Small fiber neuropathy

[Meb60]

I was diagnosed with small fiber neuropathy last year. My symptoms started three years ago. I was fortunate to find a neurologist that took the time with me to get it figured out. My symptoms are burning, itching, pricking, sensitivity to textures. My burning symptoms mainly start when I lay down at night. I am taking gabapentin and amitriptyline.

Some nights are worse than others. It is very rare that I have a good night.

I was wondering if anyone else has been diagnosed with this and what have you done that has helped your symptoms.

[bookish]

Hi, yes I have a small fibre diagnosis and also a fibromyalgia. Some doctors say that fibro is all SFN, others that SFN is the cause of fibro for about half of sufferers. Magnesium is very helpful for me and B vitamins. It seems likely now that a vit B12 and folate metabolism issue may be behind both (long family history and both are strongly genetic). Best not to supplement any B vitamins until properly tested as that will make a confusing problem even worse, but if you are not supplementing it would be worth getting serum B12 and serum folate tested in the first instance (although those cannot rule out a deficiency). Lots of other causes like blood sugar, thyroid, copper and other meds. Cheers

[Defenders]

Hello, I’m in the UK. I have peripheral neuropathy diagnosed as caused by the antibiotic Ciprofloxacin, a fluoroquinolone. This is a family of drugs eg Cipro, Moxifloxacin etc. I also have Axonal Sensory Neuropathy, tinnitus, dizziness, tendon issues again caused by this awful antibiotic. There is no treatment or cure for my problems. Biofreeze gel is a good camouflage, say for when you are going out shopping, I give my lower legs and feet 2 coats of this. Soak your feet in cold water is another. I have a power recliner which helps having your feet off the floor, or just elevate your feet on a stool. Best wishes, Isobel xx

[bookish in reply to Defenders]

Hi, I'm sorry to hear that. I am aware of others on the various forums with the same cause. I just wondered whether anyone had ever prescribed vit B12 injections as treatment (rather than due to deficiency, which presumably has been ruled out, although that is often missed and not always a straightforward process). B12 can help with neurological damage even when all tests are normal and all of the Bs are important for nerve function and repair. ncbi.nlm.nih.gov/pmc/articl... Best wishes

[Defenders in reply to bookish]

Hello Bookish. When you have taken a fluoroquinolone antibiotic, for me Ciprofloxacin, it goes straight to your cells and stays there causing havoc! It is a drug used in Chemotherapy to destroy cancer cells!!! No treatment and no cure for everything it has done to my body. My consultant is head of Pharmacogenetics for the whole of the UK.

Isobel

[bookish in reply to Defenders]

Yes, I'm aware. But there are always things that may be tried as often improvements can be made. NAC and glutathione for the ROS, vit C, D, E, magnesium and Bs for methylation, attention to the mitochondria. Functional medicine may help if conventional cannot, but at least the conversation is ongoing ncbi.nlm.nih.gov/pmc/articl...

[Defenders in reply to bookish]

Hi Bookish, I do take the supplements you mention, with the exception of magnesium as I’m allergic to mag in any form. The ncbi report you have referred to is from 2017, that just shows how difficult it is to find anything helpful, or a cure. I am in a Group of 400 people in the UK who are all afflicted by FQ’s, looking, taking, doing everything we can to alleviate/treat/cure some, if not all, of our symptoms. I was prescribed Ciprofloxacin 9 years ago and have been searching for that long! I’m in touch with people in the US and Europe who are all searching. TY Isobel

[bookish in reply to Defenders]

I wish you well with the search. Cheers

[lovenothate in reply to Defenders]

Hi Isabel,

I have wondered whether my own neuropathy (and other neurological symptoms) and tendon and muscle problems have been linked to a reaction I had, several years earlier, by Cyprofloxacin.

Can I ask you how much time after this terrible drug was taken did your symptoms appeared?

Kind wishes,

Will

[Defenders in reply to lovenothate]

Hi Will, on the 4th day of a 5 day course of Cipro, it woke me up in the night with terrible burning, tingling, pins and needles like feelings, and that was it for 9 years. It can take up to 6 months and maybe longer for symptoms to appear. Everyone is different. I’ve also been diagnosed with Axonal Sensory Neuropathy (I had Nerve Conduction Tests by a Neurophysiologist for this), tinnitus, dizziness, on going tendon problems (I’ve had Achilies tendonitis) also in my shoulders and upper arms) muscle problems. There’s no end of awful things. I can only walk for about 2 mins and stand for about the same time. BW Isobel

[lovenothate in reply to Defenders]

Thank you for sharing your experience Isobel.

My symptoms are very similar and I’ve been dependent on a motorised wheelchair 🧑‍🦼 for the last 10 years.

Would you mind messaging me details of the group you mentioned? No worries if not.

Thanks again, Will

[Defenders in reply to lovenothate]

Will do, Will! I will give you my email address also. Take care, Isobel

[SpudyM82]

Amitriptyline made me hyper sensitive felt like some one was tickling my spine I actually got my wife to punch me repeatedly on the back to stop the sensation I then used my tens to over come it. But I never took it again. We just upped my gaba to 600 but i am also on fentanyl mezolar matrix patches a 12 and a 25 to stop withdrawal.

[Defenders in reply to SpudyM82]

Hi, I’m prescribed Gabapentin 300mg twice a day and 600mg at night for severe leg pain caused by the antibiotic Ciprofloxacin. My Neurologist took me off Amitriptyline and put me on Gaba, she said it will be better for you. TY Isobel

[L3hipguy]

Hi. I have neuropathic pain in left hip, leg and foot now for about 7 years. MRI scans show spinal stenosis. I also have tendon pain into foot and tinnitus. I also cracked a vertabrae at L3 (wedge fracture) which doesn't help matters. I have been prescribed cocodomol, amitriptyline, codeine, tramadol and for the last 2 years gabapentin.

I was using 3000mg/day for 18months to ease pain and allow me to walk any distance. However it turned me into a stumbling zombie unable to really function on a day by day basis. I recently halved my gaba doesage and take 30mg/day duloxetine as well. My family say I am far more alert now. I would say beware of gaba at high doses.

[Meb60 in reply to L3hipguy]

I have heard that about gabapentin. I find myself very forgetful. I also am at a loss for words when I am talking. I'll have to talk to my doctor about duloxetine. Thanks for the info.