Also… I too have bulging veins when flared. Flare in my knees, face, ear and face at times. And, yes. Multiple times a day.
Wow! I actually think that’s one diagnosis I haven’t researched 
I have looked at some of the automatic dysfunction disorders but didn’t think they exactly fit. I’m happy to hear the crushing pain you get in your ankles, feet, wrists, hands, and fingers has lessened…but that sounds awfully familiar. Lately, the pain in my left foot has been causing a limp because it is so painful to walk. I’m also beginning to suspect I have bone pain…but I don’t know if I’m being overly sensitive to the joint pain (in long bones in thighs especially).
Unlike you, I haven’t had a hint of inflammation in my blood work. They always say it looks perfect. In fact, my PC is suggesting I stop seeing my rheumatologist, but I will wait for the rest of the blood work with the hematologist first. I will certainly do some research on RSD…I’m a firm believer in knowledge is power.
Thank you so much for your kind words…Wishing you the best also 
Well, try to stay hopeful. My EM exploded last year in February
(coincidentally, exactly a year prior to yours). It was awful and the situation seemed hopeless. My nights were a horror show. I was afraid to even sleep. Eventually I found medication that helps. While it’s still there, I can function more or less normally. It’s annoying at times, but not grossly limiting. I do avoid being outside during hot weather for extended periods. Minor exposure to hot temps (like walking to a vehicle) doesn’t bother me. I’m able to take warm showers again. The medication makes a big difference. (Unfortunately, the drug doesn’t work for everyone and others can’t take it due to side effects.)
A final thought… when my EM exploded in February '15, it was bitterly cold, single digit high temps. That made no difference. My EM raged. I was going outside in single digits with ice packs strapped to my legs. It was 25 degrees below freezing and I had ice strapped to me! It was completely insane.
I thought there was no hope, but I was wrong. It can get better. Don’t ever forget that.
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I hadn’t really researched RSD either. Whenever it came up and I saw that it typically starts with one limb and causes severe, debilitating, chronic pain, I ruled it out. But, now, I’m learning it can present with fluctuations or flares. Also, im wonderimg if a couple of incidents I had years ago with my Achilles tendon and then later, a corticosteroid shot for tenosynovitis in my wrist, were the true start of RSD and that it may have gone into remission. Still researching and cautiously hopeful that I can be helped by the treatment this doctor is suggesting. Good luck. May we all find answers and relief!
Thanks so much for the perspective. More and more, I realize how important it is to remember nothing is forever, including pain…that brings me peace. Your story gives me hope I will find relief…whatever that may be, depending on the cause. EM has already helped me see I am so much stronger than I thought.
Thanks again…it means a lot
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Yes! May we all find relief in our individual journeys
I’m very thankful to be able to talk to others who are struggling too. It gives me strength to hear how you are all handling tough situations.
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RSD or CRPS type 2 is different than em. But they can have pain flares which are typical EM flares with the onset of the disease, RSD is the old name. Crps type 2ks a rare nerve condition but it’s not damage to the nerves like one might expect with many kinds of neuropathy. The nerves are actually normal with crps type 2 or RSD. Old theory used to say sympathetic nerves were givinf false pain signals to the brain but that’s not what’s happening. With crps type 2 people will have flares often for a year and then they’d stop. Some will continue to experience flares however. There may be some overlap between some crps patients and em or perhaps em and crps may respond to some radical drug therapies with positive results.
With crps 2 the followinf happens. Often the nerves are normal but glial cells which are a kind of floating nerve cell that can travel through the body like t-cells are overactive. The glial cells over stimulate the normal nerve cells and trigger them to activate. This causes nerve overstimulation and results in all kinds of nightmares for crps types 2 which is the suicide disease.
Crps type 2 patients are in even worse shape than em patients if you can belief that. And they will experience gait and walking disturbsncesl. They may experience the twisting and turning of muscles so severely that their feet turn sideways and they cannot now walk. A typical em parienr has no muscle weakness and no gate disturbance. The em patient often has no injury or muscle control problem at all, they can walk and have full strength. They just experience swelling and hot feet in flares that affect them with severe pain and the flares csuse them to stop walking, When you stop walknf muscles will atrophy.
This is way different from crps type 2 patients, some of them experience flares which are horn burning sensations like sparklers in their lungs burning them from the inside. The em patient may Ben walk-in get in hell but the crps patients is burning in hell more fully so crps is actually much worse. Pray to God and thank him if you don’t need have crps type 2 becsuee it’s much worse,
There is a guy who sells crps tyoe 2 advanced therapy guide who suffered from it, I chatted with him and bought a guide. It’s therapy that helped him and it may help others who have rsd or crps type 2.
There’s is good info fromthe crps group on that disease and more some good YouTube videos by doctors on the web.
There’s women possible overlap of CRPS symptoms and treatments thwt might help some em patients.
For advanced really bad em some have used ketamine cream on the feet with ketamine cream tersely. Ketamine has potentially harmful side effects and should be used carefully. Most doctors will avoid using that like the plague.
Ketamine works better in tests when more of it isn’t absorbed in the bloodstream and shows up in blood tests but it can cause more mental side effects wt higher doses. It’s a hallucinogenic drug so it’s often avoided. Weak ketamine cream may help some em patients. Ketamine comas may be used to almost kill a crps patient desperate for brain reset. If the comma does not kill you it may help resolve some of the crps damage. Much more risky and not even performed in the USA.
Crps may cause skin disturbances which are nerve based skin damage on the legs. Em is like having sunburn, no damage from on skin happens from a flare, burn the skin may stretch and open up and bleed if the edema gets out of hand with em. That is normal with any swelling but obviously something you want to avoid.
According to one doctor cymbalta doesn’t help crps at all in their tests. But Savella does. And Savella is six times more effective than cymbalta, with less side effects. So Savella may be a good drug to try for some EM patients. Msybe a lower dose of savella csn replace cymbalta for some em patients. I’m just a layman and caretaker for my mom and dad so get a doctor s opinion.
Glial cell overactivity migrant be triggering some patient EM symptoms burn ive not seen ornate hear do of any study or proof to back that. So that’s might be an interesting thing to ask some neurologists. Mbith diseaes are rare so maybe the overlap of symptoms may Ben Justin my casual observation and mean nothing at all.
My mom wouldn’t score on ten of the 14 points of testing for for CRPS type 2. But this only from skme flare states not perhaps always and not perhaps enough for thwt Tim be mean anything. One of the criteria form crps is you have Ron ruke other causes. A typical em disgnosis would take a person out fo em crps flowchart or diagnostics chsrt and rule them out as having crps.
Crps patients do experience em flares. Fortunately form em folks they’d don’t need experience many of them hen symptoms of RSD rom crps type 2 which isn’t actually much worse than EM.