is how long I have been dealing with this low-grade temperature and honestly right now there is no end in sight. I have had these low grade temperatures before. A low grade temperature is technically anything (98.8-100.4 and lasts for more than 24 hours). I have had these on and off for quite a while – some were happening before I got really sick – like that brief period I was in college but then it would go away. So my doctors are assuming that my body was already going to trigger whatever auto immune thing this is; but when I got the cellulitis it really woke up! Since 2016 after I was in the hospital I would get low grade temps normally not anything above 100 and it would only last 2-3 days at max. Then this summer in July I had one that lasted for 3 weeks and went a bit above 100 so we went to the doctor and did a lot of blood tests and everything came back fine or low positive, not enough to diagnose anything. August-October it was starting to make a regular appearance lasting a week or 2 then I would break it for a while before it would come back. So in August we tested my ANA again and rheumatoid factor and the regular workup- complete blood count. I was so sure something would come up positive and so was my doctor. If anything “good” was going to come out of this I thought I would finally get a diagnosis. But it came back low positive. Some other markers of inflammation went up but not enough for a diagnosis. I remember being so upset that those tests came back negative I usually try not to get myself in the mind frame that something will show this time because when it comes back borderline or not high enough.. yet… it takes a while for me to get over it. I was “excited” to get my blood work that day; and right before I went in my temp was 100.5. I was so sure something would show a diagnosis. I saw the lab results on my phone a few days later and I was shattered. Now isn’t there something wrong with this picture? I am upset that a test for an auto-immune condition came back low positive and negative. Shouldn’t I be so glad? Well the thing is I have been searching for an answer for 2 1/2 years now and I thought I could finally “close” this door but no I couldn’t. I talked with my doctors and they all said well nothing is really off the table in regards to an auto-immune disease. It can take a while for blood tests to show up. Then my low grade temp went away for a while. Then it came back and hasn’t left. We had Thanksgiving dinner and then on Friday went Black Friday shopping. While we were shopping I just didn’t feel good just thought I was heading into another flare-up came home and checked my temperature and sure enough the low-grade temp came back. Since this wasn’t the first time this happened I let it go 6 days before letting my doctor know. I had a week to get it better so I rested all I could that week. I wanted that temperature to go away. At this point I was feeling more tired and more achy and my joints were just swollen and warm and red anytime I stood up. So in December I had to have another batch of tests run. No ana or rheumatoid factor this time. I realized we were trying to cross things off instead of diagnose. I mean they wanted to check that everything else was ok or if this was another flare-up. I had a lot of blood tests done in December. I even had an echo cardiogram done to make sure a virus wasn’t in my veins or something in the heart which can cause a fever. All of that came back fine minus the few things that showed some inflammation in my body which has pretty much been there since 2016. So here we are 76 days later since this all started. I haven’t had a break or broken my temp. I have consistently had this temperature. After activity it can go up a bit higher so I let my doctor know but we chalked it up to its due to being more active and my body is just in a big flare up again. Currently it has been ranging from 99.5-102.8. My doctor has me taking Tylenol because that lowers it to the 99s otherwise its 100-101. I had an appointment last week and we talked awhile about what to do. So normally adults baseline temperature is somewhere along 98.6 my baseline temperature right now is 100.0 degrees is what my doctor said. So we use that as a range now. So if it goes above 102 I let them know and more tests are run usually. They all agree since all these tests for infections and virus have come back negative and I am not showing symptoms for bacteria or viruses that this indeed is an auto-immune related thing, we just have to figure out what. One of my doctors doesn’t really think this is a problem at all which is extremely frustrating but it’s out of my control so I just talk with the doctors that are wanting to help. If I am being honest, I am getting really tired and my energy is growing thin. Most of my joints have been red and swollen and hurt. My joint pain has definitely increased. My rash on my cheeks “the butterfly” shaped one makes an appearance every so often. My body is tired. I had a dental implant /gum graft surgery that got infected and was on a high round of antibiotics – my fever didn’t go up or go away during that time either and since I couldn’t take pain meds; I was told to also be taking Advil for the mouth pain so 4 Advil and 2 Tylenol and still the lowest it would go was 99.3. So that also made my doctor think this is more along the lines of auto immune. I technically did get another diagnosis. My jaw joints have been hurting a lot more lately and locking and feeling out of place. My dentist is working on making a special type of retainer to help with that pain. That has been happening the past year on and off but not too bad, but since December it’s been pretty painful. Which is also connected to some of the auto immune conditions I keep being tested for.
There are some auto-immune diseases that you can run a low-grade temp for quite a while. It’s your body just getting confused with inflammation and in return you run a low grade temp. I kind of feel like I am laying on a floor trying to get to the door but it’s almost closed and I can’t get to that door. (as in I don’t feel good and I am so close to an answer yet so far away and it’s isolating and lonely). I can’t say I’m shocked I am running this temperature because I was told this could happen. The part I am just frustrated with is that it’s providing “answers” but not a diagnosis, but I know one day it will. So just remember that next time you see someone who has a chronic illness they may “look” fine on the outside but a lot can be going on (example in the 2 pictures below). I’ts not like the fever is really showing up on me. I hide it behind a smile and focus on the day. These chronic illnesses and auto-immune diseases are hard to navigate because there isn’t really a handbook and there aren’t really cases alike, it’s not black and white, but rather a huge grey area. I try to focus on each hour or minute instead of the whole day or a week. It’s hard to think will I have this another month? It’s easier to get through the day by thinking of what I can control in the next minutes or hours rather than what I can’t control. I am trying to keep my stress really low also and take it as easy as possible as I can at home. It’s a little weird also because when the low grade temp first started I could really feel the chills and sweats. I get more chilled than sweat but now it’s just kind of normal for me. I sometimes forget oh yeah this isn’t normal to be feeling like this. If this lasts till February 23 that will be exactly 3 months. I’m not sure what that means, but to me, that just seems weird and exhausting; but on I will go because we only get one life to live and I try to make the most out of that. It was nice to finally get my thoughts about this written down. I am hoping to blog a lot more. I know I feel like I say that all the time. I have started writing it in my planner which is helping me stay on track. This blog was hard to write because I don’t like complaining. I hope this raises awareness for what a lot of people with chronic illnesses are going through. . We have no control over what happens in the day to day and in a day a new symptom can come up and stay awhile.
|Left- amazing what a smile and lip gloss and earrings and lighting can do for someone with a chronic illness |
Right- no lip gloss or earrings and no extra lighting (how I feel underneath that smile)
“Come to me, all of you who are weary and carry heavy burdens, and I will give you rest.” Matthew 11:28