Chronic Fatigue....

[Sallysblooms]

Naomi, it is pretty easy to get two "rare" illness. Lots of illness have POTS as part of them like Lupus. I don't think CFS or POTS is rare at all, just not not treated or picked up by most doctors.

[HopeSprings]

"POTS is almost always a secondary problem. Some have MCAD, some have connective tissue disorders and others have ME/CFS." Good point.

"Lots of illness have POTS as part of them like Lupus." Really?? I had no idea POTS occured with Lupus.

I don't know - for ME - I don't think I have CFS and POTS - I think it's all part of one miserable illness.

[icesktr189]

Oh yes POTS in common with lupus because your immune system can attack any part of your body including your nervous system. My neuro is sending my to a rhemetologist so I can be checked for it. I became obsessed and went on lupus forums and quite a bit of people had OI!

[Sallysblooms]

Yes, there was a newsletter here and I do know of Lupus being just one of the autoimmune problems that sometimes has POTS as a secondary problem.

There are so many reasons POTS can start.

[ramakentesh]

Sorry Dana I can argue against most of that. Your tending to make a fair few statements there that arent really backed up by the science.

1. The swelling in the brain stem hypothesis for CFS was something from the 80s and has now been rejected as a pathophysiology.

2. up to 80% of pedriatric CFS patients suffered from POTS. Other studies have demonstrated asymptomatic autonomic cardiac disfunction in a cohort of CFS patients, and finally a large cohort of CFS patients had both reduced orthostatic cerebral blood flow and increased cerebral lactate levels (from hypoxia).

Conclusion: It is likely that most CFS patients have POTS, or a form of OI that results in reduced cerebral blood perfusion. I never said ALL did and that is why I mentioned the possibility of a 'spectrum' of related illnesses here. Any POTS patient could get diagnosed with CFS in a heart beat. many of the non-orthostatic symptoms of CFS can be explained either by autoimmunity, inflammation or other mechanisms that can be explained by POTS.

Second point: MOST patients with POTS have primary POTS. That is POTS with no discernable cause - idiopathic postural tachycardia. ALL the research in POTS demonstrates this. patients with elevated angiotensin II levels have a problem that causes POTS. Nothing else, just POTS. Patients with NET deficiency have POTS - against just POTS or potentially hypertension. Patients with autoimmune-mediated a3 acetylcholine receptor antibodies get just POTS. Etc.

POTS is a symptom like fever and I never said otherwise. It has many causes - some secondary but cetainly not all - MCAD is not accepted as a causal mechanism of POTS - it is just as likely and possible that the increased sympathetic drive in POTS causes release of vasoreactive peptides from Mast cells. Other study groups have found routinely normal histamine levels in all POTS patients.

Thirdly, sure some patients have POTS secondary to a systemic autoimmune illness that can include: RA, MS, Lupus, Diabetes mellitus, Sjorgens and from my experience Ankylosing Spondylitis.

Vandy had another study that suggested frequent autoimmune comordidities in POTS and increased inflammation and oxidisive stress (angiotensin II could explain both these findings).

So what Im saying here isnt just based on my opinion, but current medical research.

People come to this site, read some posts that are really just opinions and then assume it as fact. Not really saying your wrong, but this is prettymuch what the research suggests thus far.

[juliegee]

Interesting to hear all of that research summarized, Rama. Your take on the XMRV is particularly eye-opening I have a question re your theory on MCAD. If increased sympathetic activity causes MCAD (which may very well be true!) WHY does epinepherine (more adrenalin!) STOP symptoms?

Thanks for sharing your research.

[ramakentesh]

Good question (and by the way if any one wants me to quote the research Id be more than willing).

Im not sure about MCAD. In your case your response to nitric oxide inhibitors (Tumeric) and your response to nitric oxide-based vasodilators suggests that there is something causing your orthostatic intolerance that is nitric oxide based. Most of the histamine related vasoreactive substances vasodilate through nitric oxide.

So your like a test case - and example that makes sense with MCAD being a possible causal factor.

Epinephrine is rarely the primary driver of sympathetic excess. Norepinephrine, parasympathetic withdrawal or receptor hypersensitivity (as in A1, B1 or B2 under responsiveness) could result in sympathetic excess and sometimes epinephrine is released as a last ditch effort to try and fix the problems. MSNA firing rates are probably the best way to evaluate sympathetic drive. A1 receptors are primarily activated by norepinephrine, b1 have more of an epinephrine activation but arent as involved in the orthostatic vascular constrictive response. B2 receptor disfunction is implicated in the over stimulation and hypertensive responses to stress in some POTS patients. But this could just be downregulation.

But other than that one study from Vandy we havent seen much more from the POTS researchers on MCAD. Im not sure what Blair Grubb thinks and I think the Stewart Medows group keeps a very open mind.

[juliegee]

Thanks for your input, Rama- very informative. Alas, my positive response to turmeric has not been duplicated Not sure why. Apparently folks with mast cell disorders DO have an excess of nitric oxide. But, my 2nd trial did NOT offer me any noticeable improvement. I was taking Plavix at the time for suspected microembolisms in my fingers and toes- most likely just severe Reynauds. Makes me wonder if the blood thinning effects of turmeric is what helped the first time around... I agree that NO is somehow implicated in this. My rheumy also says I have endothelial dysfunction- somehow connected & she suspects I have a mild case of ankylosing spondylitis... Huh?

Here is a link to a previous thread touching on much of this same stuff:

[Birdlady]

I don't have chronic fatigue, but I think I'm the odd one here. I am a bit high strung/hyper most days with simply too much energy at times. At this point in my life after everything I've tried to get myself healthy, all I have left is POTS. If I could just control my heart rates while standing, I'd feel pretty good.

Unfortunately that's a huge uphill battle...haha Those who have the fatigue I really feel for you because my husband has that and it can be debilitating all by itself. Then add in POTS and other symptoms and it is a living **** at times.

[comfortzone]

Thanks for all the dialogue on CFS, Pots and the like - very informative and interesting. My eds doc back east told me I had swollen lymph nodes in my neck - ??? Told her about the month long hospitalization for mono as a kid - she said - well better get checked again - maybe this is why you feel so weak... It didn't make much sense to my primary - so nothing was done. I supposedly had 'mono' again a couple years later as well - in my teens. Not sure which tests my primary would even order - as it's known almost everyone my age has had EBV ... titres and antibodies maybe .. dunno.

In 2006 after 2 major surgeries I pretty much just collapsed in function. Could barely get out of bed...for near an entire year. Everyone thought in the doctor world that I was depressed perhaps - though I knew I wasn't - I allowed them to prescribe anti-depressants - for a whole year - they kept switching and adding med after med after med - quite frankly they were killing me.......

I put a stop to it all - escaped the medical climate of the area I was in - weaned off all meds 8 of them - and haven't taken any since. I was not then, nor am I now depressed - not even a little bit. So now I find your sharing of fatigue very interesting. Mine is mild now compared to that one year - five years ago. I never knew what that was in the end - but it did go away and I got back to full time work. What I have now happens daily ~ but I can get some things done in a day ... it's vaguely anxiety provoking - now that I remember that awful one year.... I had no idea of things like dysautonomia back them, nor hypermobility, nor orthostatic intolerance - it could have been going on big time back then - yet with so much medication - how would anyone likely know what was going on...

So now I tread very lightly when any doc wants meds for anything - I try to hire only reputable doctors mentioned here --- about dysautonomia etc..

Does anybody know what kind of doctor takes care of Chronic Fatigue? Do you need a doctor? Say everything or almost everything has been ruled out of a serious nature.....wondering who 'likes' CFS patients and sees them on a regular basis - is a particular discipline? I had a really bad experience going off of reviews online for a rheumatologist locally - wow he was super mean.... I won't be doing that again - I thought I had learned my lesson - but his rep online on the dr. rating sites was like 5 stars - he behaved so badly I wrote his nurse practioner a long letter of disapproval - as she witnessed the whole visit...sigh.

[Lovebug]

What's strange is that I don't really exhibit signs of MCAD. I'm sensitive to smell but do not get rashes or flushing from things. However, I have an on & off sore throat with lymph nodes swollen. I never run a fever although sometimes my skin can feel hot (this is fleeting). I also don't really get "sick" anymore. At least not the typical sickness of a cold or stomach flu. I have Dysautonomia/POTS sick days (had one today) but that's it.

[issie]

nowwhat,

I saw Dr. Griffing (think that was his name) about 2 years ago at Mayo - he's the one that diagnosed my EDS. Very nice, polite and knowledgeable. Spent allot of time with me. He's a rheumatologist.

Issie

[Lovebug]

Does anybody know what kind of doctor takes care of Chronic Fatigue? Do you need a doctor? Say everything or almost everything has been ruled out of a serious nature.....wondering who 'likes' CFS patients and sees them on a regular basis - is a particular discipline?

Well, CFS was, & may be still be in some circles?, called Chronic Mono. So given your history it seems like there could be a relation. I never had mono before but when I got sick, I experiencced the same debilitating fatigue that you mention, as well as had an extremely high EBV titer. It only lasted a few months for me and then I went into POTS & fibro symptoms. At one point when I got so bad I considered going see Dr. Cheney for the CFS. He is an expert but is very expensive, doesn't take insurance, & has a waiting list. Or there is Dr. Lapp who used to be a partner of Cheney's. I believe both of them are located in North Carolina.

[HopeSprings]

Where are you located? Maybe we could help you research a CFS Dr. nearby you or maybe someone here will have experience with a good Doc.

[DoozlyGirl]

Looks like I am a week late on this very interesting discussion, but thought I'd add that my autonomic neurologist feels very strongly that CFS, FMS and dysautonmia are just different presentations of autonomic dysfunction. In his view, if your primary symptoms are fatigue, you get the CFS work up, chronic pain lands you the FMS work-up and cardiac or other symptoms of dysatutonomia leads to autonomic testing.

I started telling my new physicians that I have scores of symptoms and experiences pointing to "Metabolic Fubar", and hope they can help me sort out one aspect of my dysfunction. I do believe my issues started out with my immune system, then IBS. Anyone have shingles as a young adult? This tipped me off that I have immune dysfunction, which lead to allergy testing and MCS. And yes, I did have mono in 2nd grade and decades later diagnosed as CMV.

Can't wait for the day to find somone who is clinically savvy enougth to cross over current specialties. I wonder if the functional medicine MDs will be the ones to do that. Many of them have an anti-aging background, which in all reality is at the core of understanding cell biology and molecular medicine.

Lyn

[anna]

Ok for a while now I have been looking at PRIMARY IMMUNODEFICIENCIES as a possible answer to my families POTS. We have a diagnosis of Classical EDS and I am sure this goes back a long way in my family, but I do not feel CEDS really explains the Pots symptoms, I am sure something else is linked here. Any way does anyone have any info linking POTS wit PID or CVID.

I know this might be a really stupid theory, but I think some forms of EDS have a fault on the same coding sequence as some forms of PID, this might explain why many HEDS/JHS patients have POTS and MCAD type conditions as well.

It seems people with PID or CVID have a 20% chance of having autoimmune disorders! Does anyone see a pattern forming.

Can any one out there that has a good understanding of genetics see any possibility that my mad idea might have some scientific credence!!!!

[comfortzone]

I read all of this all over again this evening - lots of meat to the posts/answers/questions.... The thing about inflammation is intriquing - many eds'ers are one big ItIs - arthritis - tendonitis - they also generally end up with a chronic pain type lifestyle for lack of a better phrase - they often have orthostatic intolerance or some vasomotor instability - pooling or pots. This population has mega complaints of fatigue as well.

So why or how could it be that the OI/Chronic Fatigue/Joint Hypermobility are joined at the hip ... If EDS is inheritied - then that leaves your 'body' a certain way ... yet many don't know they have EDS till a trauma in life - accident, surgery, childbirth - then the pain syndrome or hypermobility syndrome - kicks in... it can be downhill after that. Suddenly they are tachy, suddenly their faintiness with standing is a real problem - and investigation finds Pots - okay now you have two of the three - your pain is through the roof - so you seek care for that - find it's expected with lax joints... But the fatigue - is crushing - and it is never ending - rather boldly Chronic fatigue - now you have eds a chronic pain disorder for many, pots or oi and you are fatigued to beat the band.

THEN add mast cell issues, then add Mitochondrial issues - I didn't add them - but a doc said why not try the treatment for mast cell disorders - because a subset of patients 'like you' respond well from it.... What??? Yet another thing to tag on to the list? Yet Dr. Peter Rowe does think this type of subset will benefit from some allergy type testing - his approach can be found on ednf.org 2011 conference notes ... its multi-layered/faceted - but a cluster of about 12 things he mentions to tackle in our little group.....of joint hypermobility, OI and fatigue.

I sure would like to know if this is allergy based, immune system based - oh and most have low thyroid it seems or some thyroid issue - and the other biggie - gut issues. AND many had a huge round of sickness as kids - EBV.....

I cannot see the forest for the trees! I just don't understand and the more treatment I seek for the basic problems of pain and fatigue and the OI stuff - I begin to get confused about it all ~ I have to focus hard on what the heck I'm doing in this short life that's worth chasing after medically - and what I just need to let go - Things like immunologists, alternative med docs, allergists, neurologists - etc... Just because we are growing enough to 'not blame the patient and call them crazy' in some respects - doesn't mean we have any more grounding in just what to do - what avenue to try - what tests to utilize to check for 'what' - We are all amazingly different - but the thing I find fascinating is how we are all so much the same on so many fronts -

I do feel that the excellent work of the few docs for eds and for dysautonomia do 'throw' meds at us .... yes they are highly intelligent and very aware etc... but push come to shove - it's try this - okay maybe not - how about this - okay maybe not - try that - oh you were allergic - sorry I forgot - how about trying this......instead. And it's not because they are not intelligent or they are losing faith or hope or that they are burning out - it's simply because they are focused - they do care - they collect research and anecdotal information in order to bring you the best of the best ... & truly they know that what works for the many will probably not work on you because your case is 'complicated' - ALL our cases are complicated... So if a handful are tried on a protocol and it works - that's fuel for the fire to help others --- yet get a run of people getting only worse - it could be a 'bad plan' - or just coincidence - being a doc for these symptoms has got to be very trying at times.... we never 'go away' it seems - but cling .... to hope that the good doc posesses to help us when ours is dim.

I know I'm burned out from seeking answers - I just want to pull a blanket over my head and tell the medical world to just go away. Leave me alone. Don't worry 'bout me I'll be fine - actually would love to have a whole year with no doc appointments - really live on the edge! But not so sure that's feasible -- still thanks for all the great inputs here

[TCP]

I have CFS/ME and have had it since 1984. Mine started with Epstein Barr/Glandular Fever. I struggled for year to live normally with work and life etc. The fatigue, malaise, IBS, brain fog, hormonal issues etc...this list is endless, have developed and some have come and gone over the years.

I developed peripheral and autonomic neuropathy 5 years ago and have issues with my organs, BP, postural changes etc. Lots of pain and tiredness. The mornings I feel sick and stiff, by mid-PM I am shattered and lie down for a couple of hours deep sleep. The only time I feel OK is when I lie down, but I have sleeping apnea now, sleep disorders like sleep paralysis and night terrors. The anxiety has been really bad, so it's been really important for me to relax and chill as much as possible. When the nervous system is so fragile then meditating and avoiding stress are SO important. I believe if I had been careful earlier on then the nerve damage would not have occurred.

Take it steady and look after yourself!

[comfortzone]

That one line says it all for so many of us - The only time I feel okay is when I lay down - ..... I've uttered that maybe hundreds of times to doctors hoping that it would somehow ring a bell as to the causation of symptoms - like is my neck somehow responsible for not allowing things to get to the brain - then when laying down - things can get to the brain?

You too take care - very interesting what you said about stress - I can also highly relate to the comment about mornings being filled with the feeling of being sick and very stiff.... wonder what that is about -

I know that Mayo clinic is very fond of the work of Jon Kabat Zinn and his books on Mindfulness - we have so much stress - it isn't going away - so we I guess need ways to grapple with it effectively to reduce it's unhealthy effects upon us...

I'm sorry you're having to fight the sleep issues and anxiety - not fun at all - yet you sound like you have learned a lot perhaps about the importance of toning things down to a relative calm to keep symptoms under control somewhat - good for you! I am not very good at that whole thing - sometimes feeling like the fight or flight is stuck on "on" !

[FarmerAmy]

I wonder if you have adrenal insufficiency. Your comment about crashing at 2pm is what makes me think this. There is a book called Adrenal Fatigue by Dr Wilson that might be helpful.

I just wrote a post about Functional Medicine. I have found that it is much more appealing to me than conventional medicine. The idea is to understand the underlying cause of disease instead of just treating the symptoms. You can learn more at www.functionalmedicine.org.

[Batik]

I notice I'm pretty bad when I try to incorporate daily exercise into life. So when I exercise an hour on the cardio equip - say 20 min. on 3 different machines - that's it. I'm done. Period. Recuperation time is several hours of extreme tiredness.

Yet exercise is touted to help you feel better! It's not working.

The hallmark of ME/CFS is that it is made worse by exercise. So if you are feeling awful after using the cardio equipment, then lay off that for the time being. Until you get a diagnosis, err on the side of caution.

[Chaos]

I think your questions are very pertinent and I'm having a lot of the exact same ones myself! Seems like you need to make sure you have the correct diagnosis so you get the right treatment and yet, how many more sets of letters do I need before I get a treatment that actually gives me my life back? In any other condition though, it seems like you need the correct diagnosis in order to get the right treatment.

In specific, I'm wondering about exercise for example. Have been reading/listening to some of the info from the docs out at Stanford on ME/CFS. According to their protocols, exercise is NOT recommended until very far along in the recovery process. For those of us who have POTS and suspect perhaps an ME/CFS diagnosis, perhaps exercise isn't the wonderful cure-all that it seems to be for many on here. I'm still doing the exercise stuff my POTS doc wants, but it doesn't make me feel better, usually takes all the energy I have for the day so I can't do much of anything else, and it never seems to get any easier to do it, despite doing some form of it every day for months. Believe me, I WANT exercise to be a cure for this! I've always been a fan of exercise, was very very active and exercised a lot before I got sick, taught yoga for years, etc.... but my experience with exercise since I've been sick is nothing like what it was before I got sick.

So again, if it's "just" POTS maybe exercise is the right thing. But if it's POTS/ME/CFS then exercise needs to be significantly modified?? But how do you know if you don't have the right diagnosis? At least that's what I'm thinking at the moment....but in the next moment when I realize how much energy it's going to take to make some phone calls to docs to make appts.....LOL I may just decide to go pull the pillow over my head and try to see if I can go a year without an appt.