Pain so bad I can barely stay on my feet.

Hi Merry. I was reading your previous post here. Bless your heart, i can relate to the frustration you must have surely felt, with it taking so many doctors and too much time to even get your diagnosis right.

Three years after my breast cancer and mastectomy in 2006, i first began to have shingles. It appeared on my right lower hip and i was diagnosed pretty quick the first time, even though it was a simple after hours Med-Stop that I went to. I was put on a regimen of antiviral, three times a day and a fairly strong pain medication but i can't recall the name of it. I was even told by that same Med-Stop doctor who examined me that shingles was quite common for women following breast cancer. This was new news to me that it was common following breast cancer and my complete knowledge of shingles, at that time, was that it was an illness that people in their 60's and 70's got. I recall that i suffered something fierce for over 2 weeks and was never so happy as when that ordeal was over. When it was all over, i recall being so relieved that it was at least behind me now and i would NEVER have to endure that again because that same doctor ALSO told me that people only get the shingles one time. THAT'S what he said. He was. . . WRONG.

The shingles DID come back on my lower hip about 6 months later. Again, it was after hours when it hit me like a truck. First the upper leg pain that radiated down from my back, having me think that i had maybe pulled a back muscle. Then the rash appeared. Same place, same pain, same Med-Stop, same meds, different doctor this time but SAME story. You are correct when you said that the medical community is "abysmally ignorant" when it comes to shingles. Like the first doctor, this doctor ALSO told me that shingles only strikes ONE time and i was thinking... "Say what?" and shared with him the bitter reality that i had already gone through this 6 months earlier. I recall how shocked he was and especially since i was ONLY 43 years old at that time. He spoke of it being some rare oddity that would most likely never happen again. And i actually believed what he was saying and was again relieved that when this was over, i would never have to endure this again. Wrong again. Fast forward 3 years....the shingles kept coming back same place every time and after maybe my 20th outbreak, i was put on a daily low-dose antiviral that was raised in dosage periodically each time the shingles woukd TRY to appear, till i was finally taking 3000 mg a day, every day. I did this for 3 years. The antiviral meds kept me feeling ragged, tired and sickly every day and i didn't have the energy to do very much but i recall thinking it was way better than having shingles. Fast forward again another year, i started having a mild rash on my face and on my nose. The rash was very mild, didn't itch, did not hurt but the very top of my nose was extremely tender and fire red. Doctors prescribed topical and steroids but it had zero effect. Other symptoms followed. The mild rash remained the whole time but i began to have headaches, ear aches, my right eye would swell up, my teeth would hurt and my head would jerk. All of these things would come and go but became increasingly painful every time it returned. I saw doctor after doctor. Dermatologist, Internal Medicine, Infectious Disease and Neurologist and i was diagnosed with everything from possible Lupus to possible PTSD, caused from having breast cancer years earlier. Like you, i was made to feel like a narcotic seeking person or just plain pretending. Needless to say, it was frustrating and i was made to feel small and sometimes even crazy. The very last doctor i saw suggested i see a psychologist for my "problem". Three days after that doctor telling me that, i was taken to the hospital by ambulance, screaming and crying in pain. It felt like i was being hit with a cattle prod in my forehead, my ear, my cheek, my nose, my eye and the top of my head. Only this time, it didn't stop. Like lightening in a bottle, it jumped around and all i could do was scream. The doctors had to put me in deep sedation while they tried to figure out the puzzle. All they had to judge their diagnosis was the same mild rash on my face and the information that my husband was giving them. I was there for 9 days, with doctors running all kinds of tests and each time they woke me up, i would wake up screaming and they would knock me out again. Finally, it was decided that my body must have grown "toxic" from the years of high dose antiviral and they began to lower my IV antivirals quickly. On the 3rd day, i went from bad to worse. The mild rash that was on the right side of my face was suddenly everywhere on the right side, up to my right eye. My right eye was nearly closed due to the swelling and rash. It was like an explosion all over the right side of my face, nose, eye and forehead. When they would wake me, the pain was worse and my vision was less each day. In the end, what had happened was the shingles had moved from my lower hip to right eye but the daily antiviral was keeping the shingles masked and i had shingles for 14 full months. So, i spent all that time in near constant pain and nerves being damaged this entire time.

I am thankful that those days are behind me now and feel very blessed that this new shingles vaccine is working for me and is even making the pain from the PHN less and less each passing day. I pray that everyone gets this same relief.

While i do understand that my case was difficult for doctors to diagnose due to the daily antiviral, it still angers me to see how far behind the medical doctors are with the treatment of this disease. It's made worse by the CDC still continuing to tell the public in theur periodic reports that it is "unlikely" for a person to get shingles more than one time. And they continue to report that this is a disease that primarily hits the elderly. Their continued recommendation for people to be minimum age 50 or 65 before a person can even get the vaccine is making matters worse. What the CDC is saying to the public is simply untrue. There are many people in their 30's and 40's getting shingles today. I even met a 23 year old who had shingles. Despite me having shingles many times, NO ONE would give me the old vaccine because i was too young and i even had a prescription. We finally found a privately owned pharmacy that agreed to give it to me. It's shocking how little that doctors STILL know about shingles. People are suffering and it's past time for the community to catch up and stop treating people like they are bat crazy when THEIR tests don't fit the norm.

Hoping this finds you doing well. Thanks for being there for so many on this forum. Take care friend and God Bless us all

r.f. 

You have really been through it ....... I am a 70 year old male, and I had the nasty form of testicular cancer at age 30. I think the heavy radiotherapy saved my life but I was treated from my genitals to my nipples with an 8 inch stripe of radiotherapy. In 2004 I had some camera work which indicated increased muscularity of the bladder neck, and telengectasia (spelling ?)

so now and again micro traces of protein appear in my urine, which gets new Doctops in a flap.

In 2006 my blood pressure started to rise, and my kidney function declined. In July 2016, I had a minor stroke, and in August 2017 a kidney artery stent. My blood pressure dropped pretty much instantly, and I was told to back off the  BP Meds. I was also told my kidney function would probably not improve. A year later my kidney function is much improved, but the BP was on the way up again. However, they want me to go back on Losartan Potassium to get my BP down, but I think it increases my Creatanine by +30, (i.e kidney function decrease) so I asked for a benchmark blood test !  Hey Ho, my life storry, or some of it, for all the world to see. Hang in there r.f.   Colin, England

Dear RF

So that is how it happened? I know it has been a horrific experience, and I truly believe we need to convene with the empathetic medical community to portray and study the reality of Shingles today. I too had (hopefully, past tense) breast cancer, plus autoimmune disease, plus stress...it's always in a female head.

Interestingly, the old time doctors, for whom I had the utmost respect for, knew how to diagnose and treat shingles with Opioids and sedation and Anticonvulsants.

How are you doing, now? I have not had Shingrex, as yet, but remain on THE WAITING LIST!!!

ALL MY BEST

MERRY JULIANA

Hi Merry. Yes, it was one misdiagnosis after another after another. You are correct that being a woman, the problem "is always in a female's head". Don't you just hate that? Lol. I'm pretty small frame and not a violent person but i wanted to punch that last doctor who told me i needed to see a psychologist 3 days prior to me being admitted to the hospital. Emotionally, it knocked the wind out of me because i was sick and tired of being sick and tired and i just went straight to bed the minute i arrived home. I recall saying to my husband "I give up....whatever this is will most likely kill me before these guys (doctors) figure it out". But i was also angry because this doctor was arrogant about it too, which made it even worse. I did get a small amount of satisfaction several days later while i was in the hospital. As fate would have it, this same doctor was actually "on call" one night while i was admitted. I was in blinding pain at that time and unable to speak but he got the message quickly when i managed to reach a plastic hospital water pitcher and my cup and threw it at him. He got the message and left.

Sorry to hear you had breast cancer too. That's a rough deal. I recall the complete shock when the "C" word was said to me. I truly could not view it.

I've had both of the Shingrix shots and it was a really long haul for past few months but mainly because i had to take both the shots while i had an active case of shingles. I didn't have a choice and it was rough but i don't regret it. If i had been shingle free when i took the shots, it probably would have gone much smoother.

Right now, docs are trying to wean me off the antiviral meds. After 8 years of taking antiviral meds, with the past 5 full years taking 3000 mg a day everyday, it was actually easier to come off the opioids. Right now my body is throwing alot of withdrawal symptoms at me but it appears to be lessening each day, like my body is checking things off a list, one by one.

I agree we need some serious changes in the medical community and how it treats today's shingles. It is no longer like in our grand parents day and it is not a, one and done, illness anymore. This thing is putting people on disability, with a lifetime sentence of pain and the CDC is still talking like it's 1985. They KNOW shingles is reaching epidemic proportions because kids don't get chicken pox anymore but why no one is saying so, is beyond my understanding. Basically, they fixed one problem and are now ignoring the other problem that was created when they created the chicken pox vaccine that pre-school kids have today.

Because the CDC is not up to date in their public releases, myself and many others suffering, were not able to get the old vaccine in time because we did not meet the CDC age recommendation of age 65. And even still today, this new vaccine Shingrix, which may very well turn out to be the saving grace for every shingles sufferer, continues to NOT be available to people under age 50, unless that person can find some privately owned pharmacy that will give it to someone under the age 50 years old. It's insane, irresponsible and cruel. I am better now FINALLY because of this new Shingrix vaccine but i am only one person with so many more STILL suffering and they can't even get this much needed vaccine. I have already missed out on much of my grandchildren growing up, my Mother being sick, my daughter's graduation and most every wedding, funeral and family reunion and so much more these past 8 years, because i was down with shingles. I blame the CDC. It is their job to inform the public. It is their job to lead the charge in matters such as this but they have dealt with shingles like a walk in the park and they still are. It angers me every time i hear that someone was prescribed glorified-tylenol or some other light weight pain med for shingles because if the CDC was doing their job, these doctors would know better! This doctor would know this person is about to face unbelievable pain and they need a pain med to keep them from suffering. Because the doctors didn't know what to look for, i went 14 full months with shingles masked and untreated which caused damage to my 5th cranial nerve and myoclonic seizures. Damage to the 5th cranial nerve has the possibility of leading to Trigeminal Neuralgia. You probably already know these things since you are a nurse but Myoclonic seizures is where your head jerks back and forth violently like you are going to snap your own neck and feels like you are literally bouncing your brain against the inside of your skull. At the end, your skull and forehead hurts inside like its all been bruised. It's not my most feminine side either. These conditions may or may not be helped by this new vaccine. Time will tell and they are improving daily. I am thankful for any and all relief and pray that others find the same relief and more. But mixed with my joy is also anger toward the CDC for not doing enough. The CDC needs to get off their butts and inform the public about what shingles is REALLY doing to people, both young and old. The CDC has failed to put the urgency in people, like shingles is just some inconvenient rash that might make you miss a golf game or two. I got lucky THIS TIME because i did meet the age recommendation for Shingrix but how many are STILL suffering? Without the urgency, so many people are hurting and will continue to hurt, while they are forced to wait for the vaccine to be accepted by their coverage or they are stuck on a waiting list and many people just simply don't know the real truth of what is waiting for them when shingles strikes them too. Again, it's absolutely irresponsible and cruel. The CDC needs to be as passionate as we are. But they dont truly know what its like for so many. They don't know that when shingles is anywhere above the shoulders...that involves your teeth and that person can't eat for days. They don't know how it feels to be knocked down on their backs like you have been every two weeks for over 20 years or what it must take for you to get on here and try to help people anyway because you know someone is hurting, you know someone is scared, so you do it for them and God bless you for it, Merry because i'm sure there are days that you would rather just stay in bed but you don't. You're on here helping people. I wouldn't wish shingles on my worst enemy but what is it going to take to get those people at the CDC moving? Sorry this is so long. Hope this finds you doing well, friend and thanks for all you do

Dear RF,

The CDC is a political organization that has not been vested in the publics' welfare and health for ages. If you study their positions on Lyme Disease and Shingles, it is sadly outdated. They refuse to even consider the controversial Chronic Lyme Disease topic which the Infectious Disease Society has effectively shut down insurance payments for the chronic Lyme sufferers. When my neurologist told me according to the American Board of Neurology, I hadn't had a Stroke, because the MRI could not detect the stroke, even though I had been paralyzed and aphasic, it told me the neurologists were too lazy to perform detailed physical exams to classify a stroke. A later stronger

MRI did indeed show that lesion, proving I had damage to my brain. Neurologists often do not do detailed neuroexams, anymore.

What matters, is that you are improving, and that the Shingrex offers hope to so many sufferers.

Best Wishes

Merry Juliana

Sounds like you have been through the fire yourself, Colin. With so many different health issues and all of them quite serious, i can only imagine how stressful and downright scary it is to have to maneuver through such a complicated and limiting process. I can't find the words to say how truly sorry you go through that, friend. It is true that i have been through alot these last 8 years but never have i had to deal with what you are having to. Being limited to short doctor visits, limited to only two medical issues at a single visit, having needed procedures and medications denied. Colin, i am almost ashamed to complain about ANY medical issue i have, with the nerve wrecking and insensitive nightmare process you have to deal with, just to be treated by a doctor. I have been blessed and freely admit that not all doctors are like mine and i've met some bad ones over the years but the doctor i have now is a great one. If i need him, we simply call his private cell phone. Naturally, he doesn't give out his private number to all his patients or he would never get any sleep. We only have it because of how frequent my shingles would strike and i would have to be sedated fast. After several years of hospital admissions, only to simply be sedated on arrival, it became possible for me to be sedated in my home and my doctor is a phone call away if their are any problems or concerns. I truly don't know what to say about what you are enduring. It sounds so cold and unfair. My heart goes out to you, Colin. Here in the states, it is so very different. Like everywhere, we have some quack doctors and i dont trust most of them to treat me but we have no cause to complain when comparing our system with yours. Again, i am so sorry, friend

I agree and i am so so truly thankful but my heart goes out to everyone else that is still suffering with shingles and can't get this new vaccine. After what i've endured, i can not forget those still hurting.

If i may ask you, did you say you are on an actual waiting list to get the Shingrix vaccine?

Thank you for your kind words, r.f.  I like to think I am fairly skilled at writing letters etc, having spent 16 years, as my 2nd Career,  as a `Principal' in the UK Government Service. I shall try to get Shingrix, even if I have to fund it myself :-)  Warm regards to you r.f. - (and to Merry)  Colin, England

I am hopeful that you can get the Shingrix vaccine and soon. You take care friend

Is the pain you are having the at the same level as the first couple of weeks or has it dissipated some what?

Hi Arron,

Hope you are better.  No, the pain I have now in no way  comes close to the first couple of weeks. It was horrible.  Curled up in a ball on the bed and could not do anything.  My pain now is like pins in my skin and bugs crawling under my skin. It is bearable but uncomfortable. Now it itches also. (did not itch while the pain was so bad)  I think now that it may have itched but the pain would override the itch!

Hi Aaron. By sunburn pain, i am assuming you mean tender to the touch, like a sunburn in those areas. If so, then the answer is yes. When my shingles first began, they would always appear on my lower right hip but before any outbreak, i would have pain that radiated down the back of my leg making me think that i had possibly pulled a back muscle, only to have an outbreak each time, later that same day. During and often after the blisters appeared, the back of my leg down to the knee, would have no visible rash but the skin was always tender to the slightest touch like an irritating sunburn. When the shingles moved to my eye, the very tip of my nose was always extremely tender to ANY slightest touch but it would have no rash, only fire red in appearance.

yes thats what I mean. I have that sensitive feeling on different areas of the side of the body thats affected. Like random areas I was worried maybe the rash was going to those areas as well. How do you know if you have shingles of the eye?

Yes Aaron, that's what is happening and happens with most people in some location. Typically, you won't develop a rash in those other sensitive areas though but there is a good chance that each time you have shingles in the future, these sensitive areas will act up first, as an early warning sign that shingles is trying to develop. When you get these early warning signs, if you are able to scale back your activity, calm your surroundings and get to a doctor for antivirals, you can have an easier outbreak and less pain. Not always but it can help.

As for your question, "How do you know if you have shingles in your eye?" My answer is this. You will know beyond any doubt if you ever get shingles in your eye. All shingles is painful in any area, except for the lucky few people who have a mild shingles rash that only last couple days and no big issue. But again, they are the lucky ones and these cases are rare. But for most, shingles is painful most everywhere it appears on the body. However, shingles in your eye is a different kind and level of pain. It is considered the worst and most painful kind of shingles to have and there will be no doubt that you have it in your eye. It typically requires hospital admission because of the shingles being so close to your brain, the pain is unbearable and your eyesight is at risk. To relieve the pain, all the doctors can do is knock you out completely while you receive IV antivirals for 3 days. But when shingles is in your eye, it will not initially show up in your eye. It will first manifest itself on your nose in the form of a rash. The tip of your nose will be very red and extremely tender to the touch. After this begins, you will have the rash continue to travel upward till it reaches your eye. It sends electric like shocks that bounce around, like lightening in a bottle. These shocks will bounce around repeatedly, without end while you are conscious, going back and forth in your ear, eye, nose, head, cheek and teeth, jumping around, lasting only seconds at each location then jumping to the next. In my case, it was difficult to diagnose because i had been already taking 3000 mg antiviral meds a day everyday for nearly two years at the time, so the symptoms were masked and the rash was held back from developing completely. Under normal circumstances, shingles in the eye is one of the easiest to diagnose. I pray you NEVER get it, friend.

The shingles area on the affected right side of my face is definitely aggravated by Sunlight. Regards, Colin, England.