Anyone Else?

[cmreber]

I was diagnosed with POTS at the beginning of the year, and as to be expected, there are seemingly a lot of issues that go along with it. Most everything has been so much better since I have been taking Metoprolol Tartrate twice a day. I have had a lot of digestive / bowel issues lately, but I was wondering if anyone else has had flank pain? I sometimes get slight pains when I have to private, but the last time it actually hurt pretty badly on both sides (lower back sides) but more so on the left. I'm trying to figure out if it is just another thing that goes along with the POTS or if it might be something else altogether. Just curious if anyone else in here has has the same issue? Thanks!!!

[cmreber]

*that was supposed to be "urinate" not "private"! Sorry!

[HopeSprings]

Not pain, but pressure in that area - especially in the morning. Have you seen a urologist or nephrologist? Had any scans of this area?

[Dizzysillyak]

I agree with Naomi. Pain of any kind needs further evaluation ...

FWIW .. don't assume that POTS is responsible for any of your other symptoms. Many of my

symptoms have responded to dietary changes but I still have OI ...

hyh ... d

[cmreber]

Thank you both... I actually had an MRI checking for adrenal tumors a few months back (before they had diagnosed the POTS) so I'm assuming it would have caught an issue with the kidneys in that? They did say there were a couple very small cysts, so maybe it has something to do with that? I was just curious to know if this is something other people with this might have too. I suppose if it keeps up I will have to go and get it checked out ;P Thanks again for your responses!

[kayjay]

I have had flank pain with my pots from the start. No other cause has been found. I always wonder if it is my adrenal glands. for me the right side is worse.

[sue1234]

CM, were the cysts on your adrenals or your kidneys?

[MomtoGiuliana]

I've had flank pain that turned out to be small kidney stones. Perhaps this has already been ruled out. This can be mildly to very painful depending on size, etc.

[cmreber]

Kayjay, I hadn’t actually thought about the adrenal glands, but that would make sense, since they sit right on top of the kidneys, though I really don’t know why they would only hurt when the bladder is full? But it is interesting that you’ve had the same kind of issue and nothing has been found. When all of this first started from me in January, I had a lot of right flank pain, but nothing ever really came of it. Then it went away, and now it’s back on both sides, though not too bad the past couple of days.

Sue, on the report it said they were on the kidneys… I think maybe one very small one on each, but I can’t remember now exactly what it said (and I don’t have a copy). At the time, it didn't seem to be anything of concern to anyone, just something the person reading the scans noted.

MomtoG, I have been wondering about that possibility. I haven’t actually mentioned it to my Dr., so we haven’t checked it out. Would small kidney stones be picked up on an MRI? They weren’t looking specifically at the kidneys at that time, but I don’t know if they would see them while looking at it anyway.

Thanks everyone, hope everyone is having a decent day to day and not too "POTSy"!

[kayjay]

CM... I also "pee" a lot. Even before I was diagnosed. I even get up in the night many times. I have been though all kinds of testing, Johns hopkins, NIH, and Mayo clinic. Nothing has ever been found. If I push on my back where it hurts I can make my self sick to my stomach. My doctor suggested it was muscle but I know that it is not.

So basically I think in my case it is a POTS symptom. It feels worse sometimes when I am worse. Everyone is different and I think I am just really "sensitive" in a way and I feel something that does not show up in testing. I would like to know do you have hyper pots? several 24 hour urine tests show that my adrenal glands dump a lot of metanephrines... It seems to make sense that there is a connection.

[MomtoGiuliana]

I don't know if even very small kidney stones would show in an MRI.

My pain eventually moved down my ureter and urethra. It was classic kidney stone--fortunately no complications when I get them (I've had some since this initial experience in 2002), just lots of pain/discomfort--and it can be worse when the bladder is full/when peeing depending on where they are lodged.

Drinking lots of water and avoiding certain foods may prevent them.

Good you've had an MRI -- seems this should have ruled out anything seriously wrong? Still should go back to your dr if it is not resolving.

[houswoea]

This might be a long shot, but it was the digestive problems causing my flank pain. Things were pressing on my nerves, if you catch my drift. It happens every time I have that problem. Whe that problem is better, my flank pain is gone!

[Lovebug]

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.

[cmreber]

Kayjay, I have actually had one 24 hr urine test back when they thought I might have adrenal tumors or pheo...it didn't show any particularly strange level of metanephrines or anything, but I do feel like I get weird surges of anxiety or adrenaline sometimes, so who knows?

MomtoGiuliana, I have been trying to be better about drinking enough water, though I know I still don't drink enough (my husband is always handing me a cup full of water or gatorade and saying "drink!" lol). I have been trying particularly hard to stay hydrated the past couple of days, plus not waiting too long too urinate, and it seems like I haven't had nearly as much pain (actually none at all today) as I was before. I am thinking the MRI would have probably shown anything too serious, so perhaps unless it gets bad again, I will wait and just bring it up with the Doc if it is still going on when I see her in a few weeks.

houswoea, it's interesting you bring up the digestive problems being connected somehow, because if there is one thing I have experienced because of the POTS, it is digestive issues. Not to gross anyone out (though I'm sure anyone on here is waaaaayyyy beyond grossing out by now! lol) but I have had diarrhea pretty much a good 70 to 80% of the time ever since my autonomic nervous system ended up going haywire. I will definitely be keeping it in mind... in fact, everyone on here has such great suggestions that I have decided I am going to try and keep a daily journal of my symptoms, etc. and see if it starts to match up with some of the issues others have had. It is interesting to note that since I haven't been having digestive issues for a couple days, the pain has been much better, if not gone most of the time. Of course, as I was saying above to MomtoGiuliana, I also have been staying hydrated, etc. so it could be that... geez, with POTS it's so hard to tell sometimes!

Lovebug, thanks for the response, it sounds like you have been through a circus of tests like the rest of us! I have not been to the Gyno, although my annual is coming up this month, so I guess it's perfect timing, right? I will definitely be mentioning it to him when I go. Hopefully I will either get to the bottom of it, or it will go away! (In fact, I wouldn't be heartbroken if the POTS just went away too hehehe!)

Oh, and, as a side note...I was wondering if anyone else on here has had any trouble with their hands? Sometimes both are affected, but mostly I have issues with the left one. It's usually if I get too cold, or if I have one of those adrenaline rushes, or...um, after spending some "one on one time" with the hubby (which by the way POTS is sooo not awesome for the romance department!). But anyway, it's like my muscles freeze up or clench up and I'm not able to move my fingers, especially my ring and pinky fingers. I have to concentrate really, really hard to make the muscles relax, and then I can move my fingers again, but only with really jerky movements and a lot of concentration. The first time it happened was before my diagnosis of POTS and it really freaked me out. I went to the Prompt Care and the Dr just said it was anxiety and put me on Adivan (which did nothing for me). I have mentioned it to the other Drs I have seen, but no one seems to know why it happens, but I haven't really had anyone look into it either. It is just a very bizarre thing and I was curious to know if anyone else has this too? I didn't want to open up another discussion and hog the forum, so I thought I'd just ask here

Thank you so much everyone for your responses...you are all so helpful, especially since I am relatively new to this whole "wonderful" (that was sarcasm) experience of POTS! Take care all!

[Lovebug]

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!

[cmreber]

Lovebug, sorry it's been a few days. I had a really bad couple of days and then a good couple of days (which I took advantage of and didn't want to be on the computer!) Anyway, thanks for your input. It's interesting that you have the same two fingers mostly affected as I do, even though your symptoms are a little different. I've been thinking that it might have something to do with poor circulation. Just today I was crouched down and the position my arm was in must have been cutting off blood flow because my hand was asleep...and oddly enough until it "woke up" and the blood went back into it properly I couldn't move it at all. So, it would make sense, since a lot of POTS has to do with lack of blood flow and circulation to the proper places and the right time.

I think humor is the best way to get through tough situations, because maybe you can't change what happens in life, but you can certainly have control over your attitude Prior to this, I was working in a hospital, first as a CNA then as a phlebotomist for 3 years, and I have seen an awful lot of really sick people who were the most amazing, positive people I have ever met. If there's one thing I took from that, it's that things sure are easier with an optimistic outlook...of course I have my dark moments, but I try to remember that nothing is permanent and the sun will come through those clouds soon enough!

[Lovebug]

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!

[surfgirl14]

I was shocked when I came upon this because I have been having flank pains for about 2 years. I have had lots of testing done for it and no one can find anything wrong. It is quite painful, and is very uncomforable.

[cmreber]

Potsgirl93,

It's strange that those of us who have had this haven't really been able to find a cause (although, I suppose given the nature of POTS and not knowing ITS cause, maybe that's not all that surprising! ) Mine seems to be pretty intermittent...I won't have the flank pain for a few days and then, out of nowhere it's back. That being said, it's really hard to figure out anything that might be triggering it and so far nothing seems to stick out in my mind that would be causing it. It is interesting though to find people who have the same issue, though I'm sorry to hear you have this pain too!

[surfgirl14]

CMReber : It is very strange, but like you said they cant find the cause and everything of POTS so im not shocked that they don't know why were having this pain. I am the same exact way! I will have the pain and then the next day it's not there? It's really weird. And I can't seem to find anything that would be triggering it. I actually just got a back brace though from walgreens, and it actually has gave me somewhat of relief from the pain. I have tried everthing from Ibuprofen to Perscription Pain drugs and nothing will help the pain. But the brace has given me some relief, not the best but it's something. Hope you are doing good, and wish the best for you. I am sorry you are having to go threw this pain too.