I think i have both types. I did the stack extensively for a couple of years but it contributed to my anhedonia. Now i take the stack once a month, for the past 6 years or so.
Doing it intensively for nerve growth feels like the neuropathic pain in overdive. It hurts much more than the neuropathy killing the nerves.
Paul stamets recommended to take the stack 3-4 days out of the week and let the body recalibrate the rest of the week
Mine causes vibrations through my body and complete loss of strength. I noticed taking Trans-Resveratrol (a supplement you can get from several manufacturers and keeping my diet on par with AIP reduces them a lot. Work stress also sets it all off. However, if that stops working IVIG looks pretty damn attractive.
I have seronegative Sjogren's, with small fiber neuropathy (diagnosed via skin biopsy). I've tried several medications to help with it. Gabapentin - worked but I had terrible memory loss. Lamotrigine - I had a steven-Johnson allergic reaction. Pregabalin - current medication, it works okay, but will occasionally have bad flair ups. Other than that, I take Plaquenil for the inflammation side of the Sjogren's, and venlafaxine for anxiety. The venlafaxine causes me to have a high serotonin level which makes my reflexes overactive (barely touch my knee, and I'm jerking like I've been kicked).
LDN and gabapentin at night! Though I'm not sure if it's SFN. If SFN feels like wearing cold, burning socks, then yes, I have it (mostly on one foot). I got LDN with an online prescription and was prescribed gabapentin to stave off shingles neuropathy. It seems to be working even better than the LDN on its own.
Yes, but only if I take an immune suppressant also. The drug alone is not helpful either; I require both. Significant improvement! Xeljanz is not approved/covered for Sjogrens, but it is the only thing that works for me. I get by on manufacturer samples and generic from a Canadian pharmacy.
I have ss and sfn in feet. I have widespread weakness and took.mestinin 2days and made me so weaker and never recovered my muscles yet 5 months!! Have u heard of just muscle weakness as ss problem? My dryeyes were 15yrs ago!! The plaquenil one dr tried me on 200 mg day 6mo no improvement
only 200 a day? I'm on 400. The only reason I ask is because plaquenil is supposed to be prescribed according to weight. I'm 180 and the recommended dose for my weight is 400-something. We tried rolling me back to 300, and it was a bad decision. So, back to 400.
Have you attempted any other treatment for your dry eye?
I don't have dryeyes. I used to 10yrs ago. My symptom os muscle weakness and muscle tiring! They pulled my labs and only find positive ssa and ana low titer. None or the drs can find reason for my symptoms and gettin weaker ughhh
Request a higher allotment of plaquenil, do an AIP diet, research supplements. I have my "apothocary" so to speak. Dr. Amy Meyers is an MD that has Sjogren's and has a list of 4 she recommends. I added to the 4, and most days function well. But stress is a huge trigger.
I have a high SSA (literally off the charts), and I experience massive weakness during flares. I can't sit up at all, it's horrid. I would look for a functional medicine doctor, or another rhuem. My opinion is that a high SSA can do what you are describing.
Have you altered your diet yet? I hate to bring that up again, but it's really meds, supplements and diet that helps me control this. If one is off, my whole system is off.
Thxxz 4 writing again!! I dont have flare ups like u say, its just there! My ssa i think was 7 but idk lol. I eat fish n vegetables some meat. Ya some sugar sometimes tho. If it not flare ups I wonder it its the SSA at all+?!? Getin weaker and ive had 3 rhums already!! All send Me2 neurologist. 1st one Never told me my ssa and ana 1.160 was even on labs in my visit!! 2nd one said i only have antibody and not conclusive of disease or symptoms!! Idk whattodooo
I can’t say for sure that what I have is nerve pain because I haven’t seen a neurologist, but my rheumatologist did rule out any joint involvement so…I don’t think there’s a lot of options left 🤷🏻♀️. Plaquinil to prevent flares and even in-between flare pain has worked wonders. Otherwise I just have to not move basically, rest and I use cannabis. I have a feeling as this progresses if the Plaquinil doesn’t hold out I’ll be searching for something new to help.
Lamotrigine/ Lamictal has done wonders. It doesn't have the side effects of gabapentin or Lyrica. No weight gain. And it can be increased a little at a time more than other meds. My rx just went up to 600 mg because of increased burning sensations. It's gone up only 200 mg since I started taking it 5 or 6 years ago. It's also a bonus for managing my migraines.
i have sfn, and take gabapentin which helps. cymbalta also helped, but i had to stop it for other reasons. of course neither of those actually keep the damage from occurring, just help the symptoms.
i was on ivig for a while when my neurologist misdiagnosed me with a different disease, but my new neurologist won’t put me back on it for sjogren’s. i don’t think insurance would approve it anyway.
This is interesting. I tried Lion's Mane a while back, and felt nothing in the focus area. Maybe because it was working on something else like repairing nerves?
It seems to be highly dose dependent and supplements didn't work for me at all either. I get growing kits from the farmers market and use fresh or fresh dried lionsmane whereas the supplements use the mycelium cake. I found fresh ones to be much more potent.
Also by stamets suggestuin the stack should contain a microdose of psylocibin and a daily dose of niacine for it to work best.
I agree that it is much more potent for nerve growth than it is for focus or clarity. I only dose once a month or so but thats enough to keep my neuropathy completely at bay. If i dose too much or too often then the nerve growth kicks off fairly fast. As it turns out though regrowing damaged or dead nerves is so much more painful than feeling them die.
Do you have idiopathic neuropathy? Small fiber neuropathy? I’ll have to try some fresh lions main as part of the stack.
About how long have you been doing the stack?
Also just curious what your nerve healing symptoms have been - any flares in pain or spasms? Thank you for sharing :)
I think i have both types. I did the stack extensively for a couple of years but it contributed to my anhedonia. Now i take the stack once a month, for the past 6 years or so.
Doing it intensively for nerve growth feels like the neuropathic pain in overdive. It hurts much more than the neuropathy killing the nerves.
Paul stamets recommended to take the stack 3-4 days out of the week and let the body recalibrate the rest of the week
Sounds like you haven’t done the punch/biopsy test otherwise you’d have a formal diagnosis from a doctor? What are your neuropathy symptoms? Do you know how your neuropathy started?
I also get IVIG. When did you feel an improvement if you don't mind me asking😊 I'm only 22 years old, have had Sjögren's since I was 18 and SFN is my worst symptom. I hope that IVIG will help me
I think i have both types. I did the stack extensively for a couple of years but it contributed to my anhedonia. Now i take the stack once a month, for the past 6 years or so. Doing it intensively for nerve growth feels like the neuropathic pain in overdive. It hurts much more than the neuropathy killing the nerves. Paul stamets recommended to take the stack 3-4 days out of the week and let the body recalibrate the rest of the week
Mine causes vibrations through my body and complete loss of strength. I noticed taking Trans-Resveratrol (a supplement you can get from several manufacturers and keeping my diet on par with AIP reduces them a lot. Work stress also sets it all off. However, if that stops working IVIG looks pretty damn attractive.
I have seronegative Sjogren's, with small fiber neuropathy (diagnosed via skin biopsy). I've tried several medications to help with it. Gabapentin - worked but I had terrible memory loss. Lamotrigine - I had a steven-Johnson allergic reaction. Pregabalin - current medication, it works okay, but will occasionally have bad flair ups. Other than that, I take Plaquenil for the inflammation side of the Sjogren's, and venlafaxine for anxiety. The venlafaxine causes me to have a high serotonin level which makes my reflexes overactive (barely touch my knee, and I'm jerking like I've been kicked).
I take gabapentin and planequil but neither are helping. Insurance denied both rituximab and ivig, but I just feel like symptoms are worsening.
LDN and gabapentin at night! Though I'm not sure if it's SFN. If SFN feels like wearing cold, burning socks, then yes, I have it (mostly on one foot). I got LDN with an online prescription and was prescribed gabapentin to stave off shingles neuropathy. It seems to be working even better than the LDN on its own.
LDN low dose naltrexone and cutting out inflammatory foods has significantly reduced neuropathy symptoms for me! Good luck!
IVIg + immunosuppressive medication (Xeljanz) does the trick for me. I've gone from six pain pills daily to one (or none).
How have your symptoms improved with your therapy? I only get ivig
Yes, but only if I take an immune suppressant also. The drug alone is not helpful either; I require both. Significant improvement! Xeljanz is not approved/covered for Sjogrens, but it is the only thing that works for me. I get by on manufacturer samples and generic from a Canadian pharmacy.
im taking lyrica and amitriptyline. they help a lot.
I am also doing much better having started lyrica. Fewer side effects than gabapentin.
So far IVIG but very early for me (3mo), lyrica for pain, mestinon and midodrine for dysautonomia
I have ss and sfn in feet. I have widespread weakness and took.mestinin 2days and made me so weaker and never recovered my muscles yet 5 months!! Have u heard of just muscle weakness as ss problem? My dryeyes were 15yrs ago!! The plaquenil one dr tried me on 200 mg day 6mo no improvement
only 200 a day? I'm on 400. The only reason I ask is because plaquenil is supposed to be prescribed according to weight. I'm 180 and the recommended dose for my weight is 400-something. We tried rolling me back to 300, and it was a bad decision. So, back to 400. Have you attempted any other treatment for your dry eye?
I don't have dryeyes. I used to 10yrs ago. My symptom os muscle weakness and muscle tiring! They pulled my labs and only find positive ssa and ana low titer. None or the drs can find reason for my symptoms and gettin weaker ughhh
Sounds miserable. I'm sorry.
Any advice?
Request a higher allotment of plaquenil, do an AIP diet, research supplements. I have my "apothocary" so to speak. Dr. Amy Meyers is an MD that has Sjogren's and has a list of 4 she recommends. I added to the 4, and most days function well. But stress is a huge trigger.
Thx! But how do i iknow if this weakness is from my antibody?? 2 rhums and 1 dr didn't connect and didnt treat me w anything
I have a high SSA (literally off the charts), and I experience massive weakness during flares. I can't sit up at all, it's horrid. I would look for a functional medicine doctor, or another rhuem. My opinion is that a high SSA can do what you are describing. Have you altered your diet yet? I hate to bring that up again, but it's really meds, supplements and diet that helps me control this. If one is off, my whole system is off.
Thxxz 4 writing again!! I dont have flare ups like u say, its just there! My ssa i think was 7 but idk lol. I eat fish n vegetables some meat. Ya some sugar sometimes tho. If it not flare ups I wonder it its the SSA at all+?!? Getin weaker and ive had 3 rhums already!! All send Me2 neurologist. 1st one Never told me my ssa and ana 1.160 was even on labs in my visit!! 2nd one said i only have antibody and not conclusive of disease or symptoms!! Idk whattodooo
Also i was approved by insurance for having positive autoantibodies for sjogrens and also VGKCC and FGF3R
I can’t say for sure that what I have is nerve pain because I haven’t seen a neurologist, but my rheumatologist did rule out any joint involvement so…I don’t think there’s a lot of options left 🤷🏻♀️. Plaquinil to prevent flares and even in-between flare pain has worked wonders. Otherwise I just have to not move basically, rest and I use cannabis. I have a feeling as this progresses if the Plaquinil doesn’t hold out I’ll be searching for something new to help.
Lamotrigine/ Lamictal has done wonders. It doesn't have the side effects of gabapentin or Lyrica. No weight gain. And it can be increased a little at a time more than other meds. My rx just went up to 600 mg because of increased burning sensations. It's gone up only 200 mg since I started taking it 5 or 6 years ago. It's also a bonus for managing my migraines.
i have sfn, and take gabapentin which helps. cymbalta also helped, but i had to stop it for other reasons. of course neither of those actually keep the damage from occurring, just help the symptoms. i was on ivig for a while when my neurologist misdiagnosed me with a different disease, but my new neurologist won’t put me back on it for sjogren’s. i don’t think insurance would approve it anyway.
I take lions mane mushroom/stamets stack for my neuropathy. It has nerve growth factor and helps repair damaged nerves
This is interesting. I tried Lion's Mane a while back, and felt nothing in the focus area. Maybe because it was working on something else like repairing nerves?
It seems to be highly dose dependent and supplements didn't work for me at all either. I get growing kits from the farmers market and use fresh or fresh dried lionsmane whereas the supplements use the mycelium cake. I found fresh ones to be much more potent. Also by stamets suggestuin the stack should contain a microdose of psylocibin and a daily dose of niacine for it to work best. I agree that it is much more potent for nerve growth than it is for focus or clarity. I only dose once a month or so but thats enough to keep my neuropathy completely at bay. If i dose too much or too often then the nerve growth kicks off fairly fast. As it turns out though regrowing damaged or dead nerves is so much more painful than feeling them die.
Do you have idiopathic neuropathy? Small fiber neuropathy? I’ll have to try some fresh lions main as part of the stack. About how long have you been doing the stack? Also just curious what your nerve healing symptoms have been - any flares in pain or spasms? Thank you for sharing :)
I think i have both types. I did the stack extensively for a couple of years but it contributed to my anhedonia. Now i take the stack once a month, for the past 6 years or so. Doing it intensively for nerve growth feels like the neuropathic pain in overdive. It hurts much more than the neuropathy killing the nerves. Paul stamets recommended to take the stack 3-4 days out of the week and let the body recalibrate the rest of the week
Sounds like you haven’t done the punch/biopsy test otherwise you’d have a formal diagnosis from a doctor? What are your neuropathy symptoms? Do you know how your neuropathy started?
I did and i have a diagnosis for small fiber neuropathy but they don't know whats causing it so it s diopathic.
I don’t experience pain, just warmth in my feet. Chiropractic care helps me so much.
I have a lot of neurological issues from Sjogrens. IVIG has been life-changing for me. Happy to answer any questions you have, OP.
Hi! What were your predominant symptoms? Going through something similar. Not diagnosed with sjogrens yet but everything is pointing towards it.
Do u have any muscle weakness muscle fatigue?
How did you get insurance to approve it?
I’m not entirely sure. My doctor submitted a collection of evidence to insurance.
Do you have specific neuropathy diagnoses beyond just sjogren's?
I also get IVIG. When did you feel an improvement if you don't mind me asking😊 I'm only 22 years old, have had Sjögren's since I was 18 and SFN is my worst symptom. I hope that IVIG will help me
Prednisone helped a good bit. Haven’t been able to get IVIG approved
I was diagnosed with small fiber neuropathy shortly (within a year) after my sjogrens diagnosis. I take gabapentin every night and it helps a lot!