Low-grade Fever, Muscle Aches And Pains - Symptoms Of Pots/dysautonomia?

[Katja]

Sorry if this is kind of disorganized. I had a $^$&@* time today trying to sort things out with my doctor and insurance company, and can't think too clearly.

My doctor is resisting the idea of autonomic dysfunction, but after taking my blood pressure lying down (110/60) and immediately upon sitting up (no reading at first, asked me to flex my hand several times, then 90/70), she was confused and agreed to refer me to a specialist of my choice, or for a TTT, "just to rule it out." I don't think she measured my pulse, but I told her that it (always) shoots up over 30 bpm, and past 120, when I stand up, so she's aware of that as well, unless it went out the other ear. At first she said that fatigue isn't associated with POTS, but it's pretty easy to find literature contradicting this. At the moment though she's really holding on to the fact that I frequently get a low-grade fever and joint/muscle aches and pains along with symptom flare-ups, and tells me that this would rule out POTS/dysautonomia as an explanation. I know that some people have these symptoms as well, however. I wanted to ask if anyone's aware of any literature I could give her which specifically associates these symptoms with dysautonomia or POTS, if they are in fact associated (something more than anecdotal reports)? I'm open to being wrong, I just don't really think I am, at this point.

Aside from that, I do get the sense that she would accept a diagnosis from a specialist, but at the moment I can't get an appointment that won't require months of waiting. On the other hand, I could have a TTT at the end of this month, which would likely speed things up. Unfortunately, my insurance won't cover it, and although it is possible to appeal this, my doctor is somewhat hesitant, as she still thinks dysautonomia is unlikely. If I can convince her that my symptoms are consistent with it, she may however be willing to make a go at the appeal. I know that I need to be more patient, but I need to speed things up if possible, because I will be applying to grad school at the end of this year, and a diagnosis will likely affect my decisions on that front (for example, where I'd be willing to move, if I'd want to defer acceptance). If anyone can suggest another way of dealing with this, or a different course of action, or would just like to tell me that I should have more patience, I would be really thankful!

My history, briefly:

1st 3-month flare-up immediately following some kind of viral illness and an immense amount of stress.

Several flare-ups since then, lasting from several days to 2-3 months, associated with stress and/or intense aerobic exercise (I've learned not to do this anymore). In between flare-ups, still have exercise intolerance and cognitive defects, to a varying degree (tends to get worse after each flare).

These symptoms seem to run in my family (father and particularly paternal grandmother, possibly her mother and my sister).

Symptoms (constant):

-postural hypotension: bp drops around 20/10 to 30/20, sometimes more, immediately upon standing up from a sitting position, often feel dizzy and have to sit down or hold on to something until I stabilize. BP normally low-ish, between 100/60 and 120/80.

-postural tachycardia: heart rate rises about 30bpm, up to 40 bpm (120-130), immediately upon standing up. Within 3-4 minutes of "just standing," rises an additional 20 or so bpm. What happens beyond that I don't know yet, except that I feel crappy at the time and get chest pains for the rest of the day if I do the 3-4 minute thing.

-anxiety

-feeling "out of it" and detached from surroundings

Symptoms (periodic, any combination at any given time - previously I thought they were psychosomatic or just non-pathological):

-debilitating fatigue worsened by any amount of exertion, however mild

-dizziness/lightheadedness whenever upright

-exercise intolerance

-heat intolerance

-chest pains/tightness

-low-grade fever

-muscle/joint aches and pains all over

-sleep disturbances - keep waking up, or can't fall asleep no matter how tired

-short term memory problems, inability to concentrate, brain fog, difficulty speaking

-tingling in arms, face, scalp

-feelings of numbness, waves of pressure in my head

-intense localized headaches

-areas of my body going numb without me sitting/lying on them (usually relieved if I shift position though, at least mostly)

-shortness of breath (not severe)

-weird sensations in chest area I can't put my finger on

-palpitations (usually in a "fight or flight" situation, though)

[pat57]

I am worried about your statement "some kind of viral illness " along with low grade fever , joint and muscle aches and muscle fatigue are classic hepatitis C symptoms. There are a number of hepatitis strains identified which I don't know much about - I suggest you have your liver enzymes checked.

FYI, below is from www.potsplace.com

What Causes POTS?

Liver disease may contribue to orthostatic intolerance. Compensated Cirrhosis is a condition in which the liver is damaged but is able to compensate for it. This condition coincides with hypovolemia and vasodilation. POTS, as well as peripheral blood pooling and decreased arterial tone, has been found in some patients (Hartleb, Rudzki, Karpel, Becker, Waluga, Boldys, Nowak & Nowak, 1979).

It IS a long shot ,

Its just - like I said -worth checking.

[firewatcher]

Hello Katja and welcome! I am sorry you are here like the rest of us. THere are several ways to look at the cost of the TTT. Is there any reason that your insurance would cover it? Have you fainted several times? Even if you go to an ANS specialist you may not need the TTT, there may be enough evidence to treat you without it. I wish my docs had recommended a TTT to begin with, paying ourtright would have been a lot cheaper than 2 MRI's a CTscan and a host of copays to eleven doctors that did not know what they were looking at, a lot faster too! If you can get to an autonomic dysfunction specialist, you may not need a TTT. It is supposedly the "definitive" diagnosis for POTS, but do you want that or just to feel better? I used to want an answer, a name, a diagnosis, but the longer I go on, the less I care. I just want to feel better than I do now.

Jennifer

[Katja]

Thanks for the suggestions! My doctor is checking me for every rare autoimmune disorder, and anything else she can think of - I don't know if she's looking at Hep C. The viral illness I had at the onset was more of a nasty cough, and I didn't get the muscle/joint pain that time around, so it might not be that... It seems like there may be more going on than POTS, but it also seems like I match the diagnostic criteria for it, in any case, and there are things it would be very difficult to explain otherwise. I was also thinking that the TTT may not be necessary. I guess the main reason for wanting to have one at this point is I /really/ want answers (even more so than treatment, which is probably silly), and I can't make an appointment with a specialist any earlier than November or so. I've been getting some of the symptoms treated for a while by my very confused psychiatrist, who incidentally also thinks that dysautonomia is the real problem.

Something funny, actually - the first flare I had, I had the fever, but there was one time it suddenly went down to normal, for several hours after I had a glass of beer (I normally don't drink - and never do anymore). Alcohol tends to occasionally help my father's and grandmother's symptoms immensely, as well. In any case, is there any way to explain the effect that alcohol had on the fever? Previously, drinking something that was /very/ mildly alcoholic has temporarily helped with chest pains/discomfort, also.

[pat57]

Ok, did she check for Epstein Barr?

As far as the beer, you may have reduced activity which can effect temperature.

[Katja]

Ok, did she check for Epstein Barr?

She did say she'll check for it. I'll get the results of those tests in a week, or so. I got blood work done the first time, but everything was within a normal range. My liver enzymes, thyroid levels, etc. were also checked shortly after, actually, for a different reason (I got an EKG, EEG, and MRI, as well, thanks to my then-German health coverage).

[summer]

Hi!

The symptoms you mentioned are all symptoms of Chronic Fatigue Syndrome.... and POTS/orthostatic intolerance/autonomic manifestations can certainly be part of the presentation. I'm not sure what it's like where you are, but here, many doctors are hesitant to make that diagnosis because they see it as controversial even though it's has been accepted as a neurological disorder and has a recognized list of diagnostic criteria in the ICD-10 (the manual doctors use for making diagnosis).

Chronic Fatigue Syndrome, however, is a diagnosis of exclusion, meaning that other more dangerous, or more treatable diagnoses need to be ruled out first. It's good that your doc is working on ruling out other disorders (ie. lupus? MS?).

You can certainly have both POTS and CFS. Hope you find answers soon!

Summer

[Katja]

Thanks! I have considered CFS on and off for a while, but when I previously looked at the diagnostic guidelines, my symptoms did not seem severe enough to me (maybe I was wrong). There were also a number of reasons at the time that I was afraid to bring up the possibility with my then-doctors. What seems possible is that I have ANS dysfunction with something like "CFS lite" or "CFS onset," as well as possibly other things, tacked on top of it (or the other way around). I think some doctors hypothesize that there is a close relationship between the two. Assuming that there may be a genetic predisposition or whatnot running through my family, while ANS problems would explain all of my father's past and present symptoms, he has never had any additional symptoms of CFS at all (my grandmother has/does, however). I think that it would be possible for me to find a specialist around here to look at both of those seriously (I'm currently in the States), I just need to be willing to wait a few months. The doctor is ruling out lupus - I'm not sure about MS. What's funny, now that I think of it, is that after telling me some of what she'll be testing me for, and that she /does/ want to rule everything out, she said that she expects to find no organic cause, and that these symptoms are "just the way I am" - in which case, whether I have it or not, I don't understand why she's ruling out dysautonomia on the account that it doesn't account for a few of the symptoms (when, apparently, "no organic cause" does, too)?

[pat57]

you silly, a person can easily had both organic and non organic symptoms/sensations. Personally I'd say that is 100% possibility.

No one is perfectly healthy all the time. Whether psychologically or physically.

BTW as I understand it, Epstein Barr and CFS are often linked.

And lastly is not uncommon for Drs. to use the process of elimanation. Like Summer said "Chronic Fatigue Syndrome, however, is a diagnosis of exclusion"

[Katja]

you silly, a person can easily had both organic and non organic symptoms/sensations. Personally I'd say that is 100% possibility.

haha, that's what I thought - I'm not sure why my doctor sees them as mutually exclusive . I'm also curious about how the Epstein-Barr results are going to come back, since it might clear up some things either way. I am very glad my doctor is eliminating whatever she can think of, and who knows, she may confirm one of the things she's testing me for - the weird thing is that she made it clear when I spoke to her on the phone yesterday that she gave me the referral for my own peace of mind, and so that I'd get the idea out of my head, but that personally she doesn't think there's any good reason to even do an evaluation before assuming that there's no cause for my symptoms (if the rest of the tests come back negative). According to her, all POTS is, is when "you're riding in the subway, suddenly get palpitations, and feel like you're going to pass out." That's after she said she vaguely recalled hearing something about this thing called "POTS," ran out of the room to look it up online, and came back, of all things, with DINET printouts for me, claiming that fatigue was not a POTS issue (?).

[jump]

Hey Katja!

I get low-grade fevers when I wear myself out and have a POTS episode. However, it's a good idea to keep getting tests done to rule out the many possibly causes of POTS (lyme disease, hepititis, autoimmune, various viral things....) because the fever symptom is sometimes a sign of an *underlying* disease. In my case they haven't been able to find anything underlying that would explain the fever, and as I've gotten these little fevers off and on for years, I no longer worry that it's something more serious and personally feel pretty certain that it's just POTS. Here are some articles that list low-grade, re-occuring fever as a symptom:

http://www.steadyhealth.com/articles/Postu...TS__a81_f0.html

http://home.att.net/~potsweb/POTS.html

http://www.level1diet.com/63751_id

good luck!

jump

[Katja]

Hi jump,

Thanks so much! I'm glad to hear it's not just me. Thank you for the links - I'll see if I can get my doctor to look at some of those articles the next time I come in.

[MomtoGiuliana]

Hope you get some answers soon. Unfortunately low-grade fever and aches and pains can have many causes.

Katherine

[Katja]

Thanks... Hopefully the tests will clear some things up, and I made an appointment to see a specialist in November. I asked them to put me on the cancellation list, so hopefully I'll get in sooner.

[summer]

The doctor is ruling out lupus - I'm not sure about MS.

Hi Katja,

I think you mentioned that you had an MRI. If your MRI did not show a typical pattern of lesions for MS, your doctor would probably rule out MS based on that (I'm assuming it was an MRI of the brain. Is that right?).

Summer

[Katja]

If your MRI did not show a typical pattern of lesions for MS, your doctor would probably rule out MS based on that (I'm assuming it was an MRI of the brain. Is that right?).

It was a brain scan - it was done over two years ago, but several months after I started having symptoms. It's good to know that should be ruled out .

[Katja]

okay... I may have figured out a potential cause for the joint and muscle pain. It's plausible that I have joint hypermobility syndrome, which can cause diffuse musculoskeletal pain - I have hypermobile joints (match the criteria easily, I just never realized most people could not bend that way), unexplainable frequent joint injuries since childhood, weird stretchy skin (always had fun with that), easy bruising. Dr. Grubb mentions in his 2006 "Concise Guide" article that joint hypermobility syndrome is associated with POTS (up to 70% of the former have some form of OI), and may in fact be a cause of it in some cases. Gazit, Nahir, Grahame, and Jacob (2003) also link it with dysautonomia. Some other authors think that it may play a role in both CFS and FM. Well, that might be one unexplained symptom down . And if nothing else, the fever could just be psychogenic (http://www.psychosomaticmedicine.org/cgi/content/full/63/3/476) - it isn't always present along with other symptoms, and god knows I'm under a lot of stress during flare-ups .

[ajw4790]

Hi! Welcome! Much of what you described sounds like myself. Like others have said the one thing that stands out is the fever, which can have many causes. The hypothalamus (which controls temp) in some of us does not work entirely properly for whatever reason. It seems to be more of an endocrine issue (hormone imbalance).

Also, with the joint hypermobility syndrome, are you also looking at Elhers Danlos Syndrome? It sounds a lot like what you were describing.

Sorry, if I am not making a lot of sense... My brain seems a little foggier than I thought it was.

[Katja]

Hi! Welcome! Much of what you described sounds like myself. Like others have said the one thing that stands out is the fever, which can have many causes. The hypothalamus (which controls temp) in some of us does not work entirely properly for whatever reason. It seems to be more of an endocrine issue (hormone imbalance).

Also, with the joint hypermobility syndrome, are you also looking at Elhers Danlos Syndrome? It sounds a lot like what you were describing.

Sorry, if I am not making a lot of sense... My brain seems a little foggier than I thought it was.

Thanks! I'll bring that up with my doctor. I think a lot of doctors hypothesize that JHS and the hypermobile type of EDS are synonymous? I was kind of confused trying to figure out what the difference was between the two, researching online. Dr. Grubb refers to it as JHS in his article.