Fibro or Dysautonomia??

[fibrotj]

Fibro or DysAutonomia??

I was Dx with Fibromyalgia 4 yrs ago…but have had “what I thought” were Fibro symptoms since childhood.  However, after a total hysterectomy when I was 25…my symptoms worsened…then became SEVERE with numerous new symptoms, as of 4 yrs ago!!  The more I research…the more I’m convinced that I may have something else.  I’ve been tested for MS, Lupus, SjS, Wegener’s, Lyme, etc…ALL negative…also suspicious of Parkinson’s, etc…  However, I’ve tested positive on 4 ANA Titers…thusfar.   A number of people have suggested that maybe I have DysAutonomia.   ???

These are my list of symptoms:
• Numerous paresthesias (numbness, tingling, pins-&-needles, burning, stabbing, bug biting/crawling, itching, vibrating/buzzing, etc…sensations)
• Fluctuating body temps…freezing/shivering one minute…literally sweating the next (constantly swinging back & forth…wake up soak & wet from sweat at night sometimes…this is NOT menopause…as I had Total hysterectomy at age 25)
• Irregular breathing & heart beat patterns;  continual palpitations
• Feeling faint when I stand up from sitting/laying down (have done this since a child)
• Passing out/feeling faint after a hot shower/bath (have also done this since childhood)…heat intolerant since adulthood – makes me ill/faint/weak
• Severe Anxiety attacks out of nowhere (no reason for them)…that can last for days on end/keeps me up at nights
• Dx with IBS (possibly gastroparesis…according to previous testing)
• Bladder/bowel issues (can’t control bladder…or on occasion, bowels)
• Off-&-on spells of severe chest pains (admitted to ER recently as possible heart attack victim…had all signs…chest pain in center, severe nausea, dizziness, & arm numbness for 24 hrs+)
• PAIN that moves around:  flu-like aching, stabbing/electric-shock like pains
• Severe muscle cramps & stiffness…especially in neck/shoulders & legs
• Severe muscle spasms/contractions:  have had left side of face to “draw up” several times, & now it seems semi-paralyzed;  have severe jaw muscle contractions that lock my jaw/mouth shut
• Muscle weaknesses where sometimes my legs will just go limp…like “noodle legs”…or sometimes I’ll just suddenly drop things, as if my hands/fingers quit working…right-hand wrist sometimes goes limp (although, have had carpel tunnel in right wrist years ago), can hardly open lids anymore
• Vision problems:  goes blurry;  lost center of vision in left eye for 3 months, 2 yrs ago
• Tremors as of 4 yrs ago (head & right hand…but have had all-over body tremors also…have been having frequent, odd “internal tremors” as of lately)
• Have been Dx as Hypoglycemic as a child…but also have severe hypoglycemic symptoms any time I get hurt (even mildly…such as falling, bumping into things, or smashing a finger) or experience sudden stress/trauma
• Horrible balance/coordination issues:  always feel like I’m “falling to the right”…always dropping things, knocking things over, tripping over nothing, etc… (was never like this in younger yrs)
• Cognitive/Memory problems:  can no longer remember anything or recall words/names;  can’t concentrate or multi-task;  have frequent “brain crashes” where my mind completely shuts down for a short duration & I’m completely unaware of surroundings/events till it “comes back online” (people have suggested that maybe I’m having partial/complex seizures?);  can’t calculate; etc…
• Speech/language problems:  stuttering, dyspraxia, dysarthria, dysphasia (all come & go at different times)
• Dysphagia (swallowing problems…food gets backed up into velopharygeal cavity…have to tuck my chin to swallow)
• Diagnosed with Migraine Disorder
• Severe sinus/allergy/asthma issues (had a sinus surgery 7 years ago…that I have YET to heal from)

ANYONE with comments/advice???    Thanks  
~tj

[fibrotj]

Thanks Heiferly!  You are correct...in that I'm assuming that IF I have Dysautonomia (which I believe I do)...it is most assuredly in conjuction with some other disorder...maybe even just the Fibro...as in...maybe I have BOTH!?  IDK?  It's all so confusing!  I just know that supposedly Fibro is NOT supposed to be progressive...however, it seems that my symptoms are.  

My last Rheumy told me (& I didn't realize it until reviewing over some of my medical paperwork today...that she had actually written it into my files)...that I have some type of "Mixed Connective Tissue Disease."  So...I guess that sort of confirms that "Auto-Immune" part...just not very specific.  Thanks...& I'm sure I'll be hanging around...needing more answers for all these bizarre symptoms of mine!  {{hugs}}  ;)
~tj

[Heiferly]

Unfortunately your symptoms don't sound specific to dysautonomia, but rather seem to have overlap with autonomic dysfunction.  As you may have gathered from your reading elsewhere as well as from the responses you've received here from others so far, autonomic dysfunction can often be secondary to or comorbid with other diseases or conditions.  Just as a layperson taking a stab in the dark from looking over your post, I would guess that you are having some level of autonomic dysfunction that is either secondary to or comorbid with some other condition (something autoimmune, perhaps?).  

I will give you the "misery loves company" encouragement that MOST of the people here who have diagnoses still don't have a *complete* picture of their condition yet, per se, and even to get to the place where they are now have had to consult MANY different doctors before getting any answers.  Persistence really is key when you have a complex case like this.  If you have the means to get to a "big name" hospital at some point, definitely go for it.  

You may want to take a look around our health pages (we share with all of neurology, but you'll probably not mind finding the mix of topics there as you have a mix of concerns at any rate):

http://www.medhelp.org/health_pages/list?cid=196

Welcome to our community!
-Heiferly.

[fibrotj]

Thanks for your responses & info.  I'm wanting to see a Doc who could look into this for me...but wasn't sure which specialist would be best (Neuro or Cardiologist?).  I've seen 4 Neuros...because my PCP's & Rheumatologists have suspected MS...have been tested (Brain & C-Spine MRI's, EEG, EMG, Visually-Evoked Potentials)...but everything was negative, with exception of an "artifactual spot" on my C-Spine MRI.  However...I've tried & tried to get another Neuro to redo my C-Spine...but none will.  I've also requested a Spinal Tap numerous times...but NO Spinal Tap ever!!   So...IDK?  

I've even questioned "Chiari Malformations" lately (just to myself)...because of the "nature" of my migraines...in addition to the fact that I have Scoliosis...but wouldn't they have seen this in my MRI's??  I guess I just have to keep pushing for more testing...but that "well has been tapped dry" for a while...at least until we can get health insurance again.  Not sure if that's possible for me.  I've been turned down many times lately!  Thanks so much for y'alls help!  {{hugs}}  ;)
~tj

[beema36]

Hi, The majority of your symptoms could be a list made by me. I have ms, fibromyalgia and was diagnosed with autonomic dysfunction in 2009. Have you been seen by a neurologist? Many of your symptoms sound neurological. MS could be a possibility but I am not a Dr so is just an opinion. Depending on neurologist they can test for dysautonomia although I ended up being diagnosed by an electrophysilogist.
It's sounds like you are having a hard time. My best advice is keep pushing drs for answers. I am sure other here have some advice they can give as there are many knowledgeable people on this site.
Beema

[tkimber]

Hi,
I'm new to the diagnosis myself...so probably can't help much, but can tell you what I have and I have many of the same things. Which area are you located?  Sometimes it is hard to find a doc that can recognize dysautonomia.  I also was diagnosed with fibromyalgia about 12 years ago.  I think it can be part of dysautonomia.  Also there are so many types of dysatuonomia, so it can be hard to pin point that.  I'm in the middle of doing that right now.  Question for you.  Have you had a spinal tap?  Just wondering because of the muscle issues and dropping things.  I just had a one a month ago.  They can show a lot of things.  Now, passing out after a hot shower especially in the summer is pretty typical for me and I have idiopathic autonomic neuropathy.. they think it is autoimmune but still testing.  My doc is at Mayo in Arizona, but my insurance doesn't cover them, so we go when we can afford it.  I also have  something called autonomic crisis, I think some call it hypotension.  I'm not really sure on that...but I sweat instantly, can't talk, can't move my muscles and sometimes vomit and have to go to bathroom right now.  They usually put me in a freezing tub of water and that snaps me back.  It can go on for about 10  minutes to 2 hourse depending on if we can stop what's triggering it, like a car ride, but no stopping meds.  :) I have hypoglycemia also and gastriparesis off and on my whole life.  I have a lot of numbness in hands and legs at night when I sleep. And fluctuating temps. And the worst is the pain in my neck and shoulders but haven't been able to see a lot of people with autonomic neuropathy have this.  But I have it bad along with migraines.  So yeah, I mean I'm not a doctor, but you do have similar situations. So sorry for you.  Have you been to a neuro or cardiologist. It took me almost 20 years to get diagnosed and not until it came on every day did they finally think...hmmm, something might be wrong with this girl. I had grand mal seizures from my blood pressure dropping so low.  I have had to learn to be my own advocate and help myself.  There are several sites with Docs that specialize in this.  Did you look at the Dysatuonomia foundation?  They have a listing as well as something called Dinet. I will try to find those and list them for you.  The girls are really great about knowing this stuff by memory.  Sorry if I wasn't much help.  If you have any more questions.  Just post again, someone will get to them.  A lot of the people on here are just as ill so don't get too discouraged if no one answers you right away.  :) Hang in there.
Tkimber

[fibrotj]

Hello??  Would love some feedback on what people who have been "officially" Dx with Dysautonomia thinks?  Sorry for such a long post...but don't know how else to explain how much of a MESS I'm in!  Do my symptoms "fit" Dysautonomia??  Anyone??  Thanks.
~tj