fitnesskelly

I can second (or third) swimming and rowing. Although with swimming, doing a kick-turn off the wall makes me feel bad, I think because it's my body rapidly changing positions. I would suggest tapping the wall to turn around over kick-turning. My doc was very enthusiastic about the rowing machine we own, so rowing is doctor approved! I also do ok cycling. I hate recumbent biking, but if they have bikes like Spinning bikes (that position you like a real bike does), you would probably be fine. I would just avoid the Spinning classes that make get out of the saddle and the up and down motion could cause problems. My doc told me not to lift weights, but my family doctor suggested resistance bands as a safer and more gentle alternative.

I can't speak specifically to when my symptoms started because I don't recall for sure when they started, however I have had 2 neck traumas and I can say that my health slowly started to decline after the second trauma (happened in a competitive weightlifting event). I also had a few head injuries from sporting events that caused me to see stars and/or lose consciousness. I've been very athletic, participating in risky sports (mountain biking, car racing, Crossfit) and have had a number of crashes that I'm sure caused a sudden impact on my brain. I did have my brain imaged 5-6 years ago after the onset of very sudden and severe headaches that would wake me from sleeping, but the doc said nothing was seen that would be abnormal (and the sudden and severe headaches stopped after about 3 bad headaches). I do have constant neck pain now. If I try to lift weights, I suffer with terrible pain for a week. I also suffer cognitive problems. I would assume they are related. Regarding both our situations - the doc suggested that my problem likely came on with deconditioning after the last neck injury, since it left me unable to perform at the level my body had been accustomed to. I'm wondering if that is driving your problem, rather than the head and neck injury piece. Are/Were you a very active person?

Wondering if anyone has had listeria and if you have long term effects from having it? Not much is available online regarding long-term effects of having listeria, other than it can cause neurological problems. By accident, I found out that I had listeria in February of this year. I participated in the American Gut Project and took my sample in February. This occurred a few weeks after having what I thought was the flu (flu didn't make sense because I had GI problems, but urgent care told me it was just the flu). I was so sick for weeks and afterwards, severely fatigued for months. I developed some new symptoms in that time frame (trigger finger, constant GI problems, complete intolerance of alcohol) - it makes sense to me that having this illness could have caused these new symptoms. Ironically, I thought I had Lyme and went to the doc in March for antibiotics, so I must have killed off the Listeria...indeed I started feeling much better after months on the antibiotic (but the new symptoms still linger). According to the American Gut results, 10% of my gut bacteria (at the time) was Listeria.

I've heard it's a lot of bunk. I worked with a "fake" nutritionist (I say fake because she was some online nutritionist who didn't have an actual nutrition degree - worst $500 ever spent) - she had me take this extensive test to determine my type. It wasn't blood type, but it factored blood type in. The test came out that I should eat mostly meat (particularly red meat) and fat - very few veggies, as low carb as possible. I felt so awful - couldn't sleep, had no energy and no symptom relief. I now eat what I want, avoiding the foods I know that I don't tolerate (gluten, bell peppers and eggplant). I don't limit carbs - I just eat well-rounded. I do seem to have an iron overload problem, so I'm being a little careful about my red meat and citrus intake as well (compare that to the recommendation that I eat mostly red meat).

It has taken me some time to build up my ability, but I can do pretty much any cardio I want (the hardest cardio I do is mountain biking). I should add that I was an athlete prior to finding myself with health problems. I worked out twice a day many days to prepare for the sports I participated in...so I came into these health issues being extremely fit. Doc thinks that my problem could stem from deconditioning after a traumatic injury - I believe that I had mild Rhabdo, the doc I saw at the time refused to test me for rhabdo. I was never able to perform at the level I used to perform at after that injury. HOWEVER, If I try weight lifting, even body weight like pushups, I pay with severe muscle and tendon pain, particularly in the coat hanger area. I've been seeing doctors for 3.5 years about that and no one can figure out why. I was involved in a car accident (driving a race car) about 12 years ago and I did have a neck trauma, but for 9 years it didn't bother me. I'm kind of resigning myself to the fact that I just lived life to hard core with all these risky, hard on the body sports and now I'm paying for it before I even hit 40.

I have cognitive problems. I have a Masters degree and used to be employed in a career that required strong mathematical skills. I left that job before first having any symptoms because I got married, but my skills remained strong. I did crossword puzzles, enrolled in Coursera online classes (difficult classes too, like a number of classes on genetics), learned web design and built a number of websites, did a lot of reading. Now I struggle to remember words, I can't figure out simple math like how much to tip, sometimes struggle to focus when reading...it's scary (esp. because I had a grandmother with Alzheimer's)!

I was going to post and ask about bloating until I saw this thread. I just started Florinef, but before medication I had the same kind of bloating you describe and I've never had a bloating issue before (other than when my gall bladder failed - then I would go from "4-pack" to looking 5 months pregnant). So far, the Florinef doesn't seem to make it worse, but I too wonder what is causing the abdominal bloat. Mine seems to be around my belly button and it's definitely bloat and not fat. Could it be from inadequate sodium intake?

Your story sounds similar to mine and we are close in age. My problems started 3.5 years ago, maybe even longer than 3.5 years. My health has declined since, been through I don't know how many doctors (probably 12) and still have no clue what's driving me to feel bad. I went through all the thyroid stuff, took all the meds for hypothyroid. The meds only made me worse. At this point we know that the thyroid is not my problem - as my endo explained, something is going on in me that is signaling my pituitary and thyroid to act like they aren't functioning correctly, when in fact those organs are fine. The latest theory is hemochromatosis, which I follow up on soon. I've also been through a year of antibiotic treatment for Lyme (tests were inconclusive, so we decided to try antibiotics and see what happened). A year later, we don't think I have Lyme. All the tests for AI are negative. I've been through so many theories and tests. All I can say is don't give up.

I had to opt out of diving in Key West earlier this year...kind of a bummer, but I also played it better safe than sorry (had the flu the month earlier and was having a really hard time recovering from it...diving sounded just too exhausting for me). We have a GoPro camera that we use for video and photography. It has a feature which takes photos every set interval (I think you can choose intervals from 5 seconds to 30 seconds) while taking video. It doesn't produce the best, most artistic photos, but with iphoto, I do a little photo editing and get some good pictures out of it. If you end up with a GoPro, get a spare battery for sure.

I bought a pair of CEP compression socks from a local running store. I knew if I chose that store, I would get someone knowledgeable about the "technology". I'm wearing them now and I really like them. FYI, in case anyone ever looks at this thread for help: It doesn't sound like the compression sleeves will work as effectively as the socks. Get the socks.

Thanks for the replies. Good to know about Florinef. I had a bad experience with a short course of prednisone after a nasty workout injury - my arms swelled up so much from the injury, I couldn't bend them. It was incredibly painful and I was desperate, which is why I let the doc give me prednisone. My theory on the coathanger pain is that if I get the blood back up high, that pain will subside or go away. Fingers crossed.

Doc prescribed me Florinef. She mentioned Midodrine also, but said it's used for severe fatigue. I don't have severe fatigue. So she went the Florinef route. I came home and read about Florinef and it doesn't look like it's supposed to help with orthostatic intolerance. Does anyone have experience with it and did it help you? Did it help with any pain you have, esp the coat hanger pain? I'm also concerned about side effects (it's a steroid)? For those with experience, what kind of side effects did you have? Finally, neither doc nor the pharmacy told me how to take Florinef. I'm reading I should slowly dose up to the full prescribed amount. Do I still add salt to my water too? Thx!

Also, if you take Vitamin D, take it early in the day (or get some sun exposure early in the day). I feel for you. I went through a period of severe insomnia years ago. There's nothing worse. I hope you get it sorted out soon.

I have a few suggestions to throw out, in case you aren't trying them yet. -Black out curtains in the bedroom -Earplugs (I personally can not sleep without earplugs - my brain is too hyperactive and the smallest sound wakes me) -Magnesium before bed (I drink Natural Calm.) -Do you sleep alone? (Much to my husband's dismay, I sleep better alone. Also pets in bed can be very disturbing.) -Are you hypoglycemic? Dropping blood sugar can cause waking. (Eating a complex carb meal or snack before bed can help with sleep)

Saw the doc this AM and she still feels I have POTS or some sort of dysautonomia. In addition to some other things, she recommended I try compression socks. I was thinking of buying some of the compression socks and/or sleeves that runners use at least for the times I'm doing something in public like biking or hiking. I can do the more medical looking type when I'm hanging out at home or wearing jeans around in public. Are the socks/sleeves that runners use appropriate? Doc said get 15-30 PSI. Looks like the socks are rated by mmHG, which I assume is a similar measure for pressure. Also, do the sleeves even work? Looks like the sleeves cover from above the ankle to below the knee. Would be easier in terms of stinky feet, but I wonder if they are less effective. Here are some examples: SOCKS: http://www.amazon.com/Compression-performance-recovery-Graduated-compression/dp/B013XL41RU/ref=sr_1_27?s=sporting-goods&ie=UTF8&qid=1441029156&sr=1-27-spons&keywords=20mm+compression+sock SLEEVES: http://www.amazon.com/Gabor-Fitness-Graduated-20-25mmHg-Compression/dp/B00ZSZODR8/ref=sr_1_2?s=sporting-goods&ie=UTF8&qid=1441030132&sr=1-2&keywords=20mmhg+calf+sleeve

Today it hit me that I need to do some research into POTS/dysautonomia and SCUBA because I'm a diver and most dives that I do are deep wrecks. DAN (Divers Action Network) says that the blood pressure would normalize in the water, but it's always best to talk to your doctor first. Here's a very brief article: http://www.daneurope.org/readarticle?p_p_id=web_content_reading&p_p_lifecycle=0&p_p_mode=view&p_r_p_-1523133153_groupId=10103&p_r_p_-1523133153_articleId=5994735&p_r_p_-1523133153_articleVersion=1.0&p_r_p_-1523133153_commaCategories=Medical+Questions+EN&p_r_p_-1523133153_commaTags= (If you don't know DAN is, you should. It's very important to carry Dive Accident Insurance, plus they do all kinds of accident and medical research when it comes to SCUBA) My concern over my situation are the depths I go on and the impact on my body of being that deep. Every 33 feet under is another atmosphere of pressure. On wrecks, we often max at 110, 120 and 130 feet, and stay there for a good few minutes. That's a lot of "crushing" impact on the body (literally, thousands of pounds of pressure). I am incredibly exhausted after this kind of diving, unless I use Nitrox (which isn't always a possibility at these depths). My thought is that perhaps it is harder on my body with already low BP. I plan to ask my doc about as I might be diving again in the next month. Even a very healthy person can die if they don't do the proper safety stops - so make sure you never skimp on your safety stop(s). (My qualifications: OW Diver, Advanced OW diver, Nitrox, Rescue Diver)

It sounds to me like you are describing "reactive hypoglycemia". I have struggled with the same hunger 2 hours after eating all my life. My former doc told me to eat something with carbs and protein, like peanut butter, if I had one of the hypoglycemic attacks (they most often occurred in the middle of the night for me). I now eat a more Paleo style diet which really helps me avoid the hypoglycemic episodes. I still eat carbs, but I am cautious about how much and what kinds (I'll take a sweet potato over oatmeal any day). I HAVE to eat some kind of carb with my evening meal or I wake hungry. A little background - I was diagnosed with pancreatitis around age 20. They never figured out the cause. I suspected gluten as a cause, so I quit gluten and that has helped some of my gastro issues. They also said my pancreas produced too much insulin, hence the tendency toward hypoglycemia. At 32, my gallbladder failed and I had it removed. Doc said the gallbladder had atrophied and was full of sludge. Determined to avoid the dumping syndrome after eating fat, I immediately ate nuts and nut butters to "train" my body to continue to accept fat. It worked as I have no issues with dietary fat.

Hey Mark, do you still live in Hilliard? I live in Hilliard also!

I don't think that salt has a significant amount of iodine, but I take an Iodoral supplement every day. I do think that helps me! I also take 2k - 4k IU of Vitamin D daily. Vitamin D level was over 60 when last checked. Thanks for the link on EDS. I spent a long time reading the info on the site and I tested the joints that are tested for EDS and I am hypermobile on 5 of the 9 joints (not sure about my knees, I feel like I need help testing those, but they lock out easy and pop/hurt a lot, so maybe 6-7 joints). I will talk to the doc about EDS. Funny you (Katybug) mention coagubility - the last time my sed rate was checked, it was almost 0. The doc said that a sed rate that low isn't good because it shows my blood wants to clot too much. The Endo is referring me to a hematologist for the possibility of hemochromatosis. Ferritin has been elevated all 3 times tested (in the hundreds, not thousands). This last time, TS% was 30, but the time before it was 45%. I don't have the common HH genes, but I do have 2 copies of the gene for another form of hemochromatosis. Thanks again for all the replies!

Definitely not Hashimotos. I think one doc found that fact to be unbelievable, because he insisted I had it anyway. I saw the Endo today and he said I probably had or have an inflamed thyroid from something else. The doc who suspects POTS is actually an infectious disease doc. She seemed to know a lot about it (makes sense since it comes with the ID territory). I will ask about EDS. I have wondered about EDS, but when I read about it, I don't feel strongly that I match. Except for elbows, my joints aren't hypermobile.

Platelets are in range at 185. Looks to be on the lower end of the range, but not at the bottom.

I also really chemical/smell sensitive...I haven't seen that listed as a POTS symptom either.

Hi everyone, My doc suggested that I might have POTS. Between symptoms and some info about how low my resting heart rate is, how I get dizzy upon standing and how I used to be an athlete that was left injured and unable to perform anywhere close to the level I used to perform athletically, she felt strongly that it might be POTS. She has asked me to try and do some exercise daily and monitor. I report back next week and I suspect she will order the tilt table test based on the result (still low BP, BP drops upon standing, other symptoms). The one thing I have found to help more than anything is the sodium intake...however, I'm really limited on how much I can take in. I use the Real Salt brand and I struggle with even 1/2 tsp of salt a day. The day following the salt intake, I wake with some pretty good bags under my eyes and I have diarrhea (sorry for the grossness). Does it take time to build up the body for a higher sodium intake? Or perhaps the Real Salt brand doesn't work for me (it's a sea salt product)? I should add that most of the time, I make my own food from fresh ingredients, so any salt in the food comes from salting while cooking. I rarely eat out or eat anything considered "processed". As far as when this all started...I'm not sure. I've had pancreatitis on and off since age 20. Doctors never determined a cause. In my late 20's, doctors started expressing concern about my heart (palpitations...worried it could be Afib). In my early 30's, I was hospitalized with a severe kidney infection, picked up pneumonia in the hospital, also had a bad gallbladder. It was in the hospital that my low heart rate was noted. 3.5 years ago, I was working out in a competitive manner and afterwards suffered an injury that caused both arms to swell. I never really recovered and since have felt worse and symptoms have piled on. I have some symptoms that don't seem to fit POTS (perhaps I have an underlying problem, but no one can figure it out). I'd be interested to hear if anyone else has any of these symptoms: -I bruise really easy and the bruises don't go away - I have had one on my leg for a year now. -My thyroid keeps testing slow, but I went through the whole thyroid treatment with natural thyroid meds and we never found a dose that worked for me. I only got worse on the meds. The endocrinologist says something else is driving the thyroid to give a false result. -I have a lot of trouble staying asleep. I wake every night around 2, and struggle to fall back asleep. My adrenals have tested fine and I'm not having blood sugar problems. I can't even sleep without earplugs. -Most of my blood tests look fine...no autoimmune, tests for Lyme were inconclusive (about 1 year of antibiotics to treat and they didn't help). Ferritin a little high, but it doesn't appear I have Hemochromatosis. My understanding is that many with POTS have low ferritin. -No family history of anything OTHER THAN my mom seems to have the same low BP and low resting HR. Can POTS be hereditary? She's never described being dizzy when she stands. Any tips, help, advice is appreciated. Nice to virtually meet you all! -Kelly