Just need to talk.
Posted , 9 users are following.
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.
0 likes, 32 replies
marks_tarot angela98342
Posted
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
PatientMod-B marks_tarot
Posted
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
angela98342 marks_tarot
Posted
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
babs99203 angela98342
Posted
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.
angela98342 babs99203
Posted
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
babs99203 angela98342
Posted
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.
Kwellness angela98342
Posted
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!!
angela98342 Kwellness
Posted
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
terry05556 angela98342
Posted
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
angela98342 terry05556
Posted
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
terry05556 angela98342
Posted
Your welcome.
noddy_9 angela98342
Posted
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
angela98342 noddy_9
Posted
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
babs99203 angela98342
Posted
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.
angela98342 babs99203
Posted
hi babs yes i hear u the what ifs..... gets us no where i think its just luck as my husband got shingles before me was also to late tking the medicine but sufford no lasting effects thank goodness we just lucky i guess... going now to prepare my game face (mentally) as the kids will be coming home from school. thanks again babs hope today is full of speacil moments for u to enjoy angela
noddy_9 angela98342
Posted
I wld b back and forward to the doctor. They just don't care. I had no spots bt was in agony. All I got was ibuprofen which upset my stomach. After going to chiropractors, acupunchure,reflexology,herbal, homeopathy I changed my doctor and having attended an ME meeting, asked to see Dr Wilks, infectious diseases at the hospital. It took him 2 mins to tell me sounds like shingles bt too late fr anti virals. Might try that oil. Think cannabis oil. Can get I hear from Holland and Barrett.
babs99203 angela98342
Posted
I want to make sure I understand correctly, with all the posts it's getting a little confusing. You had shingles, and now have PHN. I thought I read (but now I can't find it) that it's also in the back area, like mine and Kwellness. You're also on two different opioids, a morphine derivative and morphine itself, yet the pain is intense.
The options are somewhat limited with this condition, and the drugs suggested have such side effects that for some, they'd rather not use them. I think you need to address the medications you're on. It's very possible, as I said, that they are actually increasing your pain. Or I could say, perceived pain. For some people, they can go through withdrawal as the meds decrease. The pethidine has a short half-life, meaning that it wears of in a few hours. These are NOT the first level of drugs suggested for PHN. Gabapentin, amitryptiline and anti-depressants MAY be more effective. But as I said, I do NOT recommend them. PHN and nerve pain is one of the most difficult pains to deal with. These drugs I mentioned work directly on the brain, so memory loss, depression, and numerous other side effects make them scary.
One of the first things you may want to consider is adjusting your activity. Decrease using whichever arm hurts, modify how you reach or bend. ASK FOR HELP. If you're in pain, it's harder on everyone. It took me a long time to learn that. More benign meds like Tyelenol or anti-inflammatories may help as much or more than the opioids. If you decide to get off them you need to slowly get off them. Most doctors aren't familiar with how to do that. You can do your own research on how to do that. Keep reaching out to us, but you may also find some helpful information in other PHN posts. Please also consider finding a therapist. Sharing this burden with someone other than family can make it much easier.
angela98342 babs99203
Posted
hi yes i had shingles once the rash was gone the pain remaind my german board certifide doctor has tried all of the different treatments above starting on very low dosage . there are a few clinics in Europe that specialize in PHN and pain manigment and my Dr contacted his former colleges informing them on the severity of my pain and it was under there advice that medicines and doses were given as i can not travel long distences due to the pain. as i said before i do not like taking any form of medication but i have given them a go even with the hurendous side effects. i have also had my imune system checked which basically is shot so im also having to take medicines to build up all of the defishinses that i am lacking. i know this effects the brain and perseption thats why anti depresents are highly recommended but again unfortunitly they have not helped either. my dr believed that starting from the very start taking it step by step increasing doesage and seeing what works and what doesnt would help narrow down options but unfortunatly we havent found anything and as i said the morphine on its own does not help as i have been in a serious car accedent and having been givin morphine as i nearly lost my leg i remember exactly how morphine is supposed to help with pain unfortuntly its not that easy this pain is something that i never dreamed possible having also dealt with a ruptured ovarian cyst and years of endometriosis with no pain killers but just sheer determination i can do pain but this yes its as my kids woyld say BOSS level. hope thats explained where i am im not one to take the easy path thats why for me im stuggaling for me to say i need help with pain that means its bad really bad take care ps sorry about my bad spelling but being dyslexic and with no spell check this is the result
noddy_9 angela98342
Posted
You were lucky to have someone to work things out for you. Did anything help as after 22 yrs still have extreme pain
angela98342 noddy_9
Posted
hi noddy im so sorry after 22 years ur still in such extreme pain unfortuntaly no i havent found anything thats working yet but i do note these things when stress is high it gets more unbarable i think its because instead of focusing on the pain my mind is stressed with whats goong on so staying as stress free as possible is cruital for me but also completley unrelistic due to kids/schoolwork/housework ect ect also when im dehydrated the pain also seems to increase so im constintly drinking water. All the prescribed medicine i have tried have not work for me and in some cases the side effects only added to my troubles. can i ask how does ur PHN shows its self for me its vibrating with electic shocks burning inside like a volcano and at its peak have u seen the movie Alien ok well its like i have one of those aliens pushing on my ribs trying to get through my skin but stuck thats my best discription of the pressure so i dont know do certain treaments work on perticular pain types?? u r in my thoughts i hope tomorow is a good day for u my friend take care
noddy_9 angela98342
Posted
I'm not under stress. I have been doing some exercise to get toned up. I am always very tired though. I have chronic fatigue. So because I'm tired I can get viruses. My pain can be worse then. Pain can strike at any time for no reason. My pain can be stabbing and just go. Lately it has been more lasting like a knife going into my head. It can last 24 hrs or more. After that if continues to throb constantly. My ey3s are so sore. Suppose cos the area concerned is by my left ear. I struggle to do any housework or in fact anything. I fight through fatigue everyday. With taking the cold 2 weeks ago I find I can't do anything. Difficult in reading and watching tv. I think looking at what people are suffering it's about time they managed to get help for people like us. Thanks for your thoughts too.
noddy_9
Posted
I also get a Crawley feeling, horrible sensations over all of my head in different areas.
angela98342 noddy_9
Posted
hi noddy i could not agree more with you it is about time people like us were helped and i hear you when u say about being prone to viriusis have u had ur immune system tested because im the very same thats why i tried accupunture again another treament some recommened for PHN it did not make much diffrence to the pain but after my sessions felt a bit emotional and tired after each one but slept a little better but maybe thats an option to try its a little pricy and if u dont like needles though its not for you and u need to find a professional because its a very precises treatment but i feel like it has helped with my immune system im not getting as many virises which gives me one less thing to deal with while suffering from the PHN pain keep us posted on how ur doing it has meant so much to hear from everyone wow nerves they have some nerve right..... (PHN joke) hope to hear from u soon look after urself
noddy_9 angela98342
Posted
No they haven't done that. Will ask. Usually I'm not too bad bt have 3 hours in recent times of virus. On 20 mgs now of Amytriptilene. Extremely tired even tho did get a sleep. Thanks for responding to me. It helps