erickamcc0523

Has anyone ever mentioned how flexible you are? If so, I would investigate the possibility of Ehlers-danlos syndrome, a connective tissue defect that is one of the more common causes of POTS. Joint dislocation (feeling like they're "going out of place") is one of the symptoms, along with joint pain, and other issues.

I have been gluten free since January, and while I still have POTS (and sometimes, even bad enough symptoms to go to the ER with), I can tell there is a difference in how much my pulse and bp fluctuates... Them fluctuating is the first sign I have when I'm glutened. I never really ate that much bread or pasta, so I just completely cut those from my diet. As carbs seriously inflame my joints, I usually stay under 50 grams a day... The one thing I've noticed is that I don't have as much problem of holding onto water since I've gone gluten-free. My neuro supposes that's because my body isn't trying to divert all of it to my guts in an attempt to protect itself against the gluten. Still have issues with that, especially with the summer heat here now (I'm getting frequent IV fluids right now)... Overall, I would say things weren't as bad, but I'm still pretty symptomatic. I think I may have other food allergies, or perhaps I've just done so much damage to my body it'll take a couple years for me to see the full effects of a gluten-free diet.

How in the heck do you keep the thigh-hi stockings up? I just got a pair yesterday, and they help with the air hunger I get quite often. My heart rate on average has dropped a bit, too, but I can't handle them rolling down all of the time!

So, it's been a bit unseasonably warm here (mid-90's with humidity about the same, so heat index of at least 100), but normally if it's hot early in the summer here, it will be especially horrible later in the summer. I'm already dying right now, and I've nearly fainted at least 6 times in about at 15 minute span just being outside in the heat. My feet especially will swell up and turn some interesting shades of red and purple. I used to hate the cold in the winter, but since my surgery this past Nov that set off the POTS, I can see that now winter will be the preferred season for me as it's far easier to cover up with extra layers than it is to not feel like I'm cooking in the inside. I also don't sweat like I should... either I don't sweat at all (other people will be drenched with sweat and I'll have just a very small sheen on my forehead), or I am sweating buckets. It's never really the same two days in a row. Any advise on how to survive this summer??

The most common one is psychosomatic, but I've also been dx'ed as bipolar (rapid cycling and very uncontrolled even with meds), anemia, migraines, anxiety, *JUST* GERD (and not gastritis and Barrett's Esophagus along with that), runner's knee (when I was 10, and I didn't even run back then since I got lightheaded)... I was also diagnosed and treated wrong for patellar subluxations (I had a lateral retinacular tendon release... my only non-stretchy tendon in my knee, so know they're even more messed up before the surgery), which has made the POTS worse. I had my last knee surgery Nov 09, and was dx'ed with POTS Jan 10. I had POTS symptoms before surgery, but they were exacerbated by the trauma of surgery... so what is really frustrating is that if I'd been dx'ed with EDS before my surgery, I wouldn't have had surgery, my knees would be pretty terrible, but not on the level of horrible they are right now, and I would have as many POTS symptoms. I'd also forgot drug seeking, too... It's not my fault that EDS HURTS, especially when knees and hips are constantly popping in and out of place. But, no.. tylenol should take care of that pain, never mind my knee has not been able to stay in place for the past 3 days straight unless I'm wearing the immobilizer. I know there are many more mis-diagnoses I've been given, but I'm really trying to forget about all of the wrong diagnoses and horrible doctors who gave them. What matters now are the 3 good doctors and diagnoses I have... If I were the type, I believe that I could have a nice lawsuit, but since I don't relish talking to lawyers (I hate them even worse than doctors... with good reason, long story) I just go into a new doctor with the knowledge that I most likely know more about my own illnesses than he does and pray that I'm pleasantly surprised that, no, for once they know more. That's happened only once, but if it can happen once, it can happen again.

Oh yes, especially when I stand up. What ***** is when I'm having them when I'm trying to practice organ or piano. My fingers almost lock up and don't want to function. I hope that I'm able to learn how to play bagpipe (something I've ALWAYS wanted to do since I was 8) in spite of this.

I can always tell when it's going to storm... I'm actually more accurate than the weatherman. I have a worsening of POTS symptoms, and I also have a knee and a hip that is very accurate at predicting the weather (OUCH!). I also know when the barometric pressure is changing, as that's what ultimately causes the majority of my symptoms.

Good luck! I hope your appointment goes very well and you end up with an awesome doctor! Now, for my word... discombobulated. Although I must not be that much so (right now at least), since I could think of the word in the first place.

Eating is a very big struggle for me. At times I can't even eat a bite as just the thought invokes such horrible feelings (I am also recovering from an eating disorder, with no huge relapses the past 2 years, although that is a daily struggle). Other times, I can't stop eating, especially those things that are so bad for me. Thank God it's been over 3 years since I've "compensated" for a binging episode, though. This is all mixed in with stomach problems (5 years of undiagnosed gallbladder attacks and nausea even after it was taken out, GERD...), so I can say that eating is easily one of the most complicated and complex things that I do every single day. Oh, and I stand up some times, too, but that just goes with the POTS. I really wish that I could eat just for the sake of nutrition and to function as best as I can, but for about 12 years (with 8 especially horrible years), since I was 12, food has long been a very complicated issue for me. I tend towards the "orthorexic" tendencies (specific types of food, especially organic and specific brands) even when I'm not in a disordered state, but doing that is more about being able to cut out a great deal of food that I won't eat than it is about being healthy. I was a vegetarian for 4 years, again not for the sake of health, but more because it was easier to practice my eating disorder if there were whole food groups I wouldn't eat. Part of why I have been (again, not so much as when I was younger, but it's still a constant battle every day) entrenched with my ED for a long time is that with genetics (my mom is and my grandmother was the same way) I weigh about 20 pounds more than I actually look like I weigh. Even though I know this, getting on the scales is a very depressing and difficult thing for me. My weight is just a number, and especially for me, not a very accurate one to measure my health and my appearance. I would go by just how my clothes fit, but since developing POTS, I've found that I can retain an impressive amount of water and vary between even 2 sizes in the same day. My solution, I suppose, is to find a way not to care at all. As far as not digesting food how I should... I don't know if part of that is just having a screwed up GI system from abusing it for so long, or if it is truly the POTS and EDS that prevents me from absorbing how I should, but I have funky poo and I've been able to see things get digested very quickly and not well at all, if you catch my meaning (sorry about the TMI ).

I too am worst symptom-wise about 4 days before my period until about day 2-3. I usually have the fewest symptoms right after ovulation until the 4th day before my cycle starts. I have been learning about NFP (Natural Family Planning, basically fertility charting), mainly the sympto method (I've been checking cervical mucus, although one could check temperatures and cervical placement for more accuracy as far as avoiding pregnancy, but since I'm single and have no chance of becoming pregnant, I don't need that much accuracy), and it's been a very fascinating process learning about what my body does depending on the point I am in my cycle. I guess my own symptoms are in line with this study. The early follicular phase is the time period leading up to ovulation and the mid-luteal phase is after up until menstruation. Perhaps part of why I might be feeling so awful right before menstruation is partially the hormones that are released at that time. I also have a period of feeling bad (although not as terrible as when my visitor is here) right around the time I ovulate, usually for about 4 days (2 days before and 2 days afterwards). The human body is a very complicated and complex machine and when just one part goes down, the rest of it gets taken for a ride as well. Until I developed POTS, I hardly had any issues with PMS or other cycle related maladies, but that just another thing I can check off the list.

It wasn't so much bravery as it was desperation that allowed me to get the injections. Like I said in a previous post, it wasn't until the pain and numbness shooting down my arms began affecting my piano and organ playing did I actually seek help with it. I am in the process of making an appointment with Dr. F (she has ALOT of paperwork to fill out before even the first appointment, and my hands are hurting too much lately to even write, so I think that I might just type everything out). It's also a long distance, and I don't do well with either long road trips or plane rides (perhaps a 3 hour flight from where I live). But I suppose that I'm at a level of desperation with everything hypermobility and the joint degeneration that usually accompanies it, that I'll just bit the bullet as best as I can.

I must also chime in and say that it doesn't seem to me either that you are in need of a psychiatrist. I will, like everyone else, say that dealing with chronic debilitating illnesses can be very difficult at times, and that it's great to have someone at least somewhat objective to vent to. I have a spiritual director (the same one I saw when I was discerning a vocation, not that I've completely counted that out, but for right now, I need to get a better handle on how to deal with these illnesses if I am ever to be able to live in a convent). He's very kind, understanding, uses alot of humor, and best of all, he's a priest, so I can get absolution afterwards (only if what I discussed would make a worthy confession, ie, only if I've at least mentioned everything that I can think of that needs to be confessed). As a Catholic, for me it seems that a very thorough confession is worth more than a year's worth of therapy sessions. I especially like the fact that at least my spiritual director seems to have a very holistic approach to everything. He encourages me to see another doctor even if I'm sure that this one is a dud too (I said that about my current cardiologist before I met him, and Fr. convinced me to see him) and is concerned with how well I'm managing with the pain. He also acknowledges psychological and, of course, spiritual needs. When I've had a pity party for too long, he reminds me that I'm not dead yet, so I'd better act like I was living (in a very charitable and loving, yet in an "open your eyes, silly" way ). In any case, I guess what I'm trying to say is that seeing a counselor isn't a sign of "crazy" (whatever that is ). And I have to say having an outlet to talk these things out to someone, who if they don't understand, at least try their best to (I'm somewhat tired of answering questions, but I'm glad that he asks them), has been a great source of healing for me. Now, as far as the neuro goes... That's a bit out of her reach, to "brow beat" you into seeing doctors that you don't want to see, and from the sound if things, waste both your and their time. I would suggest (but this is just me) if she brought it up again, remind her that she works for you, not you for her. I know if that happened to me personally, I would be looking for a new neurologist, but perhaps I just have a very low tolerance to such Mickey Mouse $@**!%^#, especially when it comes to anyone in the medical field. You know your situation better than I do, but I would suggest at least thinking about if changing your neuro is something that needs to be done.

Thank you guys for your well wishes. Initially, it was very difficult, but later yesterday evening (after a POTS crash, however) and today, everything has been feeling about as pain free as it has in a long time. My trapezii are still in a spasm, but I have already been told that I might have to get pain blocks directly into the muscles since they have been spasmed for so long (for at least 3 years... Bad treatment from other medical professionals caused me to just not even mention my neck pain until it became extremely unbearable and it started shooting down into my hands and it prevented me from playing piano and organ... Nice priorities, I suppose). I ended up with 8 shots in my neck, and I have two more injections to do on just my neck, and then a follow-up eval. 2 weeks later. Anyways, why it was so difficult during (and some afterwards) is that since everything has been so painful and tensed up for so long, just barely touching my neck can cause me to jump. I literally started crying (and I can't say when the last time I cried from pain... it's probably been a decade or longer, and I have dislocated several joints, gotten a tattoo right on top of my right foot, had knee surgery twice, one gallbladder surgery after several years of occasionally ending up in ER's on IV fluids, morphine, and pheneragn because of gallbladder attacks, and many, many other moments of pain) by the time he did the second shot. He was really nice about it, and kept asking me if I was ok, and laughed when I said I wasn't, but I wanted to get everything done with so he should keep going. I guess from the bad pain, in addition to crazy weather the past week (wide temperature ranges and several storms and different types of fronts moving in and out... East TN is the one of the worst possible places for a POTSie to live), I ended up EXTREMELY nauseous, shaking, very off balance (I looked like I was three sheets to the wind when I tried to walk, and I had to hold on to my mom walking out of the office so I wouldn't fall on my butt), sweating, very tachycardic (I tried to check it but couldn't, but my pulse felt to be at least 150, if not more. Brain fog makes it hard to count that quickly), and basically all of the lovely cookings of a POTS crash. If I had to stand any longer than I did at one point, I would have fainted. When I got home, I went right to bed and slept like the dead for 5 hours, woke up about midnight feeling somewhat sore, but after putting on my TENS unit with an ice pack, it was pretty much gone. I've been somewhat sore at the injection sites most of the day, but I can tell a very big difference in the stiffness and the pain that comes with movement. I've not rotated my neck this quickly back in forth in almost 2 years!!! I hope that this will alleviate the pain enough to hold off from surgery for several years. I've been told that if the injections don't help with pain, or if they stop helping with the pain, the next step is vertebral fusion surgery. I intend on seeing Dr. Francomano before I even get near that point, and even if she can't tell me what to do for my neck, I know that she'd send me in the right place for answers (or at least just from what I've heard about her). Ah well, I guess I should go to bed and go say hello to the triplets (you know, Winken, Blinken, and Nod?). More neck saga later!

It's funny you should mention Gesthemani. One of my close friends is discerning entering there as a monk. My personal favorite convent is Our Lady of the Angels in Crozet, Va, a Trappistine convent. I stayed there for a week last summer (before the POTS-worsening knee surgery), and since I was discerning, they let me help them with their cheese making, and I have to say that was just a wonderfully prayerful week. And it's funny that I should have mentioned taking a retreat yesterday, since today I received an e-mail from the vocations director of Our Lady. If I were to call it a coincidence, it would be only because I am thinking of Albert Einstein, who once said something like coincidences are when God choses to remain anonymous. Perhaps it's a coincidence that my favorite places as of late are out in the middle of the country, surrounded by cattle fields and where there is no cell phone service

Elfie, I can truly understand where you are coming from. I have had POTS symptoms since I can remember, but after a surgery in Nov 09, everything has gone haywire. I am, too, a student... I took a semester break after my first year of college that ended up being 4 years long, a very big regret, but at least now I'm more focused, or am attempting to be as much as the brain fog will let me, in classes, and I have a purpose. I am a music major (I want a degree in Sacred Music, specializing in Gregorian Chant), and what kills me is that I change my major about a month before my surgery. I took an organ class because I needed a couple more hours, and ended up falling in love with it. Before the surgery, I could play for 3 hours straight (with a few stretch breaks here an there), and completely not realize that I stayed that long. Now, if I can play for an hour or so at a time, it's a bloody miracle that I not faint. Usually at that point, I am shaking, in the early stages of presyncope, and in screaming pain, especially in my neck and back (and sometimes all the way up into my head), and scared to death about going down the narrow 1920's era steps from the choir loft into the first level. There have been times that I've scooted down them on my butt. I also really understand the brain fog for other classes. I am thinking about minoring in sociology or cultural anthropology, as those subjects have always fascinated me since I was the strange kid at 7 who read about it in the encyclopedia for the first time because I preferred to stay inside and read to going outside to play. Now, I have trouble even understanding the directions for something that's supposed to be idiot-proof. One way I cope with this is laugh at it. I can't control what my body does, but I can control how I react to it. And I can only see two choices: laugh at it or cry at it. For the most part, I laugh at it, although a good cry every so often can be theraputic. I also ask a few really good friends (maybe 2 or 3 of them) to do some things for me, especially if it involves picking things up from the floor, or any other POTS unfriendly moves. I follow the motto of "Do what I can when I can, and if I can't, it's OK". I come here and vent, and I also will talk my priest friend. He commiserates with me and lets me vent for awhile, but then after that, he reminds me that I'm still alive, and even if I couldn't live as fully as most, I need to live as fully as I personally can. Throwing myself into as many other non-health related activities as I can. For me, it's music and Church, but as much as possible, taking a break, even a mental one, from illness is an important time of recharging from our already defective batteries. The most important advise I can give is "one day at a time". I know it's easy to start worrying and freaking about the future, especially if something is degerative, but... to paraphrase one of my favorite scripture passages, who by worrying can add another inch to their height. Again, it's another recognizing what I am and am not in control of. Again, I read your post and I have an understanding of how you feel. Post and vent here anytime you need, and I hope you are better able to cope with everything in the future.