I am a 51 year old female. In the fall of 2000 I noticed a rash on my right breast in the shape of an upside down "T". By the spring of 2001, one half of my right breast was flaming red with no blisters. I was placed on antibiotics by a Dermatologist with no help. There was no itching, burning or pain until the spring of 2001. I began to have stabbing pain in my right breast, as well as under my right breast across my ribs. I also began to have stabbing pain under my right arm as well as swelling. The pain then would radiate down my right arm, resulting in tingling fingers, then numbness in my fingers. The pain, swelling and numbness have continued since (I am unable to wear a bra...period), although the redness dissipated after approximately 5 years. Within the last year I have become extremely sensitive to touch (clothing, breezes) in the same area of my breast and underarm. The intense pain drops me to my knees and occurs approximately 4 times per week. I am in varying degrees of pain every single day.
At first my primary physician thought I had inflammatory breast cancer (negative), another doctor thought I was having gall bladder attacks (negative), then we thought it might have something to do with my breast reduction, but it had been too many years since the operation. She now believes I had "internal shingles" and then developed Postherpetic Neuralgia. I have been bouncing between Percocet and Vicodin for years. My doctor wants me to wean off of the Vicodin, but there is no backup plan (I am taking Gabapentin, but it doesn't cut through the pain). We're stuck. And I’m scared. She recommended that I reach out to other resources.
Could I have had shingles with a rash, no lesions, that lasted 5 years and pain for 8 years?
Is there a way to determine if that is the case? I'm absolutely at the end of my rope. Any help you can give me is greatly appreciated!
I don't know of a definitive test offhand, as you will likely test positive for antibodies against varicella, the virus that causes shingles (and chicken pox), but that wouldn't tell us anything. Your history does sound consistent with shingles; not everyone gets the classic vesicles prior to the pain. You might need to remain on a small dose of narcotic for a long time; you will need to avoid raising the dose, though, as that can lead to disaster.
The gabapentin should be titrated up to around 3000 mg (3 grams). Raise it slowly but constantly and you will get to a higher dose without severe sedation eventually.
The classic treatment is tegretol, so make sure you try that at a therapeutic level. Finally, capsaicin often is helpful, but again it takes time, as it works by depleting the substance P of pain neurons after prolonged use.
I can't thank you enough for taking time to answer my (convoluted) question! Plus I was able to learn a new word in the process...titrated!
I have made a list of your recommendations and made an appointment with my primary to discuss same. You are absolutely correct about the narcotic angle. I am an addict and have been up front with my doctor about it. When my tolerance starts to go up with one med, we change to another and start with a low dosage. Then the cycle starts again. But, we both know that narcotics do not help and do not fix anything. Thus my quest for a diagnosis. And I will continue my quest...I owe it to myself. Although, I think shingles is the right track for now.
Thank you again for your response, Dr. Junig! One of the most important things I've found along this journey is that the greatest gift of all is to be believed. Thank you for believing me.
This is the first time I've been on this website and was just looking about and saw your questions and wondered if you have heard of Lidocain patches - usually called Lidoderm.
If i'm not completely mistaken I believe they are usually used specifically for postherpetic neuralgia. I am in no way in the medical field but maybe you could just look it up on the net and see if it sounds like it might be of help to you in some way.
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