Bloating

[Bigskyfam]

Being female and having bloating is driving me bonkers. I've upped my fluids and salt, eating more protein, less carbs... Seriously considering maternity clothing. I'm so disproportionate. Tiny arms and legs and a round belly. Tried gf.. No such luck...thoughts?

[Katybug]

Don't know what meds you're on but I've had the same issue....I literally look pregnant because of the weight gain in my midsection. My docs believe it has been the combo of meds I've had to be on over the years. It was kicked off by being on florinef (steroid), prednisone (steroid), beta blockers, and depakote all at the same time. All are known for weight gain. It was like the perfect storm since I couldn't exercise in any sort of meaningful way to lose weight. Then I have continued to be on other drugs that are known for weight gain, mostly for my migraines. It's the one thing that really takes an emotional toll on me....I was underweight my whole life until this never-ending illness happened. One thing that is particularly hard about it is that I like exercising and being really active so that adds another layer of emotion to it.

[Bigskyfam]

I have yet to be on meds... I tried a bb and it didn't go well. I'm seeing the most benefit from PT... But cycle weeks are the worst!

[Raisin]

Ahhhhhh...yes.....bloating. It can be caused by so many things! I would recommend discussing with your doc. I have endometriosis which can apparently cause this. I have also had air in the lining of my intestines before with this (painful). It can also be from irritable bowel, gluten intolerance, lactose intolerance, lack of proper gut bacteria as well as good ol broccoli. Some really yucky things are female cancers such as ovarian or uterine cancers. Ergo, while it is probably from diet, IMO , I would give it a mention to your doc/docs. No harm in it really, eh? Maybe they can prescribe a great probiotic or something to alleviate the discomfort. With our autonomic nervous systems going awry, it may be something we just have to live with but I hope there might be something out there that might help you! I also despise bloating. And bloating with compression wear on is very uncomfortable indeed!

[lfreem02]

My doctors haven't figured it our either. When the weight started adding up a couple of years ago, someone at work asked me if I was pregnant. I was always thin before hand, and now weigh what I did when I gave birth to my daughter (she weighed 8lbs 2oz, and I had 15lbs of fluid). I went off of Lexapro, and then Zoloft, and have been pushing myself at the gym. I found out a have a carnitine deficiency, so I have been taking supplements. I have managed to lose seven pounds, but my stomach is still big.

[Bigskyfam]

I had no bloating at sea level a few weeks ago. I dropped literally 4 pounds of water weight. Ugh. It's back with a vengeance

[username]

I'm very thin but get horrible distension if there is any food/water in me at all. It's only there if I'm upright, if I lay down or even lean back it completely goes away. My heart rate also goes down by a fair amount when the distension does when I lean back,

I used to think it was blood pooling, but now I think it's visceroptosis/enteroptosis When I asked my newest gastroenterologist about it he said it could be some kind of congenital muscle thing, and just told me to wear a support girdle thing, but I've tried those for a while and it makes me feel worse if anything, even if it keeps my heart rate down a bit when I'm standing. I've tried all kinds of core muscle exercises but that never does anything.

[blueskies]

I'm once again overweight from 4 months on a medication that is known to cause weight. Last year I lost a whole lot of weight which I had put on due to another medication. A lot of the excess weight just dropped off me when I ceased the medication, and what was left I was able to diet off - most of it (I have never returned to my pre pots weight. My weight has gone up and down over the years but I've been heavier now for some years).

But fat or thin, in the morning I can get up with a relatively flat stomach and by afternoon I look about 5 months pregnant and can't wear anything with a waist band although I could in the morning. By night time I look about 8 months pregnant. And it is very uncomfortable. My pj pants bite into my stomach, yet in the morning they are loose around the waistline. I am post menopausal so for me it has nothing to do with cycles. And it is the same day after day. No matter what I do and don't eat, and even if eat very little that day. When I was able to do pilates it was not as bad -- I had abdominal muscles that seemed to act like a natural girdle. But pilates is out now, and has been for some time.

It's 1pm now and my stomach, which was relatedly flat a couple of hours ago, is now bloated. Sitting with my feet up is starting to get uncomfortable and I'll need to lie down soon because of it. I have always experienced some bloating by the end of the day but since POTS really made itself known to me some 14 or so years ago it has been much much worse.

It's very uncomfortable but it's not going to kill me. Still, I don't feel good about it.

bluee

[fitnesskelly]

I was going to post and ask about bloating until I saw this thread. I just started Florinef, but before medication I had the same kind of bloating you describe and I've never had a bloating issue before (other than when my gall bladder failed - then I would go from "4-pack" to looking 5 months pregnant). So far, the Florinef doesn't seem to make it worse, but I too wonder what is causing the abdominal bloat. Mine seems to be around my belly button and it's definitely bloat and not fat. Could it be from inadequate sodium intake?

[sue1234]

I have had horrible bloating for about 15 years. I've been to numerous gastro. doctors, but none have been any help. I did find that taking in any kind of probiotics makes me just blow up like crazy! I have been to the ER a couple of days after thinking I could handle a little yogurt.

What happens to me is, my abdominal muscles seem to be crampy-stiff, and it seems to shut down the intestinal movement. That's what I think anyway. Then, when nothing moves, it just grows and grows. In reality, they say people pass like a couple of pints of gas daily. When I'm at my worst, I can go days or a week without passing any gas. Imagine those pints building up, and there is just a limited amount of room for it to be.

When my bloating is really bad, it seems all my gi contents seem to push upwards into my diaphragm, and I end up really short of breath. That is what makes me not be able to handle it, and go to the ER.

I know with elevated norepinephrine levels due to hyperPOTS, it slows the gi tract in general. So, I guess that is why everything is slow and just sits and builds up.

[toomanyproblems]

Digestive enzymes help me with this problem. Though it doesn't seem as bad as what you guys are describing.

[Heartandsoul]

Prior to getting official POTS symptoms 2-1/2 yrs yrs ag. I did have a problem with bloating. My weight was creeping upward verrrrry slowly over time .... It was in my belly. My docs brushed it off.

Although I had been using salt for low bp I was always able to keep my bp wc at a nice, steady 110/64. No tachy etc or no pounding of heart, no POTS adrenaline surges.

Something went haywire and one day my bp spiked to 210/100. My feet and ankles were two big water balloons. Overnight mt weight had spiked by 7 pounds.

A friend who worked for a hypertensive cardiologist said lay off salt. I stopped all salt immed. Over the next week I lost FOURTEEN pounds of fluid. Now I had a flat belly. For the 1st time in a long time I could wear pants that I had not been able to come close to buttoning at my waist. I felt fine.

I remained salt sensitive thus stayed away altogether from it. Felt fine.

then when POTS came about and it was discovered I had low sodium a heart rhythm doc told me to use salt salt salt. So i am but my belly is like I swallowed a watermelon.

I have no aldosterone, no adh hormone, low sodium yet I retain fluid. Feel like a walking contradiction.

And now I'm hypertensive. And I've lost weight and don't like my thin face. And this huge belly makes it impossible to wear my pants again. Or a skirt. I'm petite and skinny but have this huge belly. I have to wear huge elastic waisted pants and by late afternoon I have to get them off and put on a nightgown.

I am determined to get some balance.

I am seeing a renal doc next month who is supposed to love challenges and I was told can figure things out. Hope it's true. I have an endochronologist who is smart too and I will follow up with him. He's the one who thought to check my aldosterone and adh levels.

Great thread. So glad for this discussion.

P.s. If I learn anything helpful from renal doc...I'll share so that maybe it may help others. Hope so!!

[sue1234]

Yes, heartandsoul, please let us know what you find out. I have low adh and low aldosterone, also.

[Heartandsoul]

Sue1234,

For sure I'll post about that.

Btw ...did you ever get your renin tested? I've had a kidney function blood test and it always comes out normal. But I am thinking it's different than renin specifically. I imagine that test will be done.

Also based on what you posted about you own bloating, gassy issues a friend of mine who has chronic Lyme had horrors going on gastro-wise. She got tested "the proper way" (her words) for fructose intolerance and that was the source of her stomach ails. She is on a fructose avoidance diet and feels worlds better. She was neg. for lactose, celiac and something else I can't remember.

H&S

[sue1234]

H&S, I'm pretty sure my renin has been tested, just don't remember off the top of my head. Most likely it was normal, or it would have been something I remember like my other abnormal labs.

Thanks for the fructose tip. I'll have to see if I see a correlation in my diet vs. symptoms!

[E Soskis]

This may sound odd but, I'm glad to know there are others that have bloating and weight gain. I was feeling rather isolated with this issue. I've had bloating issues off and on for years but, for the past few months, it has steadily worsened. I'm so bloated most of the time that I look bigger than I did when I was 9 months pregnant - I've gained 30 40 lbs in just a couple of months. It seems rather odd but, my MD says I'm not drinking enough liquids and this is causing my body to shift fluid out of my blood vessels. I'm supposed to increase my salt intake, drink 100 ounces of water a day, wear compression stockings, and try to exercise every day Whew! Tall order for an old lady!

[Katybug]

I don't know what meds everyone is on, but, you may want to take a look at side effects from those too. My meds caused a 50 lb weight gain for me. I was gaining 5 lbs every 1-2 weeks. I went down as low as an 800 calorie diet when 1200 calories was still producing weight gain. I even gained at 800 calories. My neuro told me it was some of my meds. The worst was the depakote. I stopped that med (for other reasons). I halted the gain but I did not lose any weight. I'm still on other meds that are known for weight gain. I was able to lose 15 lbs when I went totally grain free due to food sensitivity. I am still working on it but it of course isn't coming off as easily as it went on.

[Lilly]

Hi I know this is a late addition to your posts . I’m suffering really bad bloating and slow motility with this unpleasant condition . I’m trying Famatodine. Any other helpful advice greatly appreciated. 

[Pistol]

Hello @Lilly - for me bloating was a symptom of GERD and IBS. I have been on Protonix for years for the GERD, with good results. The bloating still comes at times but is tolerable. Have you had an EGD? They can take biopsies during it and test you for glutenintolerance, H. Pylori etc. All of these can cause bloating.