trublukrav55

Hello, I am currently 31 (about to be 32 weeks) pregnant, and have started to really go downhill. I was diagnosed with POTS three years ago, but I'm still not sure I meet the criteria for this. I have never fainted, but do have extreme heat intolerance, physical pain, fatigue, insomnia, and 'purple-ish' legs that are painful when I'm sitting too long. When I start to feel the pain, it is like I have the flu- body aches, shakiness, and feeling like I want to cut off my limbs rather than deal with it any further. I've been taking Vicodin at the same dose for about 10 years, and have had no problems stopping it completely while pregnant- until another neck injury occurred, and I am allowed to take 3/day as a result of the bulging disc that cuts off nerve signals to my right hand (long story)... Anyway, I did not feel 'better' in pregnancy, as some people do. I felt exactly the same as I always did, but more tired, as I was abstaining from my stimulant medication (commonly prescribed for ADHD) during the first trimester. Now I'm on a lower dose of that because I tend to fall asleep while driving (risk to me definitely outweighs risk to baby). Suddenly, within the last week or so, I'm in pain all the time. My hands are swollen like they used to get when I first got sick, and my legs are constantly purple and painful. I know my swollen ankles are part of the pregnancy, but my fingers shake and hurt. I'm having trouble walking. I feel like I did when I first got sick at 19 years old, which was an acute 'attack' of these similar symptoms which were then labeled as Fibromyalgia, a diagnosis I never accepted because it doesn't sit well with who I am, and I've found doctors are less likely to listen to me when I carry that label. I've never had body scans done, besides those conducted due to orthopedic injury, only blood work that consistently comes back normal. I am reluctant to go down the path of doctors and tests again, because I'm less than hopeful I'll get any more than eye rolls and 'go see a therapist' (I'm a Psychologist, so I particularly hate that one...). l am wondering if anyone can shed some light into what is going on... Is this just me being pregnant? Am I sick again? A mix of both? So far the pregnancy has been uneventful, smooth even minus the fatigue. I joke that my reproductive system seems to be the only one in my body that is working correctly. But now with this, I am having trouble getting through daily living tasks, like sitting and walking. Please help! Thanks for listening, I don't know where else to turn to discuss this stuff.

Thanks everyone! I do alternative therapies, and always have, but they're only effective until I get up off the table. Same with sleep aids- it's not that I can't sleep, it's that I wake up in a significant amount of pain. So those aids don't help me sleep through anything. I sincerely hope I only have to wait 4-5weeks to feel better, I'm falling way behind @ work and am scared I'm going to lose my job or make a mistake or something! I even cancelled 3 patients today to go home and lay down. The problem is when I get there, I still won't be able to sleep! It's so frustrating! And the stress that all of this causes- the work, the meds, etc- can't be good for the baby, right? Which stresses me out more! Makes me wonder what's worse: the stress or the meds?

Awhile back I was discussing possibly getting pregnant and seeking advice from fellow POTS sufferers regarding whether or not this would be a doable path for myself to take. I received a ton of helpful advice, and thank all of you who offered their two sense. I'm now 8 weeks pregnant, however, and feel like I want to quit! I am SO fatigued that I can't work, which is dangerous for two reasons: 1) I'm a psychologist and need to be able to listen to my patients because a mistake could be really bad and 2) I'm the primary bread-winner in our house, so without my work, there is no money for this baby. I can't "take it easy" or "cut back" unless by 'cutting back,' those advice givers mean cutting back on things like a house or car... Even downsizing is not an option on my husband's income, or lack there of. I'm getting really annoyed with people who don't have the fatigue saying that this is 'part of the deal' and 'totally normal' because I want to slap them! How is falling asleep while driving 'totally normal'? And I saw them pregnant, and it was NOT like this. Or they were drinking copious amounts of caffeine and taking speed. Since their babies are fine, I'm assuming they don't understand what this feels like. I'm crying all the time because of this, because I can't do this! I can't keep going on like this without going crazy! My doctors prescribed me Vyvanse, a stimulant medication for ADHD, because I was SO fatigued when I wasn't pregnant, and since it is a category C, I can't take it unless it justifies the risk to the fetus. How am I supposed to make a selfish decision such as that? I am also not allowed to take my Vicodin, which was prescribed to me because I have woken up in the middle of the night for the past 13 years in excruciating pain because my joints feel like they're on active, burning fire. Well, I can't take that either, so burning fire it is. Every night. When I told my doctor about these things, she said "oh, you'll sleep" - REALLY!? how helpful that is when I haven't slept in 13 years... and when I said that I slept over 24 hours last weekend without eating or drinking at all, she said "you should just try to get up" - again, THANK YOU! NEVER THOUGHT OF THAT!! WOW!! Anyway, I am beyond beyond frustrated and at my wits end. There are no docs here in Wisconsin that understand both. My POTS doc has me on the blood pressure med for pregnant ladies, which doesn't help the fatigue or pain. He says I should call my psychiatrist to tell him I'm off the vyvanse, which is the most help he'll give me in that regard. Someone please help me before I break down and can't recover!! Thanks for listening, sorry for the caps and venting... I don't know where else to turn...

So, my legs and arms turn visibly splotchy and purple when I sit for too long (which is a problem, because I'm a Psychologist). However, I wouldn't care that much, but it also hurts- not like acute pain, but the pain you get when you have the flu, achy all over, wanting to whine a lot, type of pain. I've been prescribed pain killers for the last 10 years (dose has never changed in that time either, which is weird in and of itself), but I would like to be pregnant at some point. Any idea what else I can do? Stopping a therapy session or laying down while on the job is not an answer that will fit w/ me. I also have arthritis in the spine, which I just found out as well Any help would be much appreciated!

Yay! Hello fellow Wisconsinites!! I have been having trouble finding a doctor that didn't just dismiss me as another person with a vague pain/fatigue/etc. disorder!! I haven't heard of that doc specifically, but the bills that come from Froedtert are enough for me to stay away. I can't find someone who doesn't feel uncomfortable saying, "you know, I don't know what's going on, but I'll stick it out with you until we get this under control..." Have you found one of those? I feel like WI needs to step it up with the specialists outside of the Medical College! Just happy to see others from WI on here though (: -Ali

Thanks for the responses. I didn't know that this forum didn't notify me by email when someone replied, so I figured no one did until now! I guess all of your collective pieces of advise raises another question/problem for me: Since I was diagnosed with Fibromyalgia, I've been reluctant to discuss things with doctors, let alone go to a new one. I am probably hypersensitive, but if I see the eye-roll "oh, you have fibro" one more time, I think I will scream. Even the specialist who diagnosed me with dysautonomia gave me that impression yesterday because the first medication he tried me on didn't have an effect. I talked about this weird thing that happens when my joints feel like they're on active fire- all my joints! It's only happened 7 times and has awakened me from a dead sleep. He said "that's not dysautonomia" and then said he was going to try another med then left the room. So, yeah, not the most awesome thing ever. How did you guys get past the "is this doctor going to think that I'm exaggerating or feigning in order to get some secondary gain" feeling? Or because I'm head-strong, still working, and/or dont 'look like' everyone else with the disease, I must not be suffering as much. The problem is that they don't know me or my personality or my hard-headed-ness----- They don't take the time to ask, or even take more than 1/2 hr with me because they're busy, and I usually wait over a month for these type of appointments. The reaction I get from doctors in the physical medical field makes me feel hopeless and very sad, like no one will take me seriously or actually be willing to look at my case with unbiased eyes because he/she cannot figure out what is going on, so it must be 'my fault'? So, talk to my doctor is easier said than done. Every time I've actually laid it all on the table, I've gotten judgment in response. that's why I didn't look into the Fibro for 10 years, and probably why I'm in a downward swing right now. However, that hard-headed-ness of mine is making me so frustrated with all of this, that I'm on the verge of saying **** it, and see what happens if I do get pregnant, then deal with the aftermath as it comes.

A short synopsis of me: I just found out that apparently I was misdiagnosed with Fibromyalgia for 10 years. I am now 30 and received my Dysautonomia diagnosis when I was 29. Because I figured that Fibro would not get worse than it was, I decided to ignore it, and went on to get my doctorate in Psychology, and now work more than 40 hours per week, loving my job a lot. It is a part of my identity, and advice to "take it easy" will fall on deaf ears. Anyway, my doctor said I'm borderline Pure Autonomic Failure type and POTS. I don't faint, but I can't regulate heat and get very irritable. I have been prescribed Hydrocodone 7.5/325 and have taken 5/day for the past 10 years- never more, never abused, can go without it when I have my 'sleeping Sundays' and dont take meds. I have also researched the fatigue portion, and take stimulant medication (Vyvanse) in order to not fall asleep while driving to work. All of my medications have been prescribed to me for the past 5 years or more, and I can go without them as well, but I sleep- A LOT. Anyway, because pregnancy was initially contraindicated with PAF, my husband and I have pursued adoption. This is draining on me because many birth moms have latched onto the fact that I'm a Psychologist, and have become very angry with me when I set boundaries. They never want to talk to my husband, only me. Also, I should mention that I am the primary bread-winner in our family because my husband is a welder and not in a Union, which totally defies what I learned in grad school: "you shouldn't get into this because of money- people in the trades will always make more than you!" -- apparently people in unions and in trades was a more accurate term! (; I can't believe this is my life right now, and I'm trying so hard for us to be a family of three. My husband says he doesn't mind, but I'm ambitious, I can handle things, and I am 'done' with the adoption process right now! (not actually done, but feel 'done') It'd be SO much easier if I could get pregnant; however, right now, if I don't take my 'ADD' meds, I fall asleep and stay asleep- morning, noon and night. Without the pain meds, I can't sit for more than 2 hours without my legs and arms turning purple. I get migraines, I'm tired, and I can't concentrate. I've never taken more medication than prescribed in 10 years, and do go days without it. But, if I go 9 mos without it, we will possibly lose our house/life because I can't work. I'd be less dramatic about this if I wasn't 30 and wanted 3 children. My life, as it stands, I can handle and have handled well. I just want a family and I can't do this anymore. What I am asking from this forum is some advice as to possibly getting pregnant and staying on the medications? I read that women with ADHD continue to take the medications for work-related reasons while pregnant (i.e ADHD = fired), and that Hydrocodone is often prescribed during pregnancy and if it has been 10 years, the risk to me without it would supersede the risk to the baby. I should also mention that I metabolize pharmaceuticals very quickly- can't take a birth control pill because of spotting, and need double the antibiotics when necessary because of my liver. That's why it may seem like I take a lot of medication- but when tested, it is out of my system even though I've taken these prescriptions for a better part of a decade! I would really appreciate it if someone told me the truth about dysautonomia and pregnancy, the risks of my meds, and what I should do. I'm sad, tired, and feel all alone in this. Believe me, it'd be SO much easier if I could just not think about it and get pregnant!! It'd also be easier if states made adoption easier on the birth mothers and adoptive parents- but that's an entirely different soap box I'm too tired to get on! Please help me.