My Humerous Story of Pain, Depression, Fatigue, & Isolation

Brain and nerves
1

I sure don't want to bring anybody down. I also want you to know that I laugh at myself many times a day for how pathetic I have become since I got ShIngles and subsequently PHN. Yes I said pathetic. Just stating the facts as I smile as I am writing. My journey with PHN as been very tough. I assure you it will get better. But cycles back regularly and is always a little bet worse then it was the time before most of the time.  Here is my story.

I just officially retired, we bought a really serious fixer upper in the middle of nowhere, I moved out there to it before my family and week after working really long days demoing the structures. I started having the craziest symptoms.

Sever back pain, headache, dizziness, electric shocks, night sweats, nausea. I was completely isolated and was unable to stand up. I tried to drive but the nerve strike were throwing me across multiple lanes. I was 6 hurt from my doctor and family. I stopped at an Urgent care, they tested me for kidney stones, took a few X-rays. No conclusions, no treatment. I made it to my family, was I so much pain they told me to go the ER. I went and they did the same as the Urgent care facility the day before. No diagnosis. The day was in convulsions and would fall to the floor with stabbing incapacitating pain. I would fall to the floor making agonizing noises and the stand back up in a few seconds and laugh at the doctor and say see what the hell I am going through and then back on the flooring severe pain. The next day I was worst and went back and exhibited the same symptoms, Back, side pain, headache, electric shocks, dizziness, nausea nw for fours day., On the fifth day I went to the ER again because no I have not eaten for days ad could pass a movement. They a CT scan of my stomachs gave me three magnesium drinks and made me stay until I had a movement. Sent me home thinking thats solved the problem. The next day after having all the same symptoms. I noticed burning on my left side. After a few hours I had a complete belt of Blisters on my left side torso, belly button to spine. Went to the ER and they said "Oh you got shingles" Here Have some Antiviral meds and go see you PCP". It took me two weeks to get in to my PCP. I was still having convulsion of pain and my Doctor was really mad I was not expedited into his office. He told me I had the worst case he ever heard of. He put me on Gabapintin max dosage. I lost 30lbs in six days. Spent the next two years half drunk of the Gabapintin as I continued with my renovation project. My wife drove me everywhere. 

I am now on Lyrica and I just threw my antidepressants in the trash. I spend a lot of time on the couch. Some days I start a project end up leaving all my tools and materials where I started for days. I have had to throw away material because I left them in the weather and they ended up useless.

Today I have had PHN for 4 years. 

Treatments:

3 Steroids injections

2 Intercostal Nerve Blocks

1 7% Capsacian Wrap

Lidocain patches

Predoxian

Therapeutic Massage

Acupuncture

Nothing works!!!!! I mean nothing. The best treatment is in a recliner with a pillow over the shingles scar area. I am happy in my chair.

What to avoid (Yes I say avoid)

Caffeine

Sugar

Alcohol

Overeating

Physical activity 

Talking

laughing

What sets of a pain cycle:

Temperature change 

Humidity

Showering (I can't have water splash on my side or I will scream)

Change of pressure (A door closing)

Hot or cool beverages or plate of food set in front of me or moved past behind me.

Wind

Slight brushes accross my scar area

Gently touching any part of my body 

Haircut 

laughing

Talking

Best treatments is TV, Playing with my little dog, and hanging out in a windless, dry, cool spot with my pillow over my side. Reading provides a distraction.

Four years now and I tell you it has made me laugh, cry, and want to die on many occasions. Fortunately I was always addicted to pain for 20 years service in the Special Operations. This is tough, it is life changing, it is more than I could ever bear. I have suffered. I have found and  lost myself and my relationship with my wife time and time again. I am so fortunate t have my wife. We finished our project and living comfortably.

I could not imagine going through this alone. I spent hours in  maths sitting in a chair. Having the strength to stand up and move slowly for a few minute and back in the chair for a few hours. Not talking just staring at the floor. Absolutely the complete opposite of my Hypernactivie self and wife.

This is my story, I applaud those that have moved on from PHN. I would never recommend this to a foe. 

I tell you to submit and surrender to the pain with a smile on your face. I pray we all get better and wish the best to you who suffer. We mayn't be able to stand with each other, but we can just smile and share the love for understanding of what chronic pain does to each of us for whatever human conditions we suffer with.

I love you my kindreds spirits and we will get better.

Read the book of JOB and see his experience with chronic pain.

Regards Ranger1

2

Hi Ranger

At least you have been a survivor, with plenty of grit to persevere.

I have now had P.H.N for three years, so I can understand your suffering.

After the initial burst of severe pain and a Shingles rash I discovered a very effective topical mixture that controls the pain reasonably well. 

Initially I was taking ibruprophen tablets about every two hours to control the pain and let me get short term sleep. Like you I had a severe constipation problem, as part of the affect of the virus.

I discovered a topical mixture that relieved the pain somewhat, and reduced my need for analgesics. After a few months I found that I could manage without analgesics if I applied the topical mixture as required for pain relief.

I have continued to apply this mixture to the pain areas twice daily, and now have no real problem with PHN.

The topical mixture is as follows :

250 grams of Invite Vitamin E Cream ( It does not form a skin with continued use ).

Two 5 gram tubes of Acyclovir Cream ( A cold Sore Cream used to treat a related virus  wink

65 grams of Dencorub Heat Gel ( An excellent painkiller, with a prolonged affect ).

Mix thoroughly, and apply sparingly as required for pain relief.

In my case the Shingles virus tries to return in the form of very irritating pimples on any part of the body. The Acyclovir Cream in the mixture eliminates  these outbreaks in  

about two week. so it is a vital part of the mixture.

This quantity should last for two to four months, depending on the frequency of application, so it is not expensive.

I am sure this mixture will overcome most of your suffering, and bring life back to almost normal.

Kind regards, Ray.

 

3

Hey Ranger! It is amazing how this stuff completely shuts everything that i want to do down. I related to every word of your story, sadly lol.

Just wanted to say hi!

3d

4

Raymond,

I appreciate the Magic Potion recipe. My wife will track it down and is already tracking.

Well it might help the sensitivity skin where the scar was. I will certainly look forward to that.

I really don't think this will help the deep throbbing pain, the nerve activity and the severe runners side aches ad the frost bite sensations as well. My case is bad and I have spoken to the best doctors in the VA and CDC.

Thes Dr's really don't understand PHN. I have found that ER doctors usually have the most real world experience.

Thank you very much Raymond and I will provide some feedback.

Ranger 1 

5

Hey 3D, 

Yeah the stuff really has complicated my life. Did you see the reply I got from Raymond. I will try his recommend potion. I am sure it could reduce the sensitive skin sensation where the scar was, but I have no faith t will reduce the nerve activity, the runners side aches, the frostbite burning and the throbbing and stabbing pain.

I was known for being the fastest, the strongest invincible person and PHN knocked me on my butt.

What a incapacitating weapon if it could be used to target and posing army. 

Hope you find some peace soon 3D. Always here to kick it around. Lets try Raymonds potion and see what happens.

Take care

Regards Ranger1.

 

6

Is it possible there are other things going on too? It is a horrible thing to try and discount a person's diagnosis and throw out something else, yet I'm going to try it. BTW, I've had PHN for the past year, shingles starting in October 2016, but I am doing much better than you. I'm sorry for what you're dealing with, but I also have thought about you for days, not sure what to reply, as your case is more debilitating that what I've read about here. However, I watched a documentary on PBS last night about ME/CFS and I thought of you.

This is from their website: It should be explained that there are a number of different names for what is an illness of uncertain cause affecting many thousands of people. Currently it is estimated that some 250,000 people in Britain are affected by this illness.

Myalgic Encephalopathy or “ME” (a term which The ME Association feels is more appropriate than the original, Myalgic Encephalomyelitis)

Chronic Fatigue Syndrome or “CFS”

Post-Viral Fatigue Syndrome or “PVFS”

Chronic Fatigue Immune Dysfunction Syndrome or “CFIDS”  

Many of us know it was CFS, but it is so much more than just "fatigue". Sadly, there's not much in the way of treatment (sound familiar?) but it could explain some of the more serious issues you have.  There seem to be SO many conditions with over-lapping symptoms of fatigue, pain, confusion, IBS, weakness but no good treatments. But even knowing others are there and trying to help, makes it a tad easier.  Take care.

7

Hi Ranger1. Just saw your post yesterday. I just passed my second year with PHN. And while my history is not as severe as yours, Iam not the same person. I still try to find moments of joy but many days I am anxious just anticipating how much pain I will experience. And I sleep poorly so hard to escape the ongoing worries and concern. With winter here I spend a great deal  of time snuggled into the corner of our old sectional, covered with my fuzzy blanket, petting my dog. Watch a lot of HGTV and try to read. My husband continues to be wonderfully supportive and tries everything he can think of to try to accommodate me and make me more comfortable!

God bless you. All we can do is hope for better, more effective treatments. Thanks for sharing. Jeaneen

8

Hi Ranger1. Just saw your post yesterday. I just passed my second year with PHN. And while my history is not as severe as yours, Iam not the same person. I still try to find moments of joy but many days I am anxious just anticipating how much pain I will experience. And I sleep poorly so hard to escape the ongoing worries and concern. With winter here I spend a great deal  of time snuggled into the corner of our old sectional, covered with my fuzzy blanket, petting my dog. Watch a lot of HGTV and try to read. My husband continues to be wonderfully supportive and tries everything he can think of to try to accommodate me and make me more comfortable!

God bless you. All we can do is hope for better, more effective treatments. Thanks for sharing. Jeaneen

9

Hello Ranger, are you still there?  

I just read your post.  I am new to the site and trying to find someone who has gotten better.  I also had the worst case 5 doctors had seen, and had blisters on and off for 3 months, in spite of anti-virals.  In fact i have been on anti-virals for 4 months now.  I am young and still working (as a ranger, actually).  I work part-time and have to go back to work in May full-time to keep my job and benefits.  May will be a year for shingles and PHN.

I am so scared b/c I don't feel better, really.  i have on Lyrica  150 mg 2x/day.  I still take one Nycenta pain pill every night.  I am in constant pain and nights are so bad I can't really do anything.  I have a 12-year old son and husband.  

Please tell me you are getting better.

I really want to try the capcasin 8% patch.  Did you get any relief?  Was it terribly painful to have applied?

I have tried the intercostal injections (3x) and all they do is stir up the pain.

I just want to die most of the time, but have to work to bring home the medical benefit and need to see my son grow up.  

help.  

10

We are here to help. I had undiagnosed shingles in October 2016 so I’ve had PHN for over a year and I AM getting better. But it’s been a long road and I don’t know if I’ll have a full recovery.  The hard truth is that everyone is different  so it’s hard to predict how you’ll do. Here are some things that have helped me. I take gabapentin, not Lyrica. They’re similar but some have better luck and fewer side effects with one vs the other. I also use Asprecreme 3 times a day, along with extra strength Tylenol and a previous prescription anti-inflammatory. What may be very hard for you to do is to rest and curtail activity or. movement that makes it worse. Between the meds and the pain I decided to stop working, as it was too hard. Mine was in my back and chest so my doctor suggested I avoid firing up the nerves so I limit twisting, lifting and bending. However, it’s just me and my husband and he’s been extremely helpful. Most people aren’t able to do that. 

i also wondered if I’d ever get better, but it is happening. I’ve been able to slowly decrease my Gab and get more active and get my life closer to what I used to have.  I also recommend reading the thread about PHN Ann depression. There’s good, helpful info there.  

Hang in there. There will be good and bad days, but most people see some improvement with time.

11

Hi there. So hard to know how to respond. I have had PHN for two years. My pain is not as intense as it was in the beginning, but I do take pain med (oxycodone) on a pretty regular basis. With everyone so concerned about the abuse of opiotes my PCP is having me attempt a dose reduction. I also take 200mg of Lyrica twice daily. I still have pain on a daily basis and difficulty sleeping. Fortunately my PHN developed just at the time of my retirement so many days I don’t have to leave the house.

I know there is great controversy re the use of pain meds, but it

sounds like you need much better pain control Kwell. Certainly at least in the short run. Have no idea where you live but I hope your health care provider knows how you are suffering. There are days where I feel I can no longer cope but try to press forward. You are not alone. I hope you can get better pain control. In my thoughts and prayers. Jeaneen

12

No

My doctor is very thorough.Not to insult or belittle, But is very obvious you dont have PHN.

If you do you would understand.

Rgr1

13

I am so sorry  I did not get back to  you. The capsaicin wrap worked for about three days.

Yes it burned after the 30 minutes and then got real hot after that and removed in 50 minutes.

Time is the cure. I am getting better but it is slow process and the cycles of pain sometimes come back worse then the last three to four. But I feel some improvement.

I Am on 225mg Lyrica 2 x day. I use my pillow when it hurts so bad. Get still and smother the burn and pain until itch,ms down.Mornings are the worse time of day.

You will get better over years. I am so sorry for you suffering. JOB in the bible also suffered and read his story.

God's love has actually help memory than anything I can do. His love, joy, peace and rightousness provide all.

RGR1

14

I am so sorry  I did not get back to  you.  So fortunate you are getting better

Time is the cure. Just management I am getting better but it is slow process and the cycles of pain sometimes come back worse then the last three to four. But I feel some improvement.

I Am on 225mg Lyrica 2 x day. I use my pillow when it hurts so bad. Get still and smother the burn and pain until itch,ms down.Mornings are the worse time of day.

I am so sorry for you suffering. JOB in the bible also suffered and read his story.

God's love has actually help me more than anything I can do. His love, joy, peace and rightousness provide all.

RGR1

15

How easy for a microscopic nerve line to knock down a burly dude or just a simple country girl.  7 years for me this June.  I’m past the complaining and whining to others.  Trying to offer what I’ve found helps in hopes to ease someone else’s burdens,  I’ve tried and ditched countless meds (including lyrica and neurontin).  I’m sticking with Amitriptyline and 1/2 a hydrocodone daily (thanks to my state’s severe crackdown on opioid use).  When that isn’t enough, I take hot epsom salt baths (magnesium helps a lot!) for the sharp, achey, or jumpy nerves,  sleep with an electric hot pad, use Tiger Balm or Biofreeze or Salonpas spray for the sunburn pain and “don’t touch me” pain. It’s not complete pain control, but it makes life tolerable.  I’ve also learned to “pre-treat” when I know what I’m about to do will likely set off pain.  It helps at least half the time, which is good progress for me.  The topical applications I mentioned confuse the nerves with the icy sensation which sometimes does stop or prevent pain.  I need to walk even in humid days, so pretreating can help.  

Hope this gives you something new t use.  God is faithful to comfort - 2 Cor 1:4.

16

What wonderful sound advice.  It’s a hard road to get to that acceptance but it does make things easier in a way. Your line about Don’t touch me Pain is very familiar. Peace.