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
Babs,
I got what I consider a very mild case of Shingles(left torso), very little rash. The pain and swelling got worse over a period of about a week. Doctor said the pain would cease as the shingles rash cleared up, that did not happen. They kept saying give it some time, yeah right.
I did neurotin, Gabapentin, Lyrica, creams, herbal, and lidocain shots with no releaf. Additionally, for some reason that no one can explain over a period of 2 to 3 weeks numbness progressed through my left side down my leg and foot and into my right leg and foot. In addition to the pain I have no feeling in my left leg.
I have a small business and work every day, which I think helps me maintain any sanity, I was happy to give up the drugs since they did not relieve the pain and you end up walking around in a fog.
I keep trying and will not give up hope. I have an appointment next week with a new doctor who claims he has a solution.
I'll keep you all posted.
babs99203 frankjs
Posted
Frank, didn't that follow the sciatic nerve? Odd, that it was on the other foot too, but I'm starting to think that it's often all odd with this disease. I put up with the brain fog as it did lessen (eventually to some degree) and it helped the pain. I assume you didn't get the anti-virals either. How long has it been since your onset?
frankjs babs99203
Posted
I have been healthy all my life and never had much experience with the medical industry. Like everything else it about the money, I paid a pain doctor over $7000 for 3 months of treatment, thought he was reputable since he was connected to a Hospital, he did not take insurance and I later discovered because he opted out of Medicare that meant I could not file a claim myself.
babs99203 frankjs
Posted
ruth57682 babs99203
Posted
babs99203 ruth57682
Posted
I feel like a researcher, sorry, but did you take Gab or get any anti-virals? Let's hope you continue to improve, my sensitivity is fairly minor, but had an episode last night. Hubby and I decided that it was best NOT to disrobe in public so he was glad
it was at home during dinner. He joined in and I said he looked like Putin!
sheila48912 ruth57682
Posted
Yes, Ruth this condition is truly life-changing and just as you begin to manage it something else starts to cause pain or the medication isn't working as well and you have to increase the dosage. I wear my pajamas all day but can manage tight clothing for short periods except for the bra, that article of clothing causes the most pain. I mainly where camisoles with bra shelves in them. I feel bad for my family and friends because it has affected them as well and I am not the vibrant and active woman I was. We used to travel the world a great deal, attend festivals, concerts, theatre, art shows etc. now my days are spent languishing in bed watching television and reading. I have to have a housekeeper and have stopped my favorite gourmet cooking style opting for simple fair or I drink a bottle of Ensure. I know how sad you all feel as this is the most horrific thing that can happen to a person yet we still hope😢 And pray for a cure. I have been to over 27 doctors and neurologists, have tried everything including acupuncture. I use the pain patches and gels, ice packs are helpful and I take copious amounts of opiates and gabapentin which I hate having to do, absolutely loathe the drugs! If I hear of any new protocols other than the one that my doctor is pushing a "pain stimulator" I will post.
ruth57682 babs99203
Posted
frankjs ruth57682
Posted
I have had this for 15 months and the level of pain varies, but I can honestly say I do not think it is any better today than when I started. As far as weight gain I can't say I saw any change but I was only on it for 2 maybe 3 months.
babs99203 ruth57682
Posted
Yes, I had weight gain. However, I have to be clear that it was Christmas cookie time and I had zero activity. I had been very active--I do ballroom dancing had been preparing for an event so I was dancing a lot, then hiking in the SW when I got the shingles on our 40th anniversary trip. I'm also 61, so how much is the Gab, how much other factors, it's hard to say. I've been told it can be a factor. Since January I've been eating less and can finally take long walks. I started about about 2 blocks and was exhausted, now I can do brisk one mile walks.
Caseysue babs99203
Posted
I had PHN after shingles in 2008. I was put on Lyrica. Stayed on it for a year. I had good results at first but it returned. Dr put me on Gabapentin 600mg 3 times a day. That helped but after 6 months pain was back. So I weaned off of it. I went to lotions that gave me enough relief to be able to do most of my daily activities. I still can't wear anything tight around my waist. My shingles were from my navel around to my spine. I use several different lotions. You have to find the best one for you. The warm weather makes it hurt. I use Aspercreme with 4% Lidocaine. I am 69 yr.female. I retired last May. So I can now wear casual clothing this helps.
babs99203 Caseysue
Posted
Casey,so you've been dealing with this since 2008? Oh my, what a shame. You mentioned warm weather--we're planning our yearly vacation to FL in May and last night I wondered if the sun would cause problems, I hope not. I do get "sun poisoning" which occurs sometimes--it's actually the body's reaction to sunlight where you get an itchy burning rash...hmm why does that sound familiar?? I only get it down south, never in WI.
Caseysue babs99203
Posted
the pain and itching is do to my being out when it's warm. I never had a problem with it before. I live in New Orleans so my body has been exposed to heat and humidity all my 69 yrs. Even when I shower the heat of the warm water makes the area itch and more sensitive. I normally take a bath. making sure I don't stay in the bath water long and that sorta works. To be honest, it's a daily fight. But the Aspercreme with 4% Lidocaine helps me the best.
r.oka babs99203
Posted
At this early point in your bout with PHN you have progressed well in comparison to my first 6 months. My first year in 2012 was 9/10 pain wise. I slept on the living room couch. Couldn't be in the same bed as my wife as any bedcover movement would touch the scarred area of my torso. Unbearable. I have made progress since those horrific first 12 months. Medications began with 60mg of morphine sulfate, 20mg of Percocet and 2400mg of gabapentin daily. Since then I have weaned to 20mg of Percocet and 600mg of gabapentin daily. I have made progress but am reminded that I still have nerve issues when the next dose is due. Meanwhile, I am veritable shut in, little of my life exists as it did before PHN. I have lost my wife, social connections are few and since being disabled, working in my chosen field as an electrician is not an option. As you can tell by this short bio, this affliction though considered non-fatal can be easily considered a life stopper. My background and my faith have kept me believing there is meaning to all of this and I will prevail. Potentially a better/stronger human being for my trouble. Let me conclude with this. Based on your progress the chances of getting your life back to the norm is very likely within the next few months. My hope for you is that this 'dark cloud' that comes unexpectedly into ones life may provide an opportunity for transformation. That opportunity to make adjustments which may make all the difference. I hope that answered your question and helped you feel better about your own battle. All of the best.
babs99203 r.oka
Posted
R, how very difficult. My dark times, where my life was put on hold were only two months long. Now in my 5th month, I feel so much better emotionally and physically, I hope that you will continue to make progress. I tell people it's so maddeningly gradual, that you can only tell there's improvement if you look back weeks, not days. It's so insidious also, that part of the disease affects our brains and emotions, then they give us meds which make parts of that worse! Luckily my job offered EAP--Employee Assistance Programs so I could get some counseling over the phone when I was at my worse. That helped a lot.
All the best to you too.