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Sjogrens Topics => Living With Sjogren's => Topic started by: 1722Mich on April 08, 2014, 06:50:03 AM

Title: Small fiber neuropathy & weakness
Post by: 1722Mich on April 08, 2014, 06:50:03 AM
Just when I think I have this Sjogrens thing figured out it comes up with new ways to affect me.  The latest is small fiber neuropathy that manifests as muscle weakness/fatigue. Just pulling my hair into a ponytail is a challenge some days! I will get it almost all gathered up and then my arms loose all strength & just drop down.  I stand there frustrated, near tears and waiting for the strength to come back so I can try again.  But that's a joke.  It comes back eventually but leaves again even faster.  Every time it happens I wonder "if this is how things are now, what am I going to be like in 5yrs?" That thought just chills me because I am a VERY independent busy person.  My life has always been "go, go go!"  Every time Sjogren's has thrown down the gauntlet I've picked it up with grim determination and pushed on.  This however is so much harder than anything I've faced before.  The path to deciding it was small fiber neuropathy was not an easy road either.  I love my rheumy to bits because he usually listens to me with an open mind no matter how bizzare my complaints have been.  But he fought me on this one.  I am not, nor have I ever been a string bean skinny person.  But just because I'm overweight does not mean I am a lazy person or that I eat everything in sight.  I'm always on the go and if I ate smarter I'm sure it would help the weight issue.  ANYWAY, all that aside.  Suddenly I was having difficulties with stairs...going up and coming down plus I couldn't seem to walk more than a few blocks without feeling as if my legs were going to just collapse.  I wasn't "tired" or huffing & puffing.  It felt to me like muscle failure.  He listened patiently and then said basically I was just out of shape.  Being determined I got on line and searched and searched.  I happened to be in physical therapy at the time for a pinched nerve in my neck and spoke at length with my therapists.  They agreed to help me with strengthening.  During that we discovered that my balance was ridiculously bad.  Then one morning I woke up with the top of my foot totally numb and my reflexes were gone in that leg.  That freaked my therapist out & he sent me to the ER thinking I had Myasthenia Gravis or something.  By the time I drove across town and waited to be seen my numbness remained but the reflexes had returned.  The ER doc basically patted me on the head and treated me like a panicked hypochondriac.  I am an RN and found this beyond irritating.  The muscle weakness gradually got worse and was keeping me from doing a lot of things.  If I pushed and tried to "work through it" I was punished the next day with pain, extreme fatigue and feeling like I had a fever or the flu.  A few rounds of that convinced me that "working through it" was dumb.  More in next post
Title: Re: Small fiber neuropathy & weakness
Post by: 1722Mich on April 08, 2014, 06:51:41 AM
Continued from previous post:  So I went back to the rheumy and insisted he send me to a neurologist.  He did finally but all my tests came back normal.  So my rheumy drew a bucket of blood and I was fully x-rayed and had full body MRI scans.  Everything came back normal so we went back to "you are just out of shape".  I put up with that for a while before I went back and demanded to see a neuromuscular specialist.  In the meanwhile my rheumy went to a conference and heard case history of a patient in Florida who had similiar complaints to mine.  Now all of a sudden he's listening to me and sends me to the neurmuscular specialist happily.  After more blood work and another round of painful EMG's I am told it is small fiber neuropathy.  Lucky me.  Nothing to be done about it sadly.  I chose to go off the plaquenil because it can cause muscle weakness and I do believe I got markedly better after I finally got it all out of my system.  Please note that I DO NOT recommend quitting plaquenil cold turkey!!!  I had an immediate and NASTY flare that lasted several days!  Pain, fever, muscle pain and extreme fatigue.  It was like suffering from the worst case of the flu I've ever had plus feeling like I'd been thrown off a building and repeatedly run over by a truck.  I've been off plaquenil since last fall and really the only consequence is I'm dryer than the sahara but I've always been super dry.  I've got a bit more fatigue as well but when you are tired every day you seem to get used to that.  The muscle weakness fluctuates and some days I can almost forget its there.  Those days are fewer and far between though.  Some days I'm terrified of going down stairs or bleachers because I just know that one day my legs are just going to give and I'm going to take a tumble.  I'm 46 years old and yet I have the mind set of an 80 year old when it comes to climbing....even curbs are scary some days!  I don't understand why this neuropathy is manifesting this way but I am also rather thankful that it didn't decide to go the route of being painful.  I do have some weird sensitivity issues but nothing like what I've read from other's posts.  I'm also thankful to read that I am not alone in this.  Hearing that other people are going through the same thing makes it so much easier to bear.  I've always said that I can handle whatever as long as I know I'm not crazy.  Too often as I've gone down this Sjogren's road medical professionals have suggested I'm crazy.  Time & testing eventually proved that I'm just unique and have been handed some weird cards to play.  Thanks for listening guys!  I appreciate all your support and would love to hear from other's who have this same manifestation.  I'd love to hear if you all have any tips that might help deal with this.

Title: Re: Small fiber neuropathy & weakness
Post by: lolo1979 on April 08, 2014, 07:37:59 AM
I am not convinced this symptom is being caused by SFN.  Did any of your docs look into Myositis?  Did they check your muscle enzymes? Did they check autoantibodies for Myasthenia Gravis?

Don't get me wrong, I know most of us have small fiber neuropathy. I just question whether that is really the cause of your muscle weakness. I guess if you went to a neuromuscular specialist and that was his diagnosis, you can maybe believe it. But I would demand some of those other things be checked out before accepting that it's SFN.

Just my opinion.
Title: Re: Small fiber neuropathy & weakness
Post by: Ripvanann on April 08, 2014, 08:06:18 AM
Dear Mich,

lolo has a good point there. I know that they've done a lot of tests and "drew a bucket of blood" but sometimes they're not the right tests. The other thing is, AI's (Autoimmune diseases) can be very elusive in testing. Then there's endocrine issues which can cause almost all of what you're describing.  Have you had all of your thyroid stuff checked, calcium, cortisol levels?

I have both SFN and Autononomic Neuropathy, but also have endocrine issues. I really feel as though the weakness you are describing comes from the lack of cortisol,  not the SFN. There are times when I can't shampoo my hair, nor stand in the shower. I am just too weak. Other times, I am just fine. Now this could be an SJS flare of the SFN, but this does not make sense and here's why: The neuropathy damage is done. The inflamtion may be worse and cause more fatigue,  numbness, etc. but that fiber damage, once done, is not known to regenerate.  However,  when it's caused by cortisol levels not feeding, literally every organ, nerve fiber... everything,  anything can happen, including all that you talked about. I once had  the entire right side of my body go numb, like a stroke, because of lack of cortisol.

In short, as frustrating as it is, there could be a myriad of things you're looking at. However,  on the bright side, I do believe that you *should* see improvement and/or a halting of your symptoms once you do begin to treat what's going on. Stress, is always, always a factor. So try to calm down and tell yourself it will be okay.

Can you list all of your symptoms and  what you have been dianosed with and what you have been tested for/results?This will help. You have come to a great place. We're here for you.

Grace and peace,


Title: Re: Small fiber neuropathy & weakness
Post by: finallyadx on April 08, 2014, 08:06:53 AM
Hello and welcome.  So sorry to hear you are having such difficulties and that no-one seems to be taking you seriously.

I would agree with lolo - have them check for myasthenia gravis, myositis as well as MS.  I have neuropathy and muscle weakness at times but it does not sound to the extent it sounds you are having. 

I would demand more blood tests until they give you a definitive answer.

Hoping you get some much needed and deserved answers.

Not knowing is the worst (in my opinion).  If they find out there is something else wrong with you, there are treatments or medications that at least take some of the symptoms away.

Keep us posted.

Sending positive thoughts your way.
Title: Re: Small fiber neuropathy & weakness
Post by: 1722Mich on April 08, 2014, 09:30:16 AM
Thanks all for the support! To answer some re blood testing...yes they've checked the myositis panels, for MS and for myasthenia gravis.  Every test was normal.  My CPK levels remain normal.  As for I've not had cortisol levels drawn.  I had to fight to get my thyroid treated.  My level was under 5 so I got the royal brush off by my pcp.  I had symptoms of low thyroid...brain fog, fatigue, constipation, always feeling cold, dryer than dry skin, ratty thinning hair & brows.  I think initially my TSH was like 3.55.  I scheduled myself with an endocrinologist and she agreed I needed treatment.  She put me on levothyroxine and I immediately got better.  After the second blood test showed just a little improvement in the numbers I asked to have the dose increased.  I now take 75mcg and am feeling a whole bunch better!

My Sjogrens has never acted "normal".  I always seem to manifest the weird or the obscure "rare" symptoms.  I have an extremely dry mouth but my eyes have been less bothersome.  I cannot produce tears when I cry but I seldom need artificial wetness to get me through the day.  Since stopping plaquenil I've had drier eyes but still not needing drops very often.  I also have cutaneous lupus and am VERY sun sensitive.  Just a short time in the sun and it will trigger a flare.  Last weekend I went to an auction outdoors and got a bit of sun....usually I stay under an umbrella and keep my skin covered.  I didn't even think about it.  It was just a few hours of weak spring sunshine.  By early evening I felt as if I had the flu...body aches, extreme fatigue and had the lovely butterfly rash on my face.

I have looked at other potential causes for my weakness but nothing fits.  Believe me I have looked and looked via the net and going to docs.  The neuromuscular specialist assures me that this small fiber neuropathy while annoying is essentially harmless because there is no "permanent" damage occuring.
Title: Re: Small fiber neuropathy & weakness
Post by: daisymae on April 08, 2014, 09:35:55 AM
I agree with the others. This sounds like it could be polymyositis or myasthenia gravis. Did they do muscle biopsy? Sometimes the blood work for myasthenia doesn't indicate myasthenia in about 20% of people.

I really hope you find out for sure. Sending you positive thoughts.
Title: Re: Small fiber neuropathy & weakness
Post by: 1722Mich on April 08, 2014, 09:51:21 AM
Just thought of something else...I have patchy numbness that sometimes comes/goes.  It usually manifests on the tops of my feet or on my legs.  It feels as if the area has been shot full of novacaine.  This will last anywhere from a few hours to a few days.  I'm also sometimes hypersensitive to things.  For example, my husband will poke me in the arm to get my attention and it will really hurt for several if he's jammed me really, really hard when in fact he barely touched me.  At night I have a terrible time getting to sleep because although I have extremely soft sheets they will be insanely irritating to my feet. Usually I stick my feet out from under the covers and hang them over the edge of the bed to avoid any stimulation. Sometimes this affects my entire body and makes me want to scream in frustration. I think my ability to "feel" things is warped sometimes, like my body is injected with novacaine but not to the point of numbness but rather sensation is blunted.  Other times I can feel everything too much.  Its just weird.  It is amazing what a body can learn to put up with and consider "normal"!

I get a lot of stiffness in my muscles. If I sit very long, especially if it is a little chilly, it seems as if I'm 80 years old.  I have difficulty walking/moving for a few minutes til things "loosen" back up.  This can be downright painful at times.  I swear my 46 year old body has been body snatched and replaced with an 80 yr old one!

All along I've wondered if my complaints weren't something else but everywhere I go I hit dead ends. (Most specialists I've seen treat me like I'm crazy for asking to be tested for these "obscure" diseases.  I promise I am NOT crazy & I do NOT want to be sick.  Frankly I want it all to just go AWAY and let me be NORMAL!!)  My rheumy keeps telling me that its the Sjogrens and that it can act all kinds of weird when it decides to attack the nerves.  I have a follow up with him tomorrow to discuss where we go from here.  Not willing to go back to the plaquenil because I think it was building a toxicity despite the fact I was on an appropriate dose.  Plus I just don't miss it much and so it couldn't have been doing me much good if I don't miss it.
Title: Re: Small fiber neuropathy & weakness
Post by: 1722Mich on April 08, 2014, 10:01:52 AM
No, I've never had a muscle biopsy. They tell me there is no point to it since the NCV and blood sampling were all negative.  My CPK is extremely normal so they say it is not muscle damage.  They tell me I can have a skin biopsy to prove the small fiber neuropathy but that the treatment will be the same.  They've offered gabepentin for "pain" relief but honestly I can live with the pain I have.  I took gabepentin once when I had a pinched nerve. It had some scary side effects that I will NOT repeat.  My rheumy has mentioned steroids as a possibility if I keep complaining but that the weight gain will only add to my current weight issue.  I personally don't want to do the steroids because I've taken them before and didn't like the side effects of those either....insomnia, terrible stomach upset and the worst was actually feeling "normal" for a short period of time.  When the steroids were tapered off and my symptoms came back it was extremely depressing.  I accept I am not normal and would rather not be reminded what "normal" feels like. It messes with my ability to cope with my "reality".

I want to say that I REALLY, REALLY appreciate you all taking the time to reply back.  It is so incredibly nice to be able to talk to someone that "gets" this.  Maybe it sounds silly but I feel less alone now. It's really hard sometimes living with an invisible illness.  It's hard to describe how it feels to someone who isn't going through it too.  Its hard to try so hard every day to maintain "normal" and keep going.  Talking to all of you lets some of that negative energy out and gives me a real boost!  Thanks all!!!!!
Title: Re: Small fiber neuropathy & weakness
Post by: Lilybeez on April 08, 2014, 11:29:26 AM
Hi I'm new with this and you all sound very knowledgeable about this stuff, especially about these other diseases. But I'm a lot like Mich. I'm always coming up with strange stuff. My doctors all call me " unique" or "special"  because I never fit the diagnoses or I have to go thru a ton of meds to find something that works etc. Or I have really strange symptoms. It was my neurologist that diagnosed my sjogrens. Anyway Mich. This may sound weird but have u ever been tested for food allergies? I know u r thinking How can something so simple could not possibly cause so much havoc, but I'm intolerant to dairy casein and lactose as well as wheat. When I eat stuff I shouldn't either by accident or design my heart races I feel like I want to crawl out of my skin! Everything that touches me is too much. Like I need to shiver but can't. I get severe muscle weakness, fatigue, brain fog. Sometimes I get night sweats or chills. I know this sounds like the sjogrens and maybe the allergies just make my sjogrens worse but, I always get stuff like this when I am exposed to my allergens. Otherwise unless I am overtired or sick I don't get the muscle weakness or the other symptoms for the most part.

Anyway good luck from one unique person to another I really hope find some relief!
Title: Re: Small fiber neuropathy & weakness
Post by: 1722Mich on April 08, 2014, 11:40:27 AM
Lillybeez....Food allergies would not surprise me.  My kids are milk protein intolerant so I suppose it had to have come from somewhere.  I really don't do much dairy because I've noted (in the past 5yrs or so) it does not seem to digest properly for me anymore.  It tends to just sit in my stomach like a rock and makes me feel bloated & miserable.  I also sometimes note that when we go to restaurants I will feel ill afterwards (what I eat doesn't seem to matter).  I will either feel bloated and overfull...even if I eat a very small portion.  Usually this is with with a high protein/heavy meal but not always.  It takes very little to make me feel full. Its almost a family joke because I am not a thin person and I eat very small portions.  My family thinks its odd that I eat so little and declare myself full.  I think most 8 year olds eat more than I do at a sitting.  I also note that sometimes restaurant food will put my GI tract into extreme fast forward and things just seem to "run" through me.  Once it's run its course I go back to feeling fine.  As a result I am very picky about what I eat when we are out.  I don't notice any flare ups of my other sjogrens complaints though with any foods unless all these GI complaints are yet another manifestation.