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blindeyepug
@blindeyepug

Posts: 164
Joined: Apr 30, 2016

Have a few autoimmune disorders - now have consistent low grade fever

Posted by @blindeyepug, Apr 28, 2017

Hi, I usually try not to complain, but I am very frustrated. I have RA, Sjogren’s and Fibro along with spinal stenosis, osteoporosis, depression. I try really hard to stay active, stay away from pain medications and stay positive. Well, I am really down. I have had a low grade fever (99.8 to 101.2) for over two months together with, if possible, even more exhaustion than usual. I am really struggling. I have been to my rheumatologist who took bunches of blood tests. All came back within normal except I have low B12 and slightly elevated C3C. I recently had chest, abdomen and pelvic scans taken that came back clear. Now I am suppose to go to an infectious disease specialist. I am very frustrated and really tired of feeling sick and tired all the time. My boss (I still work part time), husband and family do not understand the exhaustion. I am getting “those” looks again like I did when I first started having fibro symptoms. I just wonder if any one else has had this happen and, if so, what was discovered? I just am super depressed. I feel as if I have taken ten steps backwards.

REPLY

@blindeyepug, I’m sorry you are feeling so frustrated. I bet that’s really tough to handle daily. Have you thought about getting a second opinion from a different care provider?

Have they (doctors) ruled out ovarian cancer?

Have you been to a rheumotologist? If so, I would get a second opinion. Some autoimmune diseases give you low grade temps (lupus). I would just keep researching and see if you can get another opinion. You know your body better than everyone else. I see you are avoiding pain medicine, but are you taking anything? RA will just get worse and attack your joints if you don’t take anything to stop it. I hope you get some answers. We are all here to support you.

@jamienolson

@blindeyepug, I’m sorry you are feeling so frustrated. I bet that’s really tough to handle daily. Have you thought about getting a second opinion from a different care provider?

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I think I will probably try to get a second opinion. Still having fevers and extreme fatigue. Tests all turning out “normal”. I figure they just have taken the right test yet!

@sonwil

Have they (doctors) ruled out ovarian cancer?

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@sonwil I had a total hysterectomy several years ago, so it isn’t ovarian cancer or cervical. Thanks, though. Good thought.

@lisabeans Yes, I do have a rheumatologist. Her tests rule out Lupus. I already have rheumatoid arthritis, Sjogren’s syndrome and fibromyalgia. My sed rate was not high. All blood tests came out normal except low B12 and an elevated C3C (whatever that is). Anyway, scans of chest, abdomen and pelvis came back clear. However, I continue to have low grade fever (for over two months between 99.8 and 101.2) and extreme fatigue – more than usual. My primary doctor doesn’t know what could be causing it, either. She took some blood cultures on Saturday and I have yet to get those results back. But they have ruled out any type of hepatitis, lupus, any sexually transmitted disease (which I didn’t even know they were testing for, but it was clear!) and certain cancers. So, I guess I will perhaps get a second opinion. Very frustrating. I was really adjusting and moving forward with my various autoimmune disorders and my spinal stenosis, but then this happens! Now I am frustrated, tired and anxious once again. Thank you to all who have replied. I greatly appreciate your input and thoughts.

Hi @blindeyepug,

I’m really sorry that you are experiencing such debilitating symptoms; life with autoimmune disease can be miserable!
I do agree with @jamienolson though: please consider getting that second opinion soon.
Also, stress and anxiety can trigger flare ups with autoimmune diseases, so try and find ways (meditation?) to help you feel better, until you find out what’s causing the fatigue and fever. And, keep in touch…we’re here for you.

@jamienolson Thanks so much. It really means a lot to be able to turn to people who truly understand what I am going through. Family and friends just don’t really get it,- even though I am lucky that mine try to be supportive. It is just hard to wrap your head around unless you have actually had these problems and frustrations. I will go get that second opinion. And I will keep you updated on what happens. Again, thank you so very much!

@blindeyepug, Laura, did you find out yet whats wrong? I found that definition for you: C3C, https://www.urmc.rochester.edu/encyclopedia/content.aspx?ContentTypeID=167&ContentID=complement_c3_blood. You should be able to find it here. Too much info to copy and paste. Im feeling better btw. No ambulance for me. I hope you’re feeling better soon. Love, Judy

@lisabeans

Have you been to a rheumotologist? If so, I would get a second opinion. Some autoimmune diseases give you low grade temps (lupus). I would just keep researching and see if you can get another opinion. You know your body better than everyone else. I see you are avoiding pain medicine, but are you taking anything? RA will just get worse and attack your joints if you don’t take anything to stop it. I hope you get some answers. We are all here to support you.

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I have just recently be diagnosed with LUPUS. It was a freak discovery through a skin biopsy. Waiting tobre RA dr. But my whole life I have run low grade fevers for “no reason”. No one could ever know why. I am almost 70. I’d bet lupus could be a consideration.
God bless.

@blindeyepug

@lisabeans Yes, I do have a rheumatologist. Her tests rule out Lupus. I already have rheumatoid arthritis, Sjogren’s syndrome and fibromyalgia. My sed rate was not high. All blood tests came out normal except low B12 and an elevated C3C (whatever that is). Anyway, scans of chest, abdomen and pelvis came back clear. However, I continue to have low grade fever (for over two months between 99.8 and 101.2) and extreme fatigue – more than usual. My primary doctor doesn’t know what could be causing it, either. She took some blood cultures on Saturday and I have yet to get those results back. But they have ruled out any type of hepatitis, lupus, any sexually transmitted disease (which I didn’t even know they were testing for, but it was clear!) and certain cancers. So, I guess I will perhaps get a second opinion. Very frustrating. I was really adjusting and moving forward with my various autoimmune disorders and my spinal stenosis, but then this happens! Now I am frustrated, tired and anxious once again. Thank you to all who have replied. I greatly appreciate your input and thoughts.

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My dermatologist told me that blood tests for lupus are hard to test +. She said the skin biopsy was bitter-sweet. I guess we just have to keep searching. I stay so tired. I could sleep all day.

@lisabeans

Have you been to a rheumotologist? If so, I would get a second opinion. Some autoimmune diseases give you low grade temps (lupus). I would just keep researching and see if you can get another opinion. You know your body better than everyone else. I see you are avoiding pain medicine, but are you taking anything? RA will just get worse and attack your joints if you don’t take anything to stop it. I hope you get some answers. We are all here to support you.

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Hi @whyus,

Welcome to Connect. Thank you for joining this discussion and for sharing bit about yourself. You mentioned having lupus e; did you mean Systemic lupus erythematosus (SLE)?

Here is some information from Mayo Clinic that you may wish to view: http://mayocl.in/2pJQ13K

I’m hoping @seesawer @sandpiper09 @jewel8888, will also join in with their insights

@whyus are you taking any medications presently? May I ask if you also have rheumatoid arthritis?

Looks like they found an answer. Now I have Lupus to add to everything else. I am really depressed.

@lisabeans

Have you been to a rheumotologist? If so, I would get a second opinion. Some autoimmune diseases give you low grade temps (lupus). I would just keep researching and see if you can get another opinion. You know your body better than everyone else. I see you are avoiding pain medicine, but are you taking anything? RA will just get worse and attack your joints if you don’t take anything to stop it. I hope you get some answers. We are all here to support you.

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I recently have been diagnosed with Lupus, also. I am 56. I have rheumatoid arthritis, fybromyalgia, spinal stenosis and now Lupus. This apparently is what has been causing my recent months of low grade fevers. Well, on ward to figuring out how to fight this new illness.

@lisabeans

Have you been to a rheumotologist? If so, I would get a second opinion. Some autoimmune diseases give you low grade temps (lupus). I would just keep researching and see if you can get another opinion. You know your body better than everyone else. I see you are avoiding pain medicine, but are you taking anything? RA will just get worse and attack your joints if you don’t take anything to stop it. I hope you get some answers. We are all here to support you.

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Hi @blindeyepug,

At times life throws us some serious curve-balls, and I want you to know that the Connect community is here for you; you are not alone.
@blindeyepug, did your doctor specify whether you have a certain type of lupus?

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