POTS and Chronic Fatigue Syndrome...

[lalalisa]

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

[POTSparent]

It has been said in my readings, though I can't quickly chase down the source, that it is thought my some medical authorities that "most" CFS diagnosis are really the fatigue symptom of POTS. It's like my daughter getting a MVP diagnosis that her mitral valve is prolapsing. Sure it is. But it's really the low blood volume due to the autonomic disorder (POTS) that's causing the mitral valve symptom. My daughter, until effective treatment, was plagued with fatigue -- and fatigue is very common amongst dysautonomic patients. I tend to consider POTS as the umbrella, and underneath it are found CFS, MVP, IBS, migraines, etc. Any symptom can get worse, slowly go away, and perhaps be replaced by another symptom as the primary "worst" problem.

[futurehope]

Though I have often mentioned extreme fatigue as one symptom, my neurologist has only labeled me with POTS. I am currently seeing an endocrinologist who is working with my neurologist to address the fatigue. So far, the hydrocortisone the endo has me on has helped tremendously with the fatigue. But, it's only been 2 days. We'll see.

[ethansmom]

I too have extreme fatigue on a regular basis. I've also been told that all I have is POTS, but I've always thought CFS is an additional possibility only because I have some of the viral type symptoms that go along with that...unfortunately POTS can also mimic these things, so I really don't know for sure. I do know that I never had fatigue this bad until during and after my pregnancy, and the past year has been really tiring for me, maybe it's having a toddler and trying to work from home, go to school, and juggle everything else...on top of never getting enough sleep.

How much sleep do you guys get each night? How much do you NEED to function effectively? I seem to sleep 7-8 hours and then take a 1-2 hour nap every afternoon, or I can sleep 9 hours and stay awake all day, but that rarely happens- 7 hours seems to be my norm only because I have so much to do every day, I can never get in bed before 11-12 at night.

If I don't get adequate amounts of rest, and I push myself, I get this horrible viral flare ups where I get feverish, achy all over, sore throat, lymph nodes swell, and I feel flu-like for a few days until I recover. To me, that seems more characteristic of CFS...I just don't know. Does anyone else experience similar symtpoms with just POTS?

[BuddyLeesWife]

If I don't get adequate amounts of rest, and I push myself, I get this horrible viral flare ups where I get feverish, achy all over, sore throat, lymph nodes swell, and I feel flu-like for a few days until I recover.

My husband gets EXACTLY thesse symptoms when he doesn't get enough rest - in fact he has had them for the last few days. I am hoping he will recover over the holiday weekend. We went to a CFS clinic at the University of Michigan Hospital but they seemed to weigh joint pain the heaviest in the list of symptoms and did not feel his was severe enough. He does always test positive for Epstein-Barr Virus so I think it is the EBV flaring up when he is overworked. His diagnosis is NCS.

[michiganjan]

I think I am the queen of fatigue. I sleep 10 hours most nights and seem to need an additional 2 hour nap each day. Even then I will have entire days when I don't ever wake up enough to have any useful brain power.

I have a sleep study scheduled, but I had one several years ago that said I don't sleep efficiently. I have a friend who is a nurse and she has fibromyalgia and she had a sleep study that said she doesnt get restful sleep. However, after 9 years of fibro pain and poor sleep, she is much better, though she doesn't know what helped as she tried everything she could think of.

YAWN!

Michigan Jan

[briarrose]

I really need to get organized. I have all of the documented numbers somewhere around here on this subject. OK, so I'll go off of memory here. I believe it to be a 1/3 overlap of POTS/Chronic fatigue. I also have heard that many of the CFID's suffers have POTS and aren't aware so they haven't been diagnosed.

I too suffer all of the same symptoms that Ethan's mom listed out when I'm fatigued, not enough sleep.

When I have over pushed myself, I can easily sleep 19 hours before I feel better. I worked an extra shift last week and slept for 19 hours afterwards. Yesterday I wasn't feeling well and I slept 15 hours. Talk about losing life to sleeping or should I say wasting life to sleep. The other alternative is worse, feeling sick from exhaustion. Give me a blanket, pillow and soft place to lay down, guess sleep wins out.

Maybe that explains my Avatar - Sleeping Beauty aka Briar Rose! (She was one of my favorite Disney characters before I got sick)

steph

[MightyMouse]

I have the CFS diagnosis too...along with fibromyalgia. Not sure which came first...my guess for me is POTS first. I've always had POTS symptoms--When I was young, I beleive my body was better able to recover after rest, but I needed more sleep than most. 10 hours minimum. When I hit late teens, it was harder on me. I was in great physical condition, a competetive long distance runner, 2x captain of the cross country running team at my school. I needed to sleep on the bus on the way to races. I often slept after as well. And, that night, I'd often go to bed immediately after dinner and sleep as late as I could in the morning. In college, the progression continued... doing activities that previously I could recover from in a day or two took 3, 4 or 5 days.

I think I was 24 or 25 when I got the CFS dx. Sadly, it was nearly 10 more years before the POTS dx.

Fastforward to nearly age 40. Play today; pay tomorrow...and tomorrow...and... you get the idea. Sometimes I feel like I'm a teenager in the body of a 90 year old. Everything hurts in the morning; all my joints--toes, feet, knees, hips, back, shoulders, fingers. BUT, I do my best to keep moving anyway--I know that inactivity is NOT my friend.

Nina

[ethansmom]

I am the same way, Nina- I try very hard to push myself just to the limit without going beyond it. Inactivity will get you every time, but so will overexertion

BuddyLeesWife- I also test positive for EBV and I did NOT when I was tested several years ago, so somewhere along the line I think I've contracted a viral infection that recurs every so often as well. But the docs don't seem to have a clear cut explanation for this.

[lalalisa]

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

[MightyMouse]

I've had 2 known active EBV infections. The first one nearly killed me when I was in college--I was in the hospital for a week because my spleen got HUGE and I got secondary bacterial infections, including strep. I think I let it go way too far before getting medical help because I'd become so accostomed to being exhausted, I just kept going to classes. The second one happened when I was in my late 20's

Nina

[lalalisa]

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

[briarrose]

OK, I found some of the numbers they were in my NDRF handbook by

Dr. Goldstein and Linda Smith. It says that about 60% of patients with Chronic Fatigue Syndrome have Chronic Orthostatic Intolerance, with Postural tachycardia syndrome (POTS), Neurocardiogenic syncope, or both.

[lalalisa]

Steph,

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

Lisa

[DawnA]

I was initially diagnosed with CFS? fibr and POTS. Now they feel I have a mitochondrial disease. I have also had the flu-like symptoms of CFS. many of these illness' overlap and seem to somehow be related. It is hard to differentiate what is what.

Like Nina I also feel old like 80. I push myself to keep going too. Inactivitie makes things worse. It also makes me depressed. I often get 2-3 day crashes if I overdue myself. Then I do nothing but sleep. It is so hard to get myself back to how I was before. It is hard to find taht happy medium

[KarenLorrel]

I have suffered for about 15 years...but was diagnosed at the University of Michigan CFS clinic about 4 years ago with CFS. About 2 years later I developed orthostartic and tachycardia symptoms and was referred to Dr. Grubb. He said he chronic fatigue was caused by the POTS/EDS. I also have a mitral valve prolapse but he didn't indicate that it was a big deal...just part of the big characteristics. At times I have tested high for EBV...at times I have periods of high liver enzymes..symptoms are so fluctuating. At the time the symptoms seem to be stablizing..think the Adderall XR and Cerefolin and making a HUGE difference for me .

Also after reading from this site and asking questions I have added electrolytes. I couldn't drink Gaterade due to sugar sensitivity so I bought liquid elecrolytes from the Heath food store and add it to my bottled water. IT takes a little bitter so I pour a little Gaterade in to cut the bitter tastes and it works for me!

Thanks to all of you...and a great doctor...things are 'coming together!'

[opus88]

Lorrell,

Have you tried the Emergen-C powdered drink packets? They are low/no sugar and high in electrolytes. I used them for a while (tastes like weak Kool-Aid, comes in a handful of flavors), but since they are high in potassium and my potassium is too high already, I can't use them anymore.

You can also just eat the powder if you need to (remember those tart powder straws from childhood?). I always kept a couple of packets in my purse for emergencies.

[migraine]

Hey Opus88, where did you purchase those Emergen -C powdered drinks? I'm sure I have chronic fatigue syndrome, but it has never been looked at seriously...I have had extensive testing that has showed signs of epstein barr or/and CFS, but no one has ever taken them seriously because I have 3 kids under the age of 6 and they thought I was just tired from that. I was also advised recently to do a sleep study and am hoping to get the results today. I think the CFS is often overlooked because we have so many other symptoms from POTS that would naturally make anyone tired. I feel like Huey Lewis when I say, "I want a new drug..." I would love it if there were something out there to give me an energy boost or speed up my metabolism or something. It's just hard because I don't want it to speed up my heart or make me feel hyper either. I'm always looking for something.

[ernestine]

I to suffer from cfs but I also think that the lupus has a large part into it. I was only diagnosed with pots just llast Aug. and if I don't take a nap I also get the passing out. The Dr. said that the lupus attack my nervous system. I only can just sleep abou 4 to 5 hrs then up thinking water.

[opus88]

Hi, Migraine!

Emergen-C can be found at most health food stores, some grocery stores, and online. (I found the best prices online, even after shipping fees.) I liked the cranberry best, and it helped with bladder/UTI trouble, too!

Have you tried magnesium? I had great improvement with my fatigue after only 4 days on magnesium lactate. That was more than 2 years ago, and still if I start skipping dosages or switch to a different form of magnesium, I spiral downward again. It hasn't been a "cure" but has definitely been a huge help.

[KarenLorrel]

Hi Opus88...I haven't tried the Emergen-C...thanks for the information...going to get on line now to find it and order...thanks again....Lorrell

[migraine]

Opus88, actually my OB/GYN suggested a little magnesium to go along with my toprol during my first trimester when I was having awful migraines. I was afraid to try it though because I thought it would lower my blood pressure.

I was diagnosed yesterday with sleep apnea which would explain being tired all the time. I will get a CPAP machine in a couple weeks. If that doesn't help then I will look into the Emergen C and possibly magnesium. Thanks for the info

[opus88]

Migraine,

My blood pressure sits low but I haven't had any trouble with magnesium making it worse. I just did a quick search on side effects, and none of the references mentioned anything about blood pressure. In fact, the only real side effect could be loose stools/diarrhea, in which case you just cut back on the dosage. That seems to happen often with citrate, but I haven't run into it yet with the lactate form I use. (And yes, magnesium is very helpful to most people with migraines.)

Sorry about your apnea - hopefully the CPAP will help. Keep us posted!