So, after being diagnosed with FM for a year, my symptoms have continuously gotten worse. I was out of school all of Feb. with a virus that suppressed my bone marrow. My counts were really low, and I am starting to feel better now. I was recently diagnosed with Postural Orthostatic Tachycardia Syndrome (aka POTS). This pretty much means my blood isn't reaching my brain correctly and is pooling in my legs and extremities. It can have a variety of symptoms, some that are similar to FM. You have a high blood pressure/heart rate when you stand up, headaches, dizziness, pain, etc. After this diagnosis, I saw another doctor at a diagnostic center. He thought that I actually didn't have FM, but just had POTS, mainly because I was having a good day pain-wise and my FM wasn't bothering me too much. I disagree and think I have both, though it doesn't really matter too much because the treatment plan is the same.
So after this very long explanation, I was wondering if there is anyone out there who has POTS or has even heard of it before. I can't find any other groups about it, and was hoping someone here might have/know about it. And if so, have you found anything that helps? Or makes it worse? Thanks a lot!!!
I have Raynaud's but as far as I know, not POTS. So very sorry to hear that you do. I hope that you are under the care of a great Doctor, and he is taking very good care of you.
Yes, I have heard of it, but could not have given you a definition.
I Am familiar with orthostatic hypotension, I have heard of it, but only know of it as a cardiac condition. It almost sounds like a symptom of something else… I am going to look this up though.
I’m so sorry you have been given this dx. But like you I don’t think it has much to do with your fibro… I could be wrong, but logically our body reacts to pain by increasing the heart rate & b/p
I would get another opinion… Have you seen a cardiologist ?
I’ll be interested to see if anyone else knows anything about this ?
I was diagnosed with POTS a few years ago, then another doctor said: "That's just high blood pressure". Good thing I don't see him anymore. Bronze, do you have any other diagnoses? The people I know with it all have other disorders that it's associate with, although recently I have heard that the dysautonomia disorders are linked with fibro too. I haven't seen many people mention it here.
I've heard of it because it often happens with Ehlers Danlos Syndrome. I have HEDS which is the hypermobility type of Ehlers Danlos. EDS is a genetic connective tissue disorder that causes the body to make faulty collagen. I may have it or another type of dysautonomia but it hasn't been diagnosed yet. This is one of the best sites there is for POTS from what I've heard http://www.dinet.org/ Most people that i know with POTS also have EDS but I doubt that they always happen together. I hang out on several EDS boards though. I was diagnosed with fibromyalgia a couple years before the EDS diagnosis. Here are a couple sites about EDS
I gave the wikipedia link because it has a good list of some of the symptoms but their statistic on HEDS isn't thought of as correct anymore. The estimate is now 1 in 5,000 and may soon be changed to 1 in 2,500. People who find out they have it are likely to find relatives who have it also. Plus, not many Drs know a lot about EDS or POTS so getting a diagnosis isn't easy. I was diagnosed at U of Michigan a few months ago with EDS and have Drs not ready to check for POTS at the moment. Hope this helps some.
I haven’t heard of it until someone referred me to your post but thank you for posting because I have been having problems for a while now & I actually have quite a few of the symptoms definitely going to speak with my dr about it when I see him in a few weeks!
would compression socks help you out? i know when i had /have bad swelling in my legs that I must wear compression socks that fit up to knees. You can get them at local drugstore but best ones are online at foot, leg or ankle problem types of catalogues.
First check with your doctor about if these are safe for you.....i know they had me to help keep blood clots from forming and other reasons.
sorry i do not know about POTS but here wikipedia link that has some non profit sites that usually do have forums or i bet they can point you where they are located if they do not have one. It does say that fibro is part of symptoms of it...so check it out might answer all your questions. It kinda sounds like a friend of mine who fall down when he stand up....so going to send him some info on it just so he can see if he has any of the other major symptoms.
Siskiya is right about the compression socks. That's one of the main recommendations I've seen when people on the EDS yahoo group and Inspire group talk about POTS. They mention compression socks, staying very well hydrated and getting enough of a salt intake. I've only seen them talk about it though but I do think the staying well hydrated thing is helping me.
I am so glad that you brought this up because it sounds like symptoms that I have been having and will have to discuss it with my doctor. I have had blood clots in the past and it was determined that I have venous insufficiency a long time ago. But lately, on an average, I am carrying about 10# of fluid and it seems to be getting worse. We have increased my Lasix and it helps some, but not enough. One of the things that my doctor did tell me is that because of the fact that I am in a wheelchair now gravity plays a part in the fluid due to being in one position for a long time. What I am trying to understand is why they would think that this would be the same as Fibromyalgia because from where I sit, in my case, they are two separate issues. Could you clarify that for me. I have a hard time sitting in my chair now or any where else for more than an hour because of this and need to elevate my legs as often as possible. Any info you can give me would be greatly appreciate it. I hope that you feel better soon and get some resolution to this soon.
I have never heard of Pots. They tell me that fibro is just like lupus too. You are so young. I am sorry you are going through this , do you have get the impression that the doctors think it is only in your head when you tell them your fibro symtoms ? A year ago before I knew I had fibromyalgia I went to the doctor and he told me I had symtoms and that it was something that older people get. I felt like the doctor was not concerned at all, so I stopped going to him.
My BP was an average of 89/53 and I had been passing out and falling or falling and getting concussions or broken bones and i thought it was from my Chiari. I now have to take medication to keep my increase my BP, maintain hydration & increase sodium intake. I would be happy to discuss POTS with you or you can Message me if you would like. I have a great Electro Cardiac Physiologist & NL and have an appt with a POTS specialist. I do feel a lot better just being on the medication to increase my BP. Some people with POTS have to decrease their BP, so has several variants. I really do understand and you are not alone.
I’ve heard of it and been tested for it. Here is a link to a group I joined when I thought I had it, http://www.dinet.org/pots_an_overview.htm. Turned out I didn’t have it but my blood pressure would go very low and I would get dizzy and almost pass out. I added more fluids and took salt tablets per dr. It passed after while and I stopped taking salt tabs. I think it is connected to autonomic nervous system which could be connected to central nervous sys. Which is basically connected to FM. Hopes this helps.
I too have Raynaud's and Orthostatic Hypotension. I have heard of POTS and it can be quite painful in the same way that most vascular circulatory diseases can be, especially in the extremities where it takes more effort to get the blood pumped back to our core. I am sorry that you are having this painful problem along with FM, more pain is never good. Doctors (of Westernized thought) here, may think that this is crazy crap or hippie thinking but vitamin C and all natural vitamin E (not really the stuff in those gel tabs) are often used in prescriptive high doses for circulation disorders in many parts of the Eastern world . You may want to look into researching some of these treatments and ask your doctors how they feel about it.
Glad to hear there are others too! I have been diagnosed with Fibro, Pots, and Raynaud's as of right now, but we are going to check with another dr just to get another opinion. Thanks so much! Feel well!
From what I understand, Fibromyalgia and pots often occur together in many cases. Some of the symptoms overlap so it can be hard figuring out which symptoms belong to which disorder. They are caused by different things though. That's all I know, but I hope it helps in some way!