sorry can't be of any help. Check out Shingles Society in London. Look up phone no. They are helpful
I'm glad we're helping. No matter how much others try, they can't understand what PHN is like or what living in chronic pain can do. CBT or Cognitive Behavior Therapy really helped me, that's why I mentioned seeing a therapist. As Marks mentioned, we can make progress with acceptance, as hard as that is. The best ways to help ourselves is often not through some of the pain meds, but by some lifestyle changes. CBT gave me tools to fight off the negative thoughts "I'll never get better" "Nobody can possibly understand so I'm alone" etc. I was NEVER a positive Little Mary Sunshine, but I finally realized that I had to find a better way of dealing with the pain and changes to my life.
Hi Angela, KWellness here. I have also had PHN for two years. It's horrific. I take Nortriptyline daily for nerve pain and Nucynta . is my opiate. I used to take Nucynta every night but now I am down to 2-3x/week. I dont want to be addicated to opiates and I have worked very hard to reduce my dose. I am 48 yrs old have a 13-year old son and a loving husband. I cry all the time about my pain. I also had to go back to work full-time 6 months ago after being on disability for over one year. I had the worst case of shingles that 5 doctors had ever seen. Why am I telling you this? Because I understand you and I want you to know that I always have pain, but if I reflect back to a year ago, i can recognize some improvements.
Every day i wake up tired and wonder how i can keep doing this, especially working day after day. But what is the alternative? I love my family so much I couldn't bear to not be in their lives. I have a feeling you feel the same about your kids. Please know that there are others who are suffering like you and can understand what you are going through. Please know that every day you manage to get through is one day closer to less pain. I truly believe that I will have less pain...and have experienced some reduction over time. You can do this!!
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
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.
hi noddy thanks for replying i feel for u with all my hart when i got shingles i had no idea thats what it was as im a little busty and just assumed the rash i had was a heat rash and that the ache and tiredness was just of sheer exchaustion due to having 3 very active kids all under the age of 15 leading very active lifestyles (basically mummy taxi service) so by the time i reached out for help i was about 3 weeks to late. yes everyday i kick myself for not looking after myself better. anyway i hope and pray u have a better night/day and hopefully a mirical cure will be discovered for us ALL tomorrow. thanks angela
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.
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
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
Angela, stop kicking yourself! Well, that's easy to say, but I finally stopped the What If's and Why didn't I's. I worked in health care for over 30 years and diagnosed both my father and my husband's shingles. But as I had no rash, just a few odd bumps, I didn't realize either. MANY people don't know it. We see pictures of the rash and hear about the pain, so we think we'd recognize the symptoms. But there is a longer time period than I realized for many before all those symptoms come together, And for many, there's no conclusive moment. A lot of people go through a lot of testing thinking it's back pain, appendicitis, flu, heart issues etc. It's not until the pain continues unabated, that they and the doctors realize. I'm sure there are thousands of people who actually have pain from shingles and never know it.
That window for the antivirals is so small. At my first doctor visit both I and the doctor felt it wasn't shingles, as I hadn't had active pain for well over a week. Then it hit again a few days later and didn't stop. By then, it was a Friday night and the next day the doctor wouldn't order the anti-virals, I had to wait until Monday for my regular doctor, which was obviously too late. But even then, my first pain was 10 days earlier, so I don't know if it would make a difference.
hi kwellness i want to give u such a big hug the words u said about the importance in being in ur familys life is how i feel exactly thats the only thing thats pushing me through. i have been all over the country looking for help and have seen 7 visiting doctors and they have each said the same they have never seen somthing like i have. now when i hear u say that about ur drs also it makes me so sad cause when i read your story and ALL the other poor sufferers of this horrible condition looks like there are so many of us why oh why im i not hearing about PHN i had never heard about it until i was diagnosed with it thats what makes me sad were all suffering this with no one hearing our screams im praying that tomorrow for us ALL will bring the answers we r looking for ok im done go and spend these preshous moments with the ones who bring u joy and happiness thanks again stay safe angela