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. Went to a Rheumatologist and was diagnosed with Raynaud’s ? But its hot now and it still occurs. Hot showers provoke flares. can anyone relate ?
My rheumatologist initially diagnosed me with Reynauds too! I can definitely relate because I burn up in every season. Winter and fall because of blankets and warm clothes and summer and spring because of the sun and warm weather. Also, I can only take cold showers, or else my feet start to burn painfully.
I read that raynauds and erythromelalgia can coexist ? I do have some features of raynauds iv had to come to realize these last few days . There have been a few cold fronts so far while transitioning to spring and I see my hands do turn purple . But this doesn’t explain why I burn up in heat .
I also have both conditions or at least something that mimics both. But what you are explaining and experiencing definitely sounds like EM to me. My feet and knees (and face and left hand) are also affected. My feet used to be bright red after a shower. However, then we realize that my high blood pressure medicine was aggravating it. Since I switched from amlodipine to lisinopril, I get much fewer flare ups. They used to be daily.
Thank you for your reply. So your blood pressure medication was a factor?
I stopped taking all medication. I still have symptoms. I did contacted the Rheumatologist she just said she is reluctant to diagnose me with EM. Because knee reaction is rare. She also told me prior that Raynaud’s doesn’t normally occur within the area of the knee…great answers. I showed her I am forming nodules on my fingers (inner joint) .She just said they look like nodules don’t worry about it .Pretty uncertain about my diagnosis.
Omg finally people to talk with who can relate to my same issues. I first went to my PCP because my hands and toes will turn freezing and look light in color but not pure white like my mother who also has raynauds so she sent me to a rheum dr also he was useless lol. He turned me away saying I did have something happening but whatever it was would not kill me. My hands go from one extreme to the other cold to burning like flame on is what I think of and swollen and has become increasingly worse over the last year. It also effects my feet when I work 12 hr shifts I have to pull my socks and shoes off at the desk because they are on fire. If it is hot out my feet start even in flip flops but so much worse in shoes. but then I struggle back and forth because there cold at times with the a/c. This effects not just my hands and feet but my face my ears parts of my arms and parts of my legs. I try to sleep at night and I have to just hold an ice pack to try to cool down my hands because there burning. I just saw vascular he said raynauds but I feel as though I have EM and raynauds both I just cant seem to find a dr that will listen and help I have so many pics and even video I have like 100 flares a day back and forth all day and doctors dnt have any answers for me other than the one who said yes raynauds I dnt know where to go from here.
Well if you do have EM it sounds more intense than mine.(if I do have EM ) .
Raynaud’s I have for certain hate cold much more than I hate heat! so no I wont be laying in bed with an ice pack … I actually gained some control for awhile because I have Fibro and Raynaud’s I started going to gym it was pretty wild in the beginning … but after awhile it worked. Now while writing exams I do not go and it all started from the beginning . I live in South Africa and we have had some hot days but not as before. I’m waiting for December for 40 Degrees Celsius weather to " test my EM theory out". If you hold ice packs do your hands not hurt for Raynaud’s?
Where do you go from here ? really not sure … I will be using cannabis oil if this persists and gym proves to become too painful during flares. Your body has cannabinoid receptors . And apparently the oil helps a great deal with vasoconstriction and vasodilation. I know its not the conventional thing to do . Our country has legalized it ( with laws and regulations so called constraints). I have some one on my instagram from USA ( assuming you are from there wild assumption hahaha ) who actually produces and sells Hemp oil because obviously not every country has legalized cannabis …and sorry to the people I offend who still think cannabis is a hardcore drug I don’t mean to offend anyone . Just my opinion .
I just saw this post. I am very interested in talking to you. Because you have what I have. In nearly three years of using this forum I’ve never seen anyone with symptoms the same as mine. Mine started in winter, too. In fact, it started during the coldest week of the year when temperatures were in the single digits (-12 to -17 degrees celsius). I first noticed the phenomenon after I had a blanket over my legs.
My knees look exactly like that !! Are u diagnosed with EM ? Are your knees every sore ? Or make weird noises ?
Do you have symptoms in summer at all ?
Sorry for the slow response. My doctor thinks I probably have EM. My knees are not really sore. They don’t make weird noises either, but I do have some crepitus in my left knee from an injury. Symptoms are elicited by heat.
Do you have any other health conditions? Were you athletic before your current problems began?
I was diagnosed with fibro and Raynauds .
no other conditions that I am aware of .
I was very athletic yes. The doctor told me she was reluctant to diagnose me with EM . but like I just got home from an exam , its really really hot here and now after removing my long pants and shoes my feet and knees are hot and sore.
How come they have no diagnosed you ? You say they probably think you have EM.
do you have other conditions ?
I have Essential Tremor, a benign neurological condition. It’s a familial condition. No one else in my family has EM, however.
I almost certainly have EM. I hesitate though because there isn’t a definitive test. It’s observational. My doctor is the same.
Well my fingers and toes will also become very cold and sting, however when I come home from work and start to get ready for bed my room is hotter upstairs than the rest of the house at least to me and as I try to lay down I start burning to the point that the ice packs help and they dnt hurt to use them because my hands feel like flames coming up in between my fingers ugh it sucks for sure lol. Its a constant back and forth to cold then to hot it’s like my body cant make up its mind what it should be ya know. In the summer my hands and feet both sweat pretty bad and then begin to burn. The cold bothers me but the heat is 90% worse. I have read a lot of things about cannabis oils but my state of Arizona is not on board as of now. I have been seeing my pain doctor for the last 2 years for a neck fusion I have I wondered if my neck brought this on or was it just dormant until now. I hope you find the right thing that will help to ease your pain its terrible to be like this and no one can help you…
Hi CarterDK ! Yesterday was a break through for me . After false diagnoses of raynauds and fibro i was put on a machine called a diacom . (Read up on it very interesting ) i was then rediagnosed with Lyme disease . Our health department refuses to agree that lyme disease is in our country … But many many ppl beg to differ . Now all makes sense . The only problem is how long it took to get the diagnosis . The parasites have been able to replicate and go wild in my body and joints .
I think you should give more credence to the information from the South African health department than whoever diagnosed you yesterday. The cursory glance I took at Diacom is not favorable. Specifically, on Diacom USA’s website (www.diacom-usa.com), they contain the standard liability statement needed under US law to prevent civil and criminal prosecution for false medical practices:
The statements found within these pages have not been evaluated by the Food and Drug Administration. If a product or treatment is recommended in these pages, it is not intended to diagnose, treat, cure, or prevent any disease.
Diacom needs this liability statement because bioresonance therapy is pseudoscience and practitioners have been sued by the US government in the past.
Further, WebMD states:
There is no reliable scientific evidence that bioresonance is an accurate indicator of medical conditions or disease or an effective treatment for any condition.
Whoever diagnosed you yesterday is not a trustworthy medical professional. They are taking advantage of your desperation.
Simply put, you are being scammed.
Thank you for the reply Carter… I understand Im not very sure either . I dont like to give any South African department credit hahahaah but I myself have thought a lot about the machine and the next machine called the Rife machine which supposedly " Shocks" the bacteria bahaha … I am drinking some natural products and thereafter a detox. I decided to do it because it cant cause harm to try… thank you for the information you sent me . I will read up on it .