What level is your PHN pain? How much better than before?
Posted , 8 users are following.
I was first diagnosed back in early November 2016 and just realized (duh) that it's now PHN. At first I was very upset, but after a few days, realized I AM improving, my worst pain is NOTHING like the early days of shingles, my life is more "normal" and I can start to decrease my Gab. At my highest, I was at 2400 mg/day. I decreased to 2100 two months ago, but after a week, went back up to 2200. I'm now at 2000.
The worst pain in the beginning I'd call an 8-9 (sobbing, pacing), then for weeks I could get it down to 4-7, then finally 3-4. So now at 2000 mg of Gab plus 4% lidocaine pain cream and Tylenol every 5 hours, and a previously prescribed NSAID, I'm at about a 1.5-2.5. So, for me, that's a great reduction in pain, increased activity with only a small amount of pain, and a clearer brain as I'm at a "lower" dose of Gab. At its worse, my husband was doing everything--cooking, cleaning, wash, driving etc. I was out of work for two months between the Gab brain and the pain but I now have a more normal life. There are still many activities I have to limit or had to give up (for now) but I see a light at the end of the tunnel.
I wonder if doctors really don't know much about PHN. Yeah of COURSE they don't, they hardly know anything shingles, right? Anyway, my original question is, have you had a great improvement before you felt you had PHN, are you still recovering or have you unfortunately had only a slight improvement and have stopped recovery?
0 likes, 26 replies
frankjs babs99203
Posted
My biggest concern or complaint is that the medical industry doesn't seem to be concerned. I am an engineer by trade and when something breaks or doesn't work you fix it at the source; you don't patch it, put a band aid on it or throw drugs at it. I thought the medical community was much further ahead in neuro science; it appears they are really nowhere. Maybe there just isn't enough money or funding. If my numbers are correct I think I read that 25% of people over 65 get Shingles and 12% of them end up with PHN. That is a lot of people and the numbers are growing. That's my rant for today.
sheila48912 frankjs
Posted
As the baby boomers are the largest age group of the population the numbers of PHN sufferers will continue to increase. Perhaps as a result of this doctors and neurologists will put their heads together and come up with viable options to help us. I am of the personal opinion that the new stem cell therapy that it is being used in other countries (FDA has not approved use of ones own cells) may our only hope. The therapy centers in the US do not use your own stem cells whereas in the Bahamas that center harvests your Stem Cell's and places them in areas that are damaged. It is my understanding that Stem Cell's replicate and move to other areas that need repairing throughout the body. I think it is worth pursuing.
babs99203
Posted
I tried to reply to everyone, but here's more I wanted to share. I worked in healthcare for over 30 years as a medical secretary, so when I developed shingles, I read everything I could find, and thank God found this forum. In my research I read that being a 61 y/o F who had severe pain and no anti-virals, I was at greater risk for PHN. A pain specialist also told me to avoid any activity that could set off the pain, as the nerves needed to rest as much as possible. Luckily my GP had the same thought. I also had a VERY helpful husband. Some info also said that Gab could help prevent PHN.
So, here we all are, with various levels of length of condition, pain and normalcy in our lives. So why in God's name doesn't anyone do more research on this? Millions of people are dealing with this, yet no--one seems to care. I guess there must not be enough money. Even finding reliable, accurate info or a good forum was nearly impossible. I'm sure you agree with me that the myths of "you only get it once", "it's only for old people", "you have to be immuno-compromised" etc. are frustrating and even harmful.
Frank, my daughter is an electrical engineer and I have that same analytical brain. Rant on buddy! I agree. I guess we've got to help each other and maybe someone else notice this.
michael5678 babs99203
Posted
know that it is not going away anytime soon. Its been four years. I have been dealing with this since I got MS long ago. My Pain with all meds Gaba, patch, nortrip, and sleep. Its about a level four maybe five. It gets up to a 6 and 7 on bad days. Ive tried everything. Lyrica, gabapentine, lidocane creame 4mgs and patch 5mgs, cymbalta, tegretol, morphine, and canobinoids. I just need a good counselor.
babs99203 michael5678
Posted
ruth57682 babs99203
Posted
sheila48912 babs99203
Posted
My condition has worsened as a result of surgeries that seemed to cause further damage. The pain has moved up into my chest region where I had to have two hernias repaired from heart surgery chest tube placement. Also, in the abdominal area where I had a morphine pump placed then had to have it removed nine months later so yet another surgery. The pain has reached a crescendo of unmanageability. I have periods when I am nearly insane and the agony is such I don't think I'll come back from it. Sleeping is nearly impossible, rarely leave the house except to go to the pharmacy or the doctor, my life is in shambles as a result. Future? Still waiting for the medical community for help
frankjs sheila48912
Posted
Sheila,
I feel for you. In a selfish way I feel better when I hear others stories. I spent a lot of sleepless night also but I have developed a routine that helps. I am thankfull that I can go to my business every day and take my mind off the constant pain.
I am, unfortunately, loosing all faith in the medical industry. My wife is a doctor and she keeps telling me nothing can be done and I can see that she gets irritated when I pursue remedies; ovbiously she doesn't have the pain. I also find that pain is something you can't measure, your level 9 might be my level 6 and when you try to describe it to people you can tell they have no idea. I ask people if they ever had cramp in their leg; try that pain in you torso on a constant basis.
The medical community: My wife recently got a journal with an article on shingles and PHN, they cited over 30 different doctors and reviews. It was quite extensive, gave all the medication protocals and after 4 pages of wordage it mentioned that the patient my suffer from PHN which could last as long as 8 months. They don't have a clue and as some mentioned,THEY SHOULD BE REQUIRED TO READ THESE BLOGS.
My rant for Thursday!
babs99203 frankjs
Posted
I always had a hard time with those pain ratings also. "Worst Pain?" I'd wonder about having actual torture or a limb being cut-off without anesthesia, so seriously, my worst shingles pain would have to be an 8 compared to that. But was it agony and terrifying? Yes. I personally would tell the doctor that above 5, I would sometimes cry, below 5, I would "manage" the pain, as I'd have a mantra "it's been worse before, and you can get through this". I feel guilty now, as I am doing very well compared to you.
So does no doctor, no researcher have any curiosity? Any desire to help? Any obligation to understand this and relieve people's pain? "First, do no harm" doesn't seem to have been followed in many cases here. Frank, there are times, in a perverse way, I find this condition fascinating and I can detach myself and ask why is this happening, how does it affect others, how do I compare, and what on earth is happening within my body? Maybe doctors are as frustrated as we that it seems they can't help or fix it. That's why a lot of docs don't want to take on patients with bad backs, they know that they often can't really help people. Other doctors do what they do i.e. if you go to a surgeon (Sheila) they'll do surgery, if you go to an internist, they'll give you pain killers, if you go to a neurologist they'll do tests and give you nerve drugs such as Gab or a Tens unit. As I mentioned, after 30 years in healthcare I've been pretty good at avoiding unnecessary procedures and drugs. What a sad commentary on healthcare.
babs99203 sheila48912
Posted
Sheila, I wish I had words to help, but it seems you've heard many of them. But I'm thinking of you and hope that something changes.
sheila48912 babs99203
Posted
Thank you for your kind words. I am in this forum to help others cope. I have spent untold hours researching this miserable condition and asking questions of as many medical professionals as I encounter and as I stated before they are baffled. All DRS can do is treat the symptoms because the damage to the nerves is permanent, hence no cure. Those new to the condition can utilize this forum as a means to understand what happened to them which will save them hours of research and money spent on trying products/drugs that don't work. Unfortunately for all of us there doesn't seem to be any hope but we must never
give up!