Sudden onset SFN, high c reactive protein, seeking answers
 

At 20 years old I had a very sudden onset of numbness and pain in my hands and arms. It started in my right arm and then in my left as well. I struggled to lift them to even brush my hair.

At the time, I was in college and the clinic first said it was probably a pinched nerve and then said it was possibly stress or anxiety (I know). At one point I was sent to the ER because I started to have chest pains (which the clinic tried to treat by having me breathe into a paper bag) and was told I had costochondritis, unrelated to my pain and numbness in my arms.

Eventually I was able to lift my arms again but I still had a lot of numbness and pain (I think I just got used to it honestly). I had been diagnosed with IBS two years previous to that and I was good at getting used to pain and problems with my body.

I went to a number of doctors; neurologists, endocrinologists, rheumatologists, you name it. The first diagnosis I got was Chiari and I had surgery for it, about a year after the onset of symptoms. However, after the recovery period, I was still experiencing the same symptoms and the neurosurgeon who had insisted Chiari was causing the problems said that maybe it hadn't been the cause after all.

Not long after that, I had an nerve conduction study and a punch biopsy and was diagnosed with Small Fiber Neuropathy. While searching for answers and after diagnosis, I had blood tests for a variety of different potential causes; lyme, chrons, lupus, thyroid problems, IBD, diabetes, and problem a whole host of other causes I'm forgetting.

The only thing my bloodwork showed was a high level of C reactive protein, which my doctor told me meant something was causing inflammation in my body and that my SFN had an autoimmune cause but that they didn't know what it actually was.

Since then, I've been put on Duloxetine for pain management and I continue to experience quite a bit of numbness in my hands. I have had diagnoses of PCOS, chronic fatigue, and the continuing IBS.

I have had severe pain in my feet and legs as well but I usually attribute that to flat feet. I am 26 now. In that time, I have also experienced (or am still experiencing really) severe back and neck pain, hair loss, weight gain, anemia and vitamin D deficiency, and one doctors says I have keratosis pilaris and am possibly developing rosacea. I know that not all of these things are related but frankly at this point I never know what might be related and what definitely isn't.

Has anyone experienced similar symptoms or does anyone have any idea what the root autoimmune cause might be? I know that it's very likely my SFN (and everything else) will remain idiopathic but I'm so tired of diagnoses of exclusion and I refuse to give up trying, especially as my symptoms may continue to deteriorate.



TLDR; sudden onset SFN in hands and arms at 20, high level c reactive protein, bloodwork otherwise normal, PCOS/IBS/Chronic fatigue, looking for possible root autoimmune cause.

Welcome question. :) I can't help you but perhaps someone else can. :Good-Luck:

Kitt

You are young and it would be wise to get into a supplement program and starting with a naturopath MD or doing a lot of work for yourself. Look at your diet. Todays' foods are so depleted of good essential nutrients and so many are loaded up with sugars and carbs. Speaking here from decades of life and living with plenty of OA mess, too much sugars and carbs in my young life....

Have you ever had a coeliac screen ? might be worth it if you haven’t.

I have been tested and it was negative.

I recently also became aware that I have Erythromelalgia, which shows up in my face and upper arms. I think it must be somewhat related, perhaps with the same root cause as my SFN, as that had an unusual presentation as well, in my hands and arms rather than lower body.

Questions, this information about erythromelalgia may help you.

Erythromelalgia - NORD (National Organization for Rare Disorders)

Thank you for the link, the information is very helpful.

I also have Livedo Reticularis, and combined with the Erythromelalgia I guess whatever underlying autoimmune issue I have has to be neurovascular, which maybe narrows it down a bit but I don't know.

I've also been experiencing higher heart rates lately, even when resting (low 100s), and pretty bad insomnia.

It's been a few years since I had tests so I'm currently trying to go to the doctor and at least get a few blood tests done, confirm rule outs at least. But I currently live in a country where I do not speak the language so I'm trying to figure as much out by myself as I can.

Restorative Sleep is vital to healing and you say you have insomnia. Do you live in a country where homeopathics are used. They are used worldwide and there are a number used for insomnia....Do a search...

Hi,

This sounds so much like B12 deficiency. We have the same symptoms. I have developed SFN almost 3 weeks ago and now it is spreading everywhere. I am starting to get b12 shots tomorrow. Have you checked your levels?