Lovebug

I have the same feeling sometimes and I hate it! I don't know what it is, why it happens, or how to make it better. There is some consolation in knowing we aren't alone in this.

Sounds great and what a positive attitude! I try to keep my spirits up as well b/c I can function alot better than some people here. Plus I have HyperPOTS so I don't pass out and can hold a job (so far). I notice I have issues when squatting down as well. Also, if my elbows rest on the bed when I'm lying down I can get the numbness in my pinky & ring finger (if not the whole arm). It's great having you here!

Hi All,

I can relate. That's why I tell everyone about Dysautonomia every chance I get. I don't care if I bore them or they don't really want to hear it. I do it for awareness. Even people I hardly know. I just want everyone to know that it is REAL and it is miserable. I'm lucky in the sense that my doctor completely understands and that I'm a nurse so most people take what I say seriously. It is still so frustrating but you can only do what you can do.

I hope everyone feels better!

For being new you certainly fit in well here with the sarcasm and all! LOL! Regarding your other sypmtom with your fingers, I have not had them lock up but have had numbness and heard many on here say they have it too. As a matter of fact, I get that alot. And it's ironic b/c it is always the pinky and ring finger. Mine is usually the left but happens on both as well. I think it has something to do with our spinal cords b/c the same nerve controls those two fingers (I think). BTW....your digestive problems sound just like mine and lots of times my pain is associated with my GI tract and the movements that are made...hahaha! I hope you get better and never be afraid to ask questions on here. This place has literally kept me sane. B/c as you mention, the doctors don't seem to care about our little nuances that seem to worry us. So when we post here and about 100 others chime in with the same symptom, it is strangely reassuring. Feel Better!

I have TONS of LUQ Abdominal pain. I woke up one day (prior to diagnosis) with left flank pain, went to urgent care center and they were sure I had a kidney stone. Had a CT and there was no stone. I was also tested for a Pheochromocytoma (tumor on adrenals) but that was negative. I've had a colonoscopy within the last 4 years as well as EGD which were negative. Labs are always good. Therefore the conclusion: IBS/Dysautonomia/POTS/etc so on and so forth. My doc put me on Celexa and I had a life again. Then the pain started to come back so it hasn't been a miracle drug but I have improved. I also have a history of endometriosis which could contribute to my pain. You should note that the kidneys are fairly high in your body so I'm not sure if lower flank pain is associated with them. Have you been checked by your Gynecologist? Maybe it is a female problem. Either way...keep tabs on it.

My son's doctor has an all inclusive take on this. He explained that the symptoms of POTS are all the same as FM and CFS. Just like any illness some people have all of the POTS symptoms and some only have a few - either way it all relates to the clinical definition of POTS. My son has FM and CFS symtoms but his only DX is POTS. He also has GI problems due to the lack of proper blood flow to his intestines caused by the blood pooling in his extremities but he never sent him to a GI doctor - each time Kyler had a decline in his condition with increased nausea and abd. pain his POTS doctor adjusted his meds and fixed it. The all inclusive approach has saved Kyler from many unneccesary tests in my observation. In the beggining I thought that he needed to be tested for everything but his doctor works magic and makes everything make sense and proves his expertise with real results. Kyler is still sick but his quality of life is pretty good all things considered. I just wish that POTS would stay the same and not change every 2 months or every day for that matter - so annoying.

I completely agree with your son's doc! Only I don't see POTS as the primary diagnosis but Dysautonomia being the mother umbrella that governs all things controlled by our nervous system.....be it POTS (orthostatic changes) , CFIDS (fatigue/immune response), Fibromyalgia (muscle pain), etc. Our nervous system even controls our hormones. My Dys doc (cardiologist) has saved me numerous tests as well. He forced me to try Celexa for my excruciating abdominal pain and it worked. Like you said, I still suffer alot but at least I'm functional.

BTW....love your sons name!

I have Fibro and my symptoms significantly improved with Vitamin D and going to the chiropractor. Now I rarely get flu like achiness and if I do, I use the heating pain. One day I'll get a hot tub as I've heard this helps. I do have visceral sensitivity and lots of "inside" pain (mainly abdominal) so I take Celexa for that.

Whichever symptom I'm having at the time you ask me that.

Seriously, once I tried to identify my worst symptom when I was actually going through it and I was like...."Gosh, this dizziness is the worst. If only I could be spared dizziness I could deal with the rest"......until the next day when I was having relentless LUQ abd pain so bad that it made me nauseated. Then I'm like....."If I could just get rid of this pain I'd feel somewhat normal"....Ahhh, chronic illness!

Lovebug, I found out Dr. Wood has moved and joined Dr. Holman's practice in Seattle, WA. Just our luck!

LOL.....well, of course!

Hi Sue,

I loved the video so thanks for posting it. I wish we could've watched all the speakers as well. Anyway, he mentioned Dr. Wood (?) from LSU....maybe you and I outta go on over and find him to see if he can help us? LOL! Well, more than likely he'd want us to be in a study for him.

Hi tinks!

I can completely relate!!! I know what you mean regarding the heart rate too. For instance, this morning I stood up and my BP went up but my HR was 69 But I've noticed that sometimes I'll be 100/60-70 while lying; 135/100-99 sitting; 110/60-69 standing. Obviously these change the longer I stay in a position and there are times when I'm right on with HyperPOTS & my BP will be 150/120 while standing. All I can say is our bodies are wicked-crazy!

Nurse here! I work in Academia now so I have lots of time off...3 months in summer, 1 month for Christmas, and all the breaks that are given in college. I am so lucky to be able to work still but don't think I'd be able to if I worked a "normal" nursing job. Nor would I be able to work if I had Hypo? POTS versus Hyper POTS.

You should put a poll up!

Hi Dizzyizzy,

I have most of the symptoms you've listed as well. One point I'd like to tell you is that my doc always emphasizes the strength of meds. For example, I started out on 2.5mg of Inderal and worked my way up to 5mg, which is what I currently take. He told me that Toprol was too strong so you might try a different type of beta blocker. Regarding the scariness of the symptoms, we can all definitely relate. My latest symptom that I attribute to Dysautonomia.......gagging. It comes on without warning sometimes and then just goes away. Thank God it doesn't last long but I know it's the Dys b/c it's an autonomic reaction. The danger for most of us is that we attritube almost all symptoms to this disease when it could be something else. That is what scares me the most. I just pray and trust God to take care of me and lead me to the doctor when I need to go. I hope you feel better soon!!!

So I have never been diagnosed with "hyper POTS" but that is clearly the type I have with my BP getting high upon rising. However, sometimes I notice that my BP will be higher sitting than standing. This is random and I haven't noticed a pattern. I was just wondering if anyone has ever started with one type and ended up in another. I feel assured that if my BP dropped low like hypo-POTS I would not be able to hold a job. I feel the only reason I function as well as I do is b/c I go high and not low to the point of passing out. What do ya'll think? Does anyone switch from one to another?

I'm so sorry for everything all of us goes through. I am thankful that I still function and work. However, it is miserable. I recently got a handicap tag so on "CHF days" (those are the days I have Activity Intolerance) I can park close, walk less, & sit more. My coworkers couldn't believe that I had it but I really think they realize that if my doctor takes it seriously, they should too.....and we're all nurses!!!!! I have 2 dysautonomia T-shirts and I wear them as often as I can. I just wish there would be more awareness out there!

I could not tolerate BC pills.....tried 3 different times. Now (a year or so later) my husband will NOT allow me to even try again. I had such bad abdominal pain which I attribute to my IBS (i.e. my Dysautonomia).

O-M-G.....Naomi, I'm soooooo glad you started this topic as I came here tonight to pose a question to everyone. Given the obscure nature of this illness (and especially what causes it) are any of you reminded of how the HIV/AIDS epidemic was in the beginning where none of the doctors knew much about it and it was a big unknown? Well, I feel that way about Dysautonomia except they haven't figured it out and don't seem to care if it is on the forefront in the medical community. I realize that AIDS is deadly but even Dr. Nancy Klimas (world renowned doctor of CFS/HIV with over 20 years of experience) has stated that the debilitating nature of CFS (which I happen to think is a part of Dys) is the most severe she has ever seen, including her HIV patients. DOH: she said she'd rather have HIV than CFS!

And another thing....I don't "buy in" to the hype that this disease isn't deadly. Sure it isn't terminal, but no one can tell me this debilitating, (sometimes) humiliating, uncontrollable, and depressing illness does not have an overall affect on our longevity. Not to mention the fact that I "feel" like I'm dying everyday (even if I'm not). Truth be told, if I must live this way the rest of my life then I'm not quite sure how much longer I want to live. Some days are more good than bad but some days aren't. It's on those low days that I say to myself, "How much longer can I take this? I'm weary mentally and physically. I am tired of being a burden and I'm tired of people not able to understand what I'm going through".

BTW, I'm with Sally.....I pray for all of us every night! Hugs to all!

I realize the XMRV retrovirus has likely been disproven but at least she believes the severity of this:

Thanks Posty, that does clarify. My doc keeps a cardiac w/u on me as well b/c of my family history with heart disease (plus he's a cardio, LOL). But I've never had a tilt or sweat test....not sure what that one does. Anyway, thanks for the info. BTW, what you described as a "purr" sounds like a murmur to me. Then again, it could be the PVC's as I've never heard one before. I'll have to try and listen as I bring my nursing students to a Telemetry Unit for clinical. Regardless, I hope you are feeling well!

Thanks Tinks! You've got to love doctors that aren't very thorough lol. The 150 bpm heart rate should have made the doctor think something was wrong! I had a doctor not long ago who looked at my pulse of 120 while laying down and on beta blockers and he said "wow, you have a really good heart rate!" I almost burst out laughing;) Hopefully, my ep-cardio will take me more seriouly when I go see him again. I think I'm a couple months overdue for my autonomic work up anyways, so he should be pretty thorough.

What is an autonomic workup and what all do you have checked?

Yes...gag lying down, sitting, squatting, and leaning over toilet (of course, lol). But I'll try sitting up straight as this could help. It makes sense so that I'm not pushing my diaphragm up.....thanks!

So now my LUQ abdominal pain (which is intermittent) is accompanied with extreme nausea and subsequent gagging. I usually do not vomit but can gag intensely and even start coughing. Just wondering if anyone else has this.....and what might relieve it. I just can't imagine doing this while giving meds to a patient!

Yes! I don't feel like my joints are coming apart but I get extremely stiff and have pain (for no apparent reason) in my wrists. If I sit too long in a position, when I move I have lots of pain and must do it really slowly. It's like my 110 years old!

When I found this last year I sent it to my friends and family so they would understand. I feel so flaky with this disease and needed them to know that the reason I'm not dependable is b/c of my illness, not me.

I had GI symptoms way before my POTS symptoms. I just thought it was IBS changing and worsening. I went from slow BM's to diarrhea and constant pain in my LUQ. Got checked out at Mayo and basically was told that I was out of shape and it was IBS. It got worse over the next year and I was losing weight. Twice my K+ levels dropped from all the diarrhea that I had trips to the ER with erratic heart beats. Back to Mayo and they told me my IBS was worse but nothing else wrong was found. Note that the gastro-colic reflex can cause severe chaotic peristalsis which results in diarrhea or no BM at all. That's the thing about IBS, you are NOT constipated from lack of water in the stool or lack of peristalsis. The problem is chaotic peristalsis. Then gas can get trapped causing bloating, etc. Well, it's all so unpleasant. Most of my symptoms are GI. I have GERD daily and I've even started gagging like I'm going to vomit but nothing ever comes up (thank God).

The ER likely wants to do an exploratory lap...which is basically done when they don't know what is going on so they go in with a scope to actually "see" what is there. I had this done for my endometriosis. My colonscopy was completely clear so they knew it wasn't anything structural or mechanical but rather my pain was functional. This type of pain indicates IBS.

Just my story....I urge you to stay under a doctors care until they can find out what might be going on with you. Congrats on feeling better and being able to get out of the house! I remember getting better & better and feeling somewhat human again. It is a great feeling. My condolences regarding your MIL. Oh, and I agree with Lieze.....if one body part is good, the other usually "acts up". I tell my husband it is just the part of my body that my nervous system wants to aggravate that day.

I wonder if this contributes to why eating is so uncomfortable also. I literally feel as if I'm coming unglued at times when my body is just trying to digest food.

It feels so strange uncomfortable and awkward.

If there was just a way to go without it I'd prefer to just skip the entire process I think.

I have lots of digestive problems too.....that's how mine started. As you know a large portion of the nervous system is located in the gut so that explains alot. Sometimes when I am fluid loading, water makes me nauseated....WATER!! Go figure.