3 Years, New symptoms, Need To Talk

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3 Years, New symptoms, Need To Talk

Postby IUKid613 on July 18th, 2015, 11:50 am

Hello, it has been nearly two years since I have posted on the site. Over that time I have tried to move on and continue my life despite BFS. I have got back into shape, and have been eating great. I really have felt better, but now my symptoms are bringing me back to more anxiety issues. I want to write a few of these new sysmptoms occuring, and would really apppreciate replies on if you can relate to the issues I am having.

New:
I am having vision promblems some days, almost like an outerbody feeling. I am sensitive to light and get blurred vision sometimes.

Very annoying stomach issue. It is not where my stomach hurts, I just feel like a nagging pain throughout it when I am standing for more than 10 minutes. To be honest, it could be the hypersensitivity in my nevers causing me to feel my shirt fibers, but it goes away after I sit down? Strange an Nagging

I have been feeling detached from my arms, say my left arm literally feels like it is much lighter than my right.

My twitches seem to be less to none most days, it has really turned into shooting pains and nerves issue, such as electrical zaps or cold/hot feelings throughout body parts.

Seems I ache more than I used to also, such as after a workout. Even during a workout, my legs feel like they are exhausted.

Pains in my feet that will shoot all the way up my like, very quick but painful, does not happen often.

It seems to me I am getting away from all my twicthes and mainly focused on hyper active nerves and shooting pains all the time. I hate being able to feel my clothing at all times. Some days are better than others. I have been to many doctors and neuroligists and have had MRI's. Everything checks out. The neurolists tell me it will just be annoying...Annoying is not the correct word.

Do you guys believe that along with my BFS that I could also have a issue such as Small fiber neuropothy or something of that nature? Which is why my nerves are so senstive and, to where if I scratch my leg from an itch, i will feel where I touched and minutes later and it will feel like it is burning.

Tried a few different remedies, just thinking maybe a mild anti seisure medicine may help me. I need some relief. The twitching I can deal with, but the pains and stomach issue are becoming to much.

I am ready to get away from the anxiety again, especially being a senior at IU and been in the best shape of my life at 22. Just wish I could cope better with all my new sysmptoms and enjoy my senior year at IU. I will appreciate your replies. I can provide further information when needed.

Thanks.
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Re: 3 Years, New symptoms, Need To Talk

Postby emmie.s on July 18th, 2015, 8:26 pm

I'm so sorry you're experiencing a relapse in your symptoms. I can tell from your post that a lot of it has to do with anxiety. Anxiety makes you hypersensitive to your pains and little weird stuff that most people are able to ignore. Example: Right now, if I focus, I can feel a burning/buzzing in my feet and my right ear feels full. I know that if I had anxiety, I would've noticed that ages ago vs. literally right now.
However, to answer your question, yes a number of things in addition to just pure stress and anxiety can cause your symptoms, such as a virus, small fiber neuropathy, and maybe something like a mild case of something auto-immune related (which is no big deal, just as you said an annoyance). If it is autoimmune, then an anti-inflammatory diet, avoiding the sun, and some ibuprofen might help.
I know how frustrated you must be because you want answers, and I know the feeling of NEEDING and explanation. The truth is, for many of us, there is no real solid answer and no real cure. However, the great majority of us just have annoyances and not a serious life threatening illness, and for that we should thank our lucky stars. I do hope you get answers, and it looks like the doctors have made you run the gamut to exclude anything too serious. Maybe consider asking them to do bloodwork to check your titer levels for an autoimmune disease? I tested positive for the lupus antibody, and once I started treating my symptoms as such (yes, with meds as well) things got a bit better.
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Re: 3 Years, New symptoms, Need To Talk

Postby Yuliasir on July 18th, 2015, 11:39 pm

HI,
first of all, I must admit that I am a bit confused with your list of symptomes becasue I hardly could connect pain in the stomach when standing and hypersensitivity of sensory nerves. Anyway, seems like your pain is postural and therefore you must have a mechanical source of nerve irritation, becasue changing posture removes the pain. "Nagging" pain is usually a description from neurogenic one so really you may have mechanical issues somwhere at the T level (unusual, as usually we have that either lower ot higher - in the beck or back, but who knows? It depend on your posture and on the workouts you do, some powerlifters may have such damages).

Blurred vision is also a vague symptome. I still remember I was talking here to one of the fellows and she was so surprised with the fact that blurred vision in the morning comes from her dry eyes syndrome while I though it is rather obvious :))) What is your blurring, whether it happens at a certain time of the day, is it painful, long-term, transient, et. etc. - it all may be a meaningful thing. Maybe you just have a light-induced optical migrains (causing feeling of TV noise or moire), or maybe you have retinal edema, or maybe just dry eyes or you just started to notice minor ruptures in your vitrous body (everybody have them, I have them since I was a child, it does not affect sight strenght but causes some transient blurring effect. especially if looking at certain pattermed surfaces or at a bright light), etc. etc. Go and check your sight to be sure you do not have significant mechanical problems in your natural optics, and all the rest is usually harmless.

What you describe generally is a typical sensory hypersensitivity - I would not say SFN necessarily as I know this condition could be reversed. A friend of mine had that in her hard times and it took her years to get a relief, but finally she managed to decrease her sensitivity back to almost normal level. Feeling detached from the body sometimes also happens in a pretty stressed people, actually I personally had it. If you still could command your left arm during those episodes, I think it is a good sing that you just have a proprioreception 'hallucinations' caused by stress, and nothing more.
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Re: 3 Years, New symptoms, Need To Talk

Postby pinprick on August 17th, 2015, 7:45 am

Hi

7 years since my last "attack" (Flare up).
Diagnose with SNF (Small Fiber Neuropathy) but ... long nerves have also been "attacked". This explain twitching as per my neurologist.
No mystery ...

New "sensory" symptoms as "electric chocks", "bee stinging sensations", migrant pain, tingling, pins and needed, migrant cold/hot sensations, unpleasant feeling when wearing clothings (they feel rough and some time painful), dry eyes and more ... explained by SFN since all type of sensory fibers are implied.
Legs particularly implied because there is the longest nerve in the body.

Sorry to tell you that.

Auto-immune with unknown etiology ... idiopathic in my case (... or they did not do or did not want to do a lot of research), no diabetes.
May be there is antibodies circulating in the blood that does those "attacks" on nerves because they are doing their job on the bad target (nerve) like trying to introduce a bad key in a lock and it works inadvertently.


No solutions.
Drug: Lyrica can help some. It doesn't do anything for others. Not a miracle.
Other: Removing caffeine (coffee, tea, chocolate) reduce effect of SFN while the defects are still there. Remove anxiety too because it does the same thing as caffeine ... i.e. excitation of the brain connected to impaired nerves and so ... more firing of impaired nerves.
Note: Lyrica can do something if and only if caffeine is removed from the body in my case.

Hope it help.
Idiopathic SFN (head to toes) ... auto-immune related
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