hey, i went to the doctors to see if they can diagnose me with EM (although i 100% know i have it) and they said i was fine... could this be because they know nothing of the disease?
Jed,
That could be the problem. When I found out I had EM, two very smart doctors I know (Dr. Mom and Dr. Dad) had never heard of it. A friend of mine who just completed a family medicine residency had not heard of it, either, until I told her about my case.
If you check out The Erythromelalgia's Association's webpage at www.erythromelalgia.org, there are pages you can print up and take to your doctor, explaining EM. Part of the way I got my "official" diagnosis -- because like you, I diagnosed myself before a doctor did -- was by bringing educational materials to my doctor so he could learn about EM.
Also, make sure to bring pictures to your doctor appointments! Sometimes you won't flare in that nice, cool doctors office, but having pictures of your feet and hands in flare helps doctors make the diagnosis.
i agree, My mum has agree'd to take me to get a second opinion this time ensuring that i bring educational materials to the doctor because im probably the first they've ever seen with the illness. My EM is getting worse slowly even when its room temperature my hands go bright red up until the point i raise my hand above my heart 1 second later they're normal color again.
Ellie said:
Jed,
That could be the problem. When I found out I had EM, two very smart doctors I know (Dr. Mom and Dr. Dad) had never heard of it. A friend of mine who just completed a family medicine residency had not heard of it, either, until I told her about my case.
If you check out The Erythromelalgia's Association's at www.erythromelalgia.org, there are pages you can print up and take to your doctor, explaining EM. Part of the way I got my "official" diagnosis -- because like you, I diagnosed myself before did -- was by bringing educational materials to my doctor so he could learn about EM.
Also, make sure to bring pictures to your doctor appointments! Sometimes you won't flare in that nice, cool doctors office, but having pictures of your feet and hands in flare helps doctors make the diagnosis.
Dear Jed,
First of all i want to say stay strong and do not give up fighting to get diagnosed.
I agree with Ellie. Has taken me nearly a year to get diagnosed , and I understand that is amazingly quick. Most people struggle for years to get diagnosed , if they ever do. I saw every single consultant specialism going here in UK- vascular, dermatology, Neurological, Rheumatology, various GP, oncology. Had every horrible test, biopsy going = obviously all negative . You need to see someone who specialises in EM Jed ,or someone who is compassionate enough to listen rather than be so egotistical and arrogant they refuse to accept they dont 'know it all'
None of the consultants, GPs i saw had ever heard of it, nor did they recognise it , nor did they want to!
I am disabled with widespread EM to the point that im on sticks , can barely walk and have no life. I am in constant flare from my feet to my scalp. Its a wicked wicked disorder. I diagnosed myself like most of us before getting official diagnosis. Through chatting to fellow sufferers on this site and after researching of my own accord I became more and more convinced i had EM . I then changed my tactics and plan of action.I joined TEA EM association for $20 printed off all the material, especially Dr Cohens work. I kept a pain diary and took photos every day morning, noon , night. I compiled a huge folder on materials and chronologically how this affected me. Anyway to remain brief I eventually got to see a pain management consultant specialist who listened to me , looked at photos, read my history , waited while i explained my known triggers/ possible unknown triggers, and said he thought it was EM. Wow! he agreed with me. I was only the 3rd person he had ever seen with it. I didnt have flare during our appointment but he could see the mottled skin, transparency of skin, protruding veins, lack of sweat, atrophied muscles and he 'heard' my symptoms. There are lots of 'other' things they can pick up on .In fact there are a few temperature regulation tests/sweating tests they can do
Photos are essential Jed. You dont need an active flare - but remember you can induce a flare with heat whilst you in a consultancy if you want to prove it!. I did.I just got so sick of being told i looked ok that I stuck my leg under a very luke warm shower during one dermatology appointment and induced a flare just to prove it. I thought i was going crazy. They were making me think i was mentally ill which of course i wasnt.They subsequently took a biopsy( no need for this but at least they wanted to show they believed me and wanted to test for uticaria(hives/allergy)
The fabulous pain specialist has since tried me on various medications - nothing helped. However he gave me a more radical treatment this week , an IV infusion lidocaine(admitted to hospital for this). The pain gets slightly worse before it gets better but i am hopeful. The flares already seem less aggressive . That means such a lot since i was in constant flare and on fire 24/7 for past 8 months. I had been knocking myself out on heavy doses of sleepers everyday in order to drug myself 'out of it' - although as you will know its also impossible to sleep .
Since the IV infusion the swelling(im constantly swollen especially legs like balloons) is a tiny tiny bit easier- i dont feel so tight - as if im about to explode.That in itself is a blessing! Its only been 5 days but fingers crossed. I have had a reaction to the infusion which definitely means something. Lidocaine works on the sodium channel blockers - which can be one of causes of EM.
I have tried all available treatments. I guinea pigged myself and still do... its finding what 'works for you '. Apparently primary/secondary EM can respond differently.Acute/chronic can too. At this stage i have been diagnosed with primary EM(idiopathic).
Aspirin therapy 150 mg x twice daily and Antihistamine therapy - 40 mg Loradatine have also helped a tiny bit
I also take all Dr Cohens recomended supplements(daily) - omega 3, B complex, Vit D, Vit C , magnesum spray and toxic free diet(as much as possible), plenty of water. Natural diruretic of juiced celery/aspagus(boiled together - drink the liquid or you can juice it all up with the liquid) I drink 1 large glass day to help bloating/swelling.
If you read Dr Cohens Medicationsense you will see the serotonin test with 5HTP. Its a good place to start eliminating/trying things. I didnt need the serotonin - made matters worse.
Re:lidocaine. I am due to have another IV infusion as sometimes first one doesnt do much. Lidocvaine treatment for EM is then a 3 monthly IV treatment with accompanying oral lidocaine tablets. As i said it appears each case is unique in its response to treatments.
Jed , I would be happy to talk further with you, just message me
You , and all my fellow EM sufferers , are in my thoughts and prayers
God Bless
x
Hi Jed,
I'll reply properly when I'm not flaring but just wanted to post a couple of things that might help you.
Most doctors have never heard of EM. My dad is a doctor. I developed EM at the age of seven and it took almost two years for me to get a diagnosis, I must've seen over 20 doctors. I only got the diagnosis because I was sent for some tests in the medical physics department. The wonderful physicist recognised that I had EM and told my dad to take me to a young doctor who was researching it. The doctor he recommended is still treating me today and she is a world-leading expert on EM. The medical physicist even managed to persuade the hospital to offer her a job, so she's only 25 miles away.
When I was nine, I was given a drug called Iloprost, which really helped for many years. I only stopped it because I became allergic to it (that's really rare). It might be an option for you.
It's important that you try to discover which type of erythromelalgia you have (primary or secondaary) and if possible the subtype (thrombocytic, vasoconstrictive or vasodialative). I'll post more about working that out ASAP.
Knowing what type and subtype you have will help avoid wasting time (and money if you're not here in the UK) on treatments that don't work. For example, some doctors have heard a little about EM, then give their patients aspirin and tell them that's supposed to make EM better. Aspirin only works if you have thrombocytic EM.
Be wary of Dr Cohen's advice for the same reason. Magnesium and some of the other suppliments can make some forms of EM worse. That's true for any treatment of EM.
I'm having lidocaine in a different way to mads. I get it IV (or under the skin if they can't get a vein) every three weeks. I don't take the oral form. It's helped a bit, possibly because it helps the nerve damage I've suffered from using ice over the years I was untreated.
Don't lose hope. There are drugs undergoing trials at the moment which are actually being tested on people with EM that developed when they were young. That's because the drugs work on part of how our bodies transmit pain messages. People with that type of EM probably have a fault in that part that sends pain messages too easily, which triggers the blood vessels opening up. These drugs could help many people with EM, so there is reason to hope that your pain can be controlled soon.
I went to the doctors hundreds of times before being diagnosed, they kept telling me it was in my head and I needed to get psych evaluation. but when my flares started to get a lot more visible about 3 years later, I was diagnosed. there was nothing I could do about the pain for a long time. shock therapy, neurotin, trileptal, and aspirin didn’t work for me. but cymbalta has helped me a lot. my flares aren’t gone but they’re a lot more mild than they used to be. definitely don’t give up!!