Skip to content
carolyn32091

PHN frustrations

Hi.  Well I am like a lot of you...been trying multiple things to help the pain through a pain management specialist to no avail.  I had shingles about 3-4 years ago.  It was a really bad summer for mosquitoes.  I started having pain around my spine to the my lower left side.  I saw what I thought were bites.  I treated them as such because of how bad the bugs were that summer.  Then I saw more.  I panicked and thought I had bed bugs.  Tore the whole house apart basically cleaning everything.  Still had the itchy papules...but they burned!  So finally after a while and nothing going away I finally went to the urgent care clinic.  Come to find out I had shingles.  He asked me why I waited so long to get treatment. Well, I never would've even guessed it was shingles.  I was put on an antiviral and they cleared up.

Since that time, I have still been in pain.  What's weird is that the pain is near my spine where the outbreak hit but it goes to the right more than the left (where the rash was).  Sitting with my back pressed against anything is painful.  I cannot sleep on my back.   I do have 3 herniated discs in my back but according to my ortho doc, my pain is not near those 3 discs (well I do have some pain but it isn't this weird burning/achy/aggravating pain).  

I am on Cymbalta which isn't helping.  I tried spinal injections, trigger injections, PT, muscle relaxants (but I think that's because I hurt so bad that I tense up), ibuprofen, lidocaine patches, other pain patches.  I was given gabapentin but I was nervous to take it due to side effects, but now I am wondering if I should give it a shot.  I mean, the Cymbalta already caused me to gain weight (food consumption hasn't really changed) so I guess the gabapentin isn't going to do any worse.  I am trying CBD oil but either it doesn't work for me or I'm too low a dose at the moment.  It's so frustrating. The pain doctor is very understanding but it just seems like in this realm there's so much trial and error in trying to treat this.  I'd be happy if I could get my pain down at least by half but so far, nothing.

The whole thing is so frustrating.  I'm 47, work full-time and have 2 very active kids.  I know you all have lives, too, and really have no time to be dealing with the pain but somehow we all still do.  It sometimes wakes me up at night so I deal with insomnia sometimes as well.  

I just had to get this out.   

Anyone have any luck with gabapentin?  Should I even bother?  I see my pain management specialist in a few days.  Really not sure where the next step should go.  

Hang in there, everyone.  

13 Replies

  • carolyn32091

    Find the thread here called PHN—Things That Work. It’s helpful. 

    Finding things that help A LITTLE, then using all of them, has been helpful for me. I found that Aspercreme, triamcinolone acetonide cream, meditation, and Cognitive Behavior Therapy (CBT) were the most helpful. These plus working at resuming previous activities got me through the worst years of my PHN to where I am now—it is there but is very tolerable, more of an annoyance. 

  • carolyn32091

    I had shingles and PHN for 1 3/4 yrs. now.  I was as high as 2700 mg. Gabapentin but mostly around 1800 mg.  It helped me but did make me sleepy.  I decided about 5 mos. ago to wean myself off and gradually reduced my dosage very slowly 300mg at a time.  Took 5 mos. but I've been off about a month and doing the same as if I was on it. I was also on many of the meds other people mention. I take extra strength tylenol if I've too much pain and use aspercreme 2-4x/day in my pain area.  I have PHN in my forehead, eye, top of head.  I can't take wind, wear a hat or touch my head without it feeling like a knife cutting through it but I grin and bear it.  If I'm concentrating on something else I forget about my pain.  Cold water as Charlie has mentioned has helped and I use cold water when washing my hair which I do gingerly and fight through the pain.  I hate brushing my hair.  Hope you find what works.

  • carolyn32091

    If you are buying cbd oil over the counter you are wasting your money.

    it is a rip off.

    you need medical cannabis or cannabis period.

    i need high level THC for the pain and others might as well.

    it does help to get stoned.

     

    • lisa65143

      As far as I know, Indiana still hasn't approved the use of medical cannabis as of yet.  But my state is pretty backwards on everything anyway...we JUST recently passed a law that allows people to buy liquor on Sundays so that just shows you right there.  

    • lisa65143

      My pain management doc won't prescribe opioids.  My primary doc would but only short-term. So if they would help, I couldn't take them for very long.  Actually, as I am writing this, if he did only give them short-term and I used them only on really really bad days it may not be a bad idea.  I have pain all the time but some days it is unbearable and others it isn't....hmmm.  

  • carolyn32091

    Hi Carolyn. Wish I'd seen your post earlier. I have alot of information I can share with you. OK but first, where do you live? What kind of insurance coverage do you have? And what happened at your doctor's appointment? What is he board certified in? Neurology, internal medicine, pain, or general/family doc? This is a good staring place for us and I can share/advise further from this information. I look forward to hearing from you. I'll be watching out for your post.

    Bonnie

    • bonnie94603

      Hi Bonnie,

      I live in Indiana and have Anthem insurance.  The doctor I am seeing is a pain management doctor.  I did start with an orthopedic surgeon as I have other issues (herniated discs) but the problem is my pain is not near those discs so when they would give me injections, the pain was helped in those areas but not in the one area where my shingles were close to.  He moved me to the pain management doc who has had me try multiple things.  I was worried about my kidneys as the pain is there but my urine labs showed absolutely nothing.  The pain is around my spine but it radiates to below my right shoulder blade.  The shingles I had 4 years ago started at my spine and went to the left around my waist.  It is all really weird.  The only thing I haven't tried that was offered is the gabapentin/Lyrica route as I can't get past all the bad side effects I have read about.  My pain doc said I am not being completely compliant.  Well for good reason!  That med really scares me!  I have tried everything else, though...shots, PT, nonopiod pain meds, muscle relaxants, CBD oil (still trying that), TENS unit, topical creams, Lidocaine patches, etc.  My next thought is acupuncture.  

      I had my updated MRI scan...I won't know anything about it until my appointment in a couple weeks.  

      I will take any information I can get.  The only time I am not hurting is when I am lying on my left side.  Sitting at work is HORRIBLE.  Sitting in the car can be bad.  Some days I can just feel my clothing hitting it and I'm miserable.  My psychotherapist asked me if I had considered asking if I could be put on another dosage of the antiviral they give shingles patients when they have the shingles wondering if maybe something is going on that we can't see.  I am also taking a zinc supplement as she mentioned that zinc is known for its antiviral properties.  My pill organizer is just loaded with pills/supplements to try to stop this and I feel like I am getting nowhere.  Sometimes an ice pack will help temporarily.  

      Sorry for going on and on...just so frustrated.  

    • carolyn32091

      I just found your post this afternoon. I hope to encourage you to keep at it. I "bloomed" with shingles several days after seeing the Lyme target shaped rash in 2013. As you already know shingles is awful. My doctor started me on Lyrica two days after first seeing the rash from my spine, under my right arm and to the sternum. We moved on to Rx lidocaine liquid, then lidocaine patches, then gabapentin, and then oxycodone.  She kept increasing the strength but the pain continued and I was nauseous and couldn't eat. I lost 26lbs and wound up hospitalized for four days on IV morphine. A gastroenterologist figured out that I'm intolerant of oxycodone and prescribed Tramadol which did knock back the pain better than the ibuphophen.  I went on to try acupuncture (halted because the nerve was so inflamed that the acupuncture aggravated the pain!) and settled on weekly yoga, meditation, monthly Tui-Na (a Chinese form of medical massage) and ibuprofen at night to fall asleep. The nerve remains sensitive, but I can live with it during the day when I focus on other things. Cold water helps. But I still cannot use the upper part of a seat-belt, which touches on and aggravates the burning along that nerve. And I've found that avoiding bras and any rough textured tops helps too. (Hard to do if the PHN in on your head, I know.) But the point is you persevere, and try EVERYTHING. PHN a bear to have. But I also know of friends/family who had shingles and responded beautifully to Lyrica. Or gabapentin. Or liocaine. There seems to be a lot of individual difference in how each of our bodies respond. I try and focus on how much better it is five years in, instead of focusing on how much it still burns. That 'ain't easy' some days. In the Silver Lining Department, my doctor said that we have "self-vaccinated." However, she just told me to get the new Shingrix vaccine anyway. It last longer and protects better and ever works to prevent PHS. I can't imagine going through that again!!

      :-)

  • carolyn32091

    If you find the miracle let me know. I have tried it all you have listed and then some. I have a spinal cord stimulator implanted, have had nerve ablation, capsacin patch, acupuncture, nerve blocks and every med out there. I hated the gabapentin and Lyrica. both made me gain weight and changed my mood, ALSO didn't relieve anything after 2 days. I just turned 39 and have had this for over 2.5 years. I am constantly looking to see if I can find anything new to try and help at the littlest. Mine is all on my bra line from sternum to spinal cord so wearing a bra can be hell dependent on the day. I do find out when I work out that I have a good relief. It can get quite depressing but at least I can come on here and find others who understand what I am going through. I hope it might work for you. If you can think of something I HAVENT tried, I would love to hear..... GOOD LUCK

Report as inappropriate

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.