marshallgurl

I also have to vote "yes" for getting the flu shot. My Cardiologist highly recommends it so I've been getting it every year since my initial diagnosis.

I have suffered from the burning sunburn like pain in my legs for years now, at least I know i'm not the only one. And Friday7, I know exactly how you feel about not knowing where to turn. I see a Cardiologist for my Tachycardia but there doesn't seem to be anyone else who has any clue what POTS or Dysautonomia is, and that makes it very difficult to deal with the issues that we have when there is no one to go to for them. I have finally had enough of being run around in circles from one doctor to the next, so now I'm going through the list of providers on the Dinet site to find someone to go to that isn't too far from where I live. I wish you the best and hope that you find some answers to your questions, since I didn't manage to answer any of them in my response.

That's a good catch on the 2-8 weeks thing. I am pretty sure that I was diagnosed sometime in 2004, so going on 4 years now. That makes me wonder if the pain is still considered to be costochondritis if there is no swelling. I've been told many times over the last few years that that is what I had/have, and that is why my chest will hurt as often as it does, so that I won't freak out and think i'm having a heart attack. I'm going to ask about it going away on its own, I never gave it much thought before now. I can at least say that I don't currently have any pain and haven't really had any lately, at least nothing to bother me too bad. I do recommend more than one opinion, nothing against my PCM but with these kinds of problems I like to know that I am getting as much info as I can. So I would make sure to ask more than one Doc. just to be as informed as you can be. I wish you the best and if there is anything else I can tell you just let me know. Sarah

Well, as far as the relation to POTS I have no clue, But I also have costochondritis and it ***** most of the time. When first diagnosed I was taking 800mg of Ibuprofen 3x a day but have since stopped this. It helped a little but not enough to really make a difference and after the prolonged use of this Med I now have a lot of problems with constant pain. I was recently diagnosed with advanced arthritis in my back and leg and the Ibuprofen doesn't help anymore, doc said it was because my body is too used to the drug so it doesn't work properly (or something like that). This excerpt is from WebMD- Costochondritis does not lend itself to diagnosis by tests. Personal history and physical exam are the mainstays of diagnosis. Tests however are sometimes used to rule out other conditions that can have similar symptoms but are more dangerous, such as heart disease. For me, I had several chest X-rays, basically 1 every 3 months for a year; My Cardio at the time did a lot of poking to find the specific location of pain which was also the site of most of the swelling; We also did several other Cardio-related tests and he said that there was evidence of swelling. I hope this helps a little, it isn't much info but I don know what you are going through and it definitely *****. I don't really do anything specific to treat the problem, I just try to avoid things that I know will make it worse (like letting my 20lb cat lie on my chest). I take Ibuprofen ONLY if I need it bad enough, like you have said, I would like to not cause any damage to my liver.

I hate to say it but he didn't even seem interested in treating me. He checked the reflexes in my arm and lower legs, had me sit/stand/lie down to check blood pressure, and looked in my eyes with the lights on and off. But that is all he did. The whole appt lasted less than 30 minutes, and honestly, at this point, i'm so tired of Doc's who don't seem to be interested that I can't wait to leave their office. I'm sure everyone goes through this at times but sometimes I just want to give up, like there is no hope in knowing what is wrong with me, just deal with it and move on. I just don't know what to do anymore.

I'm waiting to find out if there is anything that can be done to try and get me a specialist, and I don't care where they are either. Saw a Neurologist on Friday, he says I don't have a neurological problem. But he did tell me that my blood pressure is good, stays the same whether standing, sitting, or lying down......i'm no doctor but I think that would be because of the blood pressure meds i've been on for the past 3 years..... But I will keep lookin and keep trying, i'm not going to give up no matter how bad I feel. And actually I think that my not feeling any better is even more motivation for me to find someone. Thanks for all your help.

Thank you all for your replies. Melissa, I didn't even think about trying to request an autonomic specialist but I am going to see if I can figure out how to do that while I am there on Friday. So far to see a specialist you have to have a "reason" and a referral from your primary physician, or at least that is how I have had to go about it so far. The "reason" has to be a valid medical reason, not that Autonomic problems aren't valid but they aren't very well known yet so I will keep my fingers crossed that someone up there will help me out. I'm also going to suggest to a few doctors that I know pretty well that it would be in the best interest to them as well as other patients to at least familiarize yourself with Autonomic Disorders. So thanks for responding and it is tough, mentally and physically and from personal experience having been told that I was making it all up it sure takes a toll on every aspect of your life. Masumeh, Sorry I wasn't very specific as to what hospital, when I wrote VA Hospital I meant Veteran's Area Medical Center (VAMC). I am located in southern West Virginia and have actually looked at the DINET site at Doc's in surrounding states and because of my location the closest facility is at least 4 hours away and that is in Ohio. But thanks for the info, if the VA is willing to pay for me to go to an oustide facility then i'm going to suggest as many as I can if people say they have great doctors.

So it has been a while since I have been on the website let alone in the forum posting, but some recently developed issues have got me at wits end and I figured it is time to ask for help. My main problem/concern is medical care. I am a Disabled Veteran so I go to a VA Hosp for all treatment. Since I started being seen at my local VA in late 2005 I have changed doctors several times. I am now on my 6th Cardiologist and each one had different opinions about Dysautonomia, that is the ones that had ever heard of it. I saw a Neurologist about 6 months ago and have a follow-up appointment this Friday, but he says my problems are not Neurological. So here is where I am extremely frustrated, Cardio's have no clue what i'm talking about and Neuro's say it isn't their problem. I feel like crap, i'm sick half the time, exhausted, and I don't know what to do. At least they aren't telling me that it's "all in your head". Well, thank you all for listening/reading, any comments/suggestions/advice would be great. I hope that everyone else is doing well, even if we are all "sick" in a way.

Well, I have an MRI scheduled for this Monday, April 14. And I have a bottle of Biofreeze - my cousin is a chiropractor and he gave it to me - and I am like Nina, I can't take anti-inflammatories much anymore, I have been on them for years and they pretty much don't work. The Biofreeze doesn't seem to help where I have been using it, it helps on my neck but not around my sciatic area, but the Tramadol and Flexeril help enough so that I can get comfy and get some sleep.

Thanks everyone for your thoughts and advice. I saw my PCM yesterday (Monday) and he wants me to have an MRI done, cause for some reason I have managed to make it from getting hurt in 2001 until now without having one done. He put me on Ultram and Flexeril and so far I am tolerating them well, I was a little worried about the Ultram at first because it is new to me. But hopefully the MRI won't take too long to get scheduled, but since it is going to be done by an outside facility, there is nothing I can do but wait for them to call. We are leaning towards Sciatica because we know I pinched my sciatic nerve, but in my doctor's words "let's just hope that it isn't as bad as I think it is", but he doesn't want to worry me by speculating as to how "bad" he thinks it is. So for now I will take the meds and get a little relief, he put me on the muscle relaxer because I have been taking about 1600mg of Motrin a day for the last couple of years, and he wanted to get me off of that for a while. So thanks everyone and I will keep you all posted as news comes in.

I feel as if all I have been doing lately is coming here to complain, but it seems as if nothing good stays good for long. I get over one ailment to just end up with another one. Right now what is really bothering me has been going on for over a week 24/7, I have low back problems from a broken tailbone a few years ago and was in physical therapy in 2001 for what I was told was my sciatic nerve being pinched. Well, the pain is in my r/h low back and radiates down my right leg, it also hurts on the inside of my leg, in the groin area. The majority of the pain is steady but I have sharp stabbing pains also and my right foot has been numb and tingly. I can't get in to see my doctor until Monday but it hurts so bad if I move a certain way I end up in tears. I'm not really looking for medical advice here, just that this is the only place I know to go where people will at least read about other peoples problems, and maybe someone that has/or has had similar problems might read this and be able to give me some advice.

I want to thank everyone for your great advice and support. I am feeling much better now even if i'm not 100% yet. A lot of good things have been happening here lately and it has taken long enough. I finally got my neuro consult at the VA and I have my first appt on Wednesday, with a few more different types of appts over the next month or so. I am going to be able to go home next week now that i'm no longer running a fever and it is perfect timing as well because it is spring break for me. And now that I feel better I am going home to help my mother with my grandmother, who will be 93 on Saturday, and now that I am better I finally get to go home and spend some time with her, and we are even having a party. But anyway, I just wanted to thank everyone who replied, I appreciate every single person, and it helps me to be more at ease knowing that there is a place where I can turn when I have problems that my friends and family don't understand because they aren't familiar with what is wrong, so thanks again for your care and support, I don't know what I would do without all of you.

I wish you and your son the best of luck while trying to figure this all out. I got a Neuro consult put in today, and it has only taken me 3 years. The only advice that I can give is the same advice that I got back when all my problems began......Don't give up. No matter what is said to try and deter you/your son, saying he's too young, or that it is all in his head, or that none of the symptoms are related.....keep looking until you find someone that is willing to sit down and actually do the research and acknowledge the possibility of his ailments being real, that he is not making them up. I only say this because I was told for over a year that all of my problems were in my head when in reality they weren't. I know that all Docs aren't like that but with something like POTS not being as well known as you would think, it is common for a doc to look at the symptoms and get the easiest diagnoses. So again, I wish you well while you guys begin the journey that will get your son to feeling better before you know it.

I do have a friend that could help out a little, but not much. I just moved, literally, last week and this place is beyond bare. No one can stay with me but while my friend is in town (she lives 45 minutes away) I know she will help out as much as she can. Thanks for the good wishes and keep your fingers crossed that the Phenergan will help me get some appetite back.

I will first start off by saying that I haven't felt good for a few months, since around November I think. I know I was sick off and on throughout Dec and Jan but just shrugged it off as the usual winter ailments. Well, about 3 weeks ago I started having problems eating, or not eating for that matter. I finally went to the hospital 2 weeks ago today because I was so nauseous that even tv food commercials were making me sick. But anyway, the point i'm trying to get to is that I was at the hospital for a routine Women's Clinic appointment where they told me I have Pneumonia. My first reaction was shock since the ER sent me home and said I was fine, my second reaction was "how am I supposed to deal with pneumonia and all other ailments when I live alone"? Besides staying in bed and getting lots of rest, is there anything else that I should be doing.....any moms out there that can tell me how they would take care of their child with POTS and now pneumonia would be a lot of help. Docs give medicine, People give advice.