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Everything posted by jenglynn

  1. Katy & Bren, I have peripheral neuropathy and that is always how I describe my pain. Like my body is completely bruised- but they aren't there. Well, that's not true, with my syncope I'm always covered in bruises but not always matching up. I used to tell my parents I had a sunburn and they'd look at me and so.... Ummm... No.... And I'd say "No! On the inside." It is not always that way though... Sometimes the burning, sometimes the bruised and achy feeling, it could be anything, I was first diagnosed with fibromyalgia and it's still technically on my records but it never seemed righ
  2. Oh Bren- I hear you. It seems as if I spend half my life angry and the half apologizing!!!!! You'd think people close to me would get it would get it. I wasn't like this before. It's a cyclical behavior. I'm an emotional basket case. And I feel ganged up on when people get together to discuss "JEN". Do you think this is helping??? I feel worse than anyone. I don't even know that raging woman and I guarantee no one dislikes her more than I do!!! Thanks for all your replies on a very difficult subject! Jen
  3. Wow... I am very sad that any of you go through this. In my case, and it sounds like many of yours, it can change from anger to rage very quickly. It is so out of character for me. Before I had this flare, I've never had anything like this occur. I was quite young when my POTS/ Autonomic Dysfunction Neuropathy began but this has been the most terrible by far- no comparison. I have always wondered if it was from my concussions or more hormones. I had been thinking that the effects of so many concussions might take longer than a year, give or take, to manifest. Monstrosity, Mine seem to bu
  4. Hi Everyone, This doesn't happen ALL the time, I think there must be a routine for it, but I can't pinpoint it. But I will have these spells where I will have uncontrollable, scary, and emotional bouts of rage and anger. I turn into this person that I hardly recognize. I yell and scream at my husband. I swear and cannot help myself from using any profanity I can think of. I throw things. I have to be physical but of course that is of course a concern with the amount of anger. m It seems to occur after a bump after the head. I have had it a few times occur without any head trauma or conc
  5. You are all such beautiful and amazing people!!! What wonderful responses. As soon as I was diagnosed with P.O.T.S i started keeping a gratitude journal for my illnesses.. I had been sick for quite some time before "kind of" DXed- we knew it was autonomic anyway. Later at Mayo I learned there was more to it than P.O.T.S. I spent a whole day in my hospital bed, crying and feeling sorry for myself. Before I went to bed, my nurse gave me a hug and said she was so sorry- such an odd illness, not a lot of answers,and she said she would pray for answers for me but also a positive attitude and f
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  8. My biggest concern is not so much whether I will grow old or not because who knows??? Seems like diagnosis list is a mile long and no one can figure out how to treat me so I just don't think about it too much. I really worry about my brain function. I've had a total of 10 concussions in my lifetime. I'm 38. Of the 10, 5 were "severe" with head trauma. 7 of the last 10 occurred in the last year. At this point, who knows how many I have had, I still have syncope daily and I don't always know if I've hit my head. So I know of 10 for certain. That is my biggest concern. I already showed some co
  9. Oh Peace- Sounds like we have much in common. There are so many things I just cannot do- guilt. Things that they do that just physiologically drive me crazy may be normal kid things but I can't tolerate- I have to ask them to stop or isolate myself (and I have to spend so much time in bed as it is) - GUILT. The things they've witnessed- fainting, bleeding, my rapid decline- guilt. Missing activities- guilt. As juju know- list is endless. I love them so much and my husband and at times it seems as if I'm more of a burden than a wife or Mommy. I know that sounds like whining and melodramatic b
  10. Peace- Our two boys- 11 and 13- are very sporty and they are always bouncing balls or tossing thing, jumping, floor hockey- these things drive me abolutely crazy, they ALWAYS have but in this flare it is so much worse. I usually just tell them to go outside but we live in Wisconsin so sometimes in winter (although not this one) that does not always work. I have a hard time with this- I struggle between my patience/tolerance level and Mommy Guilt. It's bad enough to have me for a Mom- so disabled right now I can't do any of the things they are used to me doing... And thinking "Okay, is this a
  11. Interesting.... I am so home bound that it is rare I go anywhere- but we have 6 kids- so the noise level gets high- and I have a real problem with that and need to get away from it or they all need to tone it down fast. Well, this weekend my brother and sister are visiting and I decided I am getting OUT and doing something and everyone wanted to go to a hockey game (like kids out if high school before college level so not a huge stadium- they play at the same rink my boys play in). Everyone except my hubby and I went to the whole game but I know my max would be an hour... Because cant sit in m
  12. I haven't had my hair cut- and I'm a cut AND highlight kind of girl too- since the summer. My hair is a MESS. It looks horrible plus I've lost about 40% of my hair as well (I'm thinking thyroid issues no one can figure out) I've been debating about making an appt. bu I'm basically bed bound so was wondering if it would end in catastrophe. Sounds like quite a few of you get symptoms. Darn!!! I wonder if I can pay a stylist to come to my house?? Hmmm.
  13. WOW... I am feeling like I am jumping in VERY late to this discussion!!!! Back in 2008 I had an "episode" of Cluster Headaches- not sure if all of you are familair with them, but they are different kind of headache. Here is a description of them via a web link from Mayo http://www.mayoclinic.com/health/cluster-headache/DS00487 . I have to say, I have NEVER experienced anything like this. They would get so bad (and I am embarrassed to even admit this but I would actualy grab whatever what closest to me and beat myself over the head with it- just to re-locate the pain). I also started having
  14. And Julie- Bless your heart having to manage this with twin babies who have now grown into toddlers. I hope you have a lot of support. One of my biggest sources of guilt about this illness, as debilitating as it has become for me, is how it has affected me as a Mom. We have 6 kids- oldest is 15 and youngest is 8. They are all pretty self sufficient but I am not "there" in the way I always was before. I feel I've had these conditions my whole life- but being the type of person I was- I had to be Super Mom as well as Super everything else. I survived on adrenaline and always pushed myself to th
  15. I am a little "trembly" when I wake up in the morning... But some of your episodes sound much worse I'm so sorry! Not the way you want to start the day, is it??? But my husband tells me I have several periods of trembling,shaking, twitching- often violently so during the night, but it's never woken me up- although it is enough where it wakes HIM up several times. I've been wondering what this is and if something I need to be concerned about or just add to the list of unexplained symptoms. I have autoimmune mediated autonomic neuropathy and a quite aggressive Autoimune Disorder. I am very or
  16. I took Mestinon while inpatient at Mayo, They gradually increased my dose over three days and by the third day, when I had my first full dose I immediately felt awful. I was in a cold clammy sweat, bad cramping, and by far the worst headache I'd ever had. I'm not sure why, but it also made me feel very emotional, angry and irritable. After about an hour, a nurse came in to do my orthostatics BPs- no wonder I had a headache- my BP was 190/140 and HR of 42. I felt like my head was going to explode. Keep in mind, my normal lying down BP is 90/70. She did the sitting up BP and it dropped to 14
  17. Issie, I go to the Mayo in Rochestor. I found both of the Endo doctors who saw me to be very condescending and not all that helpful. I was surprised that they responded with "Thyroid Sickness" but I guess also relieved at the time because I was inpatient there and dealing with so many issues I was okay with thinking: "Okay, at least I can check that off my list!" But my TSH thyroid levels have went from a .68 to a .05 in less than 6 months but my T3 and T4 levels show HYPOthyroid. But they felt my thyroid and said it was small, no goiter and my symptoms don't fit hyperthyroid so there was
  18. I did ask the Endocrinology team about that at Mayo but the dismissed me very quickly without further tests as Eurothyroid Sickness. Although, an endocrinologist at my home hospital has seen my labs and wants to investigate further so maybe it would warrant looking further into? I guess I just made the assumption that they knew what they were talking about but a second opinion is a good idea. Thank you much, Sue for taking the time to mention that to me.
  19. I don't know if I would describe mine as being a thyroid problem, per se, although I am hyperthyroid technically. My TSH is .05. But my T3 and T4 indicate that I am HYPOthyroid. Nothing makes sense. The endo doctors at Mayo diagnosed me with eurthyroid sickness. They explained that there is really nothing wrong with my thyroid itself, but sometimes chronically ill patients will get abnormal readings but the thyroid is reacting to the illness and it isn't a problem with the thyroid itself. I have to go in every 3 months right now to check my levels. The problem is related to my primary i
  20. Hi, I voted that I lost weight. I have lost about 30 pounds since being diagnosed in July 2011 (4 months). I am not very tall, 5'3 and did weight 138. A little overweight for my height but I was okay with it. I had a lot of muscle an am very large chested (34 E) so even in the 130's I didn't really feel overweight because of my curvy type body. When I was weighed in the hospital last week I weighed 108 pounds. I was not shocked that I had lost weight, but was surprised by the amount. And my muscles (especially in my legs) has just deteriorated to practically nothing. My biggest strugg
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