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Everything posted by leydengs

  1. Thank you both for your responses, I appreciate it!! I see my dr in 2 days so I'll let you know. I was diagnosed with Autoimmune Thyroiditis 8 years ago after having my daughter. The Endocrinologist said it wasn't enough to put me on meds but they did for a bit to see if it helped (it didn't) and then said I was fine and didn't need them anymore (after a few checkups). I will be sure to ask about these. I was also diagnosed with Fibro and every time my dr checks the points to see if I'm flaring I jump badly with every place he pushes, not one spot isn't extremely painful.. He always says that I'm flaring and I say "Dr. I've been "flaring" for 2 or 3 years now!" I'm not convinced it's fibro. Thanks again!
  2. I was wondering how many are diagnosed with POTS and MCAS? I have had POTS since I was a kid (I'm 37 now). I haven't been diagnosed or tested for MCAS but I'm going to ask my doctor at my next appointment in a couple days. This last year or two have been very difficult for me. I was tired of paying for dr visits when I get told "it's just a flare up" so I stopped going to the dr but this "flare up" isn't getting better. I take care of 2 kids by myself so I need to get this figured out. Here is what I'm experiencing on top of my "normal" POTS issues. 1. Beau lines across my nails. Dents are so deep they cause my nails to crack. My thumbs are really bad but they are starting on my pointer and middle fingers as well. 2. Constant pain in my legs. Keeps me up at night (my muscle enzyme test always come back high in the past when tested) 3. My hair is falling out and breaking off so badly, mostly on the left front side. I take hair vitamins but they do nothing. 4. My eyes water and burn like crazy, I always put my freezing cold hands on them to make them feel better and usually I have to lie down for a bit for them to stop. 5. My nose runs CONSTANTLY! I go through 1 roll of toilet paper in 2 days just from blowing my nose and dabbing my eyes. Heat and exercise make this so much worse 6. I have these white patches, skin discoloration, all over my chest and upper back. In the summer it is really bad and looks like I had a really bad sunburn that is peeling. Nothing is actually peeling but it's a similar discoloration. 7. Bloor sugar issues at night if I eat any sugar. I break out in a sweat, become super shaky 8. During workouts I become so short of breath I have to yawn constantly because it feels like my throat closes and I cant great a breath through (I have this throughout the day but so much worse when working out or doing things around the house), my HR is all over the place (POTS), my nose runs even worse, I get chest pains and the burning feeling goes into my neck, after I finish a set of 8 or so reps I get so dizzy I hold onto something, my vision goes black, lose my balance and ears fill up (POTS) I would appreciate any ideas or suggestions. I'm getting so frustrated.
  3. I can't do hot showers, at least not for a long time. If I do I have to leave the bathroom door open with a fan blowing cool air in there so the bathroom doesn't get too hot or I get very light headed. If I don't do those things then I know I'm going to be dizzy for quite awhile after that. I always have a fan near my bathroom so when I do start to feel hot I can turn that on me. I try to do it as soon as I start to feel it coming on or it's too late and I have to sit down. sometimes I'll have a glass of cool water so I can drink that and it helps cool me down a bit. I also dress in layers because one second I'm freezing and then I'll start to feel like I'm over heating and then I have to start ripping layers off and then once I cool down I'm freezing again and have to put them all back on HA! But a fan has been my life saver. My son will see me getting dizzy and he'll run and get my fan for me and make my daughter back away from it and he'll say "Watch out, it's a dizzy one!" lol I'm going to try the cooling vest this summer since my kids will have lots of sports outside.
  4. When I was put on a beta blocker I had the same reaction, my bp runs around 89/52 and when I took that I ended up in the ER with chest pains and it was 140/something (I can't remember) so I had to stop it immediately. I don't have pheochromocytoma.
  5. I'm with everyone else, I am very sensitive to medications. I have to always start with 1/2 dose on things to see how I do. I cannot take any pain pills (unless they are very light doses) and I tried POTS meds and couldn't tolerate those either. I have to find other solutions like adding salt to water and foods. I have to rest when I'm tired or my POTS symptoms get worse. I have a fan near me at all times for when I start to get too hot.
  6. Welcome Robin, I'm so sorry to hear you are going through all of this. You have come to the right place for support!!
  7. I work as a computer programmer so there isn't much movement which I'm not sure if that really helps because my legs just ache all day long but my work is awesome and very understanding and they let me work from home on days I'm struggling. I'm not sure how people work jobs where they are on their feet all day with POTS!!
  8. I tend to stick with a Neurologist but I do have a cardiologist if I need him as well.
  9. When I workout I have to adjust my workouts on how I feel. Sometimes I drink salt water or Gatorade while I'm working out which can help. If I have a lot of up down things I can only do those on a good day. Legs are VERY difficult for me and again I can only do those on a good day and I have to take A LOT of breaks. If my body is worn out I have to rest because if I push it then it makes my POTS symptoms worse. I started out unable to walk up my stairs without having to take a break to being able do full workouts but it took time. When I started I'd try walking on the treadmill for 5-10 minutes and then I'd gradually add more time so I agree with one of the other members above, I wouldn't push yourself too much until you are more familiar with your body and how it reacts to different things. Try not to get frustrated. One day you'll be able to do more and the next day you will hardly make it 5 minutes (thanks to POTS) but just try not to get too frustrated. Listen to your body, if my heart rate starts going too high I have to take a break until it slows back down if that doesn't work then I have to stop my workout so I won't pass out.
  10. Thank you Katybug, that is exactly what my doctor is suspecting at this point.
  11. I have been having a very rough few months. I was diagnosed with POTS a few years ago and I have good and bad days but for the last few months every day I feel worse and hurt worse. I went to the doctor because my left thigh is totally numb and my right leg keeps giving out on me when walking. After some blood work she found that my liver enzymes were slightly elevated and I had 1 kidney showing abnormal function and my CK (muscle enzyme) test was extremely high. Average is something like 38-243 and mine were 2625 (levels they see with someone having a heart attack) so I was told to rest, rest and rest. No working out at all which was fine with me because I'm so exhausted all I want to do is sleep. Now that my flare up is over my levels are all back to normal. Does POTS cause CK levels to spike that high? My doctor is looking into some sort of muscle disorder but so far they still know nothing. Just curious is other POTSIE people have this problem or if this is something different?
  12. Okay so I had some blood work done and it showed elevated muscle enzymes, elevated liver enzymes and 1 kidney functioning abnormally so I'm supposed to rest and drinking water and repeat the blood work in a week but when I drink water I feel sick. I feel like my body temp plummets, I have to wear gloves, blanks and a jacket and I'm still freezing, my joints hurt like crazy (hands, feet, middle-to-low back and neck), I get headaches, stomach is bloated and feels queasy and I get really tired. This was all after drinking almost a full glass of water. If i drink soda or something like that I have no reaction this only happens with water, I feel awful. Does anyone else have this problem? I think my doctor thinks I'm crazy. I had this reaction to water well before this blood work. The doctor is testing me for MS because of numbness in my left leg and my right leg keeps getting weak and giving out (I workout a lot so this is not due to weakness or inactivity). I've had the worst fatigue of my life this last couple months so those are the main reasons that I went to the doctor to begin with. It took me 15 years to get diagnosed with POTS so I am not a fan of going to the doctor!! Any advice/tips would be greatly appreciated!!
  13. I got my first ever flu shot, since I had two very young kids I figured I should get one and 3 weeks later I wound up in the hospital and in a wheel chair so, for me, I'll never get another one.
  14. Thanks Michelle, I feel much better HAHAHAH I'm where you are, I am not going for more tests because they will all say I'm normal and they have no idea what's going on so I'll just try changing up my diet and stuff. I'm going to try a detox to see if getting rid of any toxins helps!!
  15. I talked to the nurse at my doctors office about my test results and I questioned about my stomach digesting so slowly and she said "Yah it says it's slow but still considered normal" UGH! How is constipation for weeks at a time, nausea, reflex, etc normal!!!!
  16. Thanks for the info, I'm definitely at the "Throw my hands up" phase!!
  17. Since that picture I've put on almost 10 lbs and cannot lose anything. If I go town a couple lbs one day I go right back up the next (no matter what I do). I considered trying a detox or doing clear liquids. What kinds of liquids do you use and for how long?
  18. I've had my thryroid tested and it always comes back as normal. I'm big into fitness and nutrition so I know how to adjust my meals and workouts to lose weight but no matter what I do I gain. I never stop eating I just eat smaller meals more often. I'm where you are right now, everything I eat sits like a rock even if it's just a protein shake or if it's a chicken breast.
  19. I have never had problems losing weight. I've always been very constipated even as a kid. I've had POTS all my life as well which got MUCH worse after having my daughter 3 years ago. Of course every test I've had for my bowels has come back normal. However in my GI series tests it showed that the barium moved great through my stomach to a certain point and then just stopped so I had to go walk more and then they checked it again and still no movement so they made me drink ANOTHER barium drink and same result. So I had to live on laxatives and then the go-lytle drinks because I was so uncomfortable and couldn't pass the barium. I will have bouts of constipation that lasts weeks (yes weeks). All the nurse told me over the phone was that my stomach is just slow and that was it, but from after what I've read it sounds like gastroparesis. I know a lot of you have that as well, do my symptoms sound like it. I'm very much into health and nutrition so I eat very healthy but now I can't eat, if I do it's something really tiny and then I have stomach pains, nausea and reflex afterwards but I'm gaining weight. No matter how much I work out or how well I eat I still gain weight! Help please!!!!!!!!
  20. Thank you everyone, the responses I've received and offers to help are great and very exciting. Once we know more details we'll get them posted!!
  21. Holy cow Kellysavedbygace that is EXACTLY what it feels like and I always get it in the joints and always on the right side (sometimes it will be in the left to but always on the right). It's always right behind the knees and/or right where your elbow bends, on the inside. A lot of times it's when I'm sitting at my desk at work and sometimes it's when I'm lying in bed. alex74alex - Oh I love doctors HA! My boss is REALLY understanding so i'm sure she wouldn't mind. Thanks to everyone!!
  22. Mattgreen - The only thing I was told was that I have IBS which is just a generic diagnosis for "We have no clue!". Plus anyone I know that has IBS is running to the bathroom, me I just hope to run there at least once during the month!! ** warning TMI - I always can go during my period (the day I start) so that tells me it's hormonal. I have wondered if I have Chron's or Celiac but I'm not a big fan of getting tests done since they are ALWAYS normal so I haven't been tested for it it. issie - no I haven't tried magnesium, I have really low bp anyway so I'm not sure that will work
  23. Thanks Naomi, I get those pains at night too where I can't sleep because I am constantly moving my legs in different positions. I thought about the compression stockings, maybe I'll try those. Today was rough, I was pretty miserable!!
  24. This is why I had to stop beta blockers because my BP was already so low and the BB lowered it but a lot of doctors will counteract that with a blood pressure medication so keep a close eye on your BP. Oh yah I always found that hilarious that the meds we are given have side affects of dizziness, weakness, etc then what's the point of taking it if you already experience all of that!!
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