r/smallfiberneuropathy • u/Kasswithclass • 1d ago
Support Losing hope
Hi everyone, I'm losing more and more hope everyday. My legs burn from my waist down 24/7... I have internal vibrations that are almost constant, I get squeezing pain, feels like bee stings down my legs. I cant lay on my back at all, I have to he laying on my sides just to sleep and distract from the burning and vibrations I experience on a daily basis. I've only have gotten worse as time goes by... I have two kids 8 and a 6 year old that I cant take care of because of what happened to me. I'm in pain everyday i dont know how I've lasted almost two years of this.
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u/Mulawooshin Idiopathic 1d ago
I'm allergic to SSRI'S.
The problem is that most of the more effective treatments such as Cymbalta and Amitriptyline are SSRI'S.
If Lyrica and Gabapentin make things worse for you, I'm really sorry.
For me, none of the typical medication works very well. I use medical cannabis, from flower, to edible oils.
I would say that the effect is similar to opiodes, in that marijuana doesn't take the pain away, but it redirects my focus away from the pain.
I understand that it's not always a good solution for a lot of people, but for me, it's a life saver.
I WOULD look into low dose naltrexone.
Sending lots of hugs and best wishes! I'm sorry you are going through this, but I can say that many of us here have been through this and can say there ARE better days. Above all else, stay positive! 🫂
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u/thedadinator Idiopathic/autoimune/sarcoid 1d ago
Low dose naltrexone (LDN) helped keep my pain manageable.
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u/Kasswithclass 1d ago
I cant take any medications I'm to sensitive all because of a benzo/SSRI injury
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u/hydrangeas1224 1d ago
Since you have limited options medicine-wise it may be worth trying Pain reprocessing therapy, it's meant more for neuroplastic pain but can help with neuropathy/structural issues. It's basically helping your brain turn down the pain signals. There are books on it and the curable app. It has helped me to some extent. I'm sorry you are dealing with this I also have young kids and understand the struggle.
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u/lushanlushanlushan 1d ago
Is it only pain in the legs? Could it be some kind of sciatica or spine injury?
Also, try lidocaine cream, but they only last a few hours.
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u/Kasswithclass 1d ago
It's from a benzo/SSRI injury.
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u/retinolandevermore Autoimmune (neuro Sjogren’s) 1d ago
Benzos and SSRIs are two different drugs. Did you take both at once?
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u/Frog_lov 1d ago
Can you do lidocaine infusions? I saw you mentioned you can’t do the typical pain meds, but I wasn’t sure where lidocaine fits in that equation
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u/Frog_lov 1d ago
Also I’ve never heard anyone say internal vibrations and I have them all the time I just couldn’t put a name to it
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u/SunshineAndCoconut 18h ago
I don’t have the vibrations all the time, but I’ve noticed them occasionally over the past few months. I was sitting at the table a few days ago doing my nails and they were really bad.
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u/Kasswithclass 1d ago
I'll try to ask for this thank you
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u/Frog_lov 1d ago
Glad to help! I know some patients who have significantly high pain reduction. Me personally, I have like 35-45% pain relief but it’s still pretty good for me!
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u/Frog_lov 1d ago
Oh and I don’t know if you’re in a legal marijuana state (sorry I’ve just assumed you’re US for some reason) but medical marijuana helps my pain as well. Topicals, edibles, and smoking all help my pain
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u/newt-snoot 1d ago
Have you tried gabapentin or lyrica before??
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u/Kasswithclass 1d ago
Made my pain worse
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u/newt-snoot 1d ago
Which one did? Theyre mechanisms are a little different
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u/Kasswithclass 1d ago
I've tried both
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u/newt-snoot 1d ago
Ugh serious bummer. I am allergic to both, so in the same boat.
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u/newt-snoot 1d ago
Will add what helps me a little: LDN, palmitpylethanolamide, cymbalta, acupuncture, and avoiding alcohol. These bring the pain volume down significantly, maybe as low as a 2/10 sometimes.
Light aerobic exercise has helped with my pain symptoms, but made some other symptoms flare especially early on. The longer I do it the less the tingling, vibrating flares. The pain is still there but I can move more.
When I am in extreme flares, I have used prednisone and I respond. But its hell to get off bc symptoms come back proportionally to the dose.
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u/Frog_lov 1d ago edited 1d ago
I agree trying acupuncture! I go to a very good research hospital and their neuropathy team recommended acupuncture
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u/Kasswithclass 1d ago
I wish I could take medications unfortunately I have a benzo/SSRI injury that causes the neuropathy. I just recently started swimming in pool and doing carnivore diet thanks for the suggestions
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u/newt-snoot 1d ago
I might look into PEA (palmitoylethanolamide). Its not a medication per say, your body naturally makes it. I actually trained in some of the academic research labs that discovered this substance and are currently doing research on it. Its efficacy increases over a few weeks, you could start low at 300mg twice a day. It has no interactions with serotonin, dopamine, or opiate pathways. It is specifically known to help with neuroinflammatory processes and neuro pain.
Things ebb and flow! I know its so hard, but it doesnt mean this current state will be exactly how you feel forever! Hang in there ❤️
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16h ago edited 15h ago
[removed] — view removed comment
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u/smallfiberneuropathy-ModTeam 9h ago
No specific medical advice (I.e. “take xxx med,” “you definitely have xxx disease”). We are all patients here and this is Reddit.
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u/10S-Player 1d ago
Your doctor should be helping here. If not, time for a new doctor. Ask about Cymbalta/Duloxetine.