friday

Do your legs feel tight, like they are swelling? Mine do...I feel it as pressure mostly. like a swelling feeling. If I stand still long enough, I would get all kinds of zips an zaps, pins an needles, pain. but I don't stand still for very long anymore.

Glad to hear what happened. at least she accepted your criticisms ..although you seem to think she wasn't happy about the literature..she should be interested in reading it though being that she is talking to a person who has this problem. But like you said, see how she is after this...Good Going! Susan

Well, the thing is I'm on Medicaid. so the physical therapy they pay for isn't very helpful. I mean I went for fibromyalgia and it was basically once a week she would show me how to lift a box and stuff like that. It was 5 weeks of that. LOL I dno't know though it was a few years back. I was still working then..it might be worth trying again. But I think I can try to do a little walking here and there. I was thinking instead of trying to walk in one direction I could walk one way for a few minutes then come back to the house and then if I feel good walk in another direction.. And just make sure I don't overdo it. I have a problem with that. I try to do too much when I feel good and then I feel bad.. thanks, Susan

Y'know that's part of it right there. I feel like the 'what if" is controlling me. I have lot of good times but I'm afraid of the bad ones. Permission to try is a good point. I have a hard time when it comes to making plans with people because they get disappointed and then I feel guilty. I suppose that's something I have to learn not to do to myself I do have the fear controlling me. it' s hard I've felt like I lost control a while ago. I suppose there were times when I was feeling sick or faint and told people and they didn't respond well. One place was in a depression group ( which didn't really fit me but that's besides the point) and I felt so sick and wanted to lay down and they wouldn't' let me use a couch because it was not permitted to lay on the couches. So I had to wait for them to clear the room for me. I was so upset by this, I didn't go back... it was horrible sitting in that chair while feeling so sick and scared Especially when I knew if I laid down it would ease the symptoms right away. And worst of all I felt no one understood or maybe didn't even believe me. I think now I would just say **** with it and say "I have to lay down and just lay on the couch" and just do it. I guess that's part of taking control. I'm sick and I deserve the help I need. I suppose years of doctors telling me it' s in your head or it' s not that bad and they had no clue what was wrong with me. I've had so many doctors, and just people dismiss my symptoms, and literally say ..well you just have to push yourself harder. Good idea then I'll actually pass out. maybe then you'll believe me.LOL I guess I'm afraid most o f the time that I won't find any support if I wind up sick out there. So, this is something I have to work on. I was wondering myself if I might tell people I was teaching that I have this illness and I may not be able to show up every time. I am actually just thinking of doing this for free so it s not like they are paying costumers. To tell you the truth that would make me feel best. To have people know I am sick and accept me the way I am. Not expect me to do what they can. I guess I have a hard time owning my illness. sometime I don't want people to think I'm a whiner or hypochondriac. And i try to be as little trouble as possible. Hurting myself in the process. Thanks you for your help. I think I have some work to do on this but I like how you wrote about taking control. I would like to feel that way. thanks again.=o) Susan

aw, thanks, that helps too.;o) Susan

A word of caution on Effexor. I was on it and another depression med..don't ask me why they gave me two at once. at this time I seeing a lot of specialists and was on a lot of pills. no one was really checking them all out and I foolishly trusted my doctors. anyway, after a night of being sick I wound up in the ER, my electrolytes had plummeted. I was half conscious when I got there,and was in for three days. the doctors there seemed to think the pills were the culprit. they took me off of everything! They told me that both antidepressants I was on could lower your salt level. the doctor there seemed to think since I already had a salt deficiency I shouldn't have been prescribed these meds. but of course most docs don't' know about pots and just assumed it was alright. The thing is like I said it was two of these meds I was on not just Effexor. But it does say on it's site that it can lower salt..so just be careful and aware. You may just need check on your sodium levels to see if it is effecting them and if it is you might be able to take them and just increase your salt intake, in my case I had no clue so I didn't . Plus it was dumb of them to put my on too similar meds. needless to say I'm very careful l with my meds and my doctors these days. I don't' trust anyone blindly anymore, and make sure everything from all docs that I see is going to my gp. then I double check it myself.

I almost feel like i'm asking a question know on will know how to answer but, I am doing okay..but I am not well. I havn' t really been on any meds lately. I've just been taking lot s and lots of salt. I am doing okay,.my Bp has gone up . used to be very low now , but now around 110 average. I don't faint or haven't had really really bad eps lately, no hospitals stays or anything. But I would like to feel better. To do what the "normals' do. At last a little but, I still can't walk very far, and have to use a chair sometimes, and I can't really go too far from my home. I can't do any kind of job or even volunteer job. It's a victory to be able to go out to the movies once in a while, Some days I'm able to do a little around the house and play frisbee with my dog outside but I just feel if I could be a little stronger if I could have a little more strength and could do a little more I would be happy. I just spend too much time alone like this. the things is I'm mostly on my own. I do not have a husband or kids, the only friend I have is too far away to drive to most days, and he can' t drive here cause he doesn' t have a car. I live with two elderly parents. One of whom is sick and the other is busy taking care of him. So, my world is pretty small without being able to get out. And to get out I need to be able to drive and to feel well enough to either walk a while or wheel my own chair. I want to be able to join a class or something. but I can't afford to spend to money and then not be able to show up half the time. I have thought of staring a group of my own in the clubhouse we have here. Maybe teach people to paint. But again you can' t start a class if you don't know when you'll make it there and when you'll be sick. Has anyone found anything particularly helpful that you felt gave you strength and stamina ..like I said my bp is already pretty good. So I don't know if meds like Florinef and things to raise the bp will do any good for me...But I want to feel better. any ideas?? Not just meds but anything that helps. Susan

This is the second answer that has Epogen listed. What kind of med is that? Susan

So, when you say as needed how often and why would that be. I'm just wondering if is ever given to patients, say weekly to improve their POTS symptoms.. or is it just given in an emergency state. In my case I have a lot of trouble going places because I don't know if I'll be able to get back. In other words I'll feel alright to drive but there' s no guarantees I'll be able to get back home...so needless to say, I don't get out much at all. also when I do get out. I can't go many places.I sometimes get the strength up to go to the dollar store or drug store places like that. but sometimes I have to take a wheelchair. even then I have t o fell well enough to push myself around. And then well enough to get the chair back into the van... I haven't been to the mall in years. I don't have anyone to drive me places really. and I don't have anyone to push me in a wheelchair , so I am really stuck. I wish I could have just a little more strength and endurance.

I definitely think it' s all related. Thanks for the book info. I cant see how I went from never being sick to having all these things pop up one after another. I had a lot of that too. I found was figuring out stuff before the doctors and then presenting that to them. iT's frustrating but they just don't' have time to really look at unusual cases with the attention they deserve.

thanks, that helps a lot!

Just wondering if anyone is or has tried the IV saline treatment. I know it requires a trip to the docs office or hospital, and it 's probably not cheap but I thought some here may have tried it. I was wondering if you did , how did it make you feel? Did it help? And if you are still doing it, How are you receiving treatment? Going to your docs office? How often?

I have P.O.T.S. C.F.S., I.B.S., P.C.O.S., Hypoglycemia, fibromyalgia, I had veeeery irregular and painful periods prior to having my ovaries removed, I also had anemia now being treated by iron pills, chronic sinusitis..im probably missing some.lol But i really think there is a connection to all of this and my hormones. I never had a problems with my health up up until about 8 years ago. Coincidentally this was the year my cycle changed from a normal 25 day cycle with a little PMS prior to bleeding for 5 days , To a 21 day , or 17 day, skipped a month, PMS from ****, 3 day, painful sort of a period. Ever since then I have piling up more and more health problems. Now it could be something else causing all of this I don't know. But it does seem that hormones have cause the most trouble for me. It has at the very least made things worse. This is just me of course others might not have the same things going on.

Just wondering if you have ever noticed excess gas with this feeling? I have times of pressure and difficulty breathing and a lot of the time I find I will have gas. Even if it is not noticeable at first, later on..there it is. So I usually take an antacid when I start to feel like that. May not be your problem, but thought I'd mention it as something to look for.

I find this link between hormones and POTS very interesting because I don't really think doctors who treat CFS and POTS don't necessarily look at the link between these two and women's hormonal shifts. What I mean is I have seen a doctor for CFS and POTS treatment, and he's a good well known doctor, and yet, he says to go to a gyno for my hormonal problems ..yet the Gyno knows nothing of POTS.. They are both treating them as separate issues.. Doesn't it makes sense that the two should be looked at together? Especially since it the majority of CFS and POTS patients are women. I feel like if the doctors that are studying POTS and CFS aren't including research into women's hormones they are missing part of the picture. I could be wrong there could be studies on this subject but I don't really see it. If anyone does see any studies like this please post a link to it.

Did you take any HRT's or estrogen replacement? I've heard of the book . I will have to check the libraries for it. Why are we screaming to be heard? And why are so few hearing us?? Why are sooo many women suffering with hormonal issues and doctors don't really know much about it.

Okay I did a little searching last night and I did find quite a few places that said " Estrogen enhances salt and water retention while progesterone is a natural diuretic". quoted from: http://www.drlam.com/A3R_brief_in_doc_form...n_Dominance.cfm and: http://lammd.com/A3R_brief_in_doc_format/p...e.cfm#Functions So that would make sense that Progesterone could cause a low BP. If you lose salt, you're BP lowers. I also found a few places that had something to say about the two them together: "Elevated progesterone and estrogen levels cause blood volume and cardiac output to increase; as a result, pulmonary blood flow increases. ..." quoted from: http://www.medscape.com/viewarticle/524442_5 "Elevated progesterone and estrogen levels cause blood volume and cardiac output to increase; as a result, pulmonary blood flow increases." But many people praise estrogen's vascular benefits on the basis of tests showing increased blood velocity in large arteries such as the aorta, without evidence that more blood is being circulated. With aging, as arteries become constricted, increased blood velocity is taken as evidence of the pathology. Velocity measurements have to be interpreted in the contexts of tissue perfusion, cardiac output, etc. When the diameter of the artery is considered along with the velocity of the blood, the volume of flow can be determined, and then it appears that progesterone increases blood flow, while estrogen can decrease it. [Dickey and Hower, 1996.] quoted from: http://raypeat.com/articles/aging/aging-es...gesterone.shtml So I'm gonna have to read more on this blood flow stuff. there was also an article on how estrogen/Progesterone works on the stroke rate of the heart which effects the blood flow/volume. I am not feeling well enough to absorb this stuff right now, and a lot of the papers that mention blow flow have a lot of medical jargon in them so I am really not up to that right now. So maybe I will bring some to my CFS doc next time I see her and maybe she can make sense of it for me. I know a lot of this stuff is not set in concrete. Just like some people are for HRT's and some against. It gets confusing. But it does seem there are quite a few sites that say Estrogen enhances salt and water retention while progesterone is a natural diuretic..just as plainly as that. Hope I didn't just confuse things more. I definitely want to research this further though since I feel my periods were having a huge effect on how I felt. Now after an oopherectomy ( removal of the ovaries) I am feeling better in that I don't have that horrible plunge every month. And I dont' have the horrible PMDD , and pain, but I feel just generally a bit weaker all through the whole month. So I'm considering if I should get Estrogen replacement therapy. My doctor had mentioned Progesterone and I think now in my case I have to be careful of that. might not be the best choice for someone with P.O.T.S. It's difficult because most GYno's have no idea what P.O.T.S. is. thanks for bringing up that reaction you had to the Progesterone.

Well , I think this is definitely something you need to address with your therapist. If you can't talk to her about what you're feeling,. what good does it do you? You said it best to us right here..only say it to her, "when she (you) ask me whether I'm taking a good multi-vitamin, I feel like she (you) don't understand the severity of our fatigue." "I feel like her(your)question implies that I'm worrying myself into a tachycardia spell, which isn't right and not what I need to hear. " And you can bring some P.O.T.S. information to educate her. if she hasn't been exposed to any solid information about P.O.T.S. it might be why she just doesn't get it yet. I am lucky to have a great therapist. And I had seen her prior to getting sick physically so she knows me pretty well. Yet sometimes she says things that make me feel as if she isn't getting that it's physical. I kind of understand since POTS Isn't a common illness. But even so, I think if I was Diabetic and had problems from that, she'd probably check out whet what I was feeling was coming from an emotional place sometimes, or if emotional stuff was worsening the symptoms. The thing is when I feel like she is not understanding it's physical, I have to tell her. I feel that If she says anything, regardless of whether or not it has to do with my illness, that's making me feel bad or like she doesn't understand I need to tell her. That's part of our relationship. You might want to ask her point blank as to whether she thinks that your emotions are the cause of your problems. Not in a nasty way but just to know exactly where she stands. Ask her if she understands how debilitating it is for you. Tell her It' s important that you know she believes you are physically ill, because you are. And you need the support any person with a physical illness would need. If she doesn't get all of this and doesn't' like you telling her how it feels when she says certain things, she may not be the right therapist for you. I know I couldn't stand it if my therapist said something that bothered me and I couldn't' tell her about it. It's not always easy to get it out but I do it assertively, not blaming, just telling her how I feel. And I probably do this every week. LOL because I'm so sensitive. She understands that. But try to talk it about with her. Give her some good info, especially stuff that describes how debilitating this illness can be. And if you do have symptoms that are easily presentable show them to her. If you have a heart rate that speeds up 20 to 30 beats immediately upon standing show that to her. If blood pools in your legs and they turn colors after few minutes of standing still, show that to her. I did that with my GP and it made an impression. He got that it wasn't in my head, when he could see my feet turning colors. Good Luck

I don't' know. I would say the dizziness might be a side effect of the pill but the low BP..makes me wonder. I'm going to see if I can find anything on Progesterone and blood volume etc.

Well I like your second choice e of words here better. "A person who is mentally ill". That does not mean crazy. There are plenty of people who have gone into a hospital for mental health issue and they are not crazy. Even if you had emotional problems that produced physical symptoms, (which you don't ..you've been diagnosed with P.O.T.S.! )you would not be crazy or a nut job. And thinking that way just lowers your self esteem. I understand what you are saying though. You are having trouble convincing yourself that this is real. That you really are sick. I know I doubt myself sometimes because I had problems with depression and anxiety in the past, and even thought I felt better I still took an antidepressant. So as soon as a doctor would see I was on an antidepressant he would assume my physical symptoms were all in my head. I went through this for years. A lot of us have. I'm not even on those drugs now but still the docs always want to blame what they don't' understand on depression or anxiety. Then I will question my symptoms. Am I having trouble breathing because of the POTS or anxiety? Now after years of therapy I know myself pretty well and I know the physical symptoms are not related to whether or not I'm anxious. . However years of other people telling me how I feel has messed with my head. it's hard not to doubt yourself. Then you have well meaning people giving you advice when they don't' fully understand or fully believe, how sick you are. Then I do a reality check. These people are functioning normally and talking about minor physical symptoms. I have had times when was so weak I couldn't get out of bed. I've been to the ER, in the hospital twice for three days. Would the hospital keep someone who wasn't sick in for three days? Noooo. And my Insurance wouldn't pay for it.! I have nights that I feel so sick , the kind of sick I wouldn't wish on my worst enemy. I have to remind myself of this. I have to listen to the rational side of me. There is a part of me that knows exactly what is what. Everyone has that part. It's learning to listen to it that's difficult. It's a process. Especially if you've gone through a few years of thinking it was all in your head. Some have mentioned cognitive therapy. And you say you have therapist so that's good. It might take time but you have to try to reframe your thoughts. first you have to be aware of your thoughts. that's step one. Catch yourself when your hear the negative thoughts and try to remind yourself then of all of the evidence that points to your illness being physical. There's a good book called "Feeling Good." it's meant for depression, but basically its a book on 'cognitive therapy". It's a workbook too if you want to use it that way. it can be very helpful even if you are not in a depression, for straighting out those distorted thoughts.

I am having problems with hormones , and I was just reading about the subject, and came across this sentence....."Estrogen can also promote sodium (salt) and water retention, increasing blood volume" I was just wondering if anyone had their estrogen levels checked to see if they were low..possibly causing or adding to the low blood volume. Or if possibly adding estrogen could help your blood volume? it's just a shot in the dark but I just saw that it can help with retaining salt and water and was wondering if this information could be of any benefit. i realize hormones are not to be played around with but the connection to blood volume got me, and I recall some women her saying they got POTS after Menopause which would effect the estrogen levels.

I was wondering if there is any new information about POTS symptoms from Dr. Bell's studies on CFS. Last I heard he was doing studies on the blood volume and I was wondering if there was any useful information that this had turned up in regards to treatment for POTS patients. I had heard a while ago that he was doing studies about treating people with an IV saline solution, and was wondering if this was really helpful. although i guess my insurance wouldn't want to pay for it, i would still be interested in hearing if this has helped people.

thanks to all who answered. I find this helpful. at least I know that there does seem to be a connection. See I was asking the wrong people..doctors.;p anyway, it's interesting how some of you mentioned that you have gas prior to the episode. i always thought of it coming from the episode but now I'm wondering if there might be a GI problem proceeding the event. I've never noticed it but I now i will be aware of it and see if i might have had signs prior to an episode.(sorry don't know what else to call it.) I'm wondering if any doctors that do studies like Dr. Bell have looked at this issue. thanks again All. susan

I noticed that when i have a really bad time with POTS when I feel like fainting or weak etc after walking . Almost every time afterwards or even during I get bad gas. It seem to build up in my limbs as I am walking..I get that feeling of bloatedness or pressure. Or sometimes later on . I'll just get very bad gas and it will continue through the night. Now I told the doc about this but not being a POTS doc he couldn't see that gas could be caused by waking. Usually it is relieved by walking.. He's looking at it as a gas problem but i'm wondering if the gas ins the result of something else that is happening when I walk. Whatever is happening to produce the POTS symptoms . I was just wondering if anyone else has noticed this. Having a bad gastrointestinal feeling after a bad POTS day..or even if you've noticed a feeling of bloating or fullness and pressure in the limbs...seems like there is definitely a connection in my case and i' just trying to find out why.

Well one good thing is the link to CFS. They have started a CFS Awareness campain. I just saw a brief spot about it on the news. I heard they are supposed to have a full page ad in People mag. this month. They have done reasearch in the name of CFS on symptoms that are POTS related, like orthostatic hypotension, so maybe POTS will be mentioned more often if CFS gets more attention. babu.