Aa
Feeling hot without real fever??
Hello, all. I have been dealing with autoimmune issues for about 15 years now. I never got a formal diagnosis of anything other than fibromyalgia. I've always tested negative for the lupus antibodies, though have had ANA's as high as 1280 and as low as 40. I am on plaquenil and every now and then steroids to get me through some of the rough patches. I wondered if anyone gets bouts of feeling hot/inflammation all over when going through a flare? Not really a fever, per the thermometer, but just feeling like you have a fever? I don't really know any good way to describe it. I feel achy and hot all over, my skin is hot to the touch , and sort of flu-like, but the thermometer always registers as no fever. Anyone else?
Long term antibiotics are not a standard treatment for IC...because there's no infection present. It just FEELS like you have a horrible UTI.
IC (Interstitial Cystitis) is not curable, but it can be managed. Sometimes easier managed for certain people. Unfortunately for me, I'm not one of them.
I tried Elmiron, both orally and I went to my Drs office every week for 16 weeks, had bladder instillations via a catheter, then had to try and hold the meds in for at least 1 hour. Being cathed every week was so not fun. After all of it, all I had to show for it was my liver enzymes dangerously increased and among other issues I had increased stomach pain. So no more Elmiron or caths for me.
In IC, the Glycosaminoglycan (GAG) lining of the bladder is damaged. This lining is what helps protect the bladder walls from inflammation and infection. My Urologist describes it basically like this: Say you have a wooden chair out in the elements. Bladder=chair. Paint/sealant=GAG lining. So if you have a wooden chair outside and it's not got any type of paint sealant or protective coating, the sun, rain, wind, snow, hail, etc are all eventually going to ruin the chair.
With IC and the GAG lining of the bladder being defective, everything we eat and drink can get to the bladder walls since the GAG lining isn't working. So spicy foods and acidic foods can really cause a lot of pain.
Before I was diagnosed, I'd had a lot of kidney stones (unrelated), and it seemed like I had a constant UTI. Dr had me on antibiotics (even though urine showed no infection), and of course the antibiotics caused yeast problems. I was also drinking cranberry juice like crazy. And my bladder pain and pelvic floor pain were terrible.
Turns out cranberry juice is great to try to prevent a UTI...but it's terrible for a bladder that is affected with IC.
My formal diagnosis is MCTD (mixed connective tissue disorder). Rheumatologist says most likely I have Lupus and Sjogrens.
I sometimes have the hot burny "feels like my skin, eyes, throat are on fire" feeling. Usually I'll have increased stomach and pelvic pain as well. My Rheumatologist has said more than likely it's a Lupus or Sjogrens flare. I take Plaquenil daily, and if I'm feeling "flarey" the Dr gives me a steroid shot, and or I'll take a short dose of steroids. For the burny hot feeling I take ibuprofen. Sometimes it helps, sometimes not...
Regards,
C
IC (Interstitial Cystitis) is not curable, but it can be managed. Sometimes easier managed for certain people. Unfortunately for me, I'm not one of them.
I tried Elmiron, both orally and I went to my Drs office every week for 16 weeks, had bladder instillations via a catheter, then had to try and hold the meds in for at least 1 hour. Being cathed every week was so not fun. After all of it, all I had to show for it was my liver enzymes dangerously increased and among other issues I had increased stomach pain. So no more Elmiron or caths for me.
In IC, the Glycosaminoglycan (GAG) lining of the bladder is damaged. This lining is what helps protect the bladder walls from inflammation and infection. My Urologist describes it basically like this: Say you have a wooden chair out in the elements. Bladder=chair. Paint/sealant=GAG lining. So if you have a wooden chair outside and it's not got any type of paint sealant or protective coating, the sun, rain, wind, snow, hail, etc are all eventually going to ruin the chair.
With IC and the GAG lining of the bladder being defective, everything we eat and drink can get to the bladder walls since the GAG lining isn't working. So spicy foods and acidic foods can really cause a lot of pain.
Before I was diagnosed, I'd had a lot of kidney stones (unrelated), and it seemed like I had a constant UTI. Dr had me on antibiotics (even though urine showed no infection), and of course the antibiotics caused yeast problems. I was also drinking cranberry juice like crazy. And my bladder pain and pelvic floor pain were terrible.
Turns out cranberry juice is great to try to prevent a UTI...but it's terrible for a bladder that is affected with IC.
My formal diagnosis is MCTD (mixed connective tissue disorder). Rheumatologist says most likely I have Lupus and Sjogrens.
I sometimes have the hot burny "feels like my skin, eyes, throat are on fire" feeling. Usually I'll have increased stomach and pelvic pain as well. My Rheumatologist has said more than likely it's a Lupus or Sjogrens flare. I take Plaquenil daily, and if I'm feeling "flarey" the Dr gives me a steroid shot, and or I'll take a short dose of steroids. For the burny hot feeling I take ibuprofen. Sometimes it helps, sometimes not...
Regards,
C
Hi, have you looked at the fibro web pages to see if you have any of the symptoms, as they may just be looking for a label... check the websites mostly the facebook ones are great and can help and advise..... Dont just put a label on it make sure you know.. Karen
Did you ever find out what was going on? I have the same symptoms you have described but inconclusive tests.
I suspect that my hot, red forehead; flaky facial skin spots; ringing ears; & hot torso & head with no fever whatsoever..... may be due to taking WARFARIN too long.... also known as COUMADEN.... also used as RATPOISON in high doses... Doctors like to put you on Warfarin for 6 to 12 months at a time if you have had some major trauma, just in case you may develop a blood clot. I had dark spots on my lower legs from trauma (which indicate poor circulation), even before I broke my Tibia & had an operation to put cadaver bone & titanium plate in. They made me inject Enoxaparin sodium, (aka. "pig bowel mucus" ) into my stomach for several weeks. I took several antibiotics both intravenous & pill, though I had already had been taking some for a bad case of leg cellulitis (due to not immediately treating a deep leg scrape while having my poor circulation).
I was prescribed Warfarin for 6 months, but after 4 months the symptoms of extremely hot skin, loud ringing in ears, flaky face, & red forehead began.
I stopped the warfarin for a couple days & the symptoms abated quite a bit.... then I started the warfarin up again several more times upon which each time the symptoms came back with a vengance.... I stopped taking Warfarin & started taking a low dose aspirin which is probably what mostly should be prescribed, if indeed the Warfarin (rat poison) is what is responsible for the symptoms. Just now I had a relapse & had to put ice on my eyes, nose, forehead, back, arms, & hands: as I have to do at least once a da!. It could perhaps be Manopause as my VA doctor suggested, but I bet Warfarin was never as thoroughly tested as it should have been! Any one else have this happen?
I was prescribed Warfarin for 6 months, but after 4 months the symptoms of extremely hot skin, loud ringing in ears, flaky face, & red forehead began.
I stopped the warfarin for a couple days & the symptoms abated quite a bit.... then I started the warfarin up again several more times upon which each time the symptoms came back with a vengance.... I stopped taking Warfarin & started taking a low dose aspirin which is probably what mostly should be prescribed, if indeed the Warfarin (rat poison) is what is responsible for the symptoms. Just now I had a relapse & had to put ice on my eyes, nose, forehead, back, arms, & hands: as I have to do at least once a da!. It could perhaps be Manopause as my VA doctor suggested, but I bet Warfarin was never as thoroughly tested as it should have been! Any one else have this happen?
My symptoms are just like what you've listed. Do you get a crippling fatigue along with the low grade fever? I also have a weird rash on my arm (elbow). I haven't went to the DR bc we are getting ready to move back to NC so I thought I'd wait. But I'm a little freaked out. Maybe it's all hormonal?? I don't know. Some ppl don't believe me bc I look good, or rather, not sick enough.
I think there is much truth to this! I agree 100% that this could very well be a huge part of why so many people are being diagnosed with these types of conditions! or being misdiagnosed period. I think it is becoming an epidemic and what would the doctors say if we even mentioned CHEMTRAILS? They would tell us to take off our tin foil hats! I have been blaming it on CHEMTRAILS for awhile now, I suffer with flu like symptoms 24/7. They have diagnosed me with so many conditions now I have lost track. I truly feel for you all, and sure hope we can get help soon! I also want my life back!
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