Funny thing about that test Nel. When I first went to the doctor they thought what I was describing as my EM could have been Raynauds before they knew EM existed. I didn’t have Raynauds’s at the time just EM. My tests were normal no surprise there because I didn’t have Raynauds’s! Less than 2 months after the test was given I started and developed a severe case of it where the doctor prescribed me meds to take but only if I couldn’t get circulation back for an extended period of time because they do cause EM flares.
I don’t know about you but the severity of my Raynauds is not just limited to the temperature I’m exposed to but it just naturally fluctuates over time just like my EM. Sometimes I can touch food in the freezer with no problem other times I can’t touch refrigerated products such as butter or refrigerated biscuits. Maybe when your test was taken you were not at your most severe.
My doctors have never seen my severe episodes because it’s always too warm in office that I always burn there. They made my diagnosis by the photos I brought in. Their jaws just dropped upon seeing the extent of it. Have you tried bringing in photos?
Now that’s really interesting Alina. My daughter has those thick sore ‘blisters’ on the soles of her feet. Not so much now but before her pregnancy. I have never had them. My feet swell and are tender and of course burning but never a blister on the soles. The plot thickens.
Thanks for the replies - lots of food for thought.
You are so funny Nel. I say that but this truly is one big mystery isn’t it? If only we all had the same EM it would be easier to diagnose and treat but this anything goes as far as symptoms makes this just that much more difficult to manage.
Our guy was diagnosed with EM last spring. A few weeks ago we saw the Dr. To discuss his ADHD meds and determined he needed an increase in dosage. He had a great response to the new dosage but 5 days later had an attack of corpse blue toes. He had never had the blue cold symptoms before, only the hot red blistering EM symptoms. He then went into a 4 day flare of extremes one toe would be hot blistery red and another blue and some even having both on different joint/tissues! He missed school a full week. We saw his Drs and they are referring us to a pediatric rheumatologist and a physiatrist for the med management. What makes this all doubly scary is that he got a staff infection (it was officially the grossest thing I have ever seen). It was on his knee and we can’t help but wonder if it was an ulser caused by all these other issues!
Re value of thermographic measure of digital skin temperature after cold challenge(15 degrees C, 60 s test). Considered that the cold challenge test itself has good diagnostic value but argued by some researchers that its your actual baseline skin temperature that is a significant predictor of Raynauds, alongside clinical history . Generally they take your temperature measurements at baseline, immediately postimmersion, and 10 min after immersion using a portable radiometer. Based on that premise, any fall in temperature on cold immersion and the subsequent rewarming rate could be deemed a moot point. You definitely have EM so quite possibly responded quicker through the 'vasodilation' warming phase- just a thought. With EM/Raynauds co existing , maybe the baseline is the better gauge.
Other common tests include:
- blood tests to check your blood count (the number of white and red cells in your blood) and your immune system (your body’s self-defence system). A test for antinuclear antibodies (ANA) can be used to tell if your condition is primary or secondary Raynaud’s.
- an x-ray to look for an extra rib at the base of your neck (called a cervical rib), which can cause the condition by putting pressure on the blood vessels that supply your arms.
- a test called nailfold microscopy (capillaroscopy). This involves having the tissue at the base of your fingernail looked at under a microscope to check the small blood vessels.
- a cold stress test (thermography) which can show how quickly you respond to cold. It involves using cold water and records how quickly you warm up again.
Sorry , Nel. Thats terrible for you. So stressful having to argue for repeat tests etc... Iloprost infusions were you meaning?
Nel said:
Has anybody got any views on the thermography tests they do to gauge the extent of Raynauds? My daughter and I both had the freezing water test and I was told that my hands returned to warmth in a reasonably short space of time whereas my daughter's hands took far longer than was normal. Only she has never shown any signs of Raynauds - no blanching of fingers nor numbness nor chillblains nor cold hands and feet while I have had all those since my early 20s and nose and ears as well as hands and feet. They said they detected vasospasms.
My fingers go white numb at the hint of a draught and can take ages to return to red. They are more often than not a dusky grey pink when not too cold and brilliant red when flaring. When required to stand in a playground in Winter my fingers have remained dead white for 25 minutes until I feared gangrene:). Now of course I have EM as well and an EM flare will follow the Raynauds. My daughter however does have symptoms of EM with red swollen soles of her feet and red tingling hands when near a heat source. They were worse before her pregnancy and the baby is coming up to 9 months old.
When I returned to the hospital,the purpose of the appointment at their suggestion to discuss infusion possibilities, the nurse told me that based on the thermography test results my Raynauds was not severe enough to warrant infusions. I am thoroughly confused.
Alina, what you're describing is exactly my experience. It's amazing to know that we share this in such a precise way.
Alina Delp said:
Sorry it had taken so long to answer your question Nel. I just now saw you asked me one. Regarding these particular kind of flares. If I get pernio/RAYNAUDS in my feet for too long...say non stop for the most part for a couple of weeks or more I get these blister like sores on my feet where the skin is that has had limited or no circulation for a while. They are like blisters but deeper if that makes sense. It is all but impossible to walk on that foot if these sores are on the bottom of your feet because they are so painful. unless on say your big toe where you can lift it up and limp along. I have only gotten these type sores on my feet but my Raynauds in my hands have never lasted more than a few hours at a time where the feet can last week's to a couple of months where I flare all morning and day ( unless I'm walking then I still burn ) then every night I burn for a few hours. I probably have no circulation from the top arch of my foot throughout the ball of the feet and toes for 15-20 hours a day for up to a couple of months straight. So I only get these type in my feet.
I hope that clarifies it a bit more for you Nel. I promise to check back on this post if you have any more questions.
I am so sorry Stacey. Your poor little guy. It is a common problem for some with EM to also have cold corpse blue feet. I know I can get what you described by having patched burning and cold and blue or white on the same foot. Truly strange. For the cold blue feet it helps me to keep them elevated . This is helpful with burning too although you may need to add cooling to the burning mix and very mild slow warming to the cold problem making sure to check regularly for feet to return normal and not warm . If left to get warm the burning will just take the plave of the cold blue toes. My doctor told me this is called a neuro vascular instability. So far I am not sure of any different treatment that that of straight EM.
Funny Blue how close things can hit to home when we read these posts. Especially with something so rare and so strange. I don't know in person another human being that can relate through either experience themselves or even knowing anyone who has this. I am so glad for this site because without it we would be lost on our own never having ANY ONE to speak to about this.
I hope you are doing well enough anyway Blue.
Take care
Great article with Prof Chris Denton Royal Free Hospital London.
Diagnosed with both Raynauds and EM. even when i have the worst flares and my hands and feet are scorching, my finggers will be freezing and totally feel like a corpse! bright red hands with purple finger tips, yah its a hot look. the latest craze haha. i def get some funny looks tho when im out and about and both hit. I have had to give up my career as a massage therapist because of both the conditions. :(
Hi Laurent
I am sorry to hear you had to give up your career as a massage therapist. But I can see how massaging someone would be impossible with these conditions. One of my first EM flares came after a therapeutic massage.
blue
Here's a late addition to the EM/Raynaud's thread, with a question about B3 supplements.
My first diagnosis (22 months ago) was sensory/motor peripheral neuropathy, no known cause. My EM wasn't diagnosed till a year later, but I think it started almost simultaneously with the PN. I may have always had a little Raynaud's-like symptoms also. Last week I went to a podiatrist because I had intense redness and sores on 4th and 5th toes of one foot. I thought it might be ingrown toenails. The podiatrist asked to look at my hands and then said, "you have a lot of Raynaud's, and that's your problem." The idea was that the circulation was impeded enough that sores were forming. By the way, I notice that Alina and Nel both say on this thread that they get blisters on their feet--maybe the same kind of thing? though mine's much milder.
He prescribed an antibiotic (for 10 days) and Silver Sulfadiazine cream, and recommended increasing my very low dose of Norvasc as a vasodilator. AND he recommended taking B3 (niacin) supplements. But I've read that niacin increases "flushing." I'd told this doctor that I also have EM, but of course I can't expect that he'd be current on the things that can exacerbate EM...since, of course, few medical people know about EM. But if niacin does increase flushing, I don't want to take it, especially since the sores on my feet are much better already--thankfully. Does anyone with this combo of EM and Raynaud's take niacin?
HiLynn,
I can’t be much help to you I’m afraid as I never tried niacin but I did read somewhere that it can cause flushing. When I first got EM every medication I tried made me swell, get urticaria and all over rash until I became medication phobic and I only take what I absolutely have to to survive. It’s my daughter who gets the blisters on the soles of her feet and I get the chilblains. At least that is what I have always presumed they are, and extremely painful too. They do sound though like your description. I have had them since I was very young, Raynauds too, and tried every cream I could find, particularly homeopathic ones. Then I would bandage them with torn up strips of bandage and do that every night until they went away. I don’t get them so much now since I no longer work and I can stay in when it is very cold and protect my feet so much better. I also have EDS and almost certainly mastocytisis so that makes it more difficult to know why I have what I have. I shall be interested to see what members may have to report about niacin.
Hot products for Raynauds
http://www.raynauds.org/2015/02/08/hot-products-for-winter-2015/
That practically produced a flare just from imagining using these products;)
If you strip away all the superficial man made names for diseases of this kind, and step back and look at the symptoms that everyone is talking about here, you can tear it down to the basic action of Thermoregulation of the skin. Small fiber nerves control the small superficial capillaries that in turn open and close to regulate the skin and body temperature of the body. The small fiber nerves are controlled by the brain. Now if the brain starts sending mixed signals to the small fibers, telling them to shut off or open up the small superficial capillaries, then you will have the result of hot burning feet and maybe hands, or close and have cold feet and hands. The discoloration is from that lack of blood flow to the outer skin, so again it is just a symptom not a cause. (No disrespect to Ray, he was brilliant..)
I think one of the many problems in medicine, they are always trying to label a symptoms that a patient has, by how the condition is trending in the world; they see blue cold fingers, Dx it as Raynauds, they see hot burning hands and feet and Dx it as neuropathy or EM, probably from diabetes, because that is one they know about. Both conditions may be tied together, since it is just a label they have made for symptoms, maybe they need a new one like "Jon's disease" or "Mads Syndrome" ;0) I went through this, as I am sure most of you when you went to see the Doctor in his pressed white lab coat, we know now a lot of them are totally clueless.
As far as I know, they have no answers for either condition, they have clues, and may know how to control the symptoms, but they do not have concrete evidence that either condition is different, or maybe tied together. They are aware that nerves are involved, and blood flow, plus all the other heating and cooling functions like sweat glands.
Hopefully at some point they will study both conditions together, they might find a new name for it, and hopefully a cure. We all know what symptoms we have, they just haven't connected the dots yet. I guess when it starts trending as a infliction that a large part of the population has, the Medical industry will not focus on solutions. After all it is about the money with Big Pharma, that controls the purse strings of large research facilities.
Just my two cents worth...
I love your post. So are you taking any meds? I'm on Gabapentin. 1200 mg a day now--it's not doing enough, for sure, if anything. My symptoms are just constant in summer and winter--spring and fall aren't like great since I have permanent tissue damage, but I do get a sense of relief when the weather is milder. What's your experience like? You didn't really say much about it, but I think you're really articulate.
Jon_sparky said:
If you strip away all the superficial man made names for diseases of this kind, and step back and look at the symptoms that everyone is talking about here, you can tear it down to the basic action of Thermoregulation of the skin. Small fiber nerves control the small superficial capillaries that in turn open and close to regulate the skin and body temperature of the body. The small fiber nerves are controlled by the brain. Now if the brain starts sending mixed signals to the small fibers, telling them to shut off or open up the small superficial capillaries, then you will have the result of hot burning feet and maybe hands, or close and have cold feet and hands. The discoloration is from that lack of blood flow to the outer skin, so again it is just a symptom not a cause. (No disrespect to Ray, he was brilliant..)
I think one of the many problems in medicine, they are always trying to label a symptoms that a patient has, by how the condition is trending in the world; they see blue cold fingers, Dx it as Raynauds, they see hot burning hands and feet and Dx it as neuropathy or EM, probably from diabetes, because that is one they know about. Both conditions may be tied together, since it is just a label they have made for symptoms, maybe they need a new one like "Jon's disease" or "Mads Syndrome" ;0) I went through this, as I am sure most of you when you went to see the Doctor in his pressed white lab coat, we know now a lot of them are totally clueless.
As far as I know, they have no answers for either condition, they have clues, and may know how to control the symptoms, but they do not have concrete evidence that either condition is different, or maybe tied together. They are aware that nerves are involved, and blood flow, plus all the other heating and cooling functions like sweat glands.
Hopefully at some point they will study both conditions together, they might find a new name for it, and hopefully a cure. We all know what symptoms we have, they just haven't connected the dots yet. I guess when it starts trending as a infliction that a large part of the population has, the Medical industry will not focus on solutions. After all it is about the money with Big Pharma, that controls the purse strings of large research facilities.
Just my two cents worth...
Hi,
Thanks, I am taking cymbalta for nerve pain. I tried gabapentin and Lyrica, I had a lot of brain fog, and blurred vision so stopped.
The pattern of pain for me 9-10 months out of the year is primarily burning feet and hands, 2-3 months are mostly cold hands and feet. The problem, when I started Cymbalta last year during the lull in pain, I thought it was the Rx, now it is pain season again, and Cymbalta is not cutting it. Doctor already is talking about a higher dose, maybe 90mg a day, the max is 60mg twice a day.
Like I mentioned in a another thread, when my feet are. Old the surface basal temp is 69-72deg, if I go up he ankle it is 94 deg. All my pain is bilateral, either hot or cold. But I am finding that the hands don’t always get hot and cold with the feet. I think the hot has been going on for many more years then the cold, it has been about 40 years of this!
Nice to meet you!
Hi Jim,
I have had EM for close to 40 years, I was first just diagnosed with Perepheral Neuropathy, I have been treated with the above mentioned treatments, with no change in my condition. I think if there is a conditon that is causing this, say a b12 deficiency then it might help. I spent years thinking I shouldn’t cool my feet, but when I did the symptoms went away. The condition is connected to the nervous system and the regulatory small capilaries, so I doubt the capsaicin treatments would help, as they didn’t with me. BTW if you try capsaicin be careful how you apply it, as it will burn your eyes and other sensitive areas!
Let us know how it helps!
Jim Weed Alaska said:
I tried to add the following to New Discussion and was not allowed…Not sure if it is this unfriendly web site or my stupidity. But if you think this discussion is worthy of this site, please repost under new discussion:
Secondary EM survival guide (bought from Amazon)
I just downloaded the “book.” Yes downloaded all 21 pages (with big print and each page is but 1/2 page… Obviously took but a second. It is really about an 8 page book.
My book report:
The solution:
1. Take fish oil and magnesium and Vitamin B.
2. Stop using all cold to keep your feet cold. Use only a fan and eventually wean yourself from the fan. Start taking warmer showers and when you drive down the road turn on the heat and place your feet under the heat. Acclimatize your feet to a hotter condition. Eventually climb in a hot tub.
3. Place Capsaicin cream on your feet. Either buy your Capsaicin in the cream form or make your own…Recipe included.
What he is saying is that this gets your feet used to higher temperature and kills off some of the nerves. He says new ones grow (I have read that nerves never grow back) and they are more in tune with your new life style. Continue doing this and it will put your feet back to “normal.”
He says that people in Alaska (me) and Canada have more problems than people in California. He is indicating that it is best to keep your feet in “normal” 70 degrees and above lifestyle.
Maybe, just maybe he has something. I really need to heal my wounds and scabs before I could try. Please, please others try this and let all of us know. It may work.
As my feet are on a cold water bag, I will contemplate the book. BUT want to say…he really may have something. We do know that there are some using capsaicin in treatment…2-5 times and people have gotten better. I would NEVER use the word “cured.” He used that word several times.
Jim
I should elaborate about the capsaicin treatments; with PN pain it is believed the the perception of heat in the feet is magnified by neuropathy, I excepted this for years, until I realized that in my case if was not a perception of burning pain, but actually burning! I think if you just have nerves that think they are hot, then this would work, but I think it may make things worse with EM, as it will just add irritation.