fitnesskelly

Food allergies and intolerances manifest in various ways. For me, gluten cause immediate and bad reflux. Sounds to me that it might manifest in a form or severe orthostatic hypotension for you. Even the best tests for celiac/gluten allergy are known not to be very good. The best judge of if you have an allergy or intolerance is your reaction to eating the offending food.

Finally trying Midodrine "as needed" for symptoms. What should I expect (side effects, how long I have to take it before it has an effect, etc.)? So far, I've tried it the last 2 days (just one 2.5mg dose a day) and haven't noticed much difference. Today symptoms are minimal, so I'm going without.

I get one every year and have never had a problem. My husband usually does not get one and seems to do fine as well. It definitely is a personal choice. I've always been the type to pick up anything and everything going around, that's why I do it.

Get copies of your records - tests, lab work, everything - and get a new doc. Maybe be cautious what you tell the new doc - don't lie about your history, but stick to the point of why you are there to see them...current symptoms, etc. There are good doctors out there, but there are also doctors influenced by their biases and it's hard to get them to see around those biases. At 20, I had severe pancreatitis and the gastro immediately wrote me off as a college kid who drank too much, meanwhile I didn't drink. I also agree with docs not knowing much about dysautonomia. I had my first cardiology appt. last week and it was rather disappointing, but doc did admit that most don't know much about dysautonomia yet and I appreciated that he said he doesn't really know much about it (I'm in Ohio and doc suggested Dr Grubb or the Cleveland Clinic for a better diagnosis). Hang in there. It's tough. I was so bad off in February of this year that I thought I might be dying. It's taken this long of seeing docs and specialists to narrow things down to some form of dysautonomia.

Most of the study focuses on high BP, but they did touch on low BP, which I found interesting (I'd like to find the actual study text to read): "Too-low blood pressure, fainting episodes and more worrisome, kidney problems were 1 percent to 2 percent higher in the lower pressure group. Yet falls that cause injury due to lightheadedness were not more common, as had been feared especially for older people. The risks were considered well worth the benefits of a lower risk of heart trouble and death." https://www.yahoo.com/health/how-low-should-you-go-big-study-sheds-light-on-202606819.html How many of you have kidney problems due to low BP?

I have a very strong reaction to odors, esp perfumes. I had to get up and move the other day at the doc's office. I can smell stuff that no one else in the room can smell. It's like a superpower that I hate having.

1) If I suspect I have MCAS, what kind of self-treatment could I try to see if things improve (or medication I could ask my doc to try)? Obviously antihistamines (which I take already...I can NOT go off them or I'm miserable). I've also read diet is important (I seem to do ok with foods like homemade raw sauerkraut, but something like a few sips of wine makes me feel terrible - far more than if I drank any other kind of alcohol, although all alcohol bothers me these days). 2) Do any of you wear contact lenses and feel you are "allergic" to them? I can only tolerate a few hours of wear and my eyes start itching badly, even after I take them out. I wear the monthly ones and change them often. I didn't used to have that problem with contacts.

Yes, pretty much all my joints, esp. knees, hips and neck. They've been like that for years. I always figured it was because I've been so athletic and into risky sports, so it was wear and tear on my joints from being so hard on myself (the neck cracking comes from an accident).

I got your message on your friend...I feel fantastic when I exercise. I usually feel pretty good immediately after. Depending on what I do and what else I have going on, I can feel pretty tired after. I definitely don't have the energy I used to. I used to be able to do a very hard workout, then make dinner and do stuff around the house. I now need to prioritize and decide if I'm going to exercise today or run errands/do stuff around the house. I don't have the energy to do both.

I feel fine doing cardio, and at times I do some pretty hard cardio like mountain biking. I might be tired after, but not completely wiped out. However, if I try to do any weight lifting, even simple body weight exercises like push-ups, I suffer bad pain for a week. In the past, my body was very used to weight lifting and pushing around some pretty heavy weights for my size. The pain I now suffer is far worse than delayed onset muscle soreness. Most of what I see with dysautonomia is fatigue after cardio. Wondering if anyone has the seemingly unique symptoms I do (cardio tolerance, but weight lifting intolerance)?

Sure ANCY! One minute my eyes will be fine, the next minute they will either itch like crazy or will start stinging and burning (usually one eye is affected at a time). I will look in the mirror to see if anything is stuck in the eye(s) and will see that they are bloodshot and yellow (maybe the combo of normal eye whites and bloodshot?). Last time it happened, I also noticed a swollen bump on my eye. I just happened to have some medication to treat conjunctivitis in the house and I use that and the problem usually clears within a day (maybe a coincidence and time clears the problem, not the medication). It happens randomly with no warning. We've invested in a lot of hypoallergenic stuff for the home, like latex bedding and organic cotton sheets (mostly because I've always had pretty bad allergies). I do own cats, but have owned cats all my life and never had a problem with them - the eye problems just started happening this year! I haven't talked to my eye doc about it...I guess I should. I also happen to have eye floaters in my right eye that go from almost invisible to bad and extremely visible. That one makes no sense to me either. Seems like they would be constant.

Thanks! It was suggested about 10 years ago that I might have the same condition, but it wasn't doctors who made the suggestion, it was a group of friends who worked in a hospital (several were nurses). Do you know how she was diagnosed? On EDS, I am somewhat flexible (I could probably pass the "test" for flexibility in certain joints), but I've never had a dislocation and I read that EDS patients have frequent dislocations. So I guess I feel that doesn't fit me. I will bring both up to my family doc and see what he says (he's a really smart and up on the latest education guy).

I haven't had the eye issues that you've had, but I do have eye symptoms. Just this year, I will get occasional very inflamed eyes, almost like a sudden extreme allergy response without any rhyme or reason (I thought maybe seasonal allergies, but it's happened at times when pollen is low). Also, I can barely tolerate contact lenses anymore.

They ran an EKG which was normal except bradycardia (expected). They don't think it's POTS since I don't have tachycardia. They said there's no such thing as too low BP (mine isn't low low anyway, more like 100/70). They basically said I have some form of dysautonomia and they are on the fence about doing a TTT as the treatment will be the same regardless. It was mentioned that it probably comes from a vascular dysfunction and I'm pretty sure they were saying that the vascular dysfunction was probably due to being an athlete and being muscular. So I guess there is such a thing as working out too much, although I've lost muscle tone over recent years and have only gotten worse. So the treatment is basically what I have been doing - compression, salt, small meals and midodrine as needed (haven't tried that yet, how do I know when I need it?). They asked if I had tried any of the antidepressants and I said no because of the side effects, but I think I once tried Wellbutrin (discontinued right before changing health happened) and I remember that the side effects weren't too bad (can't recall if it causes insomnia...that's usually the deal breaker with those types of drugs since I have plenty of trouble sleeping already). There must have been a reason why I decided to quit Wellbutrin after a few months. Sigh.

I used to work in HR. They can't legally fire you for having a disability. Now they could make another excuse to get rid of you, like poor performance, and "get away with it". If they are a good employer, they will listen and work with you on it.

Around 50, give or take 5 BPM.

I get the fake fevers a lot (feel feverish, but normal temp). However, i get real fevers too, but I have to be pretty sick. Had the flu in February (which I later found out was actually Listeria) and I had a fever of 102.5. I can sympathize with feeling sick lately without having the actual illness. I've felt for weeks like I have a mild sinus infection, but I checked out fine at the doc's office. I think it's all part of a flare that's lasting weeks. Have you all had your thyroid checked? Low temp is a sign of hypothyroid.

I can do the occasional hard cider because it's gluten free and so low in alcohol. It does cause me symptoms, but I don't feel horrible with one. All other alcohol, esp. wine makes me feel horrible, so I just avoid it. Even a couple sips of my husbands wine will make me feel horrible. I have yet to get a diagnosis, but I'm thinking it's either MCAS or having been on almost a year of antibiotics for possible Lyme that have caused this strong intolerance to wine.

Here's my not so scientific understanding as to why this would happen. Florinef contains Florine. Florine is a halogen, as is Iodine. The halogens compete against each other in the body, or at least they compete with and deplete iodine. I'm not sure about the other halogens, but our bodies need some iodine (the thought is that the RDA is way too low for what women need). If you are a woman, you've probably noticed that your breasts are getting sore and lumpy as well. Everything in the body uses iodine, but the thyroid and breasts are the biggest users (the thyroid being the biggest user of iodine). Fibrocystic breasts (painful, lumpy breasts) have been linked to breast cancer. My theory is that breast cancer rates might be lowered if women supplemented with more iodine...but I'm not a scientist or in the medical field. Just a strong hunch. I took florinef for a month and I had a terrible flare of breast pain, so I increased my iodine to build my stores of iodine back up. Supplementing with iodine is very controversial, but I will say that it is very hard to get enough from our diet (unless you live in Japan). I'd say read up about it and talk to your doctor (although most doctors always ask me why I take iodine and tell me it's unnecessary, but I swear that it has improved my thyroid and keeps the breast pain away...the one doc who has never questioned me is the endocrinologist, probably because he knows the thyroid needs lots of iodine).

Wow, I think I would consider writing the medical board in your state. What a bunch of **.

Any recommendations on what I need to do or say while in the doc's office? I'm assuming he will send me for testing to get an official diagnosis. I'm not sure how far a cardiologist can get with this type of disorder. I am trying to get into Ohio State's neuromuscular department as well (housed under neurology), but they are booked solid for 6 months (luckily cardiologist is in Ohio State's system, so maybe he can get me in sooner).

I suffer if I try to do any kind of strength training. It causes tremendous pain. Yet I can do some fairly hardcore cardio, like mountain biking, with no ill effect. It makes no sense to me either, but I wanted to post and say that you aren't alone when it comes to the increased symptoms that go with strength training.

Thanks for the info. I'll consider giving it a try (after my specialist visit at the beginning of November).

Was listening to the Ask Dr Dawn radio show and she discussed low GFR / kidney insufficiency and things one can do to help ward off a future on dialysis. She mentioned avoiding sports drinks and potassium as potassium is difficult for the kidneys to flush. I have a low GFR...seems to hang around the upper 50's, lower 60's. All this got me wondering? How many of you have a chronically low GFR? (I'm guessing a few have a low GFR and the advice of not using sports drinks and potassium is bad advice for those of us with dysautonomia)

I know that symptoms can get worse around the menstrual cycle...this is more about symptoms that don't occur every month. Most months, I seem to have worse symptoms the second half of the month - insomnia, blood sugar problems, more pain, more headaches, painful breasts, more bloating. HOWEVER, I have months where I feel pretty good in the second half of my cycle and the symptoms are non-existent or nearly non-existent. Not in menopause, have had hormones checked a number of times and nothing jumps out as being way off, have tried stuff like wild yam cream and it made me feel worse, I take iodine...it doesn't appear to be driven by hormones. For the life of me, I can't tie it to anything I'm doing different in certain months. Do you ladies find that you have a similar pattern? Some better and some worse monthly cycles?