advertisement
Reply
 
Thread Tools Display Modes
Old 07-19-2020, 08:31 AM #1
questions questions is offline
Junior Member
 
Join Date: Jul 2020
Posts: 10
3 yr Member
questions questions is offline
Junior Member
 
Join Date: Jul 2020
Posts: 10
3 yr Member
Default 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.
questions is offline   Reply With QuoteReply With Quote

advertisement
Old 07-19-2020, 10:40 AM #2
Kitt Kitt is offline
Grand Magnate
 
Join Date: Aug 2006
Posts: 4,424
15 yr Member
Kitt Kitt is offline
Grand Magnate
 
Join Date: Aug 2006
Posts: 4,424
15 yr Member
Default

Welcome question. I can't help you but perhaps someone else can.

Kitt
Kitt is offline   Reply With QuoteReply With Quote
Old 07-19-2020, 01:22 PM #3
caroline2 caroline2 is offline
N/A
 
Join Date: May 2015
Location: Santa Monica, CA
Posts: 3,313
8 yr Member
caroline2 caroline2 is offline
N/A
 
Join Date: May 2015
Location: Santa Monica, CA
Posts: 3,313
8 yr Member
Default

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....
caroline2 is offline   Reply With QuoteReply With Quote
Old 07-21-2020, 04:01 AM #4
Silence56 Silence56 is offline
New Member
 
Join Date: Jun 2020
Posts: 5
3 yr Member
Silence56 Silence56 is offline
New Member
 
Join Date: Jun 2020
Posts: 5
3 yr Member
Default

Have you ever had a coeliac screen ? might be worth it if you haven’t.
Silence56 is offline   Reply With QuoteReply With Quote
Old 07-21-2020, 07:19 AM #5
questions questions is offline
Junior Member
 
Join Date: Jul 2020
Posts: 10
3 yr Member
questions questions is offline
Junior Member
 
Join Date: Jul 2020
Posts: 10
3 yr Member
Default

Quote:
Originally Posted by Silence56 View Post
Have you ever had a coeliac screen ? might be worth it if you haven’t.
I have been tested and it was negative.
questions is offline   Reply With QuoteReply With Quote
Old 08-04-2020, 06:25 AM #6
questions questions is offline
Junior Member
 
Join Date: Jul 2020
Posts: 10
3 yr Member
questions questions is offline
Junior Member
 
Join Date: Jul 2020
Posts: 10
3 yr Member
Default

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 is offline   Reply With QuoteReply With Quote
Old 08-04-2020, 07:23 PM #7
kiwi33's Avatar
kiwi33 kiwi33 is offline
Grand Magnate
 
Join Date: Jan 2015
Location: Sydney, Australia.
Posts: 3,093
8 yr Member
kiwi33 kiwi33 is offline
Grand Magnate
kiwi33's Avatar
 
Join Date: Jan 2015
Location: Sydney, Australia.
Posts: 3,093
8 yr Member
Default

Questions, this information about erythromelalgia may help you.

Erythromelalgia - NORD (National Organization for Rare Disorders)
__________________
Knowledge is power.
kiwi33 is offline   Reply With QuoteReply With Quote
Old 08-09-2020, 06:13 AM #8
questions questions is offline
Junior Member
 
Join Date: Jul 2020
Posts: 10
3 yr Member
questions questions is offline
Junior Member
 
Join Date: Jul 2020
Posts: 10
3 yr Member
Default

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.
questions is offline   Reply With QuoteReply With Quote
Old 08-09-2020, 01:16 PM #9
caroline2 caroline2 is offline
N/A
 
Join Date: May 2015
Location: Santa Monica, CA
Posts: 3,313
8 yr Member
caroline2 caroline2 is offline
N/A
 
Join Date: May 2015
Location: Santa Monica, CA
Posts: 3,313
8 yr Member
Default

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...
caroline2 is offline   Reply With QuoteReply With Quote
Old 08-16-2020, 11:33 AM #10
Beste28 Beste28 is offline
New Member
 
Join Date: Aug 2020
Posts: 3
3 yr Member
Beste28 Beste28 is offline
New Member
 
Join Date: Aug 2020
Posts: 3
3 yr Member
Default

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?
Beste28 is offline   Reply With QuoteReply With Quote
Reply

Tags
arms, onset, pain, sfn, symptoms

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Sudden Onset of MG bchgrl Myasthenia Gravis 29 03-10-2019 09:22 AM
C-reactive protein DavidHC Peripheral Neuropathy 7 02-02-2016 09:17 PM
Baseline Plasma C-Reactive Protein Concentrations and Motor Prognosis in Parkinson Di badboy99 Parkinson's Disease 0 08-29-2015 11:14 AM
Baseline C-Reactive Protein Levels and Life Prognosis in Parkinson Disease. badboy99 Parkinson's Disease 0 07-29-2015 10:44 AM
Elevated C-reactive protein BonDon Peripheral Neuropathy 3 11-24-2009 11:57 AM


All times are GMT -5. The time now is 08:42 AM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.