My husband retired a few years ago .... He was a diagnostic technician ,sorting through his old tool box he pulled out an INFRA RED TEMPERATURE GUN ... When I asked him what it was used for he said to detect over heating in a car engine .... I asked if it worked on skin .... We tried it .... It does !!! .... So simple to use just point the "gun" and squeeze the "trigger" and the digital display will record the temperature! ..... There was at least 6 degrees difference in heat between the toes of my left foot !!! ....The two larger ones were cooler due to the Raynauds the rest of my foot Hot ! ..... I took it with me to the doctors to show him the un natural heat coming from my hands/feet and he was impressed enough to send me on for further investigation ..... I now have my diagnosis for EM ..... xx
that is good to know - and actually quite interesting - I would love to have one of those things to use sometimes I feel that parts of my body have a heating pad inside and thenI always think that it's just my imagination - with this Temp.Gun I could measure and find out.
Just click on the ebay link above and you can get an idea of what they look like and the price ... They are not very expensive and it's amazing to see the skin temperatures fluctuations sometimes only centimeters apart ! xx
When I was first diagnosed (by a medical physicist) they used an early infra-red camera. You even had to put liquid nitrogen in the tank so it could work. That was back in 1986, when I was 8 years old.
I was the first person to have an EM flare captured by infra-red. They couldn't believe how hot my foot was compared to the normal right foot. The display used colours to display different temperatures, with purple as the coldest and red as the hottest. Anything too cold was black and anything too hot was white.
They had to recalibrate the settings on that display upwards seven or eight times before they could make my left foot anything other than white! They measured a huge temperature increase, even above what I had when my foot wasn't flaring. They also used a laser (taped to my big toe) to measure the bloodflow and that showed that the blood-vessels were just open all the time and didn't show any of the normal opening and closing.
They now use the more advanced versions of those tests to diagnose EM. Your husband's device is a decendant of those two systems. I still have the staff who were there at the time come and see me every time I go down there. My doctor at my WCA (assessment for benefits) had worked there at the time and remembered my case from that time, with the head physicist running in and telling everyone to "come and see this!"
I used to love going to that lab because I knew they weren't allowed to stick needles in me! That may be the reason I studied astrophysics rather than medicine (although not being able to physically cope with a medical degree was a factor too... :) )
You have had this since you were 8 years old ! ..... My darling girl I feel so ashamed of my bout of self pity ! .... So full of admiration that you have not let it overtake your life ! ..... You are still a young woman of 35? .... Are you able to manage your pain with medication ? .... I know it's trial and error .... EM seems to be tailor made to each individual ! ...What works for one doesn't necessarily work for another .... Take care and thank you once again xx
I developed it at seven but don't feel ashamed, your situation sounds like hell on earth.
I'll be 36 at the end of the month and thanks for the young woman bit, that was great for my self-esteem :).
Are you seeing anyone who specialises in EM? I don't know where in the UK you live, but anywhere north of Manchester seems to be sent to Dundee, where there is one of the world's foremost experts in EM, Prof Jill Belch. I am very lucky and that session at age 8 led me to see her and I've been under her care ever since. Even if you're further south, you can ask to be referred there.
My pain is currently out of control but that is mainly due to my being allergic to a treatment (Iloprost) that worked well for me. I also found a painkiller that helped (pethidine) but it was stopped because they assume you're a drug addict if you tell them pethidine is effective for your pain. Sadly, that isn't a joke.
There is a lot you can try and seeing someone who is an expert will help with deciding which drugs would be best. Please don't think that your EM will never get better. Primary EM can be difficult to treat because the doctors almost always see secondary EM, which reacts differently. Prof Belch compared it to diabetes. There's the type you get when you're young, as your body stopped producing insulin and you need insulin injections for life. Then there is the more common type that develops in later life, where your cells have become resistant to insulin or your pancreas is worn out and stops making it. That type is normally controlled with diet and tablets. The two types of diabetes are really different conditions with similar results
Primary EM is like the first type of diabetes. People who have the first type of diabetes but try to control it with diet like the second type, will die after a few weeks. Because the doctors see so many more cases of secondary, just as they see more cases of the second type of diabetes, they assume that a particular drug will work. It also means they may not think of a drug that doesn't help secondary EM but can help primary EM. Fortunately, EM is not fatal! That means that there may well be treatments that might help.
I hope you can see someone who really knows EM and can get the help that you need.
Take care of yourself and please just ask if you need any help or a shoulder to cry on/someone to moan to.x x x
Was the temperature of the skin(affected area) higher during a flare?
Or is it just a neurological(burning) sensation one experiences?
“(A, B) Initial DITI (digital infrared thermal image) shows the higher temperature of the affected area of the right hand specifying vascular markings.”
Affected area displayed a higher temperature; therefore, hotter. I’m assuming your areas displayed similar results?