lalalisa

I have been diagnosed with CFS and POTS. It is my understanding (according to the Dr's I've seen) that FM, CFS, and POTS are three separate conditions. Many people have overlapping symptoms though! Believe me, I do!! What have your Dr's told you? It seems to me Dr's have varying takes on this subject. Thanks for the poll, Lisa

Hello again everyone! My neurologist suggested that I try Concerta to possibly help with my extreme fatigue. I am extremely nervous to even try it because I react so intensely to meds!! Have any of you tried this? Side effects? I greatly appreciate your input! Lisa

Steph, Thanks! Those stats are helpful. I have known someone with CFS who also had POTS and wondered if this was common. Lisa

Oh, about the EBV infections -- I also had a past infection that seems to show up in my blood work. Some Dr's seem alarmed when they see the Titers and others say that they'll be there from now on. It seems to me there are some differing opinions among Dr's about this. Lisa

Interesting, It sounds as if many of us have silimar symptoms and fatigue. (I also experience the "Flu-Like" symptoms - especially when I don't sleep enough or get run down...this is what one Dr. explained to me as the Chronic Fatigue part of my illness. I sleep about 12 hours/night and always take a 1-2 hour nap during the day. If I don't I feel horribly and almost pass out (near syncope episodes) a few times each day. I plan every day around my nap --- I feel like a toddler!!! This has definitely become a way of life for me as I've felt this way for close to 2 years. I find it interesting that some Dr's view POTS as the cause of fatigue while others acknowlege POTS along with some sort of CFS or Post-Viral Fatigue. I guess in another 10 years they'll know more. You guys are always so helpful, it's such a blessing to be able to bounce things off of you! Have a great day! Lisa

Hello Everyone, I finally found a Dr. here in Louisville that knows POTS. It was so great to actually talk to a Dr. who knew what my situation was like. He mentioned that he thought I had POTS and Chronic Fatigue Syndrome. My worst symptom is fatigue for sure. I originally had a virus that caused the fatigue and POTS. What have your Dr's said about this? Have any of you been diagnosed with both? Thanks for your input! Lisa

Amy, I was just wondering, did you have POTS before your pregnancy? ....or was it caused by it. I am hoping to have children soon and was just wondering. What was your pregnancy like? Thanks!! Lisa

Thanks everyone...I will have my pharmacy order them. You guys are great. Lorrell, Salt can help increase your blood pressure if your bp is low. Many of us with POTS have extremely low blood pressure where we faint or almost pass out frequently. Hope this helps. Lisa

Hello everyone, I spent quite a while on the phone today searching for a place who sells salt tablets (no luck). Does anyone have any good ideas.....I called pharmacies, sporting goods stores, natural food stores, GNC, etc. Also, Are they worth trying?? Thanks!! Lisa

Merrill, Wow, sounds like you guys are having a party! I've also experienced a low grade fever after over-doing it. Weird stuff! I hope you can enjoy yourself tomorrow and that you will feel better! Lisa

Kristen, I was also put on Paxil CR when diagnosed. The Control Release seems to have even less side affects than the original. I was put on it to help with my nervous system and also because I had increasing anxiety. It has definitely helped the anxiety - I actually feel normal as far as anxiety is concerned, which is a blessing. At first I noticed my jaw was tired when I woke up at night - like it made me clinch my jaw or something. It's better now. I think it took about 2 weeks to fully work. For me it's been great but we all react differently that's for sure! Hope this helps, Have a great day!! lisa

Thank you everyone, I feel better about the fact that this is not uncommon for you all (even though I wish it weren't common) I will definitely tell my Dr. about this. Anyone know what the cause of this is? Thanks again for reminding me that we're in this together!!!!!!!! Lisa

Hello everyone, Over the last week I've noticed that I've been experiencing shortness of breath, this is new for me. It's like I can't quite catch my breath and I just feel like being quiet because talking is exhausting. The episodes happen at any time - even when I'm sitting or lying in bed. My pulse is normal and I don't feel anxious - (except for the fact that it's kinda scary.) Any thoughts? I realize this is listed as a POTS symptom, but I thought it went along with tachycardia episodes. Thanks for your input! Lisa

I tried Effexor and it made me anxious, jittery and increased my heart rate. (I only stayed on it for one day because I felt so poorly.) I'm sure it's different for everyone! Paxil CR is great for me without side effects. Hope this helps, Lisa

Genie, I experienced this -- my Dr's said that I needed to take half of the dose of Toprol XL that I'm taking. My heart rate is fine now. Are you on a beta-blocker? Hope you figure this out, Lisa

Deb and Jessica, Thanks for the info - I'll look into possibly seeing him. It's such a blessing to connect with others with the same symptoms and also network to help find Dr's. Thanks again, Lisa

Jessica and Deb, Hi, I'm from Harrisonburg, VA - I live in KY now though. When I go back to visit my family I'd like to see your Dr. in Charlottesville. What is your Dr's name? What type of Dr. is he/she? What do you like about him or her? Thanks for the info! It's a small world! I LOVE Charlottesville! Lisa

Beala, I will try and remember to let you know if it helps, feel free to email me though if I forget! =) lalalisamarie@aol.com I also take Toprol XL, Paxil CR, Midodrine, and Singulair for allergies. I'm sorry to hear that the midodrine isn't helping - I depend on this daily. Lisa

Beala, Hello! I wanted to let you know that I'm about to try a supplement that has tremendously helped both of my parents with mental clarity. My mom deals with brain fog after dealing with CFS. The supplement is called Acetyl-l-carnitine and Alpha-Lipoic Acid - it's a combination of the two. I am going to try it this week. The have purchased this at http://juvenon.com/ --- They have also tried some brands that don't seem to work as well. Both of my parents say that they can tell a big difference when they forget to take it. Also, My father is a family Dr. - he is skeptical of many things out there but claims this really helps! Hope this helps, Lisa

RX Nasal Sprays are extremely affective (Nasonex or Flonase)!! No side effects. Also, I take Singulair each day - it helps a lot also. I would take Benadryll at night - also Zyrtec is great but take it before bed also. Hope this helps, Lisa

Tearose, I am glad you are getting ready to move, I also just moved! I was on the third story of an apartment and my husband and I just bought our first home - and guess what? It has no stairs!! We had lots of help from our family and now I'm slowly unpacking a little each day. It's kinda discouraging some days because I feel like I'm extremely slow!! It is so great to have everything on one floor now. Also, I also have an energy points system. The system has really helped me and my husband (I call them Nitro's - not sure why). It's beneficial to gauge where I'm at during the day so that I don't overdo it. Interesting how much we all have in common as we re-adjust our lives. Hang in there as you pack! Lisa

I too am thin. I am on the shorter side though. 5'4" and under 110 pounds. I've lost lots of muscle weight - I'm still thin but have no muscle definition like I used to. Interesting posts, Lisa

Yes! I know what you mean - it's a horrible feeling! My hands sometimes shake when I feel like this and it almost feels like I've drunk waaaay too much espresso. Hang in here! Lisa

Dear Ethansmom, My POTS is believed to be caused by a severe case of the Epstein Barr Virus or mononucleosis. I've been testing positive for mono for almost 2 years now. At the beginning of the virus I too was extremely achey and had fevers and lost a lot of weight. Some of these symptoms have gone away but I still sleep 12-16 hours/day. (I've been sleeping this much for almost 2 years now!!) If I don't sleep this much I start passing out and the POTS symptoms seem to intensify. Epstein barr can show up as a chronic type case where your body keeps fighting it. The blood work should show this - have you been tested before? What do Dr's think caused your POTS? Hang in here and I hope you get some more answers! I am 25 and was healthy and running 3 miles/day until this virus got ahold of me - (it is quite rare for it to last this long though.) Stay encouraged and feel free to ask me any questions about my experiences! Enjoy your vacation!!!!!!!!!!! Lisa

Yes! I know what you mean! This happens to me after I get off of elevators and also sometimes when I lay in bed after I've done too much! (I haven't experienced this in the car though) It's amazing what types of symptoms we experience!! Lisa