GingerA

I am definately very emotional before a crash but think that it is the fatigue taking over.

Liz, I totally agree with you. I am glad to see that Greg is better but I would like to see what happens between shows and even the scheduling of his appearances. I know that I can appear happy and healthy for a small amount of time but I have to rest the whole next day. Just saying that maybe he is better but I don't believe that a miraculous total healing has happened. Exposing the true nature of his life would be better that the show business hype.

Warm baths help my muscle aches from the fibro but make tired. I'm not really one of those long bath people so I don't do it often. Showers are terrible so I shower at night just before bed using the shower chair. I have learned that regardless of bath or shower to take something to drink with me in a water bottle.

Thanks everybody. It still scares me but I can deal with it if I know it is just one more gift from the wonderful world of POTS! The thing is so strange!

I just wondered if I was crazy or if anyone else was having this symptom. I have always had trouble with my arms going numb when I slept. But two nights ago, in the middle of the night, 4 year old son called me. I tried to get up but my leg had no feeling what so ever! I couldn't tell if I was standing on it or not and I had no control over my foot! My ankle twisted under my foot and I collapsed. It took several minutes to get the feeling and control to come return. It really scared me because I couldn't control a part of my body and I could have broken my foot. Is this a POTS thing or is this something else?

I don't really think that there is a way to explain it. Even when people think they understand they really don't. You just have to learn to put yourself first and do what you can and no more. I know its tough to live with someone who doesn't get it but all you can do is say this is the way it is and I can not get better if I am pushing myself beyond my limits. I hate that you have to deal with this.

I'm older than you but I think it kinda happens to everyone at first. You will be surprised at who is still around in your life. It is cliche but your true friends will come back around. I think a lot of time that God gave me this to deal with so I would cut out some of the junk in my life. And that included some of the people. I'm sorry that you are having to deal with this but never underestimate the power of the internet. There is a whole world out there and now it is at your fingertips. I know that it is not the same but I am learning that there is another way of life if I can only find my place in it. You will find that place too. In the mean time, try to connect with some friends by maybe having a movie night at home. You might be surprised by who takes you up on it.

Yes I get this too, I have three toes that are pretty much numb all of the time but the rest go numb too sometimes. My arms go numb if i raise them over my head. Sometimes when I'm asleep I accidentally have an arm over my head and I will wake up and it will be so numb that I can't move it. I just thought it was the wonders of being me. lol

I don't know what he is going to give me. He just said he would call it in.

Thanks Issie, I was beginning to worry about myself! LOL

I wasn't nearly as fatigued as usual. I don't know if that was because of the pain being gone or the POTS.

Naomi, I guess that is what he thought. He told me the day that he gave me the samples that I had fibromyalgia as well as POTS and scheduled the tests. I know little or nothing about fibromyalgia so I don't know if the test was suppose to back up the diagnosis or what. I severe pain in my neck and shoulders with muscle knots at least twice a week. Pain in my hips and knees like my joints are coming out of place. The skin on my upper arm and thighs are always sore to the touch like the are bruised. But my whole body just aches all the time. Maybe i am just crazy!

Sorry I mean I can't get a doc to prescribe it.

I hate to ask where you are but it seems the same way here. I can't get a do to ever prescribe saline in the first place so I don't know if it would help me or not.

I recently had a post about a great doctor's appointment that I had where that doc to me seriously and how great it was. I got some sample of cymbalta at the appointment and have been taking them for about two weeks. I have got to tell you that I have felt the best in the last two weeks than I have in two years. I did not realize that I had so much pain in my body until it went away. However, during the two weeks I also had a nerve study and an MRI that of course turned out negative so now the doc won't fill the prescription for the Cymbalta. The pharmacy says the the med is not covered under my insurance but that the doc could write and override and it would pay for it. The doc says he can't because he has to follow some sort of protocol. I understand that sometimes you have to try other things to see if a cheaper med can be tolerated but I have tried all sorts of things that don't work! I don't know if he now doesn't believe that I really have pain or if it is really just red tape! This is just crazy!!

I voted 1-3 years because that is when I had my most pronounced crash and finally got a DX but i feel that I have had this since I was about 16. I also voted about the same because it really depends on the day as to how I feel.

I take Klonopin when I need to for sleep or anxiety. I used to take it everyday but I noticed that as it wore off I was very cranky and edgy. It works wonderfully when you take it but I don't like the feeling the next day so I try to limit it as much as I can.

Oh wow! I am so sorry that happened to you. I have had many docs hint that I did not have symptoms but never one with the ignorance to out right say it to my face! As one mom to another let me congratulate you for not slapping the woman! I don't know if I would have had the restraint when it comes to my babies. Tell your son not to give up because of ignorant people. There are some great doctors out there. They are just hard to find but totally worth it.

I think that it is one disorder. However, POTS can affect people with so many other health issues that the way a body reacts can be different in each individual. This can be said for any number of health issues! That is why some people have a rash with strep throat and some don't. The variables are too random to say "everyone with POTS has these definite symptoms." Besides doctors know so little about this disorder right now to make a call like that.

Yeah, my mother in law is a gem!

I'm with Mary. I have terrible marks. My mother-in-law (who is always ready with an encouraging word, I say sarcastically!) said, "Wow I've never seen anybody with stretch marks as bad as yours! It looks like someone set your stomach on fire!" Love those in-laws!

Any type of dairy will make my symptoms flair up. Before my DX I thought I was allergic since then I have found the cause is that dairy causes my POTS to flair up. I also don't eat gluten. I can get away with eating a little gluten every now an then but I don't like to risk it.

Goldicedance, Can you tell the difference in the symptoms of the POTS and the fibro? Rubytuesday says she can but I have been searching for answers for so long that I don't know what is what!

I'm with Rachel! Let's all start a colony in the water somewhere!! The United Federation of Potsies or something like that. lol

That was the test I had but the results were not explained other than to say that the test was normal so I didn't understand if nerve damage was apparent with fibromyalgia or if the absence of damage suggest that I had it.