Idiopathic Small Fibre Neuropathy
 

Hi! I am new to this forum but have been viewing for awhile!
My diagnosis for Idiopathic Small Fibre Neuropathy came in July 2009, based on
my then Neurologists findings at the time. Had extensive bloodwork, NCS and MRI. All tests came back normal with nothing unusual noted. All symptoms at the time seemed to fade gradually and by years-end I appeared to be symptom free. Is this typical of SFN?
Fast forward to the last few months, all symptoms have ret'd and seem to be getting worse.
I have constant tingling and heaviness in arms, hands, legs and feet and lower torso, extreme skin sensitivity to temp changes, especially cold,some burning from time to time and the list goes on.

I am presently awaiting a new NCS and appointment with a new Neurologist as the one I saw prior is no longer in my province. These have been ordered by my PCP, but could take sometime as I live in Atlantic Canada.

I am not on any medication just some supplements (B12 methyl type, alpha lipoic acid, vitamin D and B50 and a Multi Vit.) that I had learned about on this forum in 2009, and again most recently.

I am just looking for some information that might be helpful while I await my appointments. This is a lonely journey as symptoms are hard to relate to family and friends, as all of you probably know! I am beginning to find this return of symptoms very limiting when it comes to daily activities and this both scares and saddens me, not to mention the fast approaching winter weather. Thank goodness for heated carseats!!!!

Thanks for reading this and any insights and advice would be much appreciated as I await my appointments.

Yes, hard to explain
 

Glad to hear from you. I think the pain from neuropathy is extremely hard for anyone that has not experienced it to understand. It is very frustrating to the sufferer to try to explain the condition to someone.

You will probably hear from many others with similar situations that will offer advice. My neuropathy is a result from injury during surgery so not only is the origin known, it is also limited to specific body parts, thank goodness. When I have read here of so many that suffer from widespread neuropathies, I just can't imagine. I have trouble dealing with my limited areas of pain.

Hoping you find all the answers and support you need from members here.

Great to meet you!!
 

Hi there. Welcome.

My husband was diagnosed with Idiopathic Peripheral Neuropathy over 20 years ago. His emg and nerve conduction tests indicated it was small fiber. He burns (his feet). And he has no feeling whatsoever in his feet. They never found out why. They tested everything. He thinks it's from spinal stenosis, he went to several back doctors and no one would say (even after MRI's), that yes indeed, your neuropathy is from your back.

He tried all the meds, lyrica, Neurontin, etc, that docs prescribe for neuropathy. In his case they made him ill. The only drug that took away the neuropathy burning was elavil but it made him so itchy he had to stop. The only drug that did the trick was the Fentanyl pain patch but eventually he had to be weaned off of that because he kept needing a higher dose. That was 10 years ago. But it really did do the trick. But he never went to the bathroom. These meds do have their side effects.

Everyone suspects that it's auto-immune related. He has awful psoriasis also.

What can one do? One can be married to me, and laugh your head off and that sometimes relieves some of the symtoms. I also give him massages that help a GREAT deal with the burning in his feet.

So my dear, I do feel for you. And from reading what others have posted here, getting support from family members seems to be hard at times.

Just know that we know what you are dealing with. You will find new friends here. Keep posting.

Take care,

Melody

Welcome to NeuroTalk:

It might be helpful if you could find the trigger to this relapse.
Vaccine? drugs taking now or in the recent past.
Exposure to formaldehyde in wood, or pesticides, chemicals in yard work? A viral illness?

Hi Melody, and thanks for your reply. I am sorry to hear about your husband and truly wish you and him the very best.
My husband is very supportive and does everything he can to help me handle this. I am usually an outgoing fun person-now I feel totally the opposite, as hard as I try!
I have read some of your posts and you have truly brought a much needed smile to my face and I thank you for that.
I was also placed on Neurontin then Lyrica back in 2009, the side effects were not pleasant at all. I am presently on no meds, just supplements, as stated in my original post.
Take Care-CeCe.

Hi mrsD and thank-you for your response. I had a whooping cough booster over a year ago and the last time I took an antibiotic(a rather large dose of Clindamycin) was in July of 2012, along with some Ciproflox ear drops at the same time.
I have not been on any other meds since.

We did however do a lot of inside painting but that was over a year ago also.
Other than that can't think of anything else right now.

We have another poster on the PN forum who has a severe
body wide neuropathy following the Pertussis adult vaccine.
(her neurologist just told her he thought this was the culprit).

This is very interesting! However, would it take this long for my return of symptoms to show up? I will be sure to mention this when I finally get an appt. with a Neuro.
I forgot to mention that the sensation (just in the lower legs at the time) happened in the late evening of return from a week long camping trip. It has been progressive since then.
Thanks.

Ah a camping trip. Could you have gotten bit by a tick?? Exposed to something in the bushes maybe?? Something has triggered this obviously. And thanks for the kind words. Regards melody