# Hot knees at night for years, no diagnosis. Help? **URL:** \ **Category:** General\ **Created:** [August 28, 2018, 4:00am UTC](https://forum.livingwitherythromelalgia.org/t/hot-knees-at-night-for-years-no-diagnosis-help/2783 "2018-08-28T04:00:00Z")\ **Posts on this page:** 9\ **Page:** 1
**Author:** ![srwz](https://avatars.discourse-cdn.com/v4/letter/s/6bbea6/32.png) [@srwz](https://forum.livingwitherythromelalgia.org/u/srwz)\ **Post date:** [August 28, 2018, 4:00am UTC](https://forum.livingwitherythromelalgia.org/t/hot-knees-at-night-for-years-no-diagnosis-help/2783/1 "2018-08-28T04:00:00Z")
I’m 24. My knees get red and uncomfortably hot at night, are painful most of the time. It’s been going on for several years now, and I still can’t really identify any specific triggers, it just happens at night about 50% of days, whether I’ve been on my feet all day wearing wedges for work or lying in bed all day. Always at night, though. I’ve been tested for RA, Lyme, and Gout all several times, nothing shows up. Bloodwork always comes back completely normal, X-rays all look normal, everything. I’ve seen like at least 8 different doctors over the past several years, including an orthopedist, 2 neurologists, a rheumatologist, a physical therapist, a psychiatrist, a migraine specialist, you name it. Nobody can figure out what’s wrong and it makes me feel like I’m going bonkers. I am a clinical psychology doctoral student, so I’m pretty empirically-minded and reasonably well-versed in medical terminology, and I’ve spent so many nights staying up until 4am reading medical journal articles on types of symmetric inflammatory arthritis, trying to find case studies of 20-something-yo women with pseudogout, ANYTHING that sounds like it matches my symptoms. Last night was one of those nights, and I discovered erythromelalgia - it’s the closest thing I’ve found thus far to describing my symptoms, but I know it’s primarily in the hands and feet (and I do get red/hot/swollen fingers and feet occasionally, but they’re nowhere near as common/impairing as my knees) and I just was wondering if anyone has experienced what I experience? It’s always both knees, usually at around the same time, but sometimes one starts getting red and warm first and then the other follows suit. Can anybody tell me anything?? ---
**Author:** ![ModSupport](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitherythromelalgia.org/modsupport/32/1554_2.png) [@ModSupport](https://forum.livingwitherythromelalgia.org/u/ModSupport)\ **Post date:** [August 29, 2018, 4:30am UTC](https://forum.livingwitherythromelalgia.org/t/hot-knees-at-night-for-years-no-diagnosis-help/2783/2 "2018-08-29T04:30:25Z")
Gosh, srwz, that’s really puzzling and frustrating. Can I just ask a question out of the blue? Do you have any issues, even minor, with your skin or your nails? Red hot swollen fingers? Like one finger that suddenly goes red like a sausage? I’m scratching my head … Seenie from Moderator Support ---
**Author:** ![nwgirl](https://avatars.discourse-cdn.com/v4/letter/n/da6949/32.png) [@nwgirl](https://forum.livingwitherythromelalgia.org/u/nwgirl)\ **Post date:** [August 29, 2018, 6:15am UTC](https://forum.livingwitherythromelalgia.org/t/hot-knees-at-night-for-years-no-diagnosis-help/2783/3 "2018-08-29T06:15:00Z")
Hi swrz - have you seen this discussion? > [@EM or raynaud's?](http://forum.livingwitherythromelalgia.org/t/em-or-raynauds/2667): > > I was Diagnosed with Fibro about 7 months ago. But nothing explained why I was getting red knees in the evenings. It was winter and I would really layer clothes because I get cold easily. If I lay on the couch at night (under a huge Blanky) I would burn up and my knees go red . Every night. It moved to my feet too. Swollen itchy (for awhile toes) and ankles. Its spring here now and really hot I was wearing a 3 quarter soft cotton pants but in the sun in heat while walking and it occurred again. … ---
**Author:** ![srwz](https://avatars.discourse-cdn.com/v4/letter/s/6bbea6/32.png) [@srwz](https://forum.livingwitherythromelalgia.org/u/srwz)\ **Post date:** [August 30, 2018, 8:48am UTC](https://forum.livingwitherythromelalgia.org/t/hot-knees-at-night-for-years-no-diagnosis-help/2783/4 "2018-08-30T08:48:29Z")
Actually yeah, my fingers do do that sometimes! No issues with my nails though, other than my bad habit of biting them when stressed. ---
**Author:** ![srwz](https://avatars.discourse-cdn.com/v4/letter/s/6bbea6/32.png) [@srwz](https://forum.livingwitherythromelalgia.org/u/srwz)\ **Post date:** [August 30, 2018, 8:58am UTC](https://forum.livingwitherythromelalgia.org/t/hot-knees-at-night-for-years-no-diagnosis-help/2783/5 "2018-08-30T08:58:13Z")
I hadn’t, that does look pretty similar to my symptoms! My knees look just like those pictures when they flare up, they turn bright red (sometimes starts out blotchy but then spreads over my entire kneecaps) and are hot to the touch. Heat aggravates them at night too…like if I’m just sitting on the couch watching a movie with my fiance and he puts his hand on my knee, just the warmth from his hand can make my knee flare up. ---
**Author:** ![CarterDK](https://avatars.discourse-cdn.com/v4/letter/c/0ea827/32.png) [@CarterDK](https://forum.livingwitherythromelalgia.org/u/CarterDK)\ **Post date:** [August 30, 2018, 5:48pm UTC](https://forum.livingwitherythromelalgia.org/t/hot-knees-at-night-for-years-no-diagnosis-help/2783/6 "2018-08-30T17:48:08Z")
EDIT: I should have read the entire thread before commenting, haha. Yes, those are mine. Your symptoms sound very similar to mine. I take 2 drugs – mexiletine and propranonol. ![f4842ee69a1e0fb9248c44cc4cd1d81829b60fb8_1_375x500](https://canada1.discourse-cdn.com/flex027/uploads/ben_erythromelalgia/original/2X/e/e348d9577680dceeff39a8a4b89d76fac553308e.JPG) ---
**Author:** ![CarterDK](https://avatars.discourse-cdn.com/v4/letter/c/0ea827/32.png) [@CarterDK](https://forum.livingwitherythromelalgia.org/u/CarterDK)\ **Post date:** [August 30, 2018, 6:02pm UTC](https://forum.livingwitherythromelalgia.org/t/hot-knees-at-night-for-years-no-diagnosis-help/2783/7 "2018-08-30T18:02:55Z")
FWIW, I was also thought to have both rheumatoid arthritis and pseudogout initially. Pseudogout was suspected first, but ruled out after an aspiration of the knee (which hurt like crazy bc the knee wasn’t swollen) and I vetoed the seronegative RA diagnosis after about 10 days when it became apparent to me it was wrong (fortunately i only took two doses of methotrexate). I settled on EM after just 4 weeks of symptoms, but it took an additional 6 months before I found a doctor who could treat it. My doctor is an anesthesiologist / pain specialist. ---
**Author:** ![lynne4cobis](https://avatars.discourse-cdn.com/v4/letter/l/dec6dc/32.png) [@lynne4cobis](https://forum.livingwitherythromelalgia.org/u/lynne4cobis)\ **Post date:** [March 20, 2019, 4:00am UTC](https://forum.livingwitherythromelalgia.org/t/hot-knees-at-night-for-years-no-diagnosis-help/2783/8 "2019-03-20T04:00:14Z")
Yes. Both knees start heating before I have a flare, though my constant pain is only in my feet and often alternate burning in either one, but both feet and legs are swollen and discoloured now. ---
**Author:** ![Alv](https://avatars.discourse-cdn.com/v4/letter/a/eada6e/32.png) [@Alv](https://forum.livingwitherythromelalgia.org/u/Alv)\ **Post date:** [June 6, 2019, 10:41pm UTC](https://forum.livingwitherythromelalgia.org/t/hot-knees-at-night-for-years-no-diagnosis-help/2783/9 "2019-06-06T22:41:43Z")
Hi Carter, how are your symptoms evolving? I guess DC in summer is has to be tough… Best!