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Neuralgia, but what kind?
My primary doctor, neurologist, pain management doctor, and an ER doctor all agree I have a neuralgia. I am getting the feeling that leaving it at just a "neuralgia" is all I am given. The pain is inspiring me to research. I am trying to find out maybe what kind of neuralgia it might be to see the prognosis or suggestions for relief not used below. I am listing this information in case my symptoms might give a clue for the best type of testing to pursue since it seems there are so many types/causes of neuralgia.
I am a 51 year old male and had mild pain for six years that rotated between three areas: my left side (4"-5" below arm pit), my upper left chest (2"-4" above left nipple), and my upper left arm (more by bony area rather than bicep). Two of these areas (my side and on my upper left chest) usually felt like the eraser end of a pencil was being pushed in constantly (size of a nickel). When having arm pain, it felt like it radiated a little larger area.
When having a pain in one area, I would not have pain in the other areas. The pain would stay in an area for 2 weeks to 2 months before moving to one of the other areas. Throughout the six years that I had this, my mid chest to left chest has been sensitive to touch. I also had occasional mid chest pain when pain areas were changing locations (had multiple normal cardio tests though). Tylenol, nsaids, opiates, paxil didn't help with any of the pain areas. I noticed when I had a couple beers, the pain would stop temporarily (I have been abstaining from all alcohol and caffeine for quite a while).
About a year ago, when the pain rotated to my arm, it was a constant intense sharp pain (felt like a broken arm) which caused my shoulder to freeze from lack of movement. Pain then cycled normally to left side, but started getting occasional stabbing pain in normal side spot with shooting pain down toward leg. My doctor put me on gabapentin and pain cycles stopped (no pain in upper left chest and arm), but still got occasional stabbing pain in side with shooting down toward hip/leg and still have chest sensitivity.
Over several months, the occasional stabbing side pain has increased in pain level and also frequency. It now gets to a 10 out of 10 stabbing pain and then pain shoots toward groin and continues down inside of leg. The entire attack lasts less than 2 seconds. I tore several finger tips off in an accident 10 years ago, but this hurts worse. I have had as many as 20 attacks in a 30 minute period. Even when getting one attack in public, people think I am having a heart attack because it subconsciously causes me to yell and reach for my side. The initial stabbing pain is in exact nickel size spot that I have had for 6 years. I am also starting to get occasional mild shooting pain on top of left shoulder and occasional shooting pain up neck to jaw.
I have had a sonogram to check my spleen. I have had xrays and CAT for things like kidney stones. I keep getting cardio checked. Typical lab tests keep showing normal except borderline cholesterol and fasting glucose alternating from 90 to 112. I do have mild scoliosis and kyphosis with some minor problems with T7-T9 and a bone spur on a cervical vertebrae which an MRI showed are not pressing toward spinal cord/nerves. I don't have any other health issues except acid reflux (occasional sore throat), mild hypertension, and occasional lumbar problems. I have a good family health history and I used to be very active when this started. Recently, trigger point steroid injections in my side and chest have seemed to make a difference in pain level, but still get mild version. The more severe version returns after 3 weeks (have to wait at least 4 weeks between injections).
Because of more sensitivity to chest during pain attacks and problems are one sided, it would seem like postherpetic neuralgia, but shooting pain is going across all the dermatomes and the initial rotating pain was in 3 different dermatomes. I also did not have shingles that I know of, and if it were zoster sine herpete, it had to be very mild. I am at 2400mg of gaba, 4mg tanazidine, and use a topical prescribed from pain management. I was also using epitol, but experienced extreme weakness. I may be able to try topomax instead. I am starting to use lidocaine patches instead of the topical to see if it is better.
I am a 51 year old male and had mild pain for six years that rotated between three areas: my left side (4"-5" below arm pit), my upper left chest (2"-4" above left nipple), and my upper left arm (more by bony area rather than bicep). Two of these areas (my side and on my upper left chest) usually felt like the eraser end of a pencil was being pushed in constantly (size of a nickel). When having arm pain, it felt like it radiated a little larger area.
When having a pain in one area, I would not have pain in the other areas. The pain would stay in an area for 2 weeks to 2 months before moving to one of the other areas. Throughout the six years that I had this, my mid chest to left chest has been sensitive to touch. I also had occasional mid chest pain when pain areas were changing locations (had multiple normal cardio tests though). Tylenol, nsaids, opiates, paxil didn't help with any of the pain areas. I noticed when I had a couple beers, the pain would stop temporarily (I have been abstaining from all alcohol and caffeine for quite a while).
About a year ago, when the pain rotated to my arm, it was a constant intense sharp pain (felt like a broken arm) which caused my shoulder to freeze from lack of movement. Pain then cycled normally to left side, but started getting occasional stabbing pain in normal side spot with shooting pain down toward leg. My doctor put me on gabapentin and pain cycles stopped (no pain in upper left chest and arm), but still got occasional stabbing pain in side with shooting down toward hip/leg and still have chest sensitivity.
Over several months, the occasional stabbing side pain has increased in pain level and also frequency. It now gets to a 10 out of 10 stabbing pain and then pain shoots toward groin and continues down inside of leg. The entire attack lasts less than 2 seconds. I tore several finger tips off in an accident 10 years ago, but this hurts worse. I have had as many as 20 attacks in a 30 minute period. Even when getting one attack in public, people think I am having a heart attack because it subconsciously causes me to yell and reach for my side. The initial stabbing pain is in exact nickel size spot that I have had for 6 years. I am also starting to get occasional mild shooting pain on top of left shoulder and occasional shooting pain up neck to jaw.
I have had a sonogram to check my spleen. I have had xrays and CAT for things like kidney stones. I keep getting cardio checked. Typical lab tests keep showing normal except borderline cholesterol and fasting glucose alternating from 90 to 112. I do have mild scoliosis and kyphosis with some minor problems with T7-T9 and a bone spur on a cervical vertebrae which an MRI showed are not pressing toward spinal cord/nerves. I don't have any other health issues except acid reflux (occasional sore throat), mild hypertension, and occasional lumbar problems. I have a good family health history and I used to be very active when this started. Recently, trigger point steroid injections in my side and chest have seemed to make a difference in pain level, but still get mild version. The more severe version returns after 3 weeks (have to wait at least 4 weeks between injections).
Because of more sensitivity to chest during pain attacks and problems are one sided, it would seem like postherpetic neuralgia, but shooting pain is going across all the dermatomes and the initial rotating pain was in 3 different dermatomes. I also did not have shingles that I know of, and if it were zoster sine herpete, it had to be very mild. I am at 2400mg of gaba, 4mg tanazidine, and use a topical prescribed from pain management. I was also using epitol, but experienced extreme weakness. I may be able to try topomax instead. I am starting to use lidocaine patches instead of the topical to see if it is better.
My more mild upper left quadrant rotating pain that I had for the first six years seemed to almost stop entirely when on 300mg gaba, but shortly after this reprieve, the very intense pain attacks began. It took a few weeks before gaba seemed to stop the long lasting type of pain. Later for the attack pain, increasing dosages seemed to also take some time before making a diufference.
I can only describe the attacks as if a steak knife was stabbed in my upper side, then the knife is pulled down towards my groin. Thankfully, each attack only lasts a second. Most days, I would only get 1-3 attacks, but I had a day or two in March where I had over 100 in one day. After days of multiple attacks, I am wiped out for several days and don't get out of bed and often have one or more swollen, pulled stomach muscles from reacting to the pain. I have had multiple pneumonias this last year and my doctor suspicioned the pain problem might have conditioned me to not breath deeply and use my lower lobes of my lungs, so I could be more susceptible.
Once I started getting these attacks, my doctor slowly (over 9 months) moved me up to 3600 mg gaba per day, which I think is the max allowed by FDA. Once there, my attacks stopped and I have even tapered back down the mg of gaba, but have found I can't lower it much.
Using gabapentin: I can't say it was the gaba for sure, but after starting it, my feet are slightly swollen to where I use diabetic socks to keep from cutting off circulation. My vision changes anytime the dosage is changed. Initially when on 300mg/d, I learned if I skipped gaba a couple days, I would go through the adjustment side effects again the next time I took it. I would feel slightly dizzy and almost giddy like I had a few beers. Even though it says to stay away from grapefruit and maybe other citrus while on gaba, I also discovered that drinking Squirt and some other popular clear sodas will greatly interact with gaba and cause a feeling of being slightly drunk. I have gained about 15 pounds either from inactivity or gaba or both.
Massage therapy: I was slightly paranoid of that idea because touching the trigger point caused attacks. I am sure if I would have toughed it out, it might have helped. I have chest sensitivity (less with higher doses of gaba) which also makes anyone touching me on the front chest a problem. I think it would have helped before I started getting attacks when only had constant pain. Steroid injections are no fun, but seemed to help. I would have to say after doctors/specialists tried muscle relaxers, SSRI’s, epitol, pain meds, trigger point injections, topical combinations, lidocaine patches, etc. in addition to gaba, gaba is the only thing that really works for me. If I have a high enough dosage, I can get by without anything else.
Advice: Journal daily and look back occasionally and summarize. Identify good days and bad days and why they might have happened. Keep organized with your meds. I was up to 22 pills per day and could easily get off schedule. Keep active so you don't get a secondary problem because of inactivity. Swimming is good for spine. Keep your shoulder moving when it hurts so it doesn't freeze. Stay away from neuropathy aggravaters like beer. Research, but don't spend time on unusual, but rather on the most common things first. Give reasonable time for treatment, but ask to stop if there isn't a significant benefit otherwise you can accumulate side effects that distract. It seems normal that docs will try many different meds to see if one will work. Be careful to ask to stop meds that don't seem to really help. Taper very very slowly off if your doc ever stops an SSRI. I think I benefited from an SSRI for the first couple years just getting use to the symptoms that seemed like cardiac. Try to get an MRI of the thoracic area. Check your walking gait for any changes. See a neurologist at least once. Identify if the pain is in more than one dermatome. If gaba 300mg isn't helping, ask your doctor if you need to increase it. It could be that gaba doesn't work for you or some of the other five approaches are needed with it (ssri, pain meds, lidocaine, injections, tens). Keep family members educated on what neuralgia or neuropathy is so they understand you better. Their support is as important as gabapentin.
Pain management doctor and another doc think I have postherpetic neuralgia. Primary doc and neurologist are leaving it at being called peripheral neuropathy. It seems to me in researching that postherpetic neuralgia from the non-rash zoster sine herpete is increasingly being diagnosed. I am not sure if they do that for the patient so they quit pushing for a cause or if it is better identified nowadays or it is actually increasing. My daughter did a research paper on the possibility that shingles could increase because since the chickenpox vaccine in the 90's, we no longer have a bunch of kids with chickenpox running around boosting our immunity throughout our later years to those of us that had chickenpox, thus anyone over 20 could be more susceptible to shingles and the shingles vaccine could be more important until chickenpox history is wiped out of our generation.
I don't think the medical field always prioritizes pinpointing the cause, but rather the treatment of symptoms. I think docs know this type of problem often goes away on its own and to understand they will slowly experiment with multiple meds over a long period of time because it is usually not a life threatening problem. The reason I am writing so much is I understand what pain can do to a person and how it changes your life. Support is important.
I can only describe the attacks as if a steak knife was stabbed in my upper side, then the knife is pulled down towards my groin. Thankfully, each attack only lasts a second. Most days, I would only get 1-3 attacks, but I had a day or two in March where I had over 100 in one day. After days of multiple attacks, I am wiped out for several days and don't get out of bed and often have one or more swollen, pulled stomach muscles from reacting to the pain. I have had multiple pneumonias this last year and my doctor suspicioned the pain problem might have conditioned me to not breath deeply and use my lower lobes of my lungs, so I could be more susceptible.
Once I started getting these attacks, my doctor slowly (over 9 months) moved me up to 3600 mg gaba per day, which I think is the max allowed by FDA. Once there, my attacks stopped and I have even tapered back down the mg of gaba, but have found I can't lower it much.
Using gabapentin: I can't say it was the gaba for sure, but after starting it, my feet are slightly swollen to where I use diabetic socks to keep from cutting off circulation. My vision changes anytime the dosage is changed. Initially when on 300mg/d, I learned if I skipped gaba a couple days, I would go through the adjustment side effects again the next time I took it. I would feel slightly dizzy and almost giddy like I had a few beers. Even though it says to stay away from grapefruit and maybe other citrus while on gaba, I also discovered that drinking Squirt and some other popular clear sodas will greatly interact with gaba and cause a feeling of being slightly drunk. I have gained about 15 pounds either from inactivity or gaba or both.
Massage therapy: I was slightly paranoid of that idea because touching the trigger point caused attacks. I am sure if I would have toughed it out, it might have helped. I have chest sensitivity (less with higher doses of gaba) which also makes anyone touching me on the front chest a problem. I think it would have helped before I started getting attacks when only had constant pain. Steroid injections are no fun, but seemed to help. I would have to say after doctors/specialists tried muscle relaxers, SSRI’s, epitol, pain meds, trigger point injections, topical combinations, lidocaine patches, etc. in addition to gaba, gaba is the only thing that really works for me. If I have a high enough dosage, I can get by without anything else.
Advice: Journal daily and look back occasionally and summarize. Identify good days and bad days and why they might have happened. Keep organized with your meds. I was up to 22 pills per day and could easily get off schedule. Keep active so you don't get a secondary problem because of inactivity. Swimming is good for spine. Keep your shoulder moving when it hurts so it doesn't freeze. Stay away from neuropathy aggravaters like beer. Research, but don't spend time on unusual, but rather on the most common things first. Give reasonable time for treatment, but ask to stop if there isn't a significant benefit otherwise you can accumulate side effects that distract. It seems normal that docs will try many different meds to see if one will work. Be careful to ask to stop meds that don't seem to really help. Taper very very slowly off if your doc ever stops an SSRI. I think I benefited from an SSRI for the first couple years just getting use to the symptoms that seemed like cardiac. Try to get an MRI of the thoracic area. Check your walking gait for any changes. See a neurologist at least once. Identify if the pain is in more than one dermatome. If gaba 300mg isn't helping, ask your doctor if you need to increase it. It could be that gaba doesn't work for you or some of the other five approaches are needed with it (ssri, pain meds, lidocaine, injections, tens). Keep family members educated on what neuralgia or neuropathy is so they understand you better. Their support is as important as gabapentin.
Pain management doctor and another doc think I have postherpetic neuralgia. Primary doc and neurologist are leaving it at being called peripheral neuropathy. It seems to me in researching that postherpetic neuralgia from the non-rash zoster sine herpete is increasingly being diagnosed. I am not sure if they do that for the patient so they quit pushing for a cause or if it is better identified nowadays or it is actually increasing. My daughter did a research paper on the possibility that shingles could increase because since the chickenpox vaccine in the 90's, we no longer have a bunch of kids with chickenpox running around boosting our immunity throughout our later years to those of us that had chickenpox, thus anyone over 20 could be more susceptible to shingles and the shingles vaccine could be more important until chickenpox history is wiped out of our generation.
I don't think the medical field always prioritizes pinpointing the cause, but rather the treatment of symptoms. I think docs know this type of problem often goes away on its own and to understand they will slowly experiment with multiple meds over a long period of time because it is usually not a life threatening problem. The reason I am writing so much is I understand what pain can do to a person and how it changes your life. Support is important.
Wow! Your symptoms and coarse of treatments sounds very much like mine. After 2 yrs of seeing numerous Docs, I was recently diagnosed with Post Herpetic Neuralgia. No visible skin outbreaks from shingles for me either.
My pain also moves around the left side of my chest.
I'm on 300 mgs of Gabapentin/Neurontin. So far no relief from the pain, which can be very intense (left side of chest with numbness in left arm).
How long were you on Gabapentin before you got some pain relief? Have you ever tried TP massage therapy? I understand it works for people instead of TP injections.
Any other advice? Good luck. Let me know how it goes for you.
kasbb86
My pain also moves around the left side of my chest.
I'm on 300 mgs of Gabapentin/Neurontin. So far no relief from the pain, which can be very intense (left side of chest with numbness in left arm).
How long were you on Gabapentin before you got some pain relief? Have you ever tried TP massage therapy? I understand it works for people instead of TP injections.
Any other advice? Good luck. Let me know how it goes for you.
kasbb86
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