Chiari Malformation Community
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4760166 tn?1398357313

low grade fever?

Hi guys ... I'm scheduled to have my shunt revised / replaced on the 17th ... but for the past couple months or more I've had a low grade fever (I usually run about 97.  it's been 99 - 100 ... not even worth a doctor visit) and really the only thing that bothers me about it is my eyelids always burn when I have fever so they haven't stopped burning.  And I noticed yesterday that there is a blue/grayish spot on my left sclera (the white of your eyes) ... it is definitely new.  I saw a neuro-ophthalmologist last month and it wasn't there .... and a quick search brings this weird sclera "thinning" in connection to Ehlers Danlos.  

Now I have this sinking suspicion that the inflammation / elevated opening pressure on my last lumbar puncture is maybe from my dura patch?  bovine pericardium?  causing long term, low grade fever from inflammation? headache? nausea?  am I off my rocker to even consider this?  I'm terrified of a shunt surgery not resolving my issues.  I have a pre-op appointment on the 16th.
9 Responses
Avatar universal
you have certainly been through a helluva roller coaster ride girl! I bet you're tired of feeling like a human pincushion!!!
I'm curious, with EDS, when you have  fevers, does your skin hurt to the touch? I know I've read about the different levels(for lack of a better word) of EDS which some firms do mention what you're describing...
I know Selma will have a much better answer for you, as she does so well. But it does ring a bell to me.
I know that when I have a fever, 1st thing I know (I can tell befote I get the fever) is that my spine feels like a swollen brittle tree trunk-AND my eyelids burn horribly. As well, my skin hurts everywhere...like electric shock of someone touches. Even a soft blanket hurts.
Keeping you in my prayers & thoughts..you're one tough chic!!!!
Please keep us posted! And your shunt revision surgery is on Feb. 16th for sure, yes?
<3 <3 <3
Avatar universal
Just thought, so you had a bovine patch for your dura? How long have you had that? I know that those w/EDS often reject foreign materials (mesh, implants as well as other tissues, such as bovine). As such, NS's will harvest your own tissue so as is your best chance of not rejecting it. I know that b/c of my auto-immune ...and b/c my NS said he always prefers to use the persons own tissue, as he did w/mine.
Could the fever, nausea, etc. be sx. if rejecting that? But, you also have a shunt to contend with & your body "accepting" that.
Again, you're one heck of a trooper!!!! And I cry over my brick!!!!
Just thought about this (dura patch)  after I posted above.
I feel so bad for both of you as I have been reading a lot of these posts and following your stories. Hope you both get some relief soon!

I just wanted to say that I think I might have EDS and I always get sore skin and sore eyelids when I have a fever. That was how I could tell to get a thermometer as a kid. But now that I am older at 61, I can go for weeks with sore skin without a fever. My temp is usually too low, like 97 or lower due to thyroid problems. I think it is because I'm not well because of the chiari or the low CSF flow or EDS. I am pretty certain I would not be able to handle a synthetic patch, so I am incredibly grateful for the information here.

Hope your shunt surgery goes well. I will be thinking about you.
Hello poosygirl! My temp is always (at its regular baseline) lower. So, to me, a 98.9 IS like a fever starting for me. I too have thyroid problems..well, I have NO thyroid! Haha! I was dx. with Hashimato's & then had to have a semi-emergency Total Thyroidectomy. I see a new Endocrinologist in a few weeks... I am pretty sure I need to adjust my mcg. Each time I've insisted (and HAD to insist on not just looking at the usual "TSH" levels, but my T3,T4, Free T3 & Free T4, etc.) to have it tested-because I had a feeling it was off- I was right....just as right now, I can guarantee its off.
Thyroid/Hashimato's, Chiari, EDS, Endometriosis, Occipital Neuralgia, the "brick"(I think I'm going to have to become "frenemies" w/the "brick"...as I'm beginning to think it wants to stay there forever!! ;) )
With all these things, it's sometimes hard to tell what's what!!!! I suppose we really do have to & DO end up knowing our bodies-listening to it, knowing more than we ever thought we'd have to. I certainly do see here that we all pay a acute, definable, close attention to our bodies! Thus, with all we have to learn, I think we all deserve a Mini-Chiari health degree!!! LOL! But seriously, yes!
As for Miss Beat here....a true warrior! I wish I had the strength you do, truly! You're amazing!
You're both in my prayers and thoughts! And please Beat, keep us updated on what's going on. And I'll be praying big time in your surgery date!
SO many hugs!!!
I am like that too Emme. I consider it a fever when it is a little higher than 98 because 96 or 97 has become my normal. It turns out I have a flattened pituitary (not sure if that is because of ICP or what) but anyway, it explains the low thyroid hormones. But T4 did nothing for me and I had to do my own research, once again, and tell the doc that my body could not convert T4 to T3. I asked for Cytomel (T3) which worked amazingly once I got the dose right. Thought I would mention it in case increased T4 doesn't work for you. Just be careful with T3, too much can make you really sick.
I have huge temperature control problems. Hot sweat cold hot sweat cold hot sweat cold on and on all day and night. But my blood pressure is getting very high like you too. Heart beat is low though.
I always know it when I need my thyroid meds. need to be adjusted. I just got back results today-after insisting they not just look at TSH (as w/Hashimato's, you can't go by/trust that #) they came back as:
TSH: 0.450 - 4.500
My value: 4.950
*T3, Free: 2.0 - 4.4
My value: 1.5
So, I'm certainly not "in range".
Originally I was put on...(?) Cytomel to offset/balance the way I was converting T4 to T3...
I get to see a new Endo. soon. I get VERY sensitive to hot & cold..I can't find a happy medium. I don't feel well at all. Feverish a lot again. But, what's so difficult is that between all my "issues", I don't know what's what anymore...nausea? Chiari? Thyroid? Meds? My goodness...
So poosygirl, do you still have your thyroid?
(Sorry there Beat...go a little off on the Thyroid track - didn't mean to hijack your thread!!!)
Avatar universal
I have EDS and my NS knew so but still gave me a bovine patch and a mesh plate. It's been 6 months and I've had issues ever since. Not sure if  having a reaction to the patch or not. Didn't you originally have a harvested patch and then replaced with bovine? That's really strange. But nothing really surprises me lately! I hope you get to feeling better and can go ahead with your revision surgery soon
620923 tn?1452915648

  Hi...the color on your sclara is related to EDS, I have  it as well....and it could be the dura patch that was used your body may be rejecting it....and could be the reason they thought you needed the shunt....could be they need to replace the patch......

It is very confusing as to what is going on as we all react differently to so many things it is hard to say if you have EDS a bovine patch will not work....just as the Dr can not say I used them others with EDS and they had no issue so you won't either....sigh....

As for the low temps....I always have had low temps, low BP....as long as I can remember,,,,it is a common thread that ties us all together it seems...
Hmm Selma, I oddly opposite- in regards to just the BP. I've been having very high BP-especially after the surgery... it's always commented on every single time (which is a LOT, w/ sooo many Dr. appts. still) my BP is taken. Without fail, it's met with a remark of , "you're BP is quite elevated". But then they sheug it off saying I must just be nervous. But really, it's steadily at @least 154/94+. I've even gone to the little BP stations in stores(when I'm NOT at a Dr's office) & its consistently quite high. As well,  my pulse is always 110+! That always gets an honorable mention too.
So I'm opposite w/BP... I wonder why... It is starting to concern me, as it can't necessarily be a good thing...
620923 tn?1452915648

  Were you DX'd for or tested for POTS?
Hey there Selma, are you asking our lovely Beat if she's been tested/dx'd for POTS? (I'm guessing yes, you are... duh on my part as usual) A likely good stupid question, I know... :/
(I know it's said:  "there's no stupid question", but this actually could be, lol! As it IS her thread & all...   :/   ;)    :/
I wish they allowed emoji's here. They convey more than words sometimes!
620923 tn?1452915648

  There is no stupid question and even tho it is high jacking her thread, I was asking you and not beat about the POTS.....

I do use the member's name b4 each post....doesn't it show?
Ah, ok..so no, I haven't been tested for POTS, I am switching to a new PCP, Endocrinologist, ENT(test the inner ear thing yet again for tinnitus reason) and ... A new NS. I'm getting fresh eyes ears and thoughts from new Dr's(but keeping my awesome NL, Rheumy and...my new PM Dr.)  I plan on furthering such testing to know..read a little about POTS & would like to know more...in depth. The rapid crazy pulse, dizziness while just standing, still fainting, rushes of blood to the head feeling....
Is that what made that m think about POTS? I see my NL in Feb. 25th..I thought I'd bring up my crazy BP as well as pulse (my NL has taken more action in my overall health than my old/ANY PCP I've ever had) So, she's always game to rule things out in order to know what's in. I'll start w/her, addressing the BP & such high pulse? (Or do you think it best to see a cardiologist?) A tilt table test would make a dx?
I forget Selma, do you have POTS? I'll go look things up again, but is the high pulse & BP w/accompanying flushing, dizziness, fainting all fall in line w/a possibility of POTS?
Avatar universal
I also have a low temp. It's usually 97, so like all of you, anything higher than that I start to feel sick. And also the low BP. I have orthostaric hypotension diagnosed from a tilt table test but no one mentioned the word POTS to me. Of course that was way before the chiari diagnosis. It really does seem strange that all of us have these common factors huh ladies?
Bonded for life by an unwanted condition, but blessed to be bonded with you ladies...tethered cords, kinked brainstems, dura patches, "bricks", funky collagens and all!!! Much love to my Chiari Ladies (and men if you're out there of course.  
620923 tn?1452915648

  Deff see a cardiologist to make sure your heart is ok and also look to your families medical history....but we all should have POTS ruled out if we have the symptoms and you do. A tilt table test is a start for this.

From what I understand the BP change flux with change of positions....blood pools in the lower extremities which causes the dizziness when standing or changing positions......

I do not have POTS...my niece does....and a few of my friends....but you seem to fit the criteria for it.
Yes..I agree. My bet is that she'll (my awesome NL who I fear to ever lose!) refer me to a cardiologist. But, knowing her, she will start running whatever test she can. The link between EDS & POTS is quite interesting. I was just reading more about it. It's funny (or maybe not :/ ) when you're reading up on one condition and 2 or 3 dx's you already have show up in said literature. You start to feel less crazy!
Today, my Physical Therapist was telling me how she was talking to a friend who's a Neurologist about me. She said  she'd expressed her wish, for patients like me, that more Dr's would put two & two together-she said "if I can see the connection between my patients w/EDS and a lot of GI issues or Neurological issues, well, there must be something there-don't ignore a connection!". She said that it's frustrating for her to see patients (like us) as we're put in a tough spot...having to learn & connect the dots on our own and then, to have to shout so loud for a doctor to even consider listening to us, b/c they(Dr.'s)  "know more" as she said it.
But I digress...
I go in for more, but different, shots on the 25th, so I'll address the BP & Pulse to my NL. (as well as the other sx's. Interesting, I've had such a hard time for so very long w/ just getting out of bed in the morning due to severe nausea. I'd sit up &nope. Overwhelming nausea. Daily. Like sweating cold flush nausea, for "no reason". I've been on Zofran for yrs b/c of it- maybe there IS a reason for it!) My goodness ...between Botox, ONB's, Trigger Point Injections, etc., one would think I'd be at least semi-ok with needles shoved in my head, neck, face...but no! I shed a tear every time & likely always will! Ugh! I just sooooo DO want something to help!
Oh, today, my PT also told me to be aware that due to EDS, the injections -specifically the trigger point injections- might not help me. She said "your bodies just don't react the way most do...your bodies just kind of do the opposite")
Aren't we so grand? ;)
Avatar universal
Just reading this now, don't know why I'm not getting notifications in my email on posts, but anyway, to answer your question Emme, I didn't have my thyroid removed. It was very swollen when I first went to see my endo but the right meds (Synthroid + Cytomel) have helped that, and stopped the hair from falling and some of the bad brain fog. (So hard to know what is from what, for sure!)

My T3 was a bit high the last few times but I am so tired I begged him not to lower the dose so we are staying with that dose for now. I am not even convinced that what I have is Hashimoto's. He dx me with it even though my antibodies were not raised. Then he said the flattened pituitary isn't affecting my thyroid hormones, so at this point I'm kind of confused lol.
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