Parsonage turner syndrome *

I am an outlier. PTS first presented in my 70s, and I have experienced at least four attacks (at least two on each side of my back). Improvement has been very limited. Hand grip strength dropped at least 50% within a few weeks of my initial attack on each side of my back. My back (the edge of my shoulder blades) hurts more in the evening than in the morning, and pressure on my back (e.g., lying on my back) is more painful than sitting or standing. Triggers included viruses and/or vaccines (COVID and/or pneumonia vaccines), and extraction of an infected tooth.

Gabapentin alone (600 mg. morning and night) was not effective to reduce pain. Nortriptyline was effective, but with too many side effects (reduced REM sleep, difficulty urinating and difficult to have a bowel movement). Current medications for pain include LaMICtaL (loamoTRIgine) 100 mg morning and evening; gabapentine (300 mg at night); 1000 mg acetominophen at night. I also use a 20% ketoprofen transdermal cream on affected areas once or twice a day. This combination of medicines reduces pain about 50% to 60% and allows me to get to sleep. Daily vitamins to help nerve regeneration (too soon to tell if they are helping) include an adult multivitamin; 500 mcg biotin; and a Super B omplex. A 2.5 mg. injection of Zepbound once each week seems to ameliorate the severity of attacks. Physical treatments include TENS treatment for sharp pain in my hands (this reduces the sharpness of the pain, but not general pain), and a heating pad on my upper back, which reduces pain in my hands but does nothing for my back. Cold packs are not effective. Physical therapy is not effective largely because therapists have no idea how to treat nerves - therapists are trained for and have experience treating muscles, tendons, etc. Few therapists have effectively treated nerve damage.

My symptoms change from day to day and hour to hour. Constant symptoms include pain at the edge of my shoulder blades (where the symtoms of an attack first occur), and pain and tingling in my hands and fingers. Many days I have sharp pains in my fingertips. Other common but irregular symptoms include pain in my armpits and elbows; tingling and skin numbness in the arms; phantom itching on the backs of my hands and fingers (no amount of hand cream seems to solve this symptom - the itching appears and goes away suddenly); diaphram tightness (hard to take a deep breath); some lack of sensation in areas of my palms; and fatigue (some days I can walk 30 minutes, and some days I have trouble walking 5 minutes).

I hope that this information helps a few others living with PTS. Please note that if you try taking LaMICtal, it must be introduced very slowly to avoid a life threatening allergic reaction. Effective doses can only be achieved after two or three months.

I am an outlier. PTS first presented in my 70s, and I have experienced at least four attacks (at least two on each side of my back). Improvement has been very limited. Hand grip strength dropped at least 50% within a few weeks of my initial attack on each side of my back. My back (the edge of my shoulder blades) hurts more in the evening than in the morning, and pressure on my back (e.g., lying on my back) is more painful than sitting or standing. Triggers included viruses and/or vaccines (COVID and/or pneumonia vaccines), and extraction of an infected tooth.

Gabapentin alone (600 mg. morning and night) was not effective to reduce pain. Nortriptyline was effective, but with too many side effects (reduced REM sleep, difficulty urinating and difficult to have a bowel movement). Current medications for pain include LaMICtaL (loamoTRIgine) 100 mg morning and evening; gabapentine (300 mg at night); 1000 mg acetominophen at night. I also use a 20% ketoprofen transdermal cream on affected areas once or twice a day. This combination of medicines reduces pain about 50% to 60% and allows me to get to sleep. Daily vitamins to help nerve regeneration (too soon to tell if they are helping) include an adult multivitamin; 500 mcg biotin; and a Super B omplex. A 2.5 mg. injection of Zepbound once each week seems to ameliorate the severity of attacks. Physical treatments include TENS treatment for sharp pain in my hands (this reduces the sharpness of the pain, but not general pain), and a heating pad on my upper back, which reduces pain in my hands but does nothing for my back. Cold packs are not effective. Physical therapy is not effective largely because therapists have no idea how to treat nerves - therapists are trained for and have experience treating muscles, tendons, etc. Few therapists have effectively treated nerve damage.

My symptoms change from day to day and hour to hour. Constant symptoms include pain at the edge of my shoulder blades (where the symtoms of an attack first occur), and pain and tingling in my hands and fingers. Many days I have sharp pains in my fingertips. Other common but irregular symptoms include pain in my armpits and elbows; tingling and skin numbness in the arms; phantom itching on the backs of my hands and fingers (no amount of hand cream seems to solve this symptom - the itching appears and goes away suddenly); diaphram tightness (hard to take a deep breath); some lack of sensation in areas of my palms; and fatigue (some days I can walk 30 minutes, and some days I have trouble walking 5 minutes).

I hope that this information helps a few others living with PTS. Please note that if you try taking LaMICtal, it must be introduced very slowly to avoid a life threatening allergic reaction. Effective doses can only be achieved after two or three months.