Here I go again with another shingles outbreak & PHN
Posted , 8 users are following.
My first shingles outbreak was at age 14 on my left mid back. Treated with acyclovir and went away.
Flash forward to 2014, at age 40 I went to doctor because I had been sick for a week and oh by the way I think there is a spider bite on my left butt cheek. It was shingles and treated with Valtrex and steroids for my other symptoms. This outbreak went away with no PHN.
July 20, 2015 I was having pain itching on my left butt cheek again. A friend looked and didn't see anything, but I woke up the next day knowing for sure it was shingles. I went to the doctor right away and got on Valtrex and Pain meds. This outbreak was much worse than the last and in the same spot on my left buttock. PHN started from there. Since then I've had an outbreak every 5-7 months. 2/2016, 8/2016, and 1/2017 and always in the same place.
Now I'm experiencing fever, headaches, dizziness, and general Malaise for the last 5 days. Increased pain in my left glutt makes me concerned I'm having another outbreak. It's only been not quite 3 months. I have finally started to get my energy back after the last outbreak in January.
As far as treatment I've been on or tried just about every medical and several alternative treatments to help with pain control and attempts to prevent further outbreaks. My current meds include; Acyclovir, Tramadol, Lyrica, Duloxetine, Venlafaxine, Lortab, and I also take Vit. C, D, multivitamin and a probiotic with fiber. My GI doctor also just started me on Relistor for the opiod induced constipation. (Fun times, NOT!)
As far as doctors my GP has been the most help to me. She referred me to a pain dr. He tried a couple injections that only gave me relief for a month or two. He tried some laser treatments, I had an outbreak during those treatments. After that he referred me back to my GP and said to take Lyrica instead of Gabepentin that Lyrica was more effective for PHN. My GP tried to refer me to a neurologist and they wouldn't see me. They said there was nothing they could do. I did finally get to the neurologist through my gynecologist, and they indeed could not do anything for me. Neuro sent me to the pain clinic who referred me to the pain psychologist. It seems my GP had already tried everything they knew of for my pain. They could also refer me to St. Louis to try a treatment with Capsaicin that required inpatient treatment with general anesthesia to help control pain from treatments. This is not worth the risk at this time, especially since I continue to have outbreaks.
My failed treatments include; gabepentin, topamax, lidocaine patches and cream, lysine, natural pain relievers with brown seaweed. There may be others but I can't think of them now.
Trying to work part time and I can't even do that successfully. I'm lucky enough that my employer puts up with it for now. I've only been employed there for 9 months and still on probation because of my attendance.
I applied for disability per my vocational rehab counselor after I lost my job that I worked at for 5 years. I couldn't perform my job duties with not being able to sit very long and only being able to control pain with narcotics.
My disability case is now awaiting judge review after being denied twice. It should be reviewed soon since they are asking for updated records.
The daily wear on a person mentally and physically is tiring. Trying to support my children and myself on part time pay is not working. I want to work to support my family however I feel as if working makes my symptoms worse and adds to the reliance on pain meds especially narcotics. My current employer is okay with me taking pain meds, but I'm fairly certain if they knew how much I had to take to get through a day I would lose my job. I went back to school for medical billing and Coding. A job I could do from home. I'm certified now but the odds of me getting and keeping a job with all the pain and other affects from having this chronic illness are not very good. I pray daily that things improve and I have better function.
I'm currently seeing the pain psychologist who is helping me to accept the pain and be able to function despite the pain. It's a hard realization when you have to accept that the pain isn't going away.
I know there are those of you out there who have dealt with this longer and can help me put things in perspective. My post is long and I've tried to summarized everything that has happened. It's been a long almost 2 years since this PHN began. Any advice you can give me I'm open to. Right now my main goal is to not increase the narcotic pain meds I take any more and find a way to accept and move forward with pain.
1 like, 17 replies
Caseysue Lainyar
Posted
I have had PHN since August of 2008. I have tried most of the meds as you. I have had internal shingles since my first in 2008. My location is from my navel around to my spine. I have been told that shingles follow a nerve path. I wonder where yours start since your outbreak is located as you describe. Having had PHN this long I have found a way to live a somewhat normal life. The summer months and any type of heat make my pain flair. Even showering causes the pain. I only shower to wash my hair, I take a warm bath and it's a quick one daily. I wish I had an answer for you. It seems the medical community simply has no answers.
paulbklyn Caseysue
Posted
Your right there is no answer, all they do is try, to get you some
relief so you can function somewhat
Have a wonderful day
Paul
Lainyar Caseysue
Posted
See my reply to Paul. I cover your questions as well. Shower and bathing are definitely not fun but necessary. Baths are a no go for me because it requires me to sit on a hard surface in warm water, Ouch!
Best of luck to you in your life. I hope to get where I feel as if I'm functioning "normal".
paulbklyn Lainyar
Posted
Hi Lainyar
I'm Paul, sorry to read your going thru all those outbreaks of
shingles. Did you take the vaccination?
Hope you get some relief.
In 3 yrs i'm on my 4th pain dr, he seams to ne trying.
Have the spinal cord stinulator inplanted 6 months ago,
not really giving me any relief.
Most of my pain is at night when I try to sleep. I usually
go to bed at 5am to 10am if i'm lucky.
This is the place to vent, I wish you all the best
Paul
Lainyar paulbklyn
Posted
Since I'm only 43 I'm not old enough for the vaccine. I've also been told when you have a shingles outbreak it's like inoculating yourself and it should cause antibodies in your body to fight the virus. Not sure if it's true or not. I've heard there is a more effective vaccine coming out soon...
Your right about pain being worse at night. Summer seems to be easier on the pain since I can wear dresses and skirts light weight fabrics. Not sure this would work for you.
A neurologist told me that my virus is in my S1-S2 area and affects mostly my superior gluteal nerve as far as the rash is concerned. The effects on my nerves seem to extend past that nerve. The bundle branch seems to be affected and other nerves that extend from there. It's maddening for sure!
I research a lot!
Best of luck to you!
ruth57682 Lainyar
Posted
I can hardly imagine what you are going through. I am so sorry. Have these doctors mentioned how unusual this is to keep getting outbreaks? Anyone else out there have experiences like this. I am still dealing with PHN at 9 months. Once in a while I feel it is better and then Wham! I get awful pain again. I can deal with it on the better days but for you to keep recurring is unimaginable. I have tried most of the meds and found they don't work for me. I still take gabapentin but mostly for neuropathy. I still can't be comfortable with clothes on. How in the world can you go to work? I hope the disability comes through for you. You certainly have my sympathy.
Caseysue ruth57682
Posted
Ruth,
I worked full time from 2008-2016 with PHN. I had to change my outfits. I can't wear anything right around my waist. Went to long flowing type tunics so I could wear larger pants or skirts....I can't hardly stand to wear a bra and when I would get home it was the first thing off. I retired last April. I wear house dresses very light weight. When I go out I apply Aspercreme with 4%Lidocaine. It helps.
I have taken Lyrics, Gabapen, Tromadyl.
I now only use the cream....After almost 9 yrs. I am just dealing with it. As I said heat makes it worse. I live in New Orleans. Therefore, I no longer spend much time outdoors....
ruth57682 Caseysue
Posted
I cannot wear a bra even for 5 minutes. If I have to go out I wear a soft T shirt with a vest over. I live in Colorado so it is cooler here. Don't know what I will do in summer! My pain is mid back underarm and chest. Can barely tolerate seams under arm. This is an awful place to have constant pain. I think what could be worse is around the face which many on this forum have. I do get some relief from the lidocaine cream. Especially at nite and after a shower which is a painful affair. I think a bath would be even worse unless it was cool and that doesn't sound like fun either!
Lainyar ruth57682
Posted
Thank you Ruth. I've learned to adapt by wearing loose fitting garments and I can't wear underwear at all. Summer in Iowa can get hot and sticky but it still is much nicer when I can wear sun dresses and long skirts. Winter can get trick with bitter cold. Mostly You adapt.
Best of luck to you and I hope you get better and don't keep suffering yourself. I've adopted the AA Moro of one day at a time here.
raymond24308 Lainyar
Posted
Lainyar
I feel your need very much, as I have experienced similar Shingles problems, following the initial outbreak in February 2015.
I delayed initial treatment and ended up with Post Herpetic Neuralgia, and this has continued since that time.
I am familiar with the "spider" bite which turns into shingles if left untreated. In my case it commences as a very irritating pimple and grows into a very irritating boil in about a week if left untreated.
I treat these outbreaks with my topical cream, which contains Aciclovir Cream, and they go away in about two weeks. It is a constant vigil, as these outbreaks appear anywhere on the body, from time to time. The shingles virus is still active after two years, so I cannot be complacent.
I am sure my topical treatment will overcome your problem, and reduce your suffering to a tolerable level.
My mixture is 250 grams of Invite Vitamin E Cream, two 5 gram tubes of Aciclovir Cream, and 65 grams of Dencorub Heat Gel.
Mix thoroughly, apply sparingly to the affected area to remove the viral infection and relieve the pain. Treat irritating pimples by rubbing vigorously for one minute.
I find that twice daily treatment is required to keep the pain under control, but more frequent treatment is not detrimental.
I am sure you will get great benefit from this treatment, and avoid the need for excessive analgesics to relieve the pain.
Kind regards, Ray.
Caseysue raymond24308
Posted
I have not heard of the spider bite you wrote about. I got shingles in August 2008. Rash from navel around to my spine. It was a very bad case. I will every once in a while get very painful in same area. I've been told this is under the skin case of shingles. Painful burning and itching. I use Aspercreme with 4% Lidocaine. Even been known to use ice bags to get the area as cold and numb as I can.
Lainyar raymond24308
Posted
Ray,
Do you use your cream just during breakouts or all the time?
Mine show up as clusters in the same spot. If I don't start treatment I will have several of them along the nerve. Pain can extend past the clusters in the general vacinity of the nerves. At this point the covers my entire buttock and around to my hip, especially during an outbreak.
Thank you for the recommendation. I will have to try it.
Best regards to you as well!
Lainy
Lainyar Caseysue
Posted
For me it was a case of I couldn't really see it very well and before I went to the doctor it reminded me of a bad spider/insect bite with the burning and itching.
I haven't tried aspercreme. Lidocaine 5% is minimally helpful and rubs of or soaks into my clothing. Funny because if I use it enough I walk around with a "spot" on the back of my pants or skirt. Does the Aspircream soak in to the skin like lotion? I've considered getting some capsaicin cream to try but I've heard it burns and I don't need more pain. Lol!
Yours sounds nasty too with wrapping around the waste. Take care!
Lainy
raymond24308 Lainyar
Posted
Yes, I use the mixture twice daily to overcome PHN pain and avoid new breakouts.
If you treat the pain areas and any new outbreaks, the problem should recede and become controlled to a modest pain level that does not restrict normal activities.
Best regards Ray.
Lainyar raymond24308
Posted
Lainy
Caseysue Lainyar
Posted