I find that I am more often sensitive to heat than cold. When I get out of a shower I may get so desperately cold as I'm drying myself that I feel as though I'm naked and wet outside in a cold winter. My skin actually "burns" and hurts, extreme goose bumps and my teeth chatter. I instantly curl up in a ball as I'm desperately trying to warm up, searching for heavy tools and blankets. More often I will awaken with itching, burning, sweating, radiating hot condition. Body feels like I've been deeply kicked all over my body. I have to carefully scratch my skin everywhere to help reduce the burning, agitated itch in my skin. A warm shower helps quite a bit to calm skin. Movement helps the painful body (big arm circles, twisting at my waist, stretching in doorway). Deep massage with a body massage tool helps a bit. Being still makes it all worse as I "gel" when I'm still. I get heavy axillary sweating during this time that is very strong and unpleasant. I have jaw clenching and deep ache in my jaws with severe bruxism that has cracked most molars, even with nightguard, needing many crowns. Burning lips and mouth. Burning outer ears with any pressure to them. 60% high frequenting hearing loss with no known source of it. Other hypersensitivities of light, hearing loss with hypersensitive hearing to certain sounds (?) makes no sense to me. Extreme hypersensitivity to textures and pressure of clothing. Cannot tolerate any jewelry on skin. Cannot tolerate my hair touching my skin, or one area of skin touching other areas of skin, especially when lying down. Feet often cramp so bad it still hurts after cramp has gone. I have pudendal nerve deep burning when I sit or lie down, necessitating sleeping with ice packs between upper legs and buttocks as anogenital area deeply burns. Low back/buttock burns when I'm on feet for over about 2 hours. Usual neuropathic burning/cramping of feet and calves. Elastic stockings can help prlong standing a bit. Have been diagnosed with ulnar nerve neuropathy, must bend elbows carefully and for short times. Also occipital neuralgia with chronic migraines. Neck/shoulders/upper back burning pain. Dry eyes and dry mouth, worse on waking. GI sensitivities to carbs and sweets causing extremely cramping diarrhea with sweating, nausea/vomiting. Extreme urinary frequency with occasional dribbling without sensation. Racing pounding heart was severe at one point for several years, was diagnosed with "paroxysmal ventricular tachycardia" but this has greatly reduced recently and I'm so happy to have any improvement at all. Have had most of these symptoms since 1989 during a prolonged very stressful time in life, worsened in 2020 following my only Covid infection (not vaxxed). Very soon after that I told my doctor I wanted to stop the benzodiazepine I had been taking for nearly 29 years, as directed, unaware this isn't a safe long term drug. My doctor told me to "just STOP" and I did, never took another since with horrible, cold turkey symptoms for many months. That was 45 months ago and acute phase has passed. I'm left with extreme anhedonia and personality changes, not "cheery" anymore, I'm told. I'm aware of this, just can't change it back. My neurologist does not think or consider this cold turkey withdrawal as a possible cause of sudden worsening of symptoms, and diagnosed me as "idiopathic small fiber peripheral polyneuropathy" with occipital neuralgia. He recommended high dose gabapentin...no other treatment offered. I won't take over 300-600 mg in a day, dont trust Rx drugs any more since the benzo issue. He does not need or want to see me for followup. Any suggestions? Will SoftWave ESWT help?
I got mine from steroids back in April 2024. Been to 3 doctors including the doctor who ruined me and all 3 deny that the steroids did this to me. I had steroids injected into my arm for a nerve injury from my warehouse job. I had side effects and symptoms of neuropathy 4 days after my 2 steroid shots in my arm. I’m mad and upset. My 3rd doctor who was a neurologist diagnosed me with small fiber neuropathy. I’m taking supplements now as of a few days ago. Alpha lipoic acid with b12 in it. I’m hoping I get better one day even if it takes me months I’m willing to wait. Wish I would have denied their steroid shots that day in his office. He’s a horrible doctor. He even thought my symptoms were coming from my back. He was wrong. And even wanted to give me 2 injections in my back what a quack, when physical therapy didn’t help at all. 2nd nerve doctor in Princeton looked at my MRI that was prescribed from that idiot doctor and he said my back had very slight disk bulges. He did a EMG on my feet, legs and back and saw abnormal nerve findings in my nerves in my feet. So he sent me to the neurologist where I did extensive blood work which showed nothing . Blood work was all fine. $3,000 worth of blood work. She even had another scan done on my back on my spine and it looked totally normal. So now I am stuck with neuropathy which is uncomfortable. My nerve doctor who gave me this steroid is just an awful doctor. Doesn’t he know or care that steroids can cause neuropathy. I stand for a few minutes and my right foot hurts. Both my legs and feet are numb. Thank you to whoever reads all of this.
@@bahaaworldI’m still the same. Thanks for asking. I thought I saw a slight difference the other day. A tiny improvement on Tuesday. I have been following the nerve doctors on TH-cam who say neuropathy can be reversed. You just have to have a lot of patience and follow their program. Which is eating well like a keto diet or low inflammatory diet, drinks lots of water and take those B vitamins to repair nerves. Could take 3 months to see changes and 6 months to feel great. I hope these doctors are okay. I bought their supplement called nuphoria gold. It’s expensive. I’ve been on them for 25 days. You also have to exercise daily. They have lots of video’s on their site and exercise video’s as well.
Very informative video
This is fascinating especially the potassium channel case. Is there a similar finding for sodium channel immune disorders?
I find that I am more often sensitive to heat than cold.
When I get out of a shower I may get so desperately cold as I'm drying myself that I feel as though I'm naked and wet outside in a cold winter. My skin actually "burns" and hurts, extreme goose bumps and my teeth chatter. I instantly curl up in a ball as I'm desperately trying to warm up, searching for heavy tools and blankets.
More often I will awaken with itching, burning, sweating, radiating hot condition. Body feels like I've been deeply kicked all over my body. I have to carefully scratch my skin everywhere to help reduce the burning, agitated itch in my skin. A warm shower helps quite a bit to calm skin. Movement helps the painful body (big arm circles, twisting at my waist, stretching in doorway). Deep massage with a body massage tool helps a bit. Being still makes it all worse as I "gel" when I'm still.
I get heavy axillary sweating during this time that is very strong and unpleasant.
I have jaw clenching and deep ache in my jaws with severe bruxism that has cracked most molars, even with nightguard, needing many crowns. Burning lips and mouth. Burning outer ears with any pressure to them. 60% high frequenting hearing loss with no known source of it.
Other hypersensitivities of light, hearing loss with hypersensitive hearing to certain sounds (?) makes no sense to me. Extreme hypersensitivity to textures and pressure of clothing. Cannot tolerate any jewelry on skin. Cannot tolerate my hair touching my skin, or one area of skin touching other areas of skin, especially when lying down. Feet often cramp so bad it still hurts after cramp has gone.
I have pudendal nerve deep burning when I sit or lie down, necessitating sleeping with ice packs between upper legs and buttocks as anogenital area deeply burns.
Low back/buttock burns when I'm on feet for over about 2 hours.
Usual neuropathic burning/cramping of feet and calves. Elastic stockings can help prlong standing a bit.
Have been diagnosed with ulnar nerve neuropathy, must bend elbows carefully and for short times.
Also occipital neuralgia with chronic migraines. Neck/shoulders/upper back burning pain.
Dry eyes and dry mouth, worse on waking.
GI sensitivities to carbs and sweets causing extremely cramping diarrhea with sweating, nausea/vomiting.
Extreme urinary frequency with occasional dribbling without sensation. Racing pounding heart was severe at one point for several years, was diagnosed with "paroxysmal ventricular tachycardia" but this has greatly reduced recently and I'm so happy to have any improvement at all.
Have had most of these symptoms since 1989 during a prolonged very stressful time in life, worsened in 2020 following my only Covid infection (not vaxxed).
Very soon after that I told my doctor I wanted to stop the benzodiazepine I had been taking for nearly 29 years, as directed, unaware this isn't a safe long term drug. My doctor told me to "just STOP" and I did, never took another since with horrible, cold turkey symptoms for many months. That was 45 months ago and acute phase has passed. I'm left with extreme anhedonia and personality changes, not "cheery" anymore, I'm told. I'm aware of this, just can't change it back.
My neurologist does not think or consider this cold turkey withdrawal as a possible cause of sudden worsening of symptoms, and diagnosed me as "idiopathic small fiber peripheral polyneuropathy" with occipital neuralgia. He recommended high dose gabapentin...no other treatment offered. I won't take over 300-600 mg in a day, dont trust Rx drugs any more since the benzo issue. He does not need or want to see me for followup.
Any suggestions? Will SoftWave ESWT help?
I got mine from steroids back in April 2024. Been to 3 doctors including the doctor who ruined me and all 3 deny that the steroids did this to me. I had steroids injected into my arm for a nerve injury from my warehouse job. I had side effects and symptoms of neuropathy 4 days after my 2 steroid shots in my arm. I’m mad and upset. My 3rd doctor who was a neurologist diagnosed me with small fiber neuropathy. I’m taking supplements now as of a few days ago. Alpha lipoic acid with b12 in it. I’m hoping I get better one day even if it takes me months I’m willing to wait. Wish I would have denied their steroid shots that day in his office. He’s a horrible doctor. He even thought my symptoms were coming from my back. He was wrong. And even wanted to give me 2 injections in my back what a quack, when physical therapy didn’t help at all. 2nd nerve doctor in Princeton looked at my MRI that was prescribed from that idiot doctor and he said my back had very slight disk bulges. He did a EMG on my feet, legs and back and saw abnormal nerve findings in my nerves in my feet. So he sent me to the neurologist where I did extensive blood work which showed nothing . Blood work was all fine. $3,000 worth of blood work. She even had another scan done on my back on my spine and it looked totally normal. So now I am stuck with neuropathy which is uncomfortable. My nerve doctor who gave me this steroid is just an awful doctor. Doesn’t he know or care that steroids can cause neuropathy. I stand for a few minutes and my right foot hurts. Both my legs and feet are numb. Thank you to whoever reads all of this.
how are you today ?
@@bahaaworldI’m still the same. Thanks for asking. I thought I saw a slight difference the other day. A tiny improvement on Tuesday. I have been following the nerve doctors on TH-cam who say neuropathy can be reversed. You just have to have a lot of patience and follow their program. Which is eating well like a keto diet or low inflammatory diet, drinks lots of water and take those B vitamins to repair nerves. Could take 3 months to see changes and 6 months to feel great. I hope these doctors are okay. I bought their supplement called nuphoria gold. It’s expensive. I’ve been on them for 25 days. You also have to exercise daily. They have lots of video’s on their site and exercise video’s as well.
Sjogrens ffs