Cfs Or Pots??

[icesktr189]

This is in no way meant to discredit CFS but after going on some CFS forums, I noticed there was a lot of people who either had no clue of POTS/OI or were actually diagnosed with it and totally dismissed it, which meant that they were not getting any treatment.

I think CFS has really been overdiagnosed from clueless doctors who dont want to look deeper into the problem. Its actually a pretty easy cop out because there is no true treatment.

I was diagnosed with CFS, but I think I just have severe allergies my pregnancy brought on which makes my POTS worse.

Of course there are truley people who have it and dony have any orthostatic issues. I just think that if they also treated the POTS it wouldnt be so severe for them.

Totally not meant to discredit CFS, because I have a good amount of friends who truley have it.

[Sallysblooms]

I am a regular on Phoenix Rising forums. That is an amazing forum for CFS but also lots of information for POTS etc. Dysautonomia is not discredited there. Quite a few of us have it. I have had CFS or ME as it will be called soon, for 20 years. My POTS began three years ago. People with CFS VERY often have OI or POTS. They often go together. CFS usually has a viral beginning that, just like POTS, ends up causing multiple deficiencies that have to be addressed. With supplements and my doctors, my CFS is doing very well and POTS is much better. I know both are chronic though so they will continue to be with me.

[WyomingGal]

I was told I had POTS about two years before I found out I had "CFS". I was doing okay with my POTS stuff then for whatever reason I got insanely dizzy and tired last December. A chiropractic doctor ran some tests and saw that my EBV titers were really high, both for past and current infection. Now, this would be like the "3rd" time that I have had an epstein barr infection. So who really knows! I have no other past titers to compare it to, but glad I have one now so I can find my normal at some point.

In college I did notice that I got sick more often and just felt crappy more than any of my other friends, although I kept up with them pretty well. I think i got to a point where my body couldn't keep carrying on anymore. With a hair analysis, ALCAT diet, moderate exercise (like 10-20 minutes max), and supplements I have built my body up more My doctor had the same issues in her 20's (about 20 years ago) and went from doctor to doctor and even had unnecessary surgeries. She said once I build myself up and don't overdo it, in about a year I should feel better than I have ever felt before So there's hope!

I do agree with some of your statements, although addressing my POTS didn't cure my chronic fatigue. I do appreciate your thoughts though. I do feel stuck now, and it turns out my thyroid is out of whack. So have I had this since December when I started to feel crappy? Don't think I will ever know. It is all such a mystery! It seems like these problems compound, like having EBV, POTS, and hypothyroidism...of course I am going to have chronic fatigue and not recover as well as others. I played 45 minutes of tennis on Sunday, and my body is saying you overdid it...I knew it, and over time, I learn to be nicer to my body and support it as best as I can.

For those that do have CFS, here's another point that my doctor made. She has a great sense of humor and said that the good news is when I am older and my friends bodies start to ache and fall apart, and they complain, I can say, "Stop being a such a baby, I have been dealing with this for twenty years!" : )

[juliegee]

I think Dr. Peter Rowe's (Johns Hopkins) study found that 90% of CFS suffers also experience OI. To me, the illnesses are practically interchangeable- different name for the same horse

[icesktr189]

Oh i wasnt on that forum Sally. It was on a health board or something like that... quite a few different ones. A ton of women I talked to said they were diagnosed with POTS and I brought up florinef and midodrine and they had no clue what it was. I just feel like if they treated everything it would make life a lot easier.

[icesktr189]

Oh forgot to mention that I do also have EBV on and off. Already had it positive 2 times this year about 5 months apart. They didnt call it CFS though.. I cant remember what my rheme called it. I totally believe in ME/CFS, but my point was that many were not treating the OI/POTS issues. Sorry if that got confusing!

[HopeSprings]

I've often wondered if they are the same illness too. Many POTS people on here have said Fatigue is their worst symptom. I kinda think CFS is the real illness, with OI as one of its possible symptoms. Not every person with an illness gets every symptom on the list. But who knows. I really do hope they figure it out through research... and soon.

[icesktr189]

My problem is that I definitely had JUST POTS for around 4 years and then after my pregnancy was diagnosed with CFS because I had fatigue for more than 6 months and positive EBVs. Wouldn't the CFS showed before? Or if I just got it last year, it would be a really weird coincidence that I just happened to have POTS then CFS just shows up. I just dont buy that. I know they are connected somehow because so many with CFS have dysautonomia.

I just dont like how my doctors wrote me off with CFS and basically told me there is nothing I can do about it. Now when I say I have fatigue, i hear well its just your ME/CFS but I truly believe in my case its POTS. Then I hear from friends with CFS that there biggest issues are fatigue and dizziness. I asked what meds they were on and they told me just some herbal supplements. I asked what there heart rate and bp was and most were very high hr and low bp. How can you base your CFS fatigue when your POTS is so bad? Their doctors are not treating either one and they dont have any meds for the POTS problem. Its just one big mess!