friday7

I have Hypothyroidism. I actually thought i had thyroid problems fro a while, but since my numbers were okay they said it wasn't that. Still i had a goiter and my numbers steadily got higher through the years until I was finally diagnosed about 2 years ago. I was diagnosed with POTS over five years ago. And CFS over ten years ago..Though I always suspected it was the thyroid way before I was diagnosed with anything. But Hypothyroidism was the last to be diagnosed..I still don't know if I'm getting properly treated for that, since my levels are on the rise again and so far the doctor doens't see it as a problem because the number s are still within normal.

Have you had you liver or kidneys checked..not that I want to worry you. I'm sure there's probably other things that can cause low levels of Albumin but my Dad has liver cirrhosis so that's the first thing i think of. He never drank or anything his was caused by a med that he had been on for Diabetes. I haven't any idea of how it would relate to POTS, unfortunately. Anyway I'm curious why the docs took the test and what they had to say about the low levels.

Ptalaura, You said you were on Restasis 2xday, Refresh liquigel up to 6xday, and a nighttime gel ointment . Are those all for your eyes? I'm wondering because I was on Restasis once a day but it didn't seem to help. In fact when i first put the drops in it would make them more dry. I kept trying it thinking that eventually it would get better but after a month it did not help. I'm wondering if maybe the other meds you mentioned could help. Did you get them from an eye doctor or a GP?

First I am not too surprised to see so many people with this illness having low temps. I too run low, about 96.5 on average. What I would like to know is how do you get the doctors to accept this. Is there some way to get this verified? Some way of getting this diagnosed, for lack of a better word. It is much like a diagnosis because if you tell someone I have thyroid disease, they are not going to take you seriously without a diagnosis. But with the low temp. No one takes it seriously. Which is a problem when you've got a fever. I can tell the doctor that I normally have a low temp and explain why, and how this is not uncommon with P.O.T.S. or CFS. and even when they say okay, they still say it's not a fever unless it's over 100 degrees. Well, how do you deal with that? Being that I normally run about 96.5, when I get to 98.6 I feel like I have a fever. Makes sense since if I had a normal temp of 98.6 I'd have a fever at 100.6 I keep thinking if you had some kind of paper signed by a doctor or something maybe they would then treat you according to your personal temp. But my problem is most of the time when I see a doctor I'm sick. I have an inner ear condition that is in need of surgery but until I can get that done, I have on again off again infections. So my temp is usually 97. something or 98. something when I see my GP..but it's usually lower than normal still..unless the infection is really really bad at that time. Still I would like to know if anyone has had it documented somehow and do you have a doctor that accepts that you feel you have a fever although your temp is lower than normal.

I was wondering if anyone has taken anything that has improved to only your ability to fall asleep but your ability to stay asleep. Or the quality of your sleep. From what I hear a lot of these problems we have can be due to lack of REM sleep. I had two sleep studies done and in both I hardly got and REM sleep. I had hoped a sleep specialist would be of help but they really only were looking for sleep apnea. Is there nothing you can do to improve your REM sleep?

If you had an allergy to mold that would also effect you. I often wonder whether I have hidden mold in my house...or under it. I live in a mobile home. Unfortunately I cannot afford to have anyone test or remove it.

Isn't that the worse thing. You were so sick and yet they look at you examine you and say you're fine!It's great that you found a doctor that understands. What I don't get is when you have something like POTS why doctors that have you as a patient won't do more research on it. You'd think they'd want to understand their patient..I understand they're busy but it's not that much trouble come here and do a little reading.It's just so frustrating.

Hi, Yeah I know it fluctuates. But this definitely is a fever. I can feel it. And most of the times when I get a temp of 98.3 or above I feel it. I agree that with the Dysautonomia we probably are more sensitive to it . That's 'the problem is trying to get a doctor that understands this. I do think I have a low grade infection. I often get infections that just linger for a few months. I feel lousy get slight fevers and yellow gunk coming out form my sinuses on and off but doctors don't "see" it till it gets so bad that I feel like dying that's why it would be helpful to have a doctor that understands POTS.

I just wanted to add like others have said that most people get turned down the first time..I got really hurt the first time I was turned down. I didn't have a lawyer though, I just reapplied. I'm not sure if my situation was different though. This was a while ago too so I don't remember most of the details. But my point is don't get upset about getting turned down it happens to everyone.

I was wondering if anyone else here has a low body temperature? My normal temp is about 96.8 So when I get a temp at 98.8 I feel like it's a fever. And I feel sick. Well it's about equal to a person with a 98.6 temp getting a fever of 100.6 The problem is if I go into the doctor with a temp over 100 they will treat it as a temp but if I go in with a temp of 98.8 they say it's fine. I explain that I have a normally low body temp. They listen , nod and then continue to tell me I don't have a fever. A fever is 100 plus..This doesn't make sense to me . If everyone has a different body temp(true most have a temp of 98.6 but not all) they say that only a temp of 100 or more is a fever. It's seems common sense to me if you have a lower normal temp then your fever would occur at a lower level too. but yet they continue to say a temp is 100 plus. Does this make sense? Meanwhile I've had a fever every day. I feel sick every day. I walk around with a wet cloth around my neck to keep it down, but I can't get any help. My doc just said take Tylenol to help keep it down..I feel like she was humoring me. I mean if I have a fever shouldnt' a doctor be trying to find out why, not just covering it up? What do you do when you have a normal body temp that's low and you have a fever. How do you get anyone to take it seriously.

Is there anything you can eat or that soothes you? I'm just thinking about when I had really bad IBS and everything I ate set me off. I wound up eating soup every day. I was so sick. I didn't care that it was the same thing every day until I felt better. Maybe there's something that doesn't set you off that you can eat for a while until things calm down? I'm just throwing out ideas here. I know what you mean..I have Hypoglycemia and sugar is in everything..and the corn oil and corn syrup is in everything. It's so hard when you're not feeling well and can't go shopping for yourself to look at the labels.

Glad to hear your getting some help with this. Hopefully it will be something easily treatable.

What forum is that? I think I was tested for Epstein Barr but that was about ten years ago. I'm not even sure if I was tested..I just know they tested for just about everything to rule out stuff and make the diagnosis of CFS. Is that something that is commonly tested? I mean I have Medicaid and they give you such a hard time when paying for anything, even more so lately ..plus the doctors don't like to do anything out of the norm. I'm just wondering if this is something that is commonly tested for when one is suspected of having CFs and is there anyplace "offical" that states that this is something that should be done for a CFS patient. If it's something even a little out of the norm I'm going to have to have something to back me up. Thanks for the link..Yes the hard part is getting doctors to take it seriously or just be interested in putting a little extra work into helping a patient. I know it's hard for them with all of the people they see but it would help so much if one of them would take the time to actually read the info I leave with them... Or come here at look at this site. I do know of a doctor who would definitely listen to this info but I have to pay out of pocket to see her and dont' have the money right now..But I am going to discuss it with her when I do get to see her. But anyway,I may have had a viral panel and been tested for Epstein Barr, but it's been so long since i was first diagnosed with CFS that I don't even remember what they tested. I am set for an appointment with the GP and supposed to have some tests run so I'll ask her about adding these. The fact that Dr. Lerner's research mentions weakening of the heart muscle is kind of scary.

Well for the first part, blood pooling looking the same as lupus erythema on the legs. I can't say for sure since I odn't know Lupus that well, but what you seem to be talking about is something that is on the skin and stays there. With the blood pooling, My feet look normal and then when I stand too long they will start to get red then maybe blueish and mottled in color.But as soon as I sit and lift my feet they return to normal. AS for the other stuff.Have you seen anyone since they first said it was dischidrotic excema? Have you gotten a second opinion, and have you seen anyone lately since more symptoms are buliding up? Maybe you have more info for them now that may help in a diagnosis. Since it happened right after going to Dubai I'm wondering if it's something you caught there. What have your doctors tested you for, if anything? Have you ever been tested for Lupus? Sorry I can't be of much help. I hope you find out what's going on.

I take Mucinex. In fact I just took one. But everyone's different so I can't say for sure how it'll effect you. But for me it's not problem.

I know this isn't a CFS forum but I was first diagnosed with CFS and then POTS and since the two share so many symptoms I'm never sure whether I have both , whether the POTS is actually what I have and not CFS or whether CFS is just undiagnosed POTS ..it gets very confusing. SO I read up on what's going on in CFS sometimes because anything they found to help that could also help people with POTS. ANyway, I often thought I probably have a low grade infection in my system, or virus that kind of flies under the radar and once in a while when it gets bad enough the doctors see it, I get treated, it gets better but doens't completely go away.It just stays and make me feel lousy on and off until it gets bad enough and they treat it again. I saw a doctor once who actually said this to me which made me feel a little better to know that a medical professional was thinking the same way I was . Unfortunately I can't see her anymore but that's besides the point. ANyway it seems this article below is talking about something similar to this and I was just wondering if anyone knows if there has been any further studies done since this is dated 1998: http://researchnews.osu.edu/archive/cfs.htm Sorry if my words are a little unclear but I have really heavy brain fog today and ,well It's just one of those days when you're not sure if you're explaining things right so excuse me if i"m not clear. ALso has anyone else had a similar experience with frequent infections, viruses or a lowered immune system..like do you get colds easily and then take forever to get rid of them. Or does it turn into an infection after having a cold or a while. I almost always get a bacterial infection following a cold since I have the colds for so long. Is there anything you do to boost your immune system?

Thanks for you answer. As I mention in an earlier post ,I have talked to her and she did put some of my fears to rest. I am still concerned. Maybe I can ask her about seeing her doctor about an antidepressant. Even if she isn't depressed as she said, she is very stressed and that would help with that.

Thanks so much for your reply. Although I wish you didn't have to deal with what you're dealing with it does help to hear someone says they are dealing with a similar situation. I had problems with social anxiety and depression when I was a kid. And even though I got out of that , I never learned to form close relationships as an adult. That's why getting sick was so hard on me. I have enough trouble with people, never mind being sick on top of it. I was just at a point in my life where I was able to get out and socialize and start dating. and then I got sick. I always wish I had a few more years before I got sick. Maybe I would have had some people in my life other than my family to turn to. But nothing I can do about that. thanks again for your words. Sometimes I feel like everyone has this family and friends around them and I'm the only one alone. I know that's not true but it helps to hear directly from someone that is dealing with being sick and have a situation similar to mine.

thanks for your reply. And the cyber hug. I had a talk with my Mom yesterday. It started out as usual with her resisting and me getting frustrated and angry. But I stopped myself from trying to pour out my emotions to her and got through to her that I was worried about what she had said. She said that she felt that way sometimes but not most of the time. She's had a hard year not just because my father passed away but also we've been having real money troubles and she's been stressed out about that. She said she's not really depressed, she was just fed up with everything last night. I do believe that. I also would like her to get some therapy because she is really stressed, and even if she just gets overwhelmed and not depressed. I still think it would do her good. The thing is what would help he with the stress is if she didn't have to deal with me. See she's been taking care of everyone her whole life and now she's just older and not up to it. She doens't have the patience and she has her own problems. So when I'm feeling bad and needing her she's feeling bad and needing time alone. it's a tough situation for both of us. I'm used to going to her when I need someone to lean on. Or someone to yell at...I'm being brutally honest. I have taken things out on her. i'm not proud of that. But the thing is she's always put up with that. It's definitely a codependent relationship. I"m not happy about that. It just is. I see it' s time for change But change is hard. Especially after 44 years. And my brother would be a good person to turn but I've been worried about him also. I know it sounds like I'm stuff making this up.LOL He was recently talking about how his OCD has gotten worse. I had just found out this past year he had OCD at all. One good thing though is that he himself actually talked about maybe getting help, which is something. It's difficult for me to turn to others for support also. In places like this even though everyone is really nice I tend to hold back. The thing is I am alone and it scares me. I know I'm not totally alone but I also know that I'm going to lose my Mom one day.( Unless I go first.) And it really scares me. I kind of think maybe this is a good thing that my Mom can't handle things anymore because it is making me deal with things myself which eventually I will have to do. At least it's not a shock like when someone dies but it' still so hard. If I were healthy and able to get out and things would be easier, maybe I could find a support system , but if I were healthy then I wouldn't need so much support either..it's a catch 22. I like your idea about the free group therapy groups. There's only one I know of in this area. I tried it a few years ago but wasn't crazy about it. But then again. It is something. And like you said I don't have to worry about them closing my case. thanks so much for your support. It does help.

I'm 44 and living with my mother who is 76. My father passed away last Christmas. My brother passed away nine years ago this January. My other brother lives nearby but I see him once a week..If i'm lucky. Sometimes he doens't come over and I don't see him for a few weeks. He'll drive by and say hi, help take out the trash but not stay. I can not work. I had no close friends before I got sick so I don't have any now. I was dating when I got sick but that stopped soon after so no boyfriend, no husband no kids. So I do not have my own family, and I can't get out and socialize because i'm too sick to go out most of the time. When I do feel well enough to go out I can't really make connections. I can't make plans. Nobody understands that. I was going to a support group for women. It wasn't exactly what I would like in a group but it was at least something. I missed too many meetings due to being sick and so I can not go back because they closed my case. I can go through an interview and have them reopen the case but I still don't feel up to that right now. I odn't want to go through all of that with my current situation because I have an infection that is not going away even after antibiotics. My mother used to be the person I turned to when I was feeling bad. But now she's changed. She's older I get that. She went through a lot when my Dad was sick. But it's really hard because she's the only one left in my life. I try to talk to her and she shows no compassion anymore. Again I get that. She's tired. But it doens't make it any easier to deal with. I feel totally alone. I get sick and depressed and want someone to turn to and no one is there. We fight all of the time. I guess because I'm hurt with what seems like her lack of compassion and I'm dealing with yet another loss in my life. It's like she' s there but she's not. Normally if I felt like this about someone, she would be the person I would talk to about that. But I can't. I have a therapist.( we talk over the phone) But I can only talk to her once a week for 45 minutes.Sometimes I don't get to talk to her either because she has to cancel.It's not enough. My mother told me last night she really doesn't care about life anyone. She'd just like to read a good book or watch a movie and the only reason she finds any reason to be hear is because of me. She said she wasn't depressed, she just didn't care anymore. To hear this made me feel bad. But I tried to tell her this and she started running out of the room. She doesn't want any confrontation of any kind. My reaction to having her tell me she just doens't care about life anymore is the get help, change that. But she doens't want that. If I say that to her she gets upset. I've been asking her to go to therapy with me for years but she won't go. She thinks as long as we don't talk about our feelings, everything is okay. then she'd be happy. I guess that's true in a way. She doesn't want to argue and whenever we talk about our issues we fight. But that's why I wanted to go to therapy. So that we could do it productively.She doens't understand that, or is afraid of it.I dont' know. She says she doesn't want to argue. I get that but yet any discussion of feelings brings up an argument because she doens't want to talk about feelings. She said after she came from church today she prayed we wouldn't' argue. So I have to keep any feelings I have to myself because any discussion of feelings brings on an argument. I started to cry . She told me dont' cry. She always tells me not to cry whenever I do. To her it's just making things worse.She doens't understand I cry to get my feelings out. It's really hard because she was always the person that everyone came to with their problems. I know that can overburden a person. But what do you do when you've done that you're whole life and then that person just goes away. It's hard to deal with a change in her personality on top of everything else. I know it's sounds bad. I'm an adult I should not have to depend on Mommy. But I'm stuck. I have no one else. It scares me.I think in the future I will truly have no one else. I hate the thought of the future. I hate the thought of having to live in some group home or something like that. So it' s really hard to shove my feelings under the rug in order to make my Mom happy. And it's really hard when the person that always gave you so much empathy and compassion seems to just not care anymore. Is annoyed by you. I know this is something I have to deal with, but it's so hard doing it alone. I have a hard time getting close to people. So it's hard to see any future where I'm going to have anyone in my life. It's hard enough for me to get close to people if I was well. Being sick just makes it ten times harder.I wish I could go out and find someone new and take some of the burden off of my Mom but it's not possible. I usually never write like this either for fear of people not understanding. I'm debating whether to hit the enter button. I wrote this out maybe it's enough. But then again I'm just keeping my feelings to myself then and that's exactly what I don't want to do. So here goes..

You said you found the doctor who just accepted you as a patient through word of mouth. But prior to being accepted you did all of this work calling docs and asking questions. Did you find anything of any value by calling around?

You took the words out of my mouth. I've been seeing one doctor after another and none of them even knows what POTS is. I've also been going through this for a number of years and I'm on Medicaid. I am getting quite sick not being treated as a POTS patient. I have a real illness that is totally being ignored. Sorry I can't be of any help to you other than saying I know how you feel and I want a good doctor, damnit!

I had episodes twice when all of my electrolytes dropped. The second time it was really bad and I wound up in the hospital for three days, and it had the docs puzzled. I just figured it had to do with the POTS since I know that salt levels tend to run low. But since then I take 6 buffered salt tablets. in addition to adding a ton of salt to my food. And that keeps the sodium just about normal. And I take Magnesium tablets. I haven't had any drops in my Mag. levels if I stop, but I got restless leg syndrome so I started taking them again and it helped that. I guess, according to the post above, that could be helping my Potassium as well. I used to take potassium tablets when I first had the drop in electrolytes but after that my doctor said just to eat bananas a few times a week. and that seemed to be enough for me to keep it level because it hasn't bee low since then. Like I said I just thought it had to do with the POTS. The doctors seemed satisfied with the fact that my levels returned to normal and as long as they were they weren't looking into it further. Maybe you can add salt tablets and potassium tablets. I know you have to be careful with the potassium because if you overdo it it can cause an overdose that'll give you similar symptoms to being very low..so you dont want that. But if it's low it's obvious you need something. I guess it's something that you have to talk to your doc about and make sure he checks you levels often if you start a potassium supplement. Or Maybe try eating bananas like me and see if that helps.

Sorry to steer this thread in a little direction but ,I always wondered it works to go to a place like Mayo. You get a treatment plan and take that to your own doctor? How do you know they will follow the plan? Also if you're out of your state does you insurance pay for Mayo?

It's true what makes being sick much worse is the lack of understanding from other people. I think if others understood it would make things so much easier on us. I think meditation is helpful. I'm new to it and it does not come easy to me, in fact it's the opposite of what I normally do. I'm a bit of an obsessive thinker, but it's something I need to practice. Again it's not something that's highly valued in our world..Well at least in the US. I even had a therapist who I talked to about Zen and mindfulness and she said how most people couldn't meditate all day..I was like Wow she knows nothing about it. You'd think at least therapists would understand.