Lidoderm

All the best to you!

Kiuuy

Hi babs, 

I think we have had similar experiences with shingles. Our rash was in the same area as I recall. My shingles began Nov 2016 about the same time as yours started. I too have had PHN ever since. I can't use prescription drugs or any strong meds so I've had to come up with my own remedies. 

I hope Jeannie is reading this post because I wanted to tell her that although I still have PHN, my pain is much better than it was. I was in agony for months but very gradually my pain has improved to the point I don't even notice it sometimes. I thought my life was over and I'd never work again. But, I have even gone back to my job. I also use Aspercream with Lidocaine as well as CeraVe cream and aloe vera gel. These seem to help me enough so that I can function close to normally. I used gel ice packs for months. But, now I don't need them. However, I have lingering effects from shingles like being tired a lot, not having the energy I once had, ever-present anxiety and an increased sensitivity to a lot of things that never bothered me. Also, if I over do it at all or am extra stressed, I have to pay for it because I am so exhausted I can barely move.

I have to be much more careful about how I live now than I was before. I also eat a restricted diet avoiding any shingles trigger foods I used to love like sugar and chocolate. I must admit I am thankful everyday just to be able to once again wear a bra or take long walks. Shingles has left me with long lasting problems but if I am careful and diligent my PHN symptoms may get even better as the months go by. I'll remain hopeful. 

Tiff, you're wearing a bra!! I'm SO jealous! I've tried one for short periods of time, so it's going better, but I still have 2-3 bra extenders in it. We seem to have the same improvement curve. It was SO gradual that I could only measure it in weeks or months, then about a month ago, I saw a real improvement, less pain, shorter duration of the pain that I had and generally just feeling better. I'm also reducing the Gab (still on 1200 mgs) which I think helped. Sugar and Chocolate are no-no's? OH NO!! I've heard that before, but I do allow myself on piece of chocolate a day and a few cookies for dessert. I'm also trying to lose the weight that the inactivity put on. Yes, still have some anxiety and the Gab still causes bouts of depression, but who knows how much is us or the disease?

I do think we'll get much better. Three weeks ago, I suddenly thought "I'm getting better". That was a real break through. I knew there was improvement, but I never felt that I was getting better, just less awful. But Charlie and others have said that you DO get to the point that it becomes more of an annoyance than a major impact on your life. Jeannie, if you still have the Aspercreme, why not give it a try? Unless you have a rash/allergic reaction, it won't hurt.

Babs, thank heavens I don't need constricting underwear ! Well I am a 70 year old man !!  I have in fact lost significant weight, down from from 78 kg to 65 kg , about 29 pounds, thanks to Shingles .... Early on, I lost my appetite, and had occasional nausea. Anyhow, so pleased that you are on the road to recovery. Best Wishes, Colin, England.

I got some weird glitch last night too when I tried to sign on. Why can't you take the Gab? I hate the side effects and tapering down is miserable, but it DID help with the pain. What about Lyrica instead? Some people have better luck with that. BTW, regarding the Lidoderm products, some days nothing seems to help. Just because it can! Other times I know I've over done it, so that's why I hurt more.

I can’t take Gabapentin because I am allergic to Lyrica and they are essentially pharmaceutical cousins. My Dr said Gabapentin was even stronger. A little uneasy about taking. Dr offered amytriptyline but that makes me so sleepy I can’t function. OTC Advil does better than Alleve or Tylenol and Norco is what I save for night pain. 

I too find this the worst pain I have ever experienced in my life!  I have had extensive oral surgery, gall stones and surgery ( not laparoscopic), kidney stones, breast surgery twic

......,twice, uterine cancer surgery, ( not laparoscopic), two broken bones and two children, back pain with epidural injection . But this..... this nerve pain is worse than all of the above put together!!!!  The Lidoderm is just ok, takes at least an hour to hour and a half for Norco to take effect. Gel ice packs work as good as anything. In addition, just when you feel better and get more active, it seems that the activity sets you back and then it starts all over again!!  My hope is in the Lord for there is not much to offer outside of Him!!

Collin, thank you for your best wishes. Millwood are you in the US? Just asking as I'm about to rant a little about the health care system here as it's been taken over by the gvmt. and the insurance cos. themselves has been proven to me to be outrageous in it's inability to render proper cures for this. I cannot get effective pain relief meds due to govt restrictions and have to go though "all available means" of treatment before I can receive the ablation. Here's an excerpt from The National Health Institute's report regarding Trigemital Ablation and it's effectiveness: "After percutaneous RF rhizotomy, initial pain relief can be achieved in 98% of patients, as high as that obtained with MVD.28 Among the various interventional pain therapies, RF rhizotomy offers the highest rate of complete pain relief." 98%!!!! And yet we have to go through months or years of pain to go through procedures that may or may not work! And take mind and personality altering drugs like gabapentin and Lyrica. My Pain Management Dr. said he wouldn't prescribe Lyrica to a dog. Just because the insurance companies are allowed to dictate options to keep their bottom lines flush while we the suffering patients try to continue with our lives with 24/7/365 unrelenting, excruciating pain!

I'm sorry Barclay, I too have heard that facial shingles is the worst. I agree with a lot of the complaints about our healthcare, but I've been in contact with a researcher who works on nerve pain who said it is one of the most difficult types of pain to treat. Are the results for treatment your quoting from regarding shingles/PHN pain, or from Trigeminal nerve problems? I have a very unscientific theory regarding this difficulty--think of the nerves like roots in a nasty weed. They can be so small and branch out in so many places that it's difficult to get the right area treated. I think that explains why we may have in theory, a nerve affected in one part of our body, but can feel pain elsewhere too. My doctor had told me which nerve area it was for me, but I don't remember. I hope the injection helps.

Personally, I'm very cautious of any type of invasive procedure. I worked as a medical secretary in both a hospital and a clinic and know that anytime you do something to the body like that, you can have a negative impact. For me, the Gab did help.

I had shingles 3 times since mid 2015 - thru Jan. 2016 , It’s not fun.   Nov. of 2016 I was diagnosed with stage 4 leukemia, so that expaned my immune system. If I would have lived 5 more years  the cancer center would call that a success. They claim it is not cureable. Before cemo was to start , I completely killed the cancer. God made fruits that works. I ate Granabana fruit pulp. It worked for me, Just had more blood work this pass week, I’m cancer free , not remissions I killed it. I now eat a lot healthier. I drink beet,carrot,& apple juice every morning  I mix Granabana & tamarind fruit pulp with organic carrot & apple juice in smoothies at least 3 times a week. Both these fruits are highly antiviral , that’s probley all I need to never get shingles again. But now I started eating raw garlic , I cut up 2 cloves a day and take it like a pill. Everything I done worked for me.

I am so sorry you are having great difficulty. I know the location of shingles and it’s aftermath is very important as all is not the same. Anything around the face, head and especially eyes is worse in pain and complications. Be sure you are being followed by an OPTHOMOLOGIST!  

It is very distressing to say the least. As a nurse I have always known about shingles, thought I was knowledgeable but until it is experienced personally no one really knows! It is a very weird disease as I am finding out. I will be praying for you and all of us suffering with this . 

Babs, thank you for your wishes and support. I get the idea of the root theory but the roots have to start from the lipisome (as it were) and according to the reports/studies I've read that's the Trigeminal nerve root. It;s just disheartening to know there's a successful treatment (98%) out there that I'm 'not allowed' to get to because I 'have' to go through the steps and stages while suffering so much. Interestingly enough in my search for some rest I took-for the first time-some valium to get some sleep. I slept from 3:00AM to 5:30AM I and woke up tingle/painful itch free for the 1st time in 3 months. I still had that severe sunburned feelings but the insane tingling had dissipated. Now as the day wore on they came back. I wonder if it's an effect of the drug or of being able to sleep...or a combo of both. Going to try it again tonight as it was a joy to wake up without clawing at my face.

Thank you all again for the wishes and suggestions. 

I share Bab's concern about invasive treatments. I had hefty dose of radiotherapy 40 years ago. As the the years go by I get comments such as `you have got scar tissue there' or you have telengectasia (spelling?) blood vessels there. No big surprise I tell the Docs, I did get `microwaved' all those years ago ........ and then one said - Well, you have had 40 years !   I cannot disagree ......

Valium (Diazepam?) makes no difference to me at 2 to 4 mg. But if it works for you, good news. Watch out for `drowsy' effects if the driving though !