xRobin

Good to know, thanks!

TMI BOWEL WARNING, but, as I understand it gastroparesis is a slow digestive tract. That would suggest to me irregularity - can you have that and be regular? I have episodes of poor appetite which I know is a symptom of gastroparesis but otherwise the pipes are in good working order.

I get some of the same symptoms though no shortness of breath, and some tightness in my chest after meals. I've found that making sure I'm sitting up for an hour or so afterward and drinking extra fluids is a little helpful but not much. I also avoid any strenuous activity because that makes it worse! Wish I had better pointers, maybe someone else does.

It sounds like it doesn't hurt to get it checked out with a simple blood test. I'm wondering what would cause it, though? She says her cause is "metabolic error". I wonder if it could be caused by celiac disease? I just saw this article about a women whose fatigue and orthostatic intolerance symptoms improved dramatically when she was treated for intestinal overgrowth.

You meant the POTS autoantibiodies study? I am looking forward to results! And, I am hoping for the best possible outcome for Tyler. It ***** to be an adult and struggle with debilitating health issues but for a kid who just wants to be a kid, it breaks my heart. Hope he's hanging in there. I'm pretty sure the Lights get their patients from Lucinda Bateman, who runs one of the few clinics for CFS, and was one of the authors of the International Consensus Criteria (though she's been controversial for her role in the IOM contract), so she's probably good at selecting a cohort. I've been following the tweets from the Invest In ME conference and Julia Newton said 89% of her ME patients have OI, and she's studying problems with muscle metabolism. It seems like autonomic nervous system dysfunction is a big under-studied part of the illness

I'm not sure exactly what it means, and I don't know if the researchers do either. I posted it because there seem to be a handful of people here with CFS and they might be interested. The researchers hypothesize that is a compensatory response. This is from the full paper (here): The large decreases in α-2A mRNA may reflect a particular type of dysregulation of the sympathetic nervous system. For example, activation of α-2A normally causes a decrease in sympathetic outflow (decreased release of norepinephrine). It is possible that the decrease in transcription of α-2A observed is a response to abnormally low levels of sympathetic outflow (or low levels of vascular and cardiac responses to norepinephrine), and resulting decreased cardiac output and possibly global vasodilatation. These effects would cause inadequate blood flow to working muscles and the brain. Thus, this decrease in α-2A transcription may be an attempt to compensate for a dysfunctional sympathetic response (by increasing norepinephrine release) that does not adequately increase blood flow to working muscles and the brain during and following exercise. So, essentially they don't know for sure but they cited some other studies showing poor autonomic function in peripheral muscle and cardiovascular response to standing in CFS. So, that would be the cause, and the gene expression would be the effect in response to help the body during exertion. But, not everyone who has CFS also have POTS/OI. In the group that showed cytokine expression and changes in all of the adrenergic receptors, 24% had orthostatic intolerance, while 71% did in the decreased α-2A group, yet non-OI people were still having changes in gene expression. Yeah, generally people who have POTS/OI in CFS have it all the time, but it pretty much all symptoms are more pronounced after exercise or exertion. Anecdotally, my onset of POTS followed a particularly bad flare up of CFS symtpoms. I'm just wondering if POTS in CFS is different than POTS for previously healthy people or those who had other health issues. It would have been interesting if they included a non-CFS POTS group!

I've had falling asleep weirdness, too. I've had a few nights where I've had to sit up to catch my breath, but most of the time mine involves a strange pressure in my chest and a feeling of falling like I'm on an amusement park ride or going over a bump in a car. At first it used to freak me out but now I think "oh good, I'm falling asleep". I wonder if there is some autonomic shift that goes on when we fall asleep? Maybe get a sleep study?

A husband/wife team of scientists in Utah recently have been working on developing diagnostic markers for chronic fatigue syndrome. Story here. I was reading up on the studies they have done and came across this one. There were some interesting findings: No gene expression changes occurred following exercise in controls. In 71% of patients with CFS, moderate exercise increased most sensory and adrenergic receptor's and one cytokine gene's transcription for 48h. These postexercise increases correlated with behavioural measures of fatigue and pain. In contrast, for the other 29% of patients with CFS, adrenergic α-2A receptor's transcription was decreased at all time-points after exercise; other genes were not altered. History of orthostatic intolerance was significantly more common in the α-2A decrease subgroup. So, I have no idea what that means in terms of POTS and OI, but I'm wondering of the blanket recommendation for exercise may be contraindicated as it may be interfering with the receptors' activity, especially for the second group. Also, it's a small study so take it with a grain of salt. (And fluids! ha!) General stuff on adrenergic receptors: http://www.dysautonomiainternational.org/blog/wordpress/new-evidence-of-autoimmunity-in-pots/

@ Chaos, I do a lot of those sighs too. Or yawning! I would also rank it as one of the top symptoms that **** @ spinner, that's a good idea to keep track and try to notice patterns. Lately it happens a lot when I'm trying to go to sleep at night, and today I got it in the car when we were going fast on the highway. That was not fun! It got better when it slowed down, maybe it was the change in pressure?

Hi, looneymom. I don't have a background in science so I hope I'm getting this right and not passing on incorrect information. Maybe some one else can correct me if I'm wrong or explain better. But, a friend of mine who is a scientist explained once to me that when the body goes into action immunologically to fight an infection, it sends out cell signals called cytokines which are an inflammatory response (I think these are invovled in antibodies somehow). These are picked up by the vagal nerve which signals to the brain that the body is sick, and that's where symptoms come from. I think he called it a mirror response? The signalng cells don't cross the barrier but the messaging does. I have chronic fatigue syndrome, and recently there was a PET scan study showing brain inflammation. He hypothesizes that it is a mirror response (if replicated) from infection.

@katybug, sounds like what I'm having, just different situations. thanks for replying @beforethemorning, yeah, mine is random too!

I think I may have this as a new(ish) symptom but I'm not sure. Wikipedia says air hunger, shortness of breath and breathlessness are all the same, and they a subjective experience of breathing discomfort that consists of qualitatively distinct sensations that vary in intensity. That isn't very specific! The last few days I've had episodes where it feels like I am breathing through cheesecloth or I'm in a stuffy room with no ventilation. I'm not short of breath or gasping for breath, my respiration rate is usually normal, or just slightly elevated, I can talk without getting winded, etc. It just feels a normal breath isn't enough air and I have to breathe a little deeper. I have asthma and it doesn't feel like that but I checked my peak flow meter just in case and it's normal. My vitals are great BP110/70 and pulse 75. This usually lasts a few hours whether I am upright or recumbent, and I get through it by doing relaxation exercises (because honestly it makes me nervous, which doesn't help things) and deep belly breathing. I am seeing a great cardiologist for chest pressure (thanks to a referral from a kind forum member!) I've had a normal EKG and am getting an echo this week to make sure all is OK with my heart, just in case. Is this a POTS thing?

Two day CPET testing for ME/CFS is really in the research phase right now; most clinicians will probably have not heard of it. Though you can get it done at Workwell and I think another lab. Right now ME/CFS is diagnosed your medical history and diagnostic criteria. Though shortness of breath isn't unheard of it's not a typical symptom. You need to have disabling fatigue and post-exertional malaise (that means symptoms following exertion such as fatigue and flu like symptoms that can last days.) I would say that if you didn't feel inordinately exhausted after your test such as take to your bad for a few days it's an unlikely diagnosis. That's the reason they do two day testing - they want to trigger symptoms so they can measure patients while they are symptomatic. It's really great that your heart and lungs are fine. From what I understand shortness of breath is pretty common with POTS, but it wouldn't hurt to pursue the other diagnoses if you're concerned. I've had EMG testing done and it wasn't too bad.

I used to make something like this for dogs - sew some of those water retaining crystals that people put in potted plants into a little sleeve with long ties. Then soak it in water and refrigerate for a while and you have a cool, damp neck wrap. Best of luck, anabanana!

I have a cat that's kind of a like a dog in that she greets us at the door and growls at the UPS truck. She really lightens the mood when things get tense or sad around here. She likes to push my husband's buttons when he's not paying attention to her, I hear him saying "staaaaahp!" in the other room and it makes me laugh. I feel the same way! My kitty and I used to have a play session every morning. But, animals are pretty good at adapting and it's good your cats have each other to play with.

Good luck! Do you have a peak flow meter at home? They're cheap and a good way to keep an eye on your asthma. Advair has worked well for me, as has montelukast. (I've had chest x-rays and they're normal; they're easy enough to do and it doesn't hurt to get checked out. Asthma is fairly common and mine developed as an adult too.)

Yes! Yes yes yes. It's in my feet and ankles, mostly, but sometimes my legs. It started shortly after I started a beta blocker and I figured it was a side effect. Then I noticed it's really bad during the follicular phase of my cycle and gets crazy right when I ovulate, then nothing for a few days, so I figured it had to do with hormones. I have so many new symptoms I just don't really know how to present them to a doctor. "Hi, my feet buzz during certain times of my cycle, and it started right after I got POTS." I mean, really!

I had heard of it before for migraines and I looked it up. Here's an article from a website written by physicians are very pro- science based health care, and they basically say it's kind of off the wall: http://www.sciencebasedmedicine.org/gaps-diet/ I didn't end up trying it, but, people try all kinds of treatments and whatever works, works. It might be worth a shot and if you don't see any benefit, you can always stop doing it.

From what I understand (a very lay understanding at that) is when you stand up and your blood doesn't return to the brain and heart, your body releases stress chemicals to get the blood flowing which can lead to either tachycardia or a drop in blood pressure (fainting). These can make you anxious or agitated. I definitely get jittery after long bouts of standing. As someone who has family members that are "crazy", ie suffering from mental illness, I think the mind/body distinction is kind of pointless and probably dated. Schizophrenia patients have been show to have elevated levels of inflammatory cytokines, depressives have abnormal cortisol levels, etc. People with parkinson's get mood problems. Our body is one unit, brain included.

It seems like CFS, IBS, IC, Fibro are often referred to as functional or medically unexplained (and often brushed off as stress or psychological). I recall reading that other ailments are similar back in the day before they had diagnostics - MS was hysterical paralysis and childhood asthma was explained as a 'cry for mother's attention' and treated with psychotherapy. It's heartening that medical science is catching up to finding a cause and, let's hope, diagnostic toolkits for clinicians for many of these common chronic diseases.

Haha, the researcher actually a high school friend of mine! He works in another field but is currently working on a small (pilot) study to look for inflammation in the vagal nerve in patients and controls via neuroimaging, in order to test his hypothesis. If he gets some preliminary data he'll hopefully follow it up with a larger study. Apparently it's very difficult to test for "smoldering" infections in nerve tissue because signs of infection can stay put there rather than spilling into an easy to access place like blood. One patient may show elevated titers and inflammatory cytokines in bloodwork and another may not. Here's another article/interview if you're interested: http://simmaronresearch.com/2014/02/michael-vanelzakker-ph-d-talks-vagus-nerve-infection-hypothesis-chronic-fatigue-syndrome-mecfs/ I've heard some real horror stories about patient treatment in the UK. I am encouraged by all of the great research being done by many people. I don't know if you followed the Stanford/IACFS/ME conferences but there is good stuff in the pipeline, and I think the Invest In ME conference is coming up too? I think we all will eventually have access to decent clinical care. Let's all hang in there!

Yeah, that's exactly how I feel - sick, like I'm coming down with something, except I feel that way all of time. Also, my lymph nodes are always sore. Like you, I had CFS for almost 20 years before POTS hit. Fun, huh? Maybe Chaos will know more but I think there are only a few doctors in the country that treat with antivirals - Dr. Peterson in NV, Martin Lerner in MI (?), Montoya at Stanford and maybe some others I don't know. I'm not sure if the people who respond to antivirals see improvement in OI.

Yes! That is almost exactly what happens with me. However, I have less head involvement and when I lay down I have to be propped up on pillows for a while before I can lay totally flat or else my chest feels too tight - it doesn't go away right away. Have no idea if your hypothesis is right or wrong. All I know is that I stand up and sit down and lie back very slowly, like an elderly person! I have a bit of chest pressure on exertion, too, like going up and down stairs. I am seeing a cardiologist Monday to get that checked out and plan to discuss the position change chest pressure too.

The research with CFS and elevated antibodies to some of the herpesvirus family such as EBV and HHV6 (and other viruses) is all over the map, with some researchers finding subgroups of CFS patients with consistently elevated titers, while others are not. So, as I understand it, you get IgM antibodies during initial infection, then your body starts making IgG which gives you immunity. That's why people don't get mono twice.* Gradually IgG levels drop off. Most adults don't have elevated IgG titers to common viruses because they were exposed a long enough time ago that their levels have gone down. An elevated level IgG level is difficult to interpret. Many clinicians will say it doesn't mean much. Healthy adults can have elevated IgG with no symptoms. But some CFS researchers are testing antivirals in patients with both elevated titers (IgG and IgM) and symptoms, with various levels of success. I wish I had more succinct and helpful explanation. Most of this is at the research (not clinical) level. But, if you want to pursue this, an infectious disease doctor might be helpful. I don't know about herpesvirus antibodies and POTS (I am new to POTS) but there is an overlap between CFS and orthostatic intolerance, though the symptom profiles are a little different. *You actually can lose immunity if your IgG drops too low. Chicken pox and shingles stem from the same herpesvirus (varicella).

I have 30-40 thigh highs, I can't remember what the brand is but I got them from discountsurgical.com. They were one of the cheaper brands. I started out with socks but found that instead of pooling in my feet and ankles, the blood would pool in my knees and they would get swollen and red. The thigh highs keep my entire leg normal looking. The thigh highs are easier to take off than the socks, too, because you can pull them down over your toes easily and they come off easy from there.