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PHN Survival Skills

Posted , 47 users are following.

jim66082
jim66082

Having deal with PHN now for 7 years it still is important to me to share information with others that are afflicted by this terrible condition or with others that suffer from chronic pain.  Important because it is reassuring is to hear how others are impacted and trying to cope in their lives.  It is terrible to constantly have to turn down or cancel social engagements because you cannot bare the pain, are so distracted that you can't focus on a coversation or do an activity that you enjoyed before.  You get tired of responding to people "how do you feel"  "how is it going" and many times you dont look that bad.  One doctor said PHN is like the pain of cancer but without the relief of death.  Not looking for sympathy from others but it is tough on family and friends given they dont really understand.  I tell people now best the pain of a stinging nestle and worst is like a bad burn/scalding and rubbing sandpaper on it.  People also dont understand (as I dont as well) why it strikes when it does.  Everyday for me - but usually later in day after I have had to much irritation from the clothes.  I want to say thank you to a number of people on this site for giving me my sanity back.

thanks

jim

9 likes, 132 replies

132 Replies

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  • sheila48912
    sheila48912 jim66082

    Posted

    Jim, I just now joined this forum as I am still searching the world for relief. I'm in my seventh year of PHN, the nerve damage encompasses the left side of my groin, the left breast and around to the shoulder blades, to include lower back. In addition I have severe back pain due to degeneration, herniation, lordosis, arthritis, and a few other conditions I cannot pronounce or spell . I tried to continue to work but my body language screamed agony, whereas I never left home without being perfectly coiffed so my colleagues and customers didn't recognize any illness and couldn't understand the change in me and rapid weight loss. The opioids turned me into a zombie which was evident in the in the quality of my work and my personality. Finally I had to take short-term disability to learn to manage the medications on two separate occasions, one when requiring surgery for the morphine pump which was a complete disaster. I have tried everything with the exception of a witch doctor or shaman, I am not exaggerating. The pain is relentless in varying times of the day and night, moves positions or will cover the entire area at once . I think I shall go insane at times, it's completely ruined my life. I no longer leave the house with the exception of Doctors appointments or to the pharmacy. I'm now on long-term disability because 2 1/2 years ago my heart failed, from a genetic condition that required the Aortic valve to be replaced and the Mitral valve repaired. Them two months ago I had to have two hernias repaired caused by the chest tubes from the heart surgery and lasted about 24 hours before my heart failed and ended up back in the hospital for eight days. Still trying to recover from that nightmare! Them two months ago I had to have two hernias repaired caused by the chest tubes from the heart surgery and lasted about 24 hours before my heart failed coupled with pneumonia, in the hospital for eight days. Still trying to recover from that nightmare! There's more but I think you get a full picture of my situation. I sympathize with you, with all of us who suffer from this horrible damage, I was only 57 years old when I was stricken. I worked 10 to 12 hours a day for a great company, traveled a great deal, had many hobbies, practiced a healthy diet and went to the gym four days a week.
    • jim66082
      jim66082 sheila48912

      Posted

      Sheila I am so sorry to hear of your situation but I do understand the life impacts.  I have tried everything and last year found a paper on a cryogenic method.  It is the only treatment that has helped.  If you see my comments above you will find the info.   Feel free to contact me.  I hope your life improves.   jim
  • sheila48912
    sheila48912 jim66082

    Posted

    The following information is for all of you that are trying to find relief . Just recently one of my doctors had told me he joined a group of doctors that were working specifically with stem cells to virtually eradicate nerve damage and various other maladies in the body . He stated that I would be as good as new . After numerous discussions he asked me if the CEO of the facility that does the procedure could call me and discuss the appropriate care for my situation . One caveat , because the FDA is not on board and US regulations practically prohibit the procedures the facility is in Freeport, Bahamas . A very short trip for me . Also the doctor that oversees all of the procedures which entails using your own personal stem cells and placing them in the areas of damage to which the stem cells replicate and go to areas that require healing . Sounds like a fairytale but other countries are doing it as well . It is extremely expensive and not covered by insurance . If you're interested I can give you all the information you need to consider having the procedure done . The doctor and I did an hour and a half consult over FaceTime and I will be forwarding photos and medical records to her soon.

    You do have to have a certain amount of body fat and there is a minimum BMI requirement , which unfortunately I do not meet and have been advised to gain at least 7 to 10 pounds . I am very hopeful as I have been hearing about these procedures for some years now but very few doctors have been interested as a result of all the bureaucratic nonsense and regulations. It will be a few months before I will be able to have the procedure because of my last near-death event and I'm still 4 to 6 months from recovery . Please let me know if any of you are nterested in this facility . If you would like to look it up online it is called : Okyanos Stem Cell Facility. My doctor stated they are light-years ahead of other countries in utilizing ones own stem cells to heal our bodies !

    Good luck all!

  • jessica23419
    jessica23419 jim66082

    Edited

    Hello . I'm not sure anyone will see this as its been several months since someone's posted. It was nice to finally see people who understand. Not even my husband who sees me crawl sometimes from the pain understands. Im 34 and have had PHN for 3 years. I've had several bouts of shingles since. With the last one 2 weeks ago. Someone mentioned to me I might still be able to get the vaccine ? Anyone tried that ? I am also on lyric and 15 mg. Oxycodine. My life is miserable. I to think that this will only end with death. The worse part is the first time I got shingles I was 8 mnths pregnant with my last son. He's almost 3 now, I feel like I can not be the same fun mother I was to my other son. I've gained so much weight from the steroids they had me on. And my husband no longer finds me attractive. We don't even sleep in the same room anymore. I'm not the same wife he admired anymore. I use to take such good care of him and now I struggle to shower. All doctors treat you like you just looking to get drugs. I've recently thought about trying medical marijuana as you just have to pay for the card here in Arizona and then get you pot as needed and not have to ask anyone for help. Just wondering has anyone here actually use it ? Did it help ? .. anyways I'm glad I found you guys. It's a lonely thing when no one understand you. And they can't see what's wrong with you.

    • steve_1
      steve_1 jessica23419

      Posted

      Other people don't see your pain (we sufferers get it so bad at times we can see it) so they think that you're putting it on.

      I've suffered on and off for getting on for 10 years now. I control the pain with Tramadol, usually just 2 a day but when it gets bad (like now) I'm up to 8 a day.And flying.

      Since Tramadol became a registered drug here in the UK I have noticed that I get looked at like something trodden in by some pharmacists, but, what the heck.....it keeps me opperational.

      I've tried most of the alternative medications and found they didn't do a lot.As for medicinal mary jane, it made me sick.

    • bonnie2828
      bonnie2828 steve_1

      Posted

      I get you both. Only sufferers can understand it. I have had PHN for 8 months now. I also take care of my now 3 year old grandson. He actually lives with us and as you Jessica I hate that I cant be the happy energetic grandma I was before.  He is so good about it.  Im sorry I cant offer anything but sympathy.  But do know I love you.  Hang in there.
    • r.oka
      r.oka jessica23419

      Posted

      In your post 7months ago you asked about cannibis use for PHN. It is legal here in Colorado (U.S.) for recreational and medicinal use. It may be legal nation wide by 2020. Give or take a few backwoods states. Along with stem cell research it has the greatest potential for PHN sufferers worldwide. My doctor insists stem cell research is not there yet but may be soon. That could mean several years or longer. Meanwhile I have used cannibis successfully in dealing with opiate withdrawal. Opiates I am dependent on for PHN pain. As I continue to wean from morphine and oxycodone the cannibis has been a lifesaver. I couldn't make it through withdrawal without resorting to other addictive pharmaceuticals. In my opinion it is a far safer substitute for PHN pain than opiate use. I just can't feel stoned 24/7 and feel I'm living in reality. Although many cannibis users are able to do so. It's called a mind altering substance for a reason. The altering is a good thing for alleviating pain. When they find a way to override the stoned senses that accompany that altering then it will answer the call for all chronic pain sufferers. That may take some time as well. I continue to use it for pain and withdrawal with excellent results and hope to be opiate free soon. The PHN will remain until stem cell therepy can eventually heal those wounded nerve endings.

    • ruth57682
      ruth57682 r.oka

      Posted

      I am also in Colorado.  I have tried a cannabis topical CBD but it didn't help the burning pain and itch.  This is available without a medical card.  Since that was of no help, I did more research and was told maybe the CBD in an edible might be worth a try.  The edible has very little THC which is the mood altering part of marijuana.   I don't want anything to mess with my head!!

  • lena_19804
    lena_19804 jim66082

    Edited

    I have had a kidney transplant earlier this year and am on immunosuppression drugs. This meant that my childhood chickpox reared its ugly head as shingles which I had to be hosiptalised for over a week. The rash has gone but PHN is still hanging around. After spending being on Lyica for 2 months and spending $$$ on various creams I have found little that works... UNTIL I tried geranium oil. I mix it with vit E cream. I also was told Hypericum (St John's Wort) ointment helps heal nerve endings so I bought thsat as well and after about a few days I have found it relieves the itch and burn feeling and the pain is less as well. I hope this helps

    • bonnie2828
      bonnie2828 lena_19804

      Posted

      Hi Lena,

      How are you doing?  I have had PHN for 8 months now. I will be trying your suggestion for the burning and itching. I havent left my house or had company for 4 months now because I cant stand the touch of cloths. It covers my whole left hip from my spine around to my groin area.I just wanted to  thank you for your research and suggestion.

    • ruth57682
      ruth57682 lena_19804

      Posted

      Hi Lena,  I have had the PHN pain got 4 months now.  It's been that long since I have been able to wear a bra.  The pain starts in my shoulder blade are and the worst is my armpit and around my right breast.  I tried everything.  Pain meds, patches, lidocaine cream, Lyrica.  Nothing helps.  The only relief is sleeping on the opposite side and not moving.   From doing that I get a bedsore and stiff left shoulder.  This truly is life changing.  I live alone do can go topless at home but can't go out and tolerate clothes for more than an hour.  Where do I find geranium oil and vit E cream.  I am in the US.  I do have an appointment with a pain management place in 2 weeks, but I will try anything.  Does anyone know anything about topical cannabis?  I got the shingles right after I had a cervical fusion early this last summer.  Guess that knocked out my immune system enough for this nasty little bug to emerge!  The skin feels like severe road rash and while trying to sew something yesterday, even a thread dropping on my chest triggered pain!  Friends say I look fine!!  They sure don't get this horrible disease'

       

  • mandy_85428
    mandy_85428 jim66082

    Edited

    Hello Jim

    I first got Shingles after my dad died, 4 years ago, when I was 47, I repeatedly returned to my doctors with symptoms and was repeatedly given more anti virals. I've since changed doctors and 3.5 years later been diagnosed with PHN. Sometimes I feel like I've continually being stabbed in my right side of my rib cage other times I feel so sensitive that I can't even wear my bra. I lit seems to disappear for a while then boom I can always tell before I even get ill with a cold or just feeling under the weather because the pain gets so much worse. I can't take the pain killers which have been prescribed as they do not agree with me and the side effects are impossible. The topical creams don't work anymore so I just have to put up with the pain, the thought of having this for the rest of my life is very depressing. Have you tried Tens pain relief and if so what did you think of it?

    • sheila48912
      sheila48912 mandy_85428

      Edited

      Hi Mandy, yes I have tried the tens machine but I felt that it actually aggravated the pain. I'm sure it's different for everyone. I continue to research possible therapies that can help us. The thought of living like this the rest of my life is unimaginable. Somehow I get through each day and continue to hope for relief. I hate the drugs but cannot endure the pain without them. This forum has helped immensely and I hope you are all getting good information that can help you.

  • tim70769
    tim70769 jim66082

    Edited

    Hey Jim, 

      I simply don't socialize at all, friends and family like to say, you still have that, I thought you got over that years ago. It's not there fault as you say they just don't get it. 

      I'm 5 years into it and always appreciated reading your notes. 

    Thanks

    Tim

     

  • sheila48912
    sheila48912 jim66082

    Edited

    I'm starting to lose hope. Loathe the drugs but absolutely cannot tolerate the pain when I reduce my doses. I try to walk and exercise daily but by 1130 in the morning the pain starts to intensify and by 2 o'clock I have to lay down. Social life? No! Friends? No! Travel? No! The only time I leave the house to go to the pharmacy or to the doctor. Cannot imagine living out the rest of my life in such a state. I'm in my 8th year and in addition to PHN I have severe neck and back pain. Still waiting for a miracle cure so I would have to say I haven't completely given up. The only advice I can give all of you is to try everything at your disposal, even meditation and hypnosis. One day at a time everyone, keep the faith.

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