FM MPS, Neurotransmitters Chronic Edema

Discussion in 'Fibromyalgia Main Forum' started by sfd647, Nov 12, 2006.

  1. sfd647

    sfd647 New Member

    I have been battling Fibromyalgia for a long time but only came to recognize it over the last 4 years. At first when mentioning many symptoms to the doctor, he just passed it off and didn't really think I had a problem with it. Later on when I found out that my sister was diagnosed and then my brother mentioned that he had been diagnosed as well, he then thought that this thing was an heredity thing.

    I have been asking questions in here and also listened to some information on MPS and it is the MPS that seems to be the culprit more than FM. I learned about TrP awhile back before I knew anything about these "conditions". The way I learned about TrPs was when a chiropractor was giving me an adjustment and used a kiniesiology approach. He began to massage certain TrPs and I thought I would go through the roof. When he taught me a little bit about it, it was enough to put me on guard to wherever I was having a problem, I would go and search where it hurt the most and apply the pressure. I think that acupressure was more the operative technique than kineisiology unless they are both actually the same thing. I could feel the tension ease up when I would do these things.

    Having learned about MPS, the range of symptoms and then learning a bit about neurotransmitters, that if they were not getting the appropriate "food" to transmit out to the various places they were responsible for, that particular area was in trouble. Having said all this, I come to the main source of this question.

    Can Chronic Edema be a problem dealing with the poor balance of a neurotransmitter? I wouldn't think of even asking this question if it were not for my Infectious Disease doctor. He knows how much water I gain when battling the cellulites and one day asked me what did I see when I looked in the mirror. I thought, "are you crazy? I see a fat lady."... to which he said it before I got a chance to blurt it out to him. He said, "I bet you think that what you see if fat but it iasn't. What you are looking at is predominantly water." I just stared at him. All through these years of battles, I just figured it was the obesity. It was hard to comprehend that I could have that kind of severe edema. I know when I had my children, I had an enormous amount of water even to the point with my son, the doctor said my water had not broke yet. I was stunned because so much poured out of me at the house, outside the hospital entry, up on the maternity floor on the scale where even the nurses observed it gushing out of me. Also when I have been admitted into the hospital for the cellulites, the last two times, I ended up losing about 30 lbs of water in just about 5-6 days!!

    So what does anyone have to say about this? Is it possible that something is not transmitting so that certain factors are not working that should be that will cause this kind of situation? Even now as I speak, I have such pressure in my legs that are very tight and I know what is going on. Let it be known, I am not a SALT person and I don't have high blood pressure and I don't have a sugar problem. Those have been tested and I am diagnosed with those conditions in spite of how the doctors want to lay it on me because many other things would have the answer to its origin. It is horrible to live like this. The water pressure is so bad and it is no good for any episodes with the cellulites that I have been managing at home for the last 6 months instead of going into the hospital. So, again, what say anyone in respect to this EDEMA SUBJECT. Thanks for responding.
  2. SherylD

    SherylD Guest

    I don't know what to tell you...but I have this problem too...Maybe not as severe as you, but I know what a pain it can be...

    I have linked it to salt(mostly)...I know you say you are not a salt person...Neither am I. The longer I go without any salt...The more the swelling goes down...BUT It never goes away..So it has to be something else too..

    Every once in a while I will eat something with salt...Like this weekend I had a couple pieces of pizza...I GAINED 6 lbs.!! THat is not normal. I don't weigh that much so when I gain that I can tell.

    When I walk I can fell it...I also get a lot of swelling on my stomach..

    But when this happens I do notice my pain and other symptoms increase...

    I would love to hear more about this...THis is my battle everyday!

    I have had my kidneys tested...they are fine...All my other test are fine too...I feel it is a mystery! The funny thing is on my last test...My sodium was a little HIGH!!! I told her I eat nothing with salt..I don't salt things at all...I don't eat prepackaged foods..and so on...She looked at me like I was crazy Or like I was lying!

    I too feel like mine is mostly the MPS...I don't know how to control it...But I know diet plays a factor somehow..

    I am going to a new doctor in January...This is going to be the top question on my list.

    Good luck to you!! Let me know if you find any answers to this!

    [This Message was Edited on 11/13/2006]
  3. sfd647

    sfd647 New Member

    All I know is that they have told me to cut down on salt. In all the blood tests they have done on me and then the mineral thing when I was being check regarding the neuropathy, noting ever pointed to an inbalance in my salt level. Whether it was too high, too low, or just right.

    I do know that I can go without eating hardly anything and it still creeps in there. I get so irritated when I have denied myself certain foods, even, because of the edema. I didn't even eat pizza or had lost of pop because I know those can really do the swelling thing. Also popcorn, hot dogs and soups, got to watch out for soups. Instead of making your own soups, you might want to get the healthy choice soups who have regulated the salt intake and fats. There food is tasty as well. They have already measured things out and have a caloric value to those foods. I am not trying to make any one uncomfortable but really, unless you have EVER had water weight gains ALL the time, you will note that they come and go at random and lately over the last 3 yrs, it seems to come and stay. It is true, You get a lot of swelling in the belly as well as the lower legs. That is why pregnancies are very hard. You really have to monitor things very closely. My doctor has to really watch over me because he underood my situation. Yes, if I hear anything, I'll be sure to send it over here so everyone can know how to fix this kind of situation. Also, read on and see what Haleycole had to say about this subject.

  4. sfd647

    sfd647 New Member

    Hey there Haley,

    I think I can barely remember someone saying something about the lymph glands doing some kind work and having them regulate things like in the fluid being dipsersed is a great idea. I have taken water pills to where the doctors first had me taking 2 Bumex (water pills) a day. They have a long standing effectiveness. Afterwards, they pulled me back and had me doing the orange juice, banana, baked potatoes, etc that are high in potassium so that your muscles won't cramp up. Water pills do very hard work and is not good to have a woman get water/potassium depletion. So while you are using the water pills, make sure you take the potassium supplement as well. Those are very needful.

    Well that is it and I'll be sure to have those things check out, Haley. That is very important to be sure. I believe I have said that when I go into the hospital, they always weigh me and after 5 - 7 days in there, I usually end up losing 30 lbs of water. THAT is incredible!! THAT is extreme. Everyone says, good girl but they don't realize that getting your blood pressure too low, can really cause a host of problems. First one noticed is falling because of feeling very unbalanced and weak and lightheaded. One time I thought I was going to pass out. That is not good!!

    I'll see what I can find out as well. Geesh, nothing like putting YOURSELF under the microscope instead of the doctors doing it and making some things look worse and then you go around saying, "that's me!! No.. THAT is me. Later then you hear something else and boom... now we have my sisters feeling this and friedns feeing that as well. So I have had doctors run me around the maypole worse than when I was checking things out on my own, ya know? I know what goes on in my own body more than the doctor does.

    Talk to you soon. Thanks for info
  5. sfd647

    sfd647 New Member


    That was incredible about that obesed person weighing 800 lbs of which Richard Simmons said that a couple hundred pounds was fluid?!! Wow!! I wonder how he could know that there could possibly be that much fluid in the tissues as that! I know that many people would say that the reason they are obesed is because of thyroid, water, etc etc and not just say that over eat!! But then there are situations that truly are because of those factors. Like I had mentioned about my infectious disease doctor telling me about most of what was seen on my body was not fat but water. I was shocked then and still am and NOW, I am even shocked more because of that incident you remember was mentioned on Sally Jesse Raphel's Show. I used to watch her and I have seen shows with her and those that were obesed and I do remember one with Richard Simmons but I don't remember that particular one where he said that. Maybe she had him on more than once or twice.

    The little trampoline isn't a bad idea just that with the imbalance situation, I would go boing, bump, ouch, etc etc from knockin my noggin on da floor!! lol I hate it as it is. I have notice lately it has become worse for some reason or another. It is like don't move too fast or turn around too fast or you get that wheee feeling. So we will bypass that one for awhile.

    However, I am going to discuss that situation with Richard Simmons and the obese person with my doctor or one of my doctors when I can. Thanks so much.

  6. MtnDews

    MtnDews New Member

    Your post was interesting to me. My sister was diagnosed with FM and my brother with MG or Myasthenia Gravis. MG is all about the neurotransmitters not working. I have FM and Ehlers Danlos, but in the past year I've put on FORTY pounds. I don't look like me anymore. I don't eat any differently or any more than I ever have. My doctor said that it is a side effect of the medication I'm taking Lyrica) for pain and so she added Lasix to help with the water retintion. Also a potassium pill to counter act the side effects of the Lasix. I also have low blood pressure and no sugar problems...except for craving it, but that doesn't count.
  7. SherylD

    SherylD Guest

    Hi again...

    When I say I don't eat any salt...I mean NO salt. And yes I still have some swelling. I swell from dairy of course cuz it is got sodium..

    I think sometimes I am allergic to sodium or something...My mouth gets all weird...raw...gums swell. My pain goes way up. All kinds of weird stuff...I get the dizziness you mention too when I am all swollen.

    The thing that interrests me that someone has mentioned the infection thing..I just found out today that I have a horrible bladder infection. Talk about pain...mine is really bad now.

    I wonder if this is not some of the cause of my swelling???

    I just started an antibiotic...I certainly hope it helps!

    What about lupus??? Have you ever been tested for that?? I know people with that can really retain fluid. Just a thought!

    Good luck to you...STill keep me posted on anything you would come up with...I would like to be able to eat something besides the few things I eat..

  8. sfd647

    sfd647 New Member


    Thanks for your reply. I can see it has not been a picnic for you either. Of course you understand that the reason we have low blood pressure is due to the stupid diuretcs we have to take. You would think that having the potassium tablets and I also eat bananas, oranges, and of course potatoes (not boiled because you boil out the nutrients). As I stated before, I think, that potatoes are a very high source of potassium. You would think that orange juice or bananas would be since the doctors and pharmacists are always saying take with orange juice as though that was enough. A long while back I was told to just take the orange juice when I was doing only 1 bumex a day. However, when they were having me take 2 Bumex a day (Lasix wasn't strong enough for me - Bumex is stronger I hear)I was to take the potassium tablet then. I guess the reasoning was that because using 2 diuretics a day needed way more potassium to help replace what was lost.

    Potassium is very important mineral. Without that, you get very severe muscle spasms. I once had muscle spasms in both of my lower legs. Ohhh myyyyyyy... I yelled for my daughter to rub my leg and I didn't know how to lay and she asked, where, where?? I was trying to grab my leg, hold my breath and tried to get enough breath to tell her where to rub.

    Another very bad thing with low potassium is your heart muscle. You see potassium is needed for muscles and the heart is one of the or maybe even THEE biggest muscle we have and the work it has to do, we don't want it to shut down or have a spasm. My mom was to have surgery one time and before they did the surgery, they check her blood levels that morning and we were glad they did right before the surgery. They had to postpone the surgery because they had to pull the IV and infuse the potassium in her big way. If she would have had the surgery under the conditions she was in, she would have had a heart attack, they said.

    So I only mention this to others that might be reading this that you need to be very careful when taking diuretics. I am now told to take potassium with the one diuretic a day not two. However, I still have the light headedness of which I do believe is due to the drop in blood pressure because of the diuretics. Here the doctors would try to tell me I had high blood pressure because of a couple of readings when I eat garlic and take diuretics. Noo chance of high blood pressure..haha. Then they turned around later on and said I had low blood pressure. Ha! Wish they would make up MY mind. lol

    So do be careful, MtnDews.

  9. sfd647

    sfd647 New Member

    Hey Haley,

    Thanks for the suggestion to watch the Discover Channel that I don't have (smile) to see about that 1/2 ton man. Yes, I don't have cabel but I did see something on the news about this man. He is living in a type of storage unit I think. He had been about 1000 lbs and has now lost about 200 lbs, I think. They didn't say anything about the dopamine because they only had a short segment on him but they said that he had not been out of that bed in 4 yrs? I can't remember but a veryyyy long time. How does he take care of himself? I can't even imagine not being able to get OUT of the bed. Can't wash up? Can't go to the bathroom? If you get sick, what happens? I mean I would think that sanitary is not the favorite word here. I really hurt for him but thought of me.

    You know when I lost all that other weight that time, I remember saying the words I hear so often others saying that lost a large amount of weight. That statement was: I am not EVER going to weight or go back to that again. Every here anyone say that? What you need to say is, "by the grace of God, I won't go back into that situation again." Reason being is that we NEVER want to but that doesn't mean we won't. THAT sure was my story and many other people's story. I remember this other man that Richard Simmons was helping that had lost much weight that he was in his dance exercise videos and now he weighs about 2 to 3 times MORE what he had lost. Richard was begging this man to try harder. He was there at the hospital trying to get him to do something in PT. Any kind of exercise. Just getting up in the walker was hard let alone just walking about 10 steps. Doing that was a major thing for him.

    I have said many times, I won't weight such and such and then I get to that amount and cry. Then I swear I won't weight in at another amount and boom, there I am, and I go deeper into depression again. It isn't that I am eating more and I know that it has to do with WHAT you eat but I know from where I was. To end up swelling up so bad really bothers me because I don't know how that can be with what I was eating compared to the other times that I was eating the same. I know that I have to do something but I can't be sure it will work. I know what to do, but will it move it down this time. They say it gets harder for your metabolism to do the job each time you lose and gain it and more back.

    Then the MG you talked about. I don't know much about that one. I have searched that one a little bit but didn't really move into it because you know how it is when you go searching. Pretty soon you get the feeling that all those shoes ( diagnosis A, B, C ) could fit you. You don't want to go and get your head all messed up with fear, ya know? You can't do the blood tests. You can't do the MRIs. etc, etc.

    Then very practically speaking, you get just plain tired of searcing and hoping and wondering when trying the new drug if this is going to move things finally. Then just to discover it was not the right medication needed for my situation as it was. I just don't know anymore.

    But like you, Haley, I hope and pray that I DON'T get THAT diagnosis of MG and having to deal with that one. Those things I am battling are enough for sure. However, I am seeing that the neurotransmitters seem to be a very area to become imbalanced because it will received the wrong signals and send the wrong messages out and then you have all these things including so much pain. I try so hard to over come the pain by concentrating on other things so that I can't "hear" the pain coming to the pain gate. This PAIN GATE knowledge was a good thing to become aware of. The brain cannot respond to two things at the same time. If it is feeling pain but then you start concentrating on another area whether you are meditating, doing some craft work, or ANYTHING that captures your mind, you will NOT feel that pain because the mind can't respond to more than one thing at a time. I have tried this and it has proven to be true. The psychologist I was seeing that told me about this in our sessions ( I was going for chronic pain not depression even though you do get depressed with pain, eh?). So I know try to pass it along to others. He said he could not guarantee he could get rid of the pain forever, but he could show me what to do to get some momentary relief. He was right. It does work that way. I was in prayer many times and just concentrating on the Lord so strong, that time flew by and I didn't feel the pain. Once that concentration was broke, there was the pain waiting at the gate (smile)to act upon. Then I got involved in doing crafts and was so mesmerized in what I was doing and enjoying it so much, that I didn't feel the pain like I had been but once I quit for the day, evening, or whatever, there was the pain again, standing at that gate again. So I pass THAT along as well to those who are reading this.

    Haley, as always, I so appreciate all you have shared with me via your search or coming from Nanjee (Nancy).

    I keep meeting so many of you that keep sharing your stories with me and I take one more piece of the puzzle to see if it fits or not. You just NEVER KNOW if that particular suggestion might be the right thing to go and inquire about with your doctor. Thanks all.

  10. sfd647

    sfd647 New Member

    Thanks Again Haley

    Ponticaf all you want. (smile) Thanks for that little tidbit. I have suffered most of my life. I have tried to fit into the "normal" box. I don't know WHY I have had a somewhat weight issue most of all my life. As a young girl, I was a little chunky but not real fat. When I was in junior high and then on into high school I would be so embarrased. It was bad enough around other girls my age looking good but then there was my gym teacher who didn't make it any better. I worked most of all my teenage years. I was busy and yet, I still had a weight issue of being about at least 25 lbs more than I should have been. My mom ALWAYS talked about losing weight. I head about diet about 24/day and 365/yr.

    After I got married, it got worse. It just did. I gave all the normal reasons why it went up but still didn't understand when I saw others that were thinner than me eat MORE than me and not be fat.

    I watched "my diet" later on at age 25 going to Weight Watchers. Lost 109 lbs. Got pregnant. Still maintained a decent weight during pregnancy. Kept most of all the weight off for a 5 yr stretch. Then watched it climb slowly up and up and up while I was getting busier and busier with the children with being a PTA president, still a Camp Fire Leader and VERY busy, doinog day care in my home with a lot of little munchkins (smile), doing Avon (walking door to door), involved in community affairs. NOW---HOW COME?!! I don't get it. I just DON'T get it. I have been emotionally active as well as physically active but yet OBESE and I do mean VERY OBESE. More than ever possible. I CRY ALOT over this thing. Thanks for that piece of news. All science wants to do it to cut your food suppy ( eat a better well balanced diet which of course is not bad) OR CUT your stomach so you don't FEEL hungry and then you WON'T EAT as much. All I can say to them is to "CUT IT OUT, FOR CRYING OUT LOUD!!" It is very hurtful not to feel like a person but some fat thing. I have value and worth. I have a mind. I am an empathetic person carrying burdens of others who are hurting that need someone to listen and talk to.

    When will obesity ever be thought of as a problem in the "system". Like other things that go wrong. Edema is the result of what? If you lose estrogen that causes others things to happen in your body, you do something to fill that area to where it should be. You HELP the metabolism. If you are depenished or overplenished in other areas in your body, they "fix it" by either supplementing it or counteracting it. But obesity? Well now, that one is easy---DON'T EAT!! No wonder anorexia lives in people. FAT needs to be taken out of our vocabulary. You see yourself as others see yourself many times. THEN you go overboard like in anorexia. I do understand it though. THOSE are people who are scared of gaining weight or being TOO HEAVY.


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