Ironically, WATER RETENTION!!

[BeBe]

Pretty much since puberty, I've always been one to retain water around my period, but in the last decade, it's been more like, week of period=normal, every other week of the month=FULL OF SUBCUTANEOUS WATER!! 
It seems to have gotten even worse recently.  I have painful water bloat around my middle, my breasts, my thighs and butt and even my upper arms!!!
My GP is pretty cavalier about a lot of things, and dismissed it when I mentioned it in Jan. as, "some people just retain more water."
However, when he put me on a Fentanyl patch for my back pain last year, I got some pretty pronounced, "pitting" edema in my feet and ankles, and all he said was that he didn't think it was the Fentanyl, and I KNEW IT WAS!  It went away as soon as I stopped!
Needless to say, while I like my doctor, he's often too busy and too set in his knowledge of "what most commonly happens" to see things that might not fit the norm.

Like my unexplained weight gain of late...My whole adult life, my average weight has been about 115-120, except when I went up to 155 on Neurontin.
This year, in the past 2 months, in fact, I went up to almost 130, and no matter what I do, unlike six months ago, and the way I was the rest of my life, it won't change.  My doctor's response?  "Well, there are only 2 ways you gain weight, either you eat more than you burn or don't burn as much as you eat."
I haven't changed anything, and it seems too sudden to be just "my age."
I think it's water!

Meanwhile, my lips are shriveling up from lack of saliva, my tongue sticks to my throat and wakes me up at night....Sigh.

Anyone else NOT on meds and have TOO MUCH WATER on their bodies? Or sudden weight gain?  (BTW, I've had thyroid tests many times, probably the last was the beginning of the year, always normal.)

[Linda196]

BeBe, fluid retention and subcutaneous edema are most often caused by one of two things (or a combination of the two)...right sided congestive heart failure, or kidney impairment. As you can see, either is a potentially serious concern. I'm only guessing here, and this is in no way an attempt at diagnosing or even suggesting a DX, but since you had an increase in edema with Fentanyl, and that drug has documented effect on renal renal tract smooth muscle but none on the cardiovascular system, I would think the first place to look for an underlying cause would be kidneys.

Fentanyl on it's own probably wouldn't be the cause of the pitting edema, but when combined with undiagnosed kidney problems it might be a contributer. SjS (indeed most autoimmune diseases) can have renal (kidney) issues as well.

We all have to remember, too, that the dryness of SjS isn't systemic...it's very possible to have completely adequate hydration or even fluid overload in the body tissue or the circulatory system, and still produce no moisture from the affected glands.

[pixi]

hey Bebe.

I have the same problem with water retention every week, except the week of my period. I have also gained 20 pounds without a change to diet.
I think the reason for my problems is a reaction to taking a proton pump inhibitor that raised my prolactin levels. I had this problem a couple of years ago and had the same symptoms (Plus a few more).
I also take anti inflammatories which are known to cause water retention

Have you checked your medication for these side effects?  I am sure Fentanyl causes a raised prolactin, which can cause your symptoms amongst many others.

[BeBe]

I know I've had this retention problem for years, and I've had numerous CBCs and kidney function tests because of some various meds I've been on over those years, all normal!  So frustrating!  Here's the really weird thing.  I've been on 25 mg Zoloft and 25 mg Topamax a day for years, and in the begining of the year, I went off them for 2 months to see what things might have been cause BY them.  Turned out, when not on BOTH of those meds, (I added one, no difference, and have been on just the other, no difference,) I retain EVEN MORE water!  From what I understand, Topamax can have a slight diuretic effect, so I'm assuming that's partly it.  I also know it can be hard on the kidneys, which is why they're periodically checked. 

As for congestive heart failure...I knew about that one, but don't have the other symptoms really.  However, there are 2 possibilities that could be causing it- one is something I recently discovered.  The first is that I have regurgitating mitral valve prolapse.  I've read that water retention CAN be a symptom of that...I have seen a cardio in 4 years, it's mild, though my old one had told me to come back in 2.  I asked my cavalier GP about it and he said I probably didn't need a cardio...

The other thing I DIDN'T know- morphine can cause both edema AND elevate the release of the antidiuretic hormone, which I think causes the kidneys to release more fluid into the body.  I've been on 15mg-30mg morphine almost daily, for a little over a year, so maybe that's it? 
Or, maybe it's my dysautonomia? Sigh. 

[Tinker]

Bebe,
I am struggling with my middle and terrible bloating, just like you.  I've gained a lot of wt. recently and haven't changed my eating habits.  I can't understand just why I've gained all this wt.

It is so miserable to think that last yr I was a size petitie 4 or 6 and I just bought 8P & 10P jeans.  UGHHHHH!  I am so unhappy about my size.  It may sound like nothing , but I've lost my breasts, cervix, uterus, ovaries, scarless body....and I hate to lose the only thing I have left and that was a cute figure.

I must be retaining water!!  I am only taking 300 mg of neurontin at night so I don't think it's the neurontin.  I had been taking 1300 mg at night to sleep and it finally quit working.

If anyone has any suggestions, please tell me what to do. 

I see my worthless rheummie on the 17th.  TY in advance.  Tinker

[BeBe]

Bebe,
I am struggling with my middle and terrible bloating, just like you.  I've gained a lot of wt. recently and haven't changed my eating habits.  I can't understand just why I've gained all this wt.

It is so miserable to think that last yr I was a size petitie 4 or 6 and I just bought 8P & 10P jeans.  UGHHHHH!  I am so unhappy about my size.  It may sound like nothing , but I've lost my breasts, cervix, uterus, ovaries, scarless body....and I hate to lose the only thing I have left and that was a cute figure.

I must be retaining water!!  I am only taking 300 mg of neurontin at night so I don't think it's the neurontin.  I had been taking 1300 mg at night to sleep and it finally quit working.

If anyone has any suggestions, please tell me what to do. 

I see my worthless rheummie on the 17th.  TY in advance.  Tinker

Tinker,
It could ABSOLUTELY be the Neurontin!  I was only EVER on 200 mg a day, for about 2 years, and after the first year, I very slowly started to change, then suddenly in 6-8 months, I just bloated up to 155 from my normal 120.  When I realized it had to be the meds, I went off of it.  My doctor put me on Topamax instead, she said they had similar actions but opposite side effects regarding weight, and I went right back to my normal weight in 3-4 weeks.  That was in 2001.  Flexeril made me gain weight easily and quickly, so I went off that in a couple of weeks after I started it, and Toprol, a beta-blocker, also made me gain weight, esp. around the middle, after being on IT for over a year. 
So yeah, it can happen!

[Tinker]

Bebe!!!  Thank you ever so much for the tip about the neurontin.  Last night, I looked up side effects and there, big as Dallas, it states "weight gain."  It was very gradual for me.....then all of the sudden I gained 13 lbs. in 6 wks. 

And I'm a bit MORE active than before!!!!

I know topomax is for migraines, but did you say that your doc gave you that in place of the neurontin?  What does it help you with?  Pain, or sleep, or ??

I can't tell you how excited I am that this might be the answer.  I may even buy a New Yrs. Eve dress in a 6 P and see if I lose the wt. in time to wear it!!  lol

                                                      Thanks,  Sheila

[pixi]

Hi Tink.

I was given Neurontin a few years ago for peripheral neuropathy. But only made it as far as the titration level. I gained 8 pounds in a week, which is not good. My doctor changed me to Topomax.
Topomax is used for many things besides epilepsy. Headaches and nerve pain been two of these. It was used in the US as a weight loss treatment.

I took Topomax for a few years, the side effects eventually became too much to bear. The worst is dehydration, which is the last thing needed. The other bad symptom, is memory loss. You become dafter than a box of frogs. But if it works for you and you can tolerate the side effects, go for it.

[BeBe]

Ha, "dafter than a box of frogs!"

Topamax hasn't had THAT effect on me, thankfully!  When I FIRST went on it, food tasted TERRIBLE, even carbonated water tasted weird!  I had some other weird effects, too, like a vibrating sensation on my skin.  I took it for 3 weeks, dropped from155 to 130, (I continued to go back to my normal 120 and even lower on my own, JUST BECAUSE I WAS OFF NEURONTIN,I don't diet!) stopped taking it, then sometime later, I went back on it and no side effects.  Not even the weight loss.  It appears to ONLY make you lose weight that isn't normal for YOUR OWN body. Same thing with Zoloft, which caused me to lose nearly 10 lbs. the first time I went on it, but not after that.

Neurontin didn't HAVE weight gain as a side effect when I was on it!  They told me I was crazy when I said I thought that was it!
Doctors never want to believe that it's not ALWAYS a woman's own fault when she gains weight.  I never had that problem, but I've seen them do to others, and now, ME! grr.

I was on Depakote once, for a short period of time- THAT stopped my migraines from happening.  I told my doctor and six months later it was in a medical journal that it helps migraines.  I don't know if my report contributed to that or not, but I know I got tired of being guinea pig years ago!

So, considering Topamax CAN be mildly dehydrating, isn't it weird that I have to take it because I'm even MORE uncomfortably bloated without it?  (But mainly, I take it for headache prevention.)

[pixi]

Ha, "dafter than a box of frogs!"

It's scary when Kermit becomes more intelligent than you. 

Topamax hasn't had THAT effect on me, thankfully!  When I FIRST went on it, food tasted TERRIBLE, even carbonated water tasted weird!  I had some other weird effects, too, like a vibrating sensation on my skin.  I took it for 3 weeks, dropped went from155 to 130, (I continued to go back to my normal 120 and even lower on my own, JUST BECAUSE I WAS OFF NEURONTIN,I don't diet!) stopped taking it, then sometime later, I went back on it and no side effects.  Not even the weight loss.  It appears to ONLY make you lose weight that isn't normal for YOUR OWN body. Same thing with Zoloft, which caused me to lose nearly 10 lbs. the first time I went on it, but not after that.

Food didn't really change that much for me. I think Topmax dulled the taste, - bit like smoking does, but it didn't make anything taste bad. When I started on Topmax, I could not keep weight on. It took months to balance out at a decent weight. Since stopping it I am 20 pounds overweight, but that was caused by another drug  I may try Topmax again see if I can get back to my usual 110/115 lbs.

Neurontin didn't HAVE weight gain as a side effect when I was on it!  They told me I was crazy when I said I thought that was it!
Doctors never want to believe that it's not ALWAYS a woman's own fault when she gains weight.  I never had that problem, but I've seen them do to others, and now, ME! grr.

My mum has had that problem for years. It took 20 years to be diagnosed with a thyroid problem. Up until diagnosis, she was classed as fat, lazy and greedy. Since diagnosis, she has gained even more weight and the doctors opinion is; She is fat, lazy and greedy 

So, considering Topamax CAN be mildly dehydrating, isn't it weird that I have to take it because I'm even MORE uncomfortably bloated without it?  (But mainly, I take it for headache prevention.)

MILDLY dehydrating!!!! You are joking right? I became so dehydrated on Topomax, I thought my eyes would bleed and cacti would grow in my mouth.

[BeBe]

MILDLY dehydrating!!!! You are joking right? I became so dehydrated on Topomax, I thought my eyes would bleed and cacti would grow in my mouth.

LOL, yeah, but you have Sjogren's!  It's only considered "mildly" dehydrating to some "normal" people. 

I just discovered something that may be a contributing factor in my weight gain!  I've been taking a potassium supplement along with my calcium and multi, which doesn't have potassium, for nearly this whole year.  Even my doctor seemed surprised by that and said, "why are you taking THAT?"  I started taking it because I've never really eaten very well, at least not by the standard that "they" say one is supposed to- I really only eat ONE actual meal a day, don't eat more than one serving of veggies per day, not much fruit, at least not on a daily basis, etc.  I just don't feel right if I put more food than I do now in my stomach in one day.  My blood has always had the normal amounts of all the stuff its supposed to have, even vitamins, etc., so there goes the theory that we ALL have to eat "3 meals a day" and "x amount of servings of veggies and fruit, etc.," but I thought I might be missing potassium since it's not even in my multi.

My heart, which normally beats really fast, even at rest from the mitral valve prolapse, has barely been beating at all in recent months which makes me feel sluggish.  Unlike most, I LIKE when it beats faster, I like being hyper!  I found out last night that potassium LOWERS heart rate, and on top of that, I've cut out a LOT of salt from my diet, which forces the body to put MORE potassium in the blood!!  So, no more potassium, and we'll see if I lose a few lbs., if not the water bloat!
Wish me luck.
I'm 125 or 126 today, down from 130 a few days ago....

[missyb]

Linda said: "We all have to remember, too, that the dryness of SjS isn't systemic"

Linda, I found this curious as my Dr has told me that SJS can affect any moisture producing gland in your body, and moisture producing glands are virtually everywhere. He said this explained why I have intestinal, thyroid, reproductive and even neurological issues. Could you clarify what you mean by SJS not being systemic because I'd like to ask him about that because it sure feels systemic to me! lol

FWIW I also have water retention issues and during some reading came across an article which said because of SJS the tubules inside the kidneys can even become dried out and actually block off urine from leaving. I got the info on the web a while back when I googled about sjs and kidney issues because I was often experiencing upper back pain and such bad fluid retention. I planned to ask what he thought about this at my next appt in a couple weeks.

FYI,  I was told by the Dr to take 2 tablespoons of apple cider vinegar twice a day as it is a great natural diuretic. It works all right, it makes for a delicious salad dressing, it's cheap and can't hurt to try.
The other thing is, I guess forget about the "8-10" glasses of water being adequate, b/c it doesn't seem to be enough for me anyway!. I usually fill a 2 gal pitcher with water and leave it out on the counter so I can see where I am at all day. That I think helps me more than anything because when I see it there I remember I need to drink, otherwise I get busy and forget  ..

[Linda196]

Sorry, I probably should have said circulatory, not systemic.

I just meant that fluid overload caused by systemic illness like kidney or cardiac disease, which is usually reflected in edema, can be totally isolated from the glandular effects of SjS. In SjS, each moisture producing gland or organ can be affected and produce many effects in it's own area, system, and function. In circulatory systemic disease, the cause can be from one organ, but produce effects in all parts of the body, for example, kidney disease can cause swelling of the lower legs...remote but a direct result.

I didn't for a minute mean that SjS isn't systemic...it most definitely is! I meant the dryness of SjS isn't systemic. The effects of SjS can cause systemic disease, too, like the kidney problems you describe. I've found that personal water requirements vary greatly...some people can't tolerate 8 glasses of water daily without causing electrolyte imbalance, others need much more simply to maintain comfort.

[BeBe]

Regarding water intake- I've discovered that I think I was drinking TOO much.  I've decided to let my kidneys decide using the old "bathroom" trick- the color of a person's urine should always be palest yellow or nearly clear and I drank so much water that mine almost never HAD a color, so now I just note that and if it's telling me I need more, I drink more!   I'm less bloated, anyway.

I've been having weird BP issues, though.  My BP IS usually borderline, 140/90, and oddly, my DIASTOLIC is always borderline or higher, even when the SYSTOLIC is close to normal, which is unusual, but lately both are high but the really WEIRD thing is my pulse is abnormally low.  Like, barely out of the 50's low when resting.  I have tachycardia because of my MVP, so that's why it's especially odd!  I don't know what high bp/low pulse means, though, but I do know that I walk or bike a few miles, (>10 usually) a week, more in the summer, SINCE June, so maybe my heart's in decent condition now.

However, a search on the net showed me that hypoglycemia can cause low pulse, and when I checked my fasting glucose number from last year, it was only 70, and THAT was after I'd forgotten that I drank a Starbuck's Frappuccino, so technically, it wasn't on an empty stomach...shouldn't it have gone HIGHER than 70, then!?

I wake up with nightsweats often and have a lot of disturbing dreams, which I also read can be from hypoglycemia...So complicated!

[missyb]

 Linda,  I understand what you meant now  Thanks for clarifying that for me.

Bebe, you look awfully young to have a bp of 140/90. that's a little high isn't it? Oddly I have hypoglycemia too, my family Dr sent me twice to get the glucose test b/c he didn't believe the results the first time! He thought the lab screwed it up LOL I would think that a bs of 70 after a
Starbucks thinga ma jigger is low, I agree with all the sugar in those you should have been higher. Is there an coorelation of hypoglycemia with SJS I hadn't read or heard anything myself.