bellgirl

I just had tendonitis in my right arm, which traveled to my shoulder, but after taking Nsaids, which aren't recommended for us, and a muscle relaxant, when it became really bad, I still have slight pain in my elbow, and am unable to lift heavy things now. I had it for about a month...I don't have joint issues or EDS, but am equivocal for scleroderma. I need to do more research on this, but someone said something about it being a chronic problem. Interestingly enough in October, I had Keflex for a UTI, but that's not too recent to be connected; my husband has had some bad cases of it in his shoulder and recently in his leg, but he had been doing some pretty hard labor, building a retaining wall across the front of our home to prevent erosion. We live on the side of the mountain. He doesn't have Dysautonomia, but he does have really bad Psoriasis...autoimmune...hmm

I stay at home in my PJ's, relax, and don't overexert myself. I spend my time on the computer, researching, helping others (which keeps my mind off me), DINET, Facebook, Prayer, Bible study, reading, drinking plenty of fluids, eating only small amounts, and resting, but never napping, as that seems to wreak havoc with my sleep rhythms, especially with my sleep apnea at night.

Rama and Issie...I find it interesting that most with this illness have some sort of connective tissue disorders, as well, autoimmune and inherited. My ANS doctor told me that I could stay at that level, and be fine, but I'm at 115, and 120 is positive, so they need to keep an eye on it, because systemic scleroderma isn't good, which is what this test was for... SLE-70. I'm trying to just live my life the best I can, and not spend my whole life in the doctor's office...lol

This is totally off topic, but after reading and watching videos, which were very interesting, btw, thank you for the research,(I was negative for lymes and syphilis), I found that funny, that my neurologist tested me for syphilis, since my husband after all these years should have been symptomatic, also), I like Relax86's attitude, and Issies, too. I'm just trying to do the best I can with medication, diet, and supplements after way too many years going undiagnosed. I'm no longer tachycardic, unless I'm exercising, which is so much better, and my D3 is up from 25 to 45; I have several new diagnoses, equivocal for scleroderma, I guess it depends on the lab, although these were sent to Birmingham at UAB, so I suppose I'm between negative/positive, which I found rather funny since this same rheumatologist said the same thing to me 14 years previously. I'm atypical and unconventional in everything I used to do, anyway, including taking care of chronically ill children, scuba diving, skiing and I went mountain climbing once, which was enough...lol. My next stop will be the endocrinologist, but I'm not in a hurry, can you tell. I'm doing so much better than I was a year and a half ago in many ways. I can drive short distances, without running into curbs, and wrecking my car, which is good, I exercise on the elliptical at the YMCA regularly, and my vision still waxes and wanes. I expend my energy wisely; I actually went para sailing and took a sunset sail with zofran this past summer with my husband of 30 years. We all have our days....I enjoy watching the birds and the wildlife in my backyard; just saw a buck running wildly; I sing in the choir at church, help others with dysautonomia on a Face book site that's private, go to prayer for my grown sons, one married, and attend fibro meetings once a month to help others medically (retired RN), and I'm about to take a trip to see my sister and her two new twin grandbabies, my nieces' newborns. I still research on occasion, too, but my life has been full...

Racer, I live in the woods, which is a wildlife sanctuary!! I love watching and taking photos, as well. I just received a bird feeder for my birthday, and since the weather has turned considerably warmer, too, I cleaned out my bird bath/fountain, which they love!! I have deer in my backyard, as well, and even photographed an armadillo, once!!

There is definitely a connection....all the weirdness health wise for 13 years before diagnosis now makes sense!!

That actually sounds like Multiple Systems Atrophy, or Pure Autonomic Failure with Parkinson's to me, which are both forms of dysautonomia, but more severe. You may want to gather information either from DINET, this site, or Google National Institute of Neurological Sciences.

Naomi, I had ear surgery, because I had a malfunctioning eustachian tube after a virus, had vestibular neuritis twice with horrible vertigo, so I first went to an ENT in Birmingham, Dr. Pappas Jr., who did a thesis on Autonomic Vertigo, three years later, when I could no longer stand the dizziness!! He's the one who sent me to the Autonomic Disorder Center of Alabama, where I was diagnosed. He knew immediately what was wrong with me. I found his father, senior, on the internet with testimonials written about him. Had every ear test, known to man, and I didn't have Meniere's thank goodness, but he said my results were strange....lol

I used to have Vertigo/Dizziness as my all time worst symptom, and yes, I believe that I still run into things, misjudge door ways, inanimate objects and people all the time, because of this. I used to love to swing, but not so much anymore. If I look to the side, I still have the propensity to fall sideways, as well. I still have trouble in the car also, becoming motion sick, even being on treatment, so if it's a long trip, I take zofran.

Yes, barometric pressure sets me off, too, and my Fibromyalgia doctor said the same

So sorry about the loss of your baby. I lost twins, but have two healthy sons. Your symptoms seem pretty normal for us though, so I wouldn't get overly concerned about this. I would suggest to go to a rheumatologist and possibly an endocrinologist, too. Your hormones being skewed, certainly doesn't help matters either, and that can cause emotional and physical trouble, as well. Make sure they also do testing for MS, as well, at the neurologist. After I had a virus, I had a lot of weakness on my right side, but that has gone away. Any time you have your arms up too long, it can set off your tachycardia, and it is not unusual for your arm to become weak, numb or tingly, since we also tend to have low blood volume. Drink plenty of fluids....

Thanks guys...I appreciate your concern and sentiment. It means a lot to me, that you care...I do miss her terribly right now, and she will always have a special place in my heart! To better days☼....Kim

Just wanted to let you guys know that my Windy girl died on Saturday, but I still went to church on Sunday to sing praises, my son came over for dinner, and I just had a friend visit today!! It's been hard, and I am sad, but God is sustaining me through it Thanks for the support. I was grateful to have her 8 and a half years, she was a rescue; she had completely stopped eating, even chicken and rice, and organic hamburger, and her breathing was so labored, she could hardly stand up, and she was awake on and off 2 nights prior to bringing her to the vet. I did every thing I could for her, and she is no longer suffering...Thanks guys

Yah!! Singing praises is what sustains me

Prayers for you, too, Mydoggielovesme2!!

Thanks Marsha....I'm just hoping she waits until after our birthdays!! I've already mourned her loss, because she is no longer the same. Senile and grumpy at times, so it will be easier to let her go!! I'm fighting a cold today, so I'll be home all day today, but yesterday, I was able to sing in choir practice, open many wonderful gifts, and go out to eat!! I even got to spend time with my one son that still lives close. He came to dinner with my husband and I. Have a blessed Valentine's day!! Much love, Kim

My dog is dying, as well; prayers for you to know when the right time is. I'm hoping mine goes in her sleep. It's my birthday today, and my son's tomorrow, so I'm hoping she waits a few for our sake. It is very hard to let them go. I held my 18 years old cat in my arms until he passed on....

All I know is that cardiovascular exercise is so important, and the elliptical has helped me, immensely. I started out on the stationary bike. Glad to see that you are also working out, Green, and I do believe it is imperative to our health, whether we feel like doing it or not. Fluid loading is important before, during and after, too!! Always check with your doctor before starting any regime, though.

I also have this on my arms and legs, and it is most often found in places that the sun shines on...☼. It is usually due the lack of melanin of the skin in that area, and it is probably vitiligo, as Issie, also stated. Mine are spots, not splatters, but if you look it up, there are different kinds; there are several things they believe it can be related to including autoimmunity, but there are other possible causes including viral, neural causes, stressful events, a extreme case of sunburn or chemical causes, as well.

Glad for you Rich, but sad at the same time...This is what I've found out lately for myself. I'm equivocal for SLE-70 (systemic scleroderma), 115, and 120 is positive, and I also have Fibromyalgia. I've never been tested for Small Fiber Neuropathy, but maybe I should do so also!

Being hypovolemic, and having low blood pressure, could also be a factor. When did you have your surgery? I would give it some time and talk with your doctor. I have Mitral Valve Prolapse, too, and always thought it was related to that, too! It is worse in the cold weather for me, so it could have something to do with vasoconstriction, too.

I've been helping on another two sites that I have asked to be a part of Chaos, one is a private dysautonomia site on Facebook, and the other is a Fibromyalgia group in my area., too, so I stay rather busy. I'm also doing better on my meds and not spending as much time on line; trying to get out more. I just became a great Aunt to twin boys, too!! Haven't forgotten you guys, and always appreciate all the medical knowledge on this site!!

I've been taking Losartan for about 12 years now, and it's been working well for me. I now am on the highest dose 100mg HCT, which is a small amount of Hydrochlorothiazide, 12.5 mg because of swelling in my ankles. I also now take a beta blocker, Bystolic (Nebivolol), 5mg. for my tachycardia, which according to some Pharmacologic Genotyping I had done, I should be very sensitive to this medication. I actually half the Bystolic and take half in the morning and half at bedtime. I take the Losartan in the morning, after getting angioedema with Lisinopril after taking for several years. I also have a Mitral Valve Prolapse, and did have PVC's daily before taking the Bystolic. Now I seldom have any arrhythmias on these meds. I'm on 5 meds and many supplements, which are listed below. My doctor says I have Pure Autonomic Failure. I've always thought I am more hyperaderenergic- subtype, though. I'm not a doctor, but a retired RN, and have done a lot of research, and I really think I fit that mold, if there is one!

I also take Klonopin .5mg at bedtime, at first for my awful tachy that woke me up at night, but I also have sleep apnea; then my doctor gave me a half tab in the morning, too,because of my rigidity in my jaw, so it takes the edge off in the morning, so I can get up and start moving, too. I also have been diagnosed with Fibromyalgia, too, so I'm on Neurontin for that, but they both do not affect the same pathways of the brain from what I understand chemically, so I'm fine with both of them...

I go to my neuro in March, and I will definitely ask for an MRI of my spine!! I've always wanted one....Thanks Katybug . Claire, they can measure the pressure of spinal fluid through a spinal tap, btw.