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Thanks and I look forward to hearing from you in the future!
I totally understand , as I have a ton of the same symptoms and breathing issues at times!
Asking4answers hasn't been on for some months and also may not have this as a watched thread at this point, so you may want to private message them to see if you can get a reply. I'd be interested about that too!
how you have your POTS under control Lala4? How you can do that?
Prior to my first flare I was complaining that I had on and off low grade temps, in the 99-100 range. They happened all the time for at least a couple months before and the docs couldn't figure it out. Put me on antibiotics and still had it. Now that I pretty much have my POTS/NCS under control I haven't see the weird temps. Coincidence? Maybe. Maybe not.
POTS/Dysautonomia are not diseases. I assure you, you have a complex combination of endocrine and/or neuro-endocrine dysfunction.
wow! I had a low grade fever (100.0) for 3 months with no increase in WBC's. No one ever told me that it could be related to the dysautonomia. I never get a rise in WBC's even when I go to the hospital with a severe infection no one told me that was related either. Is it just me or does it seem like the doctors could do a better job of educating us about the full spectrum of this disease?
I have dysautonomia and fibromyalgia. They also suspect lupus because of a positive ana which is now coming back negative, but I still have lupus symptoms. My temperature used to run slightly low, but since all this started in late 2008 it seems that the fever has gotten more persistent. On days that I feel "OK" it's usually around 99 and days that I'm feeling worse, more tired etc. the fever will spike but usually between 101 and 102. No signs or symptoms of infection or virus. I recently lost insurance so I'm hoping I can find some answers from people who have been dealing with this. My cardiologist who diagnosed me with dysautonomia didn't mention fever, and I didn't notice if I was having fevers when I last saw him at the end of September 2011. It seems like my overall health has progressively declined and the fevers are occurring more frequently. My family wants me to go to the ER since I don't have insurance, but I'm sure they can't/won't do anything. I'm taking propafenone. 150mg 3pills twice a day. They just increased my dose last week, I was taking 3 pills per day. They said I should notice a change within 4-5 days but so far no difference. I forgot to mention that I also have SVT and was diagnosed in 2002 with mitral valve prolapse. My current cardiologist confirms the SVT but doubts the MVP as he says that is frequently misdiagnosed. He never did an echo, but in 02 when I got the diagnosis they showed me the regurgitation of blood. I really don't think that's very important to what's going on now. The biggest concerns I have are that not only to I constantly feel fatigued, I also stay weak, nauseated, and have a fever nearly every day. I guess I just want to know if other people with the same or similar illnesses have the same symptoms. Also, at times I feel so short of breath that I feel like I need oxygen. Inhalers don't help at all. My breathing is slightly labored but mostly it seems like I'm unable to inhale enough oxygen. Anyone who has similar conditions and can tell me if these things are normal, I would appreciate. Also, any suggestions of what I can do to help some of these symptoms? I've always gone to school and/or worked and since this began in 2008 my life has changed. I can hardly do anything. Thanks for any insight!
Okay, I am REALLY sorry to say this because I would rather you be healthy ... but since you're not anyway ... BOY am I ever relieved that I'm not the only one with the low temp and the lazy white cells!! I felt like such a freak!!!
Ugh, I can't believe your temp got all the way to 104, though!! Was it hot outside, or was there no external reason for it so it had to be a fever? I use those phase change cooling packs from a cooling vest on top of my A/C when it's really hot out ... just line them up in a row down my body and try not to roll over and knock them off. But I've never spiked a high temp when it wasn't hot outside since I've had the dysauto (that I'm aware of at least).
Are your docs aware that your white cells don't respond? My general practitioner is aware of it now so they just look for the other signs and symptoms of viruses and infections. We can usually tell when one is coming on because there's a certain type of dysauto flareup that I tend to go into about 1-2 days before I start showing symptoms. Then of course if I'm making nasty green/yellow mucous or my lungs sound crazy congested or there's funky stuff growing on my throat or ... :-p But yeah, they can pull up my history of every blood test I've had in the computer and see that even when I had viruses and bacterial infections in the past few years, my white cell count never went up at all. So if any doc ever tries to question it I ask them to cross-reference the dates that I was Rxed antibiotics with the dates that my blood counts were taken and look at what the white counts were. That way they can see that when I have infections, my white cells just laze about.
I only have three patches on my body that still seem to sweat normally (other areas have either stopped sweating entirely or only sweat very reduced amounts); the really weird thing is that when I have hot flashes and stuff like that, the parts that still can sweat seem to eject the entire volume of sweat that my whole body wants to get out through just those tiny areas. I mean BUCKETS get squeezed out of these three tiny little areas. :-( It's soooooo gross.
There are times when my feet get icy and NOTHING will warm them up either; I'm pretty sure it's due to peripheral clampdown. If the peripheral vessels are tightly constricted, very little blood is perfusing those tissues and it's similar to what the body does in hypothermia to conserve blood flow to the vital organs (only our bodies are doing it for thoracic hypovolemia). Have you tried elevating your feet when you're having that problem? Sometimes my aide will put a huge stack of pillows under my legs under the blankets (so the ones under my legs are stacked up taller than the ones under my head) and that seems to be helpful to me ... your mileage may vary. I also like a heating pad better than an electric blanket because you can localize it to a single chilly body part. I've also been experimenting with using the heating pad to try to relieve the "coathanger pain" in my shoulders and neck, with some hit/miss success. I wish I could figure out why it works sometimes and not others.
Very good point to emphasize Heiferly - Heat strokes are really dangerous, as dangerous as any high grade fever.
Weather the high temperature is caused by a "Fever", or "Uncontrolled Hyperthermia", something needs to be done - antipyretics, or cooling devices like a cooling vest.
I think that knowing your own normal temperature is very important - For example mine is 36.6 (97.8), and even when I feel really unwell, and think I'm gonna "die" :-) , my temp rarely goes above my normal.
I always found that really weird - I'm really hot and sweaty, with muscle aches, but my temp is 36.5 (97.7)!
So when I do reach 37.5 (99.5), I REALLY think that I'm gonna die! :-))
Maybe I could share something here that I always found weird and inexplicable - I get an infection, bacterial/viral, (which is not frequent; the last one was 4 years ago), I feel really unwell, but no temp. Within a week, things seems to have gone back to normal, when, suddently, I feel feverish, with my skin becoming hypersensitive and very painful to any touch, lots of shivering, and very SOB.
I take my temp, and it is 40.0 (104.0)!!! "Wow" I think, that must be a real infection!
So the doctor takes blood for a Full Blood Count and Blood Culture, and then, NOTHING!!!
Then I'm sent home, because, obviously, there is nothing wrong with me!!!
The whole thing might last 2 to 3 days, and then it is back to normal, like nothing ever happened - So now I don't even bother to see the Dr; I just take some Ibuprofen, and wait it out.
It all started 15 years ago, so way before I was diagnosed with POTS.
Now I'm wondering if any other dysautonomiacs get this - As stated in my earlier post, I have never came across anything related to this in any litteratures; the only mentions are always related to "Uncontrolled Hyperthermia" ....
Anyway, like you Heiferly, my White Cell Count is always "normal", and I have no clue what a "fever" feels like.
I always had intolerance to cold, but could tolerate hot/warm weather very well before I got POTS - Now I can't tolerate either.
And, in the past few months, I have developped very bad night sweats, like 'coming of the shower' sweats, but my hands and feet are stone cold - even with my electric blanket, it might take hours before I warm up, and most of the time I need to turn the blanket off before my little appendages get warm, because my 'core' is overheating :-(
This confuses me very much, and don't know what to think!
"Just hyperthermia" is a bit of a misnomer. Hyperthermia can potentially be as dangerous or moreso than a fever. When your body loses the ability to cool itself irrespective of environmental temperatures, you can suffer the same consequences as you would with an extremely high fever; no matter what the cause, eventually the temperature can rise high enough to cause brain damage (though the threshold for this is higher than most people imagine ... about 107 degrees F).
I don't feel particularly "ill" when I run a "low-grade" hyperthermia in conjunction with high summer temperatures; I do have increased symptoms at these temperatures, but I don't correlate it with the hyperthermia because I've had the heat intolerance flare-ups of my dysauto since before my illness progressed far enough for me to have notable problems with thermoregulation. So far, I've never seen my temperature fluctuate over 101 (F), though. I do not know if greater hyperthermia would be more symptomatic. Maybe someone else has further input on this? (Actually, I really hope no one is letting their hyperthermia get more severe. We could always branch this off into a thread about cooling vests, etc. if we need to talk about that again. I'm not sure how many current members on the forum are having that level of autonomic dysfunction.)
Actually, this is probably the perfect place for me to toss in a question that I have related to the upper respiratory virus I currently have. This is specifically for anyone else who has existing thermoregulatory issues as part of their dysautonomia. Although I can observe high temperatures (i.e. hyperthermia) relative to environmental temperatures, I haven't observed an actual "fever" the last few times I've been sick (and by "sick" I mean with a virus or bacterial infection). I suppose it's hard for me to even judge what a "fever" would consist of, as my "set point" fluctuates with environmental temperature across a pretty wide range. If I compare the 96-ish temperature that I see pretty often to the 98-99 degrees I'm running now that I'm sick, maybe that's my body's version of a fever? On the other hand, my white cell counts have been noted not to respond (i.e. elevate) when I'm ill, so maybe I genuinely am not having the immune response that would cause a fever. Anyone else in the thermoregulatory dysfunction boat have experience in this regard that might shed light on this?
Thanks for the info! I wonder if you still feel sick and feverish if it's just hyperthermia or if you'd only feel ill if it's due to an infection...
I've got a doctor appointment early next week so if it's still a problem then I'll bring it up.
I'll let you guys know what she says.
Thank you for that excellent information! You explained the differences between the two very well. You are quite right.
I think it is important to make a distinction between 'Core Body Temperature' (thermoregulation) and 'Fever'.
Those two processes are complex ones, and might overlap in a concept called 'body temperature regulatory set-point' - but in general those are the differences -
Thermoregulation - Is controlled by the Autonomic Nervous System (ANS), and involves a multitude of players and processes, the most important ones being:
-Acetylcholine effect on sweat glands
-Vasoconstriction and vasodilation of blood vessels
Fever - Is always an immune response to some infectious agent, or inflamation.
In POTS, and other dysautonomia, it is the failure of the ANS that causes the body temperature issues - most sufferers will complain of poor resistance to cold, but can't tolerate warm/hot temperatures, too much sweating or innapropriate sweating (i.e. when it is cold), or absence/decrease sweating.
In all my readings on dysautonomia I have never come across 'Fever' as a symptom (people can correct me here if they have found articles saying otherwise), because the pathology of dysautonomias does not involve the immune system.
What happens to your fever if you take an antipyritic (Tylenol, Ibuprofen)? If it goes down it is certainly immune related.
If antipyretics do not work, then it might be related to your thermoregulation.
For example, the body can reset its core temperature if, lets say, your thyroid hormone (thyroxin) is going up.
In any case talk to your Dr, so you can find out what is going on.
Tonya has a good advice about the 'Sx journal', as the causes of low grade fevers are sometimes difficult to pin-point - any other symptoms out of the usual for you can often help in finding out what may can be causing it.
Here, in Wikipedia, they explain the difference between 'Fever' (controlled hyperthermia) and 'Hyperthermia' (uncontrolled hyperthermia)
"Fever (also known as pyrexia or controlled hyperthermia) is a common medical sign characterized by an elevation of temperature above the normal range of 36.5–37.5 °C (98–100 °F) due to an increase in the body temperature regulatory set-point. This increase in set-point triggers increased muscle tone and shivering."
"Fever differs from uncontrolled hyperthermia, usually just referred to as hyperthermia, in that hyperthermia is an increase in body temperature over the body's thermoregulatory set-point, due to excessive heat production and/or insufficient thermoregulation."
I hope this help.
Keep us posted on what you find out.
Hey there :)
I too have the temp regulation issues and have had for several years even before my Dx of AD or MS.....As Enzy had said, the Autonomic Nervous System does play a role in body temp as well as HR, Resp, B/P, Bowels, Stomach.
So my vote would be that it probably is related to the AD BUTTTTT, I would check in w/ your EP or Cardio and give them a Heads up so that it can be charted or they may want you to come in and take a peak at you.
I would also include this in my "Sx journal" for future reference (did I spell that right?)
Hope you get some answers and feel a bit better soon.
It does make sense that temperature disregulation could happen in autonomic dysfunction.
Many people with chronic fatigue syndrome also complain of chronic low grade fevers.
I hope your fever resolves soon, and doesn't become another ongoing problem for you.