What type of doctor do you see for erythromelagia? (My story)

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1

Hi, I’m Carter and new to the forum. What type of doctor do you see for erythromelagia?

I’ve been experiencing bilateral flares of unknown causation in my knees. I’ve been seeing a rheumatologist. My symptoms have morphed quite a few times since I first “injured” my knee last summer. I did not initially present with symptoms consistent with erythromelagia. I first went to an orthopedic surgeon, who ordered an MRI, then a rheumatologist to investigate for rheumatoid arthritis. My rheumatologist said at my initial evaluation that he did not think I had RA. He ran blood tests for seemingly every auto-immune disease. They all came back normal. He took x-rays. They were also normal. I was then diagnosed with calcium pyrophosphate arthritis and prescribed colchicine. However, after doing an aspiration, no evidence of calcium crystallization was found in the synovial fluid. I was pulled off colchicine.

My rheumatologist then ordered a second MRI. He said it “could be” early RA, but that there was “nothing specifically diagnostic” of RA in the scan. It showed synovitis, but the bony erosions they look for in RA were not present. In his words, “it proves something is going on, but I can’t say what.” He decided to put me on methotrexate for “seronegative arthritis.”

Then last week I discovered information about erythromlagia (this website, in fact) while doing a Google Image search. It was a Eureka! moment. My symptoms match. My flares are activated by external heat. I’ve not been able to sleep with bedding over my knees for weeks. Warm showers make my knees ignite. The flares begin with a tingling sensation. I’ve been icing my knees constantly. When I told my rheumatologist that elevating my knees and drinking excess water alleviated my symptoms, he pulled me off methotrexate. He is now consulting with a hematologist, who ordered more blood work. Results are pending.

I have had blood issues recently. In 2013, I had an anemia of unknown causation. I assumed it was because I ran 50 miles a week and didn’t get enough iron from my diet. Oral iron supplements reversed the anemia. My hematocrit, which had been 34%, rebounded and settled around 45%. My hemoglobin rebounded from 10.5 to 15.5. They stayed in that range for approximately 9 months. Sometime during July and December, both surged much higher — 52% and 17.6, respectively.

My symptoms primarily remain in my knees, but I have had suspected flaring of lesser intensity in my feet, particularly my left heel, and right ear.

What type of doctor is best for erythromelagia? My symptoms seem to improve by drinking water. Has anyone else experienced that? This current episode began within hours after taking energy pills (a combination of caffeine and ephedra). I thought the diuretic effect of the pills triggered my knee pain. I had knee pain for 6 months in my left knee, and 2 months in my right knee, prior to any palpable inflammation appearing. I was initially diagnosed with patellofemoral pain syndrome.

I think my symptoms are consistent with erythromelagia. My rheumatologist remains skeptical because i’m not presenting in a classic pattern with hands and feet. He seems aware of the condition, but i'm not sure to what extent. My insurer is Kaiser Permanente.

Any thoughts are greatly appreciated.

Thanks for reading.

2

Very interesting! I have been through all the RA which I do have and they have been saying it's nerve damage for 9 years. I have been convinced for years that it's EM but nobody believed me, except the people on this group. I have just been diagnosed with thick blood and have high red blood count. I am waiting on further blood tests now. The fact that drinking a lot of water helps sounds as though it might be that with you, as you shouldn't have dieiruretics (sorry can never spell that) I am on them and my GP hasn't told me to stop but I might do it on my own. Plus, I was on iron pills which I have stopped. The haematologist said he doubted it was the cause of my feet and legs but I think he is wrong, well I hope he is! I have had years of fighting with doctors and being right in the end with other things. So, good luck. As far as which type of doctor to see it depends upon the cause as there are a few things that can cause it. You will feel much better having joined this group, believe me it's made a world of difference to me, given me confidence in what I think and that's worth a lot. Plus being able to share with others.

3

Hi Carter,

We have posted some WA EM aware medics on your profile page for you. Just to quickly say that my EM started in my knees and then progressed. My knees have always been one of the worse areas for swelling. I have more information on my profile. Instead of icing knees, which can exacerbate burning., try my best tip. A cloth soaked in cold water- wrung out and placed over affected part. Then position a fan on full blast - just you see :) More great cool tips from our community members at http://forum.livingwitherythromelalgia.org/forum/topics/cool-tips

Big hug

x

4

Carter, I think most of us here would say that the best health-care person to consult is anyone who's had experience with EM. I lucked out because the rheumatologist I was already seeing DID have experience with EM when I was looking for help. But for others it's been a dermatologist or hematologist or neurologist. So the list that mads posted should help a lot, and if you call others, you can always ask if they've had experience with this rather odd disease. Best of luck.

Lynn V.

5

Yes, my rheumatologist hasn't the slightest clue about EM! I live in Cornwall in the UK and have been told that there are only a couple of doctors in the UK that know about it and they are in Scotland!

6

I will definitely try out the cloth cooling idea, mads.

I've never really have significant swelling. When my rheumatologist did the aspiration, he had trouble even getting enough fluid for a single test. He was going to run other tests, but had to cancel those b/c he couldn't get enough.

One major question I have is about the erythema (redness). Does it go away entirely after a flare? My knees seem to be perpetually red now, even when they are not flared. I think they look purplish sometimes, too.

I'll attach some pictures to this reply. The first one is during a nighttime flare. The other 2 are not flared.

140-IMG_2155.JPG (1.94 MB) 141-IMG_2166.JPG (1.52 MB) 142-FullSizeRender.jpg (1.34 MB)
7

HI Carter.

Just wanted to say that it doesn't surprise me that your current episode occurred after taking an Ephedra/caffeine combo. Both are powerful vasoconstrictors---Ephedra (Ephedrine) has been taken off the market as a medication because of dangerous side effects (heart attacks, major malfunctions of cardiovascular system, etc.). It is probably not fit for human consumption.. For some people with EM vasoconstrictors can make our condition much worse--probably due to a rebound effect. It is probably wise for you to avoid medications (nasal spray, asthma inhaler, some eye drops, some cold medications) ,supplements or foods that cause vasoconstriction or vasodilation.

And BTW, it is not at all unusual for body parts that are affected by EM to remain red in between flares or to become blotchy and purplish.

All the best in finding a doctor who is knowledgeable and sympathetic. In Canada, EM falls under dermatology, but it was a vascular surgeon who thought I might have EM.

Dragica

8

A couple of interesting things in the last reply. I have never been able to take Ephedrine even when I was young, I used to get bad side effects! Then it was my vascular surgeon that discovered my thick blood. I referred myself to him and paid to see him as the NHS doctors in the UK didn't think it necessary. I had found out from a podiatrist that I had poor circulation and so that's why I went to see him. He did a dopler test and then an ultra sound of my legs and feet. The main arteries were fine but he did some blood tests which showed up my thick blood. Getting anybody else to do anything about it is proofing very difficult but I will get there I just have to keep pestering until they get fed up of me! As I said earlier I am waiting for some other blood test results. One think I would like to know is if my thick blood is sorted out is it possible that what I think is EM will disappear or has the damage been done now?

9

Thanks for the replies.

I had knee pain for months prior to having any palpable inflammation or EM like flares. Perhaps I should give an overview.

I used to run 7.5 mils every day. On July 27, I stepped up onto a treadmill and felt a stabbing pain centered deep in the patella of my left knee. It did not affect my running, but caused subsequent pain ascending and descending stairs. I continued to run on it for a month, during which i'd occasionally feel a momentary, sharp pain centered deep in the patella. After my run on August 25, my left knee swelled up and I had to stop running.

On September 3, I had an appointment with an orthopedic surgeon. She diagnosed me with patellofemoral pain syndrome and prescribed diclofenac (voltaren). After the injury didn't heal as quickly as I hoped, she ordered an MRI. The MRI showed chondromalcia to the patella cartilage. I began physical therapy and by mid to late October, my knee felt substantially improved. In early November I stopped taking the diclofenac for 5 days. During that time my knee regressed. I subsequently resumed taking diclofenac.

On November 16, I felt a sharp pinch on the medial side of my right knee (hitherto uninjured) while performing a weighted hyperextension in the gym. The following day both knees were very sore. The new injury would clear up within a few days. With the original injury still bothersome, I had a cortisone injection into the left knee on November 24th. It was ineffective.

In early December, the secondary injury to the right knee reappeared and my knees began to improve or worsen in unison. At that time, the nature of the pain began to change. Whereas discomfort had primarily been felt on stairs or steps, it now hurt simply to stand. This new sensation replaced the prior discomfort on stairs, which I no longer felt. It feels like an intense pressure. There was no swelling or redness, but the knees would occasionally feel warm.

On December 15, I returned to my primary care physician. He prescribed a 2 week course of prednisone and ordered tests for rheumatoid factor, CRP, and ESR. He said the results made autoimmune arthritis "very unlikely." The prednisone provided mixed results, with some days better than others.

On December 30, I had an appointment with a rheumatologist. He ordered x-rays of my hands and feet, along with blood work. All results were normal. He said not to "lose any sleep" and that I likely did not have rheumatoid arthritis. In early January my symptoms substantially improved. My right knee felt 100% and my left knee, the original injury, felt the best it had since becoming injured.

On January 17, I took 2 energy pills prior to going to the gym. They were old pills (approximately 10 years old) I had recently discovered cleaning out my closet. They included ephedrine, which has been taken off the market in the United States. Within hours after taking them, my knees pain returned with a vengeance.

On January 28, I noticed for the first time that my knee appeared slightly red and on February 1, I began running a low grade fever for the first time. I began having bilateral flares of progressively worsening intensity throughout February. It was during this time that I began to experience flares consistent with EM.

So that's it. I only began experiencing EM like flares within the past 4-5 weeks. They only began occurring after I took those ephedrine capsules. In the past week, I have been aggressively drinking water and I've seen a corresponding improvement in symptoms. My flares have become less frequent and of lesser intensity.

I don't know what to make of all this.

10

HI again, Carter.

The progression that you describe is similar to the course of symptoms I experienced, too. For many of us, EM is preceded by an injury, surgery or other painful medical intervention. Then a low-grade fever occurs and WHAM! the EM symptoms go crazy! I have some hypotheses as to why this may occur, but I have no hard data, so I won't offer an opinion at this point. There is some very interesting research done on regional pain syndrome and triggers for generalizing pain from its original area to larger networks. In some ways it seems similar to what people with PTSD experience when new stimuli are gathered into the brain along with the original trigger to even more triggers until the person is flooded with triggers nearly all of the time.

Re the water--who knows? It may be that you are eliminating toxins or un-metabolized medication. Many medications take months to leave the body depending on their half-life and where these un-metabolized substances are stored. Those that are stored in fat tissue (like so many psychotropic drugs) are especially nasty because they may not be released until someone loses weight or is in a very physically demanding situation.

All the best to you--I hope your EM is temporary.

Dragica