My first attack was on left side face/ear/head/temple. 6 mos went by with no attacks, then i had an attack on right side face/head/ear/temple. I then had bilateral TN pain, and then nerve pain migrated to wrists arms, feet, calves, thighs, stomach & back. It has been almost three months of this all over pain. I have searched & searched and have not been able to find anything on Internet about nueralgia across entire body!?! 2 nueros that I have seen both say it is nueralgia, atypical. (Had MRI to rule out MS, tumor, etc. receiving B12 injections for difficiency and placed on synthroid for hypothyroid. Also taking Gabapentin.).
Wondering if anyone else has experienced this pain in multiple places on their body? Is this more typical – and why is there lack of info on this condition?
I could be wrong, but I have never heard of TN or ATN covering the body. Could you maybe have fibromyalgia? That would be my guess. Best to check with your doctor.
Hi, all you have described sounds like me...all over pain, aches and nerve pain in arms hands legs feet back chest, pins and needles, swelling and oedema...I feel as though I have a terrible flu but I am not sick, it comes in "flares" days of terrible pain and then eases again. Sometimes it stays for weeks. I have been diagnosed by my Rheumatologist as having Fibromyalgia. This may or may not be your diagnosis, but to find out more information your PCP can refer you to a Rheumatologist to discuss your types of pain and your pain history, then they can give a diagnosis. Also to prescribe the right medications for your diagnosis so you can manage your pain. There is hope!
I also have low B12 (have injections) and low iron (have iron infusions) and low vitamin D. I manage my Fibro with Lyrica and Paracetamol but there are many alternatives in medications.
thank you for your replies, As I indicated, I have seen doctors (2 neurologists, GP) and have been diagnosed with nueralgia. As they informed, anywhere you have nerves you can feel this pain if your nerves are inflamed/ damaged. I am not familiar with fibromyalgia, but the brief research I have done indicates it affects joints and soft tissue, whereas, I face the pain in my nerves.
Mel77 - do you have TN as well? Just curious how similar the pain/symptoms are if you have both. Wish you the best in managing the fibromyalgia, hope many good days are ahead for you!
I have had TN for 4 years but in the past year or so have been getting similar nerve pain all over my body. It started primarily in my legs and forearms and has progressed to my entire body at times which I feel mostly at night/upon waking. My neuro suspects fibromyalgia but didn't want to run any more tests because I tested low D. I am going back to my much more qualified neuro later this month because I have had weird sensations in my left foot where it feels wet in a specific spot and when I check, it is bone dry. That feeling was going on for a couple of weeks and my pc suspects nerve damage in my back.It is maddening to have these nerve pains and not know what is causing it. I also have a great deal of pain in my left hand (TN side) last three fingers. Pain in the fingers on TN'ers is somewhat common but I don't often see TN suffers speaking of all over body pain. I also have compression in my lower legs and forearms every morning. It feels like I am wearing compression stockings and there is a tight band around the middle of my legs. Hope you find some answers and I look forward to updates.
Thank you shadow2. Good luck to you too in finding answers with the new nuero!
shadow2 said:
I have had TN for 4 years but in the past year or so have been getting similar nerve pain all over my body. It started primarily in my legs and forearms and has progressed to my entire body at times which I feel mostly at night/upon waking. My neuro suspects fibromyalgia but didn't want to run any more tests because I tested low D. I am going back to my much more qualified neuro later this month because I have had weird sensations in my left foot where it feels wet in a specific spot and when I check, it is bone dry. That feeling was going on for a couple of weeks and my pc suspects nerve damage in my back.It is maddening to have these nerve pains and not know what is causing it. I also have a great deal of pain in my left hand (TN side) last three fingers. Pain in the fingers on TN'ers is somewhat common but I don't often see TN suffers speaking of all over body pain. I also have compression in my lower legs and forearms every morning. It feels like I am wearing compression stockings and there is a tight band around the middle of my legs. Hope you find some answers and I look forward to updates.
Redbetty77 I have ATN bilaterally, and facial neuropathy diagnosed by a Neurologist with limited knowledge of the condition, and I have been referred to see a TN Specialising Neurologist in February and hoping he can give me further diagnosis as I feel my condition has progressed since early 2013. I have both the electric shock episodes, and also the constant raw pain in both sides, and medication keeps me functioning. Both my ATN and Fibromyalgia occurred within a month of the other 3 years ago now. I hate to think what the continuous meds have done to my body, I am being monitored for Liver and Kidney etc.
Feel free to ask me any question, I am pretty open about my health issues, I too wonder if we share a similar pattern. Just a thought on Fibro, for me personally, my fibromyalgia pain is managed best by using medication targeting Nerve Pain: Lyrica and no other muscle relaxant or anti-inflammatory has had the same relieving effect on my pain as this. If I wean slowly from using it and stop or run out of it, my all over body pain and shooting pains in hands shoulders and feet, as they call a "fibro flare up" comes back to me within days. I also use Gabapentin for my ATN, and Paracetamol with low dose Codeine. They are all my mainstay drugs. Do you use any medications to help manage the all over body pain?
Redbetty77 said:
thank you for your replies, As I indicated, I have seen doctors (2 neurologists, GP) and have been diagnosed with nueralgia. As they informed, anywhere you have nerves you can feel this pain if your nerves are inflamed/ damaged. I am not familiar with fibromyalgia, but the brief research I have done indicates it affects joints and soft tissue, whereas, I face the pain in my nerves.
Mel77 - do you have TN as well? Just curious how similar the pain/symptoms are if you have both. Wish you the best in managing the fibromyalgia, hope many good days are ahead for you!
I have fibro and Atypical TN. What you describe all over sounds like fibro. The problem with fibromyalgia is it is a condition that is determined by ruling out all other possibilities. Many old school doctors still question its existence. The good news is Lyrica or gabapentin are drugs that treat both conditions. When my TN goes into remission and I am dealing with fibro only, I generally can manage pain through self care; sleep, diet, exercise; chiropractic and massage care (regular) and then I need no medication.