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jenglynn

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Posts posted by jenglynn

  1. I have probably had hundreds of UTIs... First one I recall- I was 5 years old and got really sick and had to be hospitalized. Almost every time I am tested for one, I have one.

    According to my urologist, it's a combo of my connective tissue disease and autonomic issues. I guess my bladder is 50% larger- i.e. stretched out from chronic urinary retention. Often I have no urge to go, or I have an urge but TRY to go and can't (so annoying- that's autonomic I guess) and since Dec. I've struggled off and with bouts of urine leaking or full incontinence. When I have had full loss of bladder control I have no urge to go at all- but look down when the signs are evident and realize that I've wet myself. This has been one of the hardest things for me- emotionally- throughout the last few months.

    Now it's gotten so bad that I'm going to have to start catherizing myself at least 4x a day. The theory is that my bladder is so stretched out that it never gets fully emptied, therefore old, old urine remains in my bladder and causes these chronic infections. So I need the constant catheter to make sure my bladder is fully emptied.

    One issue I have with this- haven't started doing it yet- supposed to be next week- I also have an autoimmune disease, which has attacked and destroyed my ability to have a fever- so infections are dangerous. I've had catheters countless times in the hospital over the years- obviously given my professionals- and have gotten a UTI or bladder infection from every catheter ever inserted. So I am kind of afraid that especially doing it myself, at home, I will be having constant infections, which in turn is going to kick my autoimmune issues into its psycho overdrive... And because I don't get fevers to kill it....??????? Even the urologist said there were no good options for me and he doesn't even know WHAT he would do in my shoes.... Sigh.. I don't know. It seems like no matter what, I have no option that will clearly take care of the problem. Ugh. Advice??????

  2. Interesting topic. I have OH- since October, actually a couple months after my DX, I've lost 51 pounds as of today- weigh 101 lbs. I checked other for the cause because one of the main reasons is just that I never have an appetite. I feel like my appetite sensor doesn't function and have wondered if that's controlled autonomically. I am just NEVER hungry. I drink supplements every day and try to eat as many calories as I can - but I also have early satiety- so just a few bites of anything makes me feel full. My sister had gastric bypass and that's almost how I feel... The way just a few bites fill her up. I could go days without eating and never feel hungry. Thirst is another story and I drink and drink all day long. The only reason I eat are because I set timers on my iPhone to remind me and a husband who is devastated watching me waste away so he often begs me to eat- but at my current weight- bones are very visible and it disturbs him so much- and of course I KNOW I need to eat and get enough calories to stay strong- but it is just so hard to force yourself to eat when you have no appetite and NOTHING sounds appealing,

    I also almost always have tachycardia and it's rare- even lying down- for my HR to be below 120. If I am sitting upright, typically 150's. Any exertion- I crawl around the house to use the restroom, etc. it's almost always 190-200. I've been told by a nutritionist, dietician and cardiologist that this type of tachy does not change metabolism or cause weight loss. After three "experts" I still struggle with the thought that is not at least a factor. If my HR is almost always 120-200 during waking hours, how does that not burn calories, change metabolism, or cause at least some weight loss? I guess it just does not seem logical to me. Anyone else have experience with this or heard the same or differing opinions?

    Jen

  3. Thanks for this post!!!! I had never given a second thought to the fabric but I am always freezing but will get a cold clammy sweat whenever I wear fleece! I never connected the two... AND- I've also been unable to wear my "usual" bras- which is unfortunate because I'm a 34 F size so I need heavy duty underwire for lifting and support- but they restrict my breathing so much I've had to just wear cotton sports bras that I used to only where to bed. But I know this doesn't support my big "girls" like they need it so I fear about how terribly they will be drooping in a year or two :( Any suggestions for something really supportive for larger boobs that won't constrict?

  4. Thank you for sharing this story. I knew very little about him, other than the "Grinch theory" he talks about so I guess my opinion was probably more toward the negative because in my case his protocol isn't a possibility for me. But the fact that he took the time to call you and talk so extensively, and was so friendly... that is pretty rare! My EP Cardiologist has my cell phone # in his and calls me every couple weeks to check on me and I've always thought that was so amazing and the fact that he is taking the time to think of me between appointments and worry about me just makes me feel as if I am more than "just another chart" to him.

    I am pretty impressed to hear that Dr. L would take the time to call you and be so warm, friendly and concerned. That definitely changes my opinion of him... and after I read your thread I did a little more research on him and saw that he does believe that this is a complex condition and it isn't a one size fits all type of protocol that he is talking about. I am always glad when I get the chance to humble myself for judging someone (no matter who they may be) too quickly and realize that there may be more to the story or person than I realize. It restores my faith in humanity and reminds me not to leap to conclusions so fast.

    Jen

  5. WAAAAAY before I got my first "POTS" diagnosis last August... (I am 37) I have been asked about my pupils. They are always fully dilated- and one is bigger than the other... so since I was a teenager or even younger people have always commented on it before I even knew that it was a sign of being drunk or on drugs. I remember staring in the mirror at my eyes and wondering what the big deal is???? LOL. I have blue eyes, although the joke in my family is that you can't tell- they are always black and no one really knows the true color blue of them.

    My daughter, who is 8, was listening to a friend of ours from church who was visiting (who just HAPPENS to be a police officer) telling a story about an arrest of a drunk who passed out on the hood of their car and wouldn't wake up... She asked why he passed out. He said "Oh, because he drank too much.." She said.. "Yeah... Mommy passes out ALL the time... and she drinks A LOT!!!!" Thanks Honey :) I was quick to add... Yeah, a lot of Gatorade and water... We may as well smile about it because it is what it is... and some of our symtpoms are SOOOO odd and seemingly unrelated to one another that it is JUST okay to laugh about it sometimes. Thanks for bringing this up... I had forgotten about the passing out story... until this thread... and it made me giggle all over again....

    Jen

  6. Bringing in an advocate is a good idea... And definitely my husband as well. Issie, good point that could happen anywhere. It was just such a scary and discouraging experience that I am a little skittish. But my whole situation is so complicated that they even admitted to me that I am a "medical enigma"- its actually in my medical record. They don't completely understand why I'm having the organ shutdown and the severity of my autonomic symptoms. You guys have helped calm my fears :)

    I think I get so emotional about the connective tissue stuff because of my daughter. I'm so afraid of her having to go through this someday and I will admit that I am definitely not unbiased. Objectively, I can look at the big picture and think... Yes, that's interesting and something to pursue when you're stable, but right now- you are really sick and it isn't because of that. But as a Mom I guess I just want to make sure that if I can save her from this, if it's even a slight possibility, let's not leave any stone unturned.

    Thank you- you have all eased my concerns. If I'm going to make improvements and get treatment to help me out of this spiral- they are probably the place to be. I do know they want to make me a case study- not sure if that is a good or a bad thing?

    Jen

  7. Thanks for your input... I want to clarify that I do believe that is likely autoimmune related. But to just dismiss other research which states that connective tissue issues can be related just bothered me. My biggest issue is that they totally missed the fact that I'm IgA deficient and gave me a Gamma IVIG (which clearly states- DO NOT give to IgA deficient patiets) which is almost certain to put me in anaphylaxis AND rejection and to not even acknowledge the mistake. I guess I am just having some trust issues...but so far the consensus is that they deserve another chance? I know that we are talking about world renowned experts. I don't want to throw away the chance at getting better- I'm just very torn...

    Thank you so much for taking the time to read and respond... I really appreciate the input very much!!!!

    Jen

  8. Hi Everyone!!! Quick catch up- was admitted through ER due to some organ shut down at a research facility in Dec. I was there a little more than 2 weeks. They diagnosed me with "severe" autoimmune autonomic neuropathy, a connective tissue disease ( but refused to test me further because they do not believe that connetive tissue diseases have any relation to autonomic dysfunction- so my DX is Unspecified Connective Tissue Disease on my discharge papers), and an Autoimmune Deficiency Disease- IgA antibody deficiency and tested positive for Polyconal Hypergammaglobulinemia which often leads to autoimmune Disorders. My kidney function abnormal, thyroid and liver levels abnormal, bladder was completely non-functioning. They decided the course of treatment was 12 doses of IVIG- which when I asked the questions risks/outcome- was told near zero risk and chance of success is 50/50 to help my autonomic neuropathy tremendously ( severe tachycardia, orthostatic hypotensive, very low BP, multiple episodes of syncope daily resulting in lots of concussion, adrenal surges, etc..... ). When I was admitted I had less than 1 min. that I could stand before syncope (had 4 episodes of syncope in the ER alone). I had 4 infusions of IVIG and during the 4th had an anaphylactic reaction. Luckily,was being closely watched so I'm still here. Next day labs showed my body was in full rejection from IVIG and I was very sick, even worse than I was when admitted.

    I'm supposed to have my next appt. in 3 weeks. We had to wait until all the IVIG was out of my system before we could try another treatment. Levels are mostly normal- kidney function is better but not normal yet and still lots of bladder problems. I found out after the fact that the the type of IVIG they gave me actually had a huge chance of rejection due to the fact that I'm IgA antibody deficient. When someone told me this (not a dr. Someone on this forum) I googled it and found in 5 min. 10 sources that clearly state this. I guess I am wondering HOW they missed this???? And when I called to ask about it, I was totally blown off by my neuro- "No treatment is without risks" would not acknowledge a mistake. This, along with the fact that they are totally unwilling to explore my connetive tissue disease as even a POSSIBILITY for contributing to the issue- even though I have a 13 year old who was diagnosed also with an unspecified connective tissue disease at 12 months old (she was a late sitter, walker,etc) and when I asked the neuro at the time what that meant- he said it means she is flexible and she will sit and walk late because she is "floppy". Well, at age 11 she had her first syncope episode. This was before this whole issue with me but I've also had syncope since I was a young child. At 13, she has had 4 syncope incidents. Doctors have said the same thing I was always told: stood up too fast, some people just faint,etc.

    Okay... So my dilemma... I am so nervous and apprehensive about going back - even though I KNOW I'm lucky to even have this option... But I am hesitant because of the IVIG mistake and the refusal to consider the connective tissue- and even though I brought it up OVER and OVER- I was basically told to not bring it up again. This is autoimmune and that's final. And they only want to consider immune therapy treatments. After my IVIG disaster- I'm not sure I want to go there. But I have no other options right now. I've had zero improvement- except my organs are functioning "better" but still abnormal. I would feel better if they said "You know what, we gave you the wrong kind of IVIG brand because of your IgA and we are sorry we missed that and made you so sick and set you back further. But these other options have been researched really carefully." OF COURSE, I wouldn't start any therapy this time without doing lots of research myself and trying to get other opinions. But I feel as if I have very little faith in these doctors and they really have not treated me very respectfully. But I'm still sick and debilitated and I just want to get better and want some form of a life back- and no one else can help me.

    SOOOO- I know that was long and I tried to keep it concise.... What would YOU do in my situation? I can't even find a neurologist that will see me at my home hospital because of my condition and am managed by my family doctor and electrophysiologist- both of whom I love- but they have both done all they can. And I really hope I don't or didn't offend anyone with this post because I'm the first to admit that this is a phenomenal facility... They diagnosed me when no one else could. For the most part, my care was wonderful. But these issues concern me and I'm at a loss at what to do now. Any advice or input would be so appreciated because I just don't know where to turn at this point. And if anyone would be able to help me, I KNOW it is this forum!!! Thanks for reading and trying to follow along :)

    Shamelessly Begging for Help :)

    Jen

  9. I'm really glad that you found the forum.... But sorry for the reason you had to. I've been diagnosed with autonomic neuropathy. I have a connective tissue disease that so far doesn't have a name and also an autoimmune disease- also un-named at this point but I have had doctors say the connective tissue caused my autonomic issues and Mayo says its the autoimmune disorder. So whatever is causing it- it's there. I am very hypotensive. I wake up with BP of 70/50 without meds- sitting or standing obviously doesn't go very well :) Lots of syncope. I will repeat Lemon's advice and say that compression (as much as I hate to admit it because I don't like wearing them) DO really help. I probably overdo it... But I wear knee high and compression capris over those- as well as a binder (which I really dislike) but it does help. I also take 15 mg of Midodrine 3x a day and I was on Florinef 2 mg a day- but the headaches and head pressure was intolerable so I've had to wean off of it (I think because I have Post Concussion Syndrome due to 9+ concussions from syncope it may make my headaches and pressure worse but that is just speculation on my part).

    I also do lots of salt. I take the salt tablets. I don't have much of an appetite so I wouldn't say I actually eat a lot of salt, but my body craves it... I do drink a lot throughout the day...I alternate between Gatorade and water and add salt to those. I am not really exercising much, but do have a recumbent bike and I use that every day and I do exercise in bed. I have not been able to be vertical (aka- walk) since November because of the constant syncope but I do crawl around the house (does not stop the sycnope but at least I'm closer tithe ground) but adding the compression, salt, lots of fluid and in my case Midodrine has helped to where at least I am home and not hospitalized.

    I suspect that going off the anti- anxiety meds is adding to your symptoms. I know that those drugs are supposed to be the hardest of any to get off of. I also take Klonopin but I have not tried (yet) to get off of it. I know that day will come...and I'm not looking forward to it. So good for you for able to do it..

    I hope you start to feel better soon. I know that one thing I really struggled with having so many different symptoms (prior to diagnosis) that would seemingly not be related and I began to feel like maybe the doctors were right. I was crazy. As much as I was not thrilled to be diagnosed with 3 different conditions that no one seems to have any answers for- I actually did feel some relief that I had answer.

    Welcome to the forum!!

    Jen

  10. Add me to the list. Mine isn't due to nausea- just lack of appetite. I've lost about 35 lbs during this really bad flare. I have not found anything anything to help yet... It seems like my "appetite sensor" is broken... Add my swallowing issues and dry mouth to that and it is just about impossible to ever get enough calories.

  11. I can relate and I REALLY wish no one else would have to endure this level of fatigue. My iron stores are also very low... And it seems like I struggle almost all the time.. Week before my period- I'm exhausted. Week of my period- Horrible for obvious reasons- Week after that- recovering from my period... Always tired.

    I'm so sorry you have to feel like this.... (((( HUGS ))))) Sending energizing vibes your way and if you must be sleepy... Then sweet dreams and cozy naps.

    Jen

  12. Julie, I so agree with you!!! I have had thyroid issues ever since my dysautomia conditioned worsened... And the worse it gets, the more my levels are off.

    Thank you, Firewatcher for posting!!!! So far, I have no real diagnosis for my thyroid "condition" or non condition???? TSH very hyperthyroid yet T3 and T4 are hypothyroid.... Yet no one will or can figure this out... I guess the two cancel each other out??? So far the only answer I've gotten is I have sick thyroid- that there is nothing wrong with my thyroid just my body reacting to being so ill. Why shouldn't I believe that???? The doctors have been SOOOO right about everything else in my treatment... Sorry for the cynicism and sarcasm..

    Jen

  13. I have heard a lot of people who have had success with this med. It actually helped a lot with my tachy but I am extremely orthostatic hypotensive with multiple episodes of syncope daily and Propranolol lowered my BP so much that I had to discontinue. But in your case, it sounds like it could be a good option. Good luck if you choose to try it!!!!!

    Jen

  14. Thank you for posting about this. I did not see the clip tonight, but I'm happy ANYONE talks about syncope without only referring to needles, standing up too fast, reacting to shocking news, or my favorite "Some people just faint..." I began having syncope when I was young- pre- puberty and it was never taken seriously. I can't count how many doctors dismissed me over the years until I was finally diagnosed at 37 years old- but unfortunately I had to get very, very sick and have other organs start to malfunction before that happened.

    As McBlonde said... People do NOT just faint without a cause. If someone is doing any news segment that shows it being taken seriously, I'm very happy to hear it. I've known all my life that there was something "wrong" with me and could never truly feel safe in most circumstances because off and on throughout my life, my syncope was so frequent. If that segment could prevent someone, or a a parent of a child with syncope, from that and send them in the right direction to get medical attention (if they are lucky enough to find someone who knows what they are talking about) then what a blessing!!!! Of course, so much more needs to be said, and so much more needs to be reported because our illness is so misunderstood... Sadly we have to take what we can get in the way of publicity. If it has to start with fainting being an actual medical condition... I guess it's sady better than nothing.

    Jen

  15. My goodness... What an ordeal. I was just going to echo the advice you've already received and tell you to try thickened foods.... I've had "anorexia" as it states on my diagnosis list (that was fun to explain to my husband... Who is already a nervous wreck about my condition and 40 lb weight loss- "No,no,no Honey... It doesn't mean I'm anorexic as if I have anorexia nervous, it's a medical term for loss of appetite!!!!" Sigh)

    Since this "flare- or whatever you call it" began for me last April my appetite began to shrink. By the time it was Nov. and I was hospitalized (not for not eating- head trauma initially from syncope) I had zero appetiite. I still don't. I could go a week and not eat a thing and never be hungry. It's like my appetite sensor is broken (Mayo neuro actually told me that is due to my autonomic failure) I have to remind myself to eat. I have problems with swallowing and dry mouth- so I exist on pudding, mashed potatoes, applesauce (all mentioned above) but mainly meal replacements like Ensure or Boost. I am thankfully able to drink a lot so I get LOTS of fluids but would never eat unless I followed the alarm on my iPhone telling me it was time for some calories. Not sure if my appetite will ever come back. It's a hard situation because people see me and are shocked at how gaunt and thin I look and (especially my family) everyone just telling me to EAT whether I want to or not. Easier said than done to eat when one isn't hungry and I know I will throw it all up if I do. It is really hard to eat when you're not hungry!!!! 2 bites and I'm done or get sick.

    But just make sure you are getting something down. I'm sure you've had nutritionists offer solutions as well. And keep hydrated!!! That is so very important.

    ((((((HUGS)))))) Jen

  16. Hannah- that is interesting.. Thinking back I don't ever recall being put under at a surgery center or office (Thank goodness! ) All of mine have been in hospitals or outpatient hospitals attached to hospitals. Now that I know about my problems, I'm terrified at the thought of surgery, especially because it has progressed so badly since I had the last two. I think it also depends on how long I'm under (which obviously makes sense). Last Jan. when I had my appendix out it took them twice as long as normal because I had so much scar tissue from my previous C-section- they had a hard time getting to my appendix and it was nearing rupture so I'm sure they must have to use special care in removing it. That surgery was very difficult for me to recover from, as I was under more than 3 hours. My BP didn't stabilize for days and after the third day inpatient they just let me go with instructions on how to handle the low BP (again, before I was diagnosed). It took me at least 2 weeks until my autonomic system functioned at all. Now, after research I see that anesthesia is not a friend to those of us with Dysautomia- sure wish I knew then what I knew now. :) But who would suspect such a thing?

  17. Starting in Nov. I noticed I was having some issues with my bladder. I'd drink,drink,drink... But had lots of retention. Well, all of a sudden in Dec- I had my first case of full incontinence. Completely wet myself but didn't even realize it was happening. That happened twice in a day and that's when my doctor who manages my POTS sent me to Mayo on an emergency admission and stayed inpatient there 2 weeks. I had a few more episodes of full loss of bladder control, or some leaking, but really the main problem has been retention. I have always suspected I have a large or stretched out bladder from this because I'm just one of those people that doesn't have to pee a lot... Maybe 2-3x a day- that would be a lot. I'd feel the urge to go, then go, then on with my life. Long, long history of bladder infections from age 3+

    Now, the retention has gotten to where I CAN'T go. I feel the urge to go, it's very uncomfortable because I just can't. I will sit there forever, run water, picture waterfalls, everything. So now I'm down to going once or twice a day if I'm lucky- or some says once or not at all. I drink a LOT of fluid.. And I'm losing weight and not swelling, where it is going is a mystery. I saw a urologist last week and he said that there is nothing that can be done because the autonomic system rules the bladder- if my autonomic neuropathy or whatever I have is acting up- they can't fix it and just recommends I start using a catheter on myself 4-5x a day to make sure I'm fully emptying my bladder. I'm just not thrilled with this option, I've never had a catheter put professionally when I didn't end up with an infection. I can't imagine if I was doing it myself. The doctor told me I'd likely have lots of infections but they'd put me on preventive antibiotics. Another option I'm not thrilled with. It's all so frustrating. I also have an autoimmune disease and due to my super aggressive antibodies, my body does not have the ability anymore to produce a fever. I have a very hard time fighting off infections. So it's not an easy answer for me. Even the Urologist said "I don't know what I would do in your shoes. We have no good options for you." Thanks.

    I'm having another fun bladder dynamic study to see if anything is changed but I'm pretty sure that all is the same. Does anyone else on our forum have to catheter themselves to pee? I'm very nervous about the process but I know I have to get rid of the urine somehow- I just thought they could give me a pill that would magically make me pee :) Guess it doesn't work that way... Any advice or opinions?

    Thanks!!!!! Jen

  18. I should clarify- I've had 9 surgeries but never knew I had POTS with any of them. So I was never able to ask the anesthesiologist to take special consideration because of it. But Ive always known my body reacts very badly to it, just never knew why.

    Jen

  19. I've always reacted very badly anesthesia... I have had a total of 9 surgeries in my lifetime and each time have had major problems- problems coming out of it, low BP after- usually keeping me in the hospital 2-3 extra days at least with each one- even day surgeries will keep me a few days to get my BP regulated. I also have problems with other parts of my body as well that are related to the autonomic system- example: my bladder. I had 2 surgeries- emergency appendectomy and knee surgery to fix dislocations- within 7 weeks of each other. I'm pretty sure that the two surgeries so close together caused my current "flare"....

    Jen

  20. I just wanted to thank Issie and those of you who encouraged me to communicate my feelings and fears with Rob (my hubby). We had a long talk and realized that both of us were just really afraid in our own way. Without going into too much detail, my personal health situation makes sex difficult at best, yet not impossible. But it isn't really the sex that I'm needing, it's the contact and affection. Rob admitted that I seem so frail and ill that the thought of sex often seems out of the question, and because at this point he is my primary caregiver, plus we have SIX children (ages 8-15), and his mom newly placed in a nursing home after a bad fall- she is 78 years old and has uncontrolled diabetes and we just found out, early stages of dementia. Just last week when he went to visit, one of my fears came true- she didn't know who he was for awhile and then she had a sudden burst of anger with him when she did remember him (long story- but she does not understand nor remember why she is in the nursing home, he is an only child and his dad died when he was 13- we tried to care for her but now with the dementia AND the diabetes they have trouble controlling in a medical facility, with 6 kids and my condition- we just realized it wasn't safe to have her with us). That is another huge stress going on. As an only child, he feels so responsible for her and is heart broken that she is so angry at him for putting her in a "home". If I wasn't so ill, we might be able to do it, but for now it just won't work- and he's riddled with guilt.

    To make matters worse, he lost his job in December (he was an independent contractor working on a large project with 2 others- he works as a structural steel detailer, meaning basically he does the dimensions for the steel in large projects) He lost his job when I was admitted to Mayo because they had a large deadline coming up and he needed to work 70+ hour weeks for the next 4-6 weeks in order to keep up: with me being at Mayo (an hour from our home), his Mom,and six children at home there was just no way he could devote that time so he was terminated I guess is the word. He was pretty upset because he had devoted so many hours to this project already but really, as I told him, what else could he do? And we knew after my 2 weeks at Mayo I would be going to acute inpatient rehab and getting 12 weeks of IVIG infusions (only received 3 because I went through a very nasty rejection- but that's another story) I was in the inpatient rehab for another 2 weeks and had been in our home hospital for about a week prior to Mayo- so I essentially was hospitalized for almost 5 weeks (from Thanksgiving until New Years).

    So we talked and I think we both have a more clear understanding on where we both are. Really, for the most part, sex is not a priority and not really an option most days because of my health- but I need some contact and affection. And he's been afraid to even be too affectionate with me because of my health and what he sees as fragility (I've lost 40 lbs in the last 3 months) and that I will misinterpret him. So talking it out was the best thing, thank you. So seemingly simple but I just hadn't thought of it from his perspective. He has definitely gone through a life changing several months, just as I have as well as the kids.

    We are both just mentally and emotionally drained and exhausted. Physically, I've not improved- in fact I've gotten worse from the rejection. We don't know what kind of treatment Mayo has in mind because of my dangerous reaction to IVIG. I go back in late March after all the IVIG is out of my system and they will give us the options then. I think at this point, we are both tired and worried- we need the comfort from one another but both were afraid to seek it out. He never wanted to bring it up with me because he's trying to be strong for me and I felt rejected and humiliated that my husband looked at me as a patient and not a woman (he swears this is not the case)! So I told him that I need to be held and cuddled and he knows that sex is not really what I want or need now and is okay with that. He is also aware now that I still have the "physical" needs of a wife; to be hugged and kissed. And he has the same needs too.

    I think both of us are really struggling with our own individual issues and we really need to make an effort to be there emotionally for each other. It's so hard with this condition, because at this point my energy is zero. I'm really struggling with a lot of things, and at the top of the list- WHAT do I do next?? I've lost a lot of faith in the medical community because they don't seem to have any consensus- from doctor to doctor- not just facility- how to deal with these 3 conditions I have (autoimmune deficiency, autonomic neuropathy, and a "connective tissue disorder"-likely EDS but refused to test me because Mayo will not recognize a link between EDS and ANS dysfunction. Not to mention the daily pain and discomfort we all live with daily.

    Sorry- I went on quite a bit and got very off topic but thank you for your advice. It made a big difference and we both feel better. I realize how lucky I am to have to have such a supportive husband. Thank you all so much. If you have any advice to offer on any of my other issues, I will happily listen :) Thank you, thank you- as always- Jen

  21. Your story is an inspiring one and I think it is very thoughtful to take the time to come back and share your success and your key. That is a powerful motivator for those who are capable. Especially after stating you had a lot of negativity before. Everyone of us I'm sure loves to hear a "How I got Better Story!!!" I know I do!!!!!!

    I must say, though that it can be discouraging to imply that exercise will "cure" all of us. Many on this forum do not have a simple case of POTS, and there is a lot more to my autonomic neuropathy that any exercise will cure. Believe me, if it were so simple I would have never developed it in the first place. Despite having symptoms all my life (began having syncope as a young child) I have always been active but noticed how much harder it was for me vs. everyone else.. Yet I persisted and was very active and fit (fighting my body every step of the way) until I ended up in Mayo Clinic for more than 2 weeks inpatient with organ shutdown in Dec. I did not have muscle atrophy and I was not de-conditioned. I also have a still undefined connective tissue disorder (which makes certain exercises actually dangerous to me and explains all of the severed ligaments and dislocations of many joints I've suffered along with numerous surgeries to repair them- most occurring during exercise in one form or another ) and a yet to be defined extremely aggressive autoimmune disorder (so aggressive that I had an anaphylactic reaction and rejection of IVIG, which many people tolerate without too many issues- still dealing with acute kidney failure from that 7 weeks after my last infusion) Yet on my lenghtly diagnosis list, POTS is there. Everyone here is different with different struggles, conditions, or actual diseases. According to my Mayo doctors, all of my afflictions- meaning autonomic, autoimmune and connective tissue were issues I was born with and are chronic. They aren't going anywhere, unfortunately.

    That said, I applaud your success and your motivation for everyone to get some exercise.. Start where you can and build from there. As long as it is done safely and a doctor has approved your regimen- I think only good can come from it. Jogging for me at this point, or even walking, would be out of the question. I hope someday this what I hope is a "flare" will fade and I can begin a more functional life. Hard to do that with a standing BP of 40/20 and syncope after 30-60 seconds ( not to mention Post Concussion Disorder after 8+ concussions). And yes, I stand every day, with assistance, and have for several months- faithfully 5x a day- right next to my bed to fall when I do. ( After all these months, my orthostatic numbers have not changed) I do leg exercises, recumbent bike, and resistance bands everyday- and I'm still where I began. But despite being mostly bed and wheelchair bound, and I do lots of crawling, my muscles are still staying strong. I'm not giving up because someday I hope to be able to say I am where many of you are, but I just can't believe in my case exercise will get me there. But I am so happy for all of you who ARE able to find themselves feeling better or "cured" with increasing your exercise.

  22. I am sure that a lot of people may not feel comfy answering this question... :rolleyes: Those sound like miserable conditions, especially when you can't get your HR to go down...

    I am personally having a problem in this department as well... but totally un-related to your question so I apologize for adding to this with a completely different issue. My problem is with my Hubby...I am not sure if it sex drive related or he is no longer attracted to me OR he has been in caregiver mode so long I no longer seem "sexy" to him but like a patient. This flare I am in started back in April... but I didn't start having serious problems until Aug/Sept. and by November I was having multiple episodes of syncope each day. In Nov. alone I had three concussions from head trauma- 9 or 10 concussions total now post concussion syndrome.

    I still have such severe orthostatic hypotension and tachy that I cannot really stand and/or walk. My BP drops and get tachy when while sitting- but when I stand it is usually less than a minute before standing- and just standing still- no exertion- will get my HR to 160-200. Frustrating. Bladder is not functioning correctly, lots of headaches, adrenal surges, thyroid is all out of what. I have Autonomic Neuropathy, Undefined thus far Connective Tissue Disease and undefined autoimmine deficiency. Lots more symptoms but you get gist.. I am pretty sick and have to depend a LOT on my husband. I was in the hospital inpatient at Mayo for a couple weeks at Mayo but a week prior to going to Mayo and about 10 days after I was at our local hospital. So I was hospitalized for over a month.

    Now that I am home, believe me sex is rarely first and foremost on my mind. But I do really miss the intimacy between us. When I initiate he gets very uncomfortable. I can only think of ONE time that he initiated since I was released from the hospital. Prior this illness, we had a pretty active sex life- usually 3 or 4 times a week... sometimes more/ sometimes less. (I have always had autonomic dysfunction, I am sure of it... I have always had symptoms since a young child- but was never diagnosed until August of 2011).

    I am becoming to feel rejected. When I ask him about it, he just says that because I am so ill it makes him feel like he is being disrespectful to have sex with me. Not to get too graphic but there are only certain positions that are possible due to my orthostatic problems. He is afraid that I will faint, have major tachy, etc. But he has to help me so much with "physical" things due to the severity of the flare. I am wondering if he is just looking at me as a "patient" and he doesn't show the least bit interested or attracted. This is such a change, becauses sex was a very important part of our relationship prior.. and now he just seems to want to avoid it. So of course, I think it's ME. My looks have really gone downhill- I've lots 35 pounds and don't look very attractive. He has had to see so many things that I just wonder if he will ever see me as a wife and woman again.

    Sorry to hijack your thread but this has really been bothering me lately... Seem as if this darn disease has taken away so many things from me already.... This is just more thing to add to the list.... Sigh.

    Thanks, Jen

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