nik1980

I am prescribed a low dose of adderall for cfs as well as fatigue associated with Dysautonomia.  It has been a life saver for me.  I too am currently fighting for insurance coverage because they only approve adderall for ADHD, narcolepsy, and binge eating disorder.  I may have pissed them off when I asked them if they purported to know more than my world renowned doctor who prescribed the medication. 

I FEEL THE SAME WAY!!!  I am still working full time at a high stress job and have to fight to be at work and then have nothing left for home and family.  Every time I think I get a hold of this thing emotionally, I break.  This happened this weekend.  Looking around my house at all the stuff that needs done and can't do it because of no energy and feeling awful.  It has been almost a year since I was diagnosed.  I think Pistol said it best.  We have to overcompensate and have nothing left.  I am not sure of the solution for me either.  You are not alone though.

Thank you all for your kind responses.  It is comforting to have people who actually understand what the h*** I am going through.

Does anyone else have leg pain.  This is new for me.  It is at the bottom of my feet (literally, the bloody bottom of my feet) all the way up my legs.  It is so painful.  Any thoughts?

One of my worst symptoms is chronic nausea.  No one quite understands how debilitating it can be.  Try saltine crackers and 7up or sprite if you can handle carbonation (I have IC so I can't take it anymore).  I also use IBGARD which is a peppermint capsule.  It is pricey but the other ones I tried gave me heartburn. As for weight gain I have been making a smoothie.  It contains ice, lactose free milk, ground oatmeal, peanut butter and some clean protein powder.  It has really helped my weight.  It is pricey but the other ones I tried gave me heartburn.  Most important, you are not alone!!!!

I was wondering if anyone has been to the MAYO's autonomic center.  I am set to go next week and was hoping to get some ideas of what to expect.  I am scheduled for sweat test and an autonomic reflex test.  Will they schedule more if needed?  I have horrible stomach and nausea issues and there are not tests set up for that.  Thanks in advance for any thoughts on this.

Alien Hands

Oh yeah...my daughter calls it "alien hands" because some of my fingers turn bright white.  It is also painful.  I have been doubling up on gloves and use Hot Hands to help as well.  

I developed my most serious symptoms which led to my diagnosis following a root canal.  Any trauma to any part of your body can cause elevation in symptoms or new symptoms.  Same thing happened to my mother, who has another form of dysautonomia.

Lisa,

Do not apologize for being negative or needing to vent.  This is the place to do it because most of the world has no idea what we go through.  I too suffer from GI issues.  Most people do not understand how debilitating it can be or how bad it makes you feel.  Most people don't understand just how crappy we feel on a daily basis and that in the midst of feeling crappy, we are still working, trying to be spouses or parents, and trying to maintain a household.  Ever day is a battle.  But know that I understand.  Know that you are not alone.  And remember, not only do we deal with the physical aspects of the disease but the emotional aspect of having a chronic illness and the worry about what the next day brings.  Hugs to you and feel free to contact me if you ever need to chat.

GO TO SPECIALIST ,although you may need to wait (I am still waiting for Mayo Clinic). Generally, doctors do not have any idea what dysautonomia is and what to do with it.  Not necessarily their fault, but it is what it is with this crazy disease.  I was lucky in that the neuro who ruled out MS had heard of dysautonomia and sent the referral to MAYO for me.  He freely admitted that it was not his speciality and wanted to get me to someone who specializes but he recognized the symptoms thankfully. The problem is is that the specialists are few and far between.  I was able to get into Dr. Grubb's APN, Bev, who was fantastic.   As Dr. Grubb has a year wait I did not hesitate to see Bev.  I am still on the wait list at Mayo to narrow down the diagnosis but Bev was able to diagnosis and start me on some meds.  

I am in Peoria

I was wondering if anyone is located in Illinois?  I am hoping to talk to someone in the State and hopefully get some leads on doctors who are knowledgeable Dysautonomia

My mom is a patient of Dr. Grubb/Beverly so I went to see Beverly Karabin at University of Toledo Medical College (eight hours away from me) and she diagnosed Dysautonomia.   She believes that I have POTS but did not to run all the testing as I am on wait list for MAYO and that is essentially a "one stop shop".  

I have never heart of kefir.  Where do you buy it?

As to salt I am taking Saltstick Vitassim per Bev's recommendation.  They don't hurt my belly so that is a plus.

Thank you for your kind words, Pistol.  I am trying different meds right now and am feeling better in some ways but, as you know, every day is different! I have zofran and have found it effective.  I also use IB Guard peppermint pills.  IT IS PRICEY but it works.

Hello everyone.  I have finally been diagnosed with Dysautonomia in September after years of being diagnosed with multiple random health issues (overactive bladder, IBS, Anxiety).  It was the most validating moment to hear that I am actually "sick" and not just living with a bunch of stuff caused by "anxiety".  However, now that the relief of having a diagnosis has subsided, I am feeling scared and overwhelmed.

I am coming to the realization that, for the rest of my life, I will have fatigue, stomach issues, bladder issues, dizziness and a bunch of other crappy symptoms that this disease causes.  How have all of you handled this?  Any words of advise?  I would especially love some thoughts on dealing with chronic nausea.  

Thank you all for your time.