Hello everyone - My story

Welcome New Member Introductions
1

Thank you for the warm welcome. I'm grateful to have this community to share with and learn from. I will share my story with you.

I am new to EM. I diagnosed myself from searching on the internet about 6-7 weeks ago, and then went to see my primary doctor. He had never seen a case of EM before. He did a complete blood panel and also an ANA test. The ANA test was the only thing that came back abnormal - it was positive but not very high numbers and showed a non-specific pattern. Thus my doctor is skeptical whether I actually have EM or an early manifestation of an autoimmune condition. As for me, I am 100% positive I have EM (whether primary or secondary I don't know) but my symptoms are classic EM and have worsened noticeably in only a few weeks. I have daily flares in my feet, worse in late afternoon and of course night time, but now with warmer weather I can't even venture outside with out suffering a flare within minutes. My hands also flare. They are red hot and swollen, but I don't feel the same pain that I do in my feet. Stuffy warm rooms are terrible, cooking, cleaning and STRESS - the worst.

Back to my doctor... he put me on gabapentin. A low dose, 100 mg x3 daily. At my follow up visit with no noticeable improvement, he added Cymbalta - also low dose and the topical cream with ketamine and amitriptyline. I have noticed no improvement in several days of using the cream. After several days on Cymbalta I feel awful. Foggy head, hot face with pins and needles sensation, headache and muddy thoughts. I thought I was going to black out while getting my haircut today. I want to stop taking it. I feel so bad.

As for how I think I got EM - I don't know. I don't have good veins in my legs, so venous insufficiency could be an underlying cause, but I don't think it just began with that. I first started getting random symptoms of EM back in the winter of 2014, but they were sporadic and went away after a couple months or maybe less. At that time, I never made the clear connection with a heat trigger.. These initial EM symptoms showed up at the same time I was suffering through a wave of skin problems after having the Mirena IUD placed (to treat heavy periods). Skin problems popped up immediately. I got scared and had the IUD removed only three weeks later, but the skin fallout persisted and then the initial EM symptoms first showed up at the same time. Fast forward a year later, and I was surprised with the EM symptoms came back (although I hadn't figure out it was EM yet). This time however, the pain and flares became regular very quickly and my hands also became involved. This is when I started researching my symptoms.

I need more answers than my primary doctor can give me. He knows nothing really, and chose his prescriptions for me from a printout of Dr. Jay Cohen's article that I brought into his office.

I have an appointment with a vascular specialist in a couple of weeks. I would be grateful to know if a vascular doctor has been helpful to anyone here. I am hoping for a firm diagnosis and some help determining the cause of my EM. I don't know if she will be able to help me with the pain or not.

Right now, at this early stage I am really struggling emotionally. I am stunned at how quickly my life has been changed so radically. I used to walk miles and miles and hike with my husband, kids and dog, ride my bike, garden and cook and now I can do none of these things. I can't even get to the mailbox without pain. I have three teenage kids and I am scared for them. I'm scared for me and my husband.

I would so appreciate any advice from any of you who might be able to help me. So far, the only relief I seem to be getting is from my fan and elevating my feet. I don't think the meds are doing squat. I am otherwise healthy and have enjoyed an active life until now.

Thank you for responding with any suggestions. Grateful to all of you, and praying that we all find relief from this scourge.

2

Hello snoshoe03. I’m so sorry you have gotten worse and have yet to find someone that can help. It can and usually is overwhelming.
I am in a car now so my note is short and will write more when I’m. Home. I just wanted you to know you were not alone.
Talk soon.
Take care

3

I am sorry for your troubles. I saw a vascular doctor and they were of no help to me. He just kept pointing out that my red feet were not caused by a Blood clott. I have received the most help from my neurorologist but I think a rheumatologist would be helpful to you with the ANA changes. Perhaps it is a rheum otological or autoimmune cause. Good luck (I hate the summer, too)

4

HI snowshoe.

Please don't give up on a combo of Gabapentin and Cymbalta. Dr. Cohen suggests starting out on very low doses of medications and titrating upwards very gradually. It took me almost 6 months to get to 15mg of Cymbalta (which is half of the lowest dose available in Canada--I had to go really slow or I had really fuzzy head, memory problems and heart palpitations). A compounding pharmacy is your best friend and can create made-to-order doses for you. You may also find that Lyrica is better than Gabapentin as it has fewer side effects. It works like a charm for me--after virtually no sleep for months--after I reached only 18.75mg/DAY I was able to start sleeping for longer periods and now sleep the night on about 100mg/day (about 1/3 of the usually prescribed dose for neurological pain. I think that many of us EM sufferers are given too high a dose of medications.

Best wishes and welcome.

Dragica

5

I'm sorry to hear of your troubles. I'll just address the emotional aspect, as that is something I've struggled with recently, too.

A buddy of mine is US Air Force, currently deployed in a combat zone. When I told him of my recent troubles, which are similar to yours, he said this -- We don't choose the events that happen to us, but we do choose how we react. We choose our emotions and how we perceive events. When you think a negative thought, discard it. Choose a positive one instead. Don't be defeatist and dwell on what you can't do.

It may sound simplistic, but it works. He's a pilot who puts himself in danger every day. If you're scared, choose not to be. That is something you can change.

6

I am sorry to hear of your escalating pain with EM. I, too, have not been diagnosed, although I have several other auto-immune conditions such as rheumatoid arthritis, small fiber neuropathy, and fibromyalgia. I have not been able to tolerate any medications except for nortriptyline. I am currently going to a Pain Specialist Clinic, where I was sent by my rhematologist, and I they seem to have lots of options (they think I have Complex Regional Pain Syndrome, but they are also investigating EM), and I feel hopeful. I, too, know that hopeless feeling of having your whole world turned upside down, but please remember we are all here for you. So far, the thing that I have found most helpful is cooling my feet with home-made cooling packs - cloth filled with corn or rice. They are usually used as heating packs, but they work just fine when put in the freezer, and they are not damaging like ice or cold water. Good luck, and try to stay in good spirits!

7

Hi Snowshoe

It is very frustrating waiting for a new medication to work but it may take awhile. My Rheumatologist said to me just last week to always give it three months unless it produces other worse symptoms in which case stop it sooner. Having said that all the meds I am on now gave me horrible symptoms like dizziness. sleeplessness and nausea in the first two weeks but settled down after that. I would persevere as long as you are able to give the medicine every chance. One thing I have learned is that if you chop and change or do to many meds at once, it is harder to figure out what it was that made any improvement.

I currently use Nortriptyline and Pregabalin to control my EM if you are looking for other alternatives, but do give things a chance to work. There is no quick fix for this. Good Luck.

8

I saw a vascular man and it was him that did blood tests and found that I had a high red blood cell count causing my blood to be thick, which is one of the causes of EM, so maybe he will help, however haematology dismissed me as the JAK-2 test was negative so I got no further treatment for this

9

I am very sorry to hear about what you are experiencing. I self diagnosed myself in January of this year after starting to experience minor flare ups in December and not knowing what was going on. The flare ups started in my hands, once a week and then to every other night. Now my hands, feet and ears are experiencing flare ups. They used to be more frequent in the early evening and night time hours, now I experience them any time of the day. It seems to be happening so fast. 4 1/2 months ago I was not having any symptoms and now my life is being turned around. I was started on the Gabapentin, 300 MG. They wanted me to take that 3x a day. I was not able to tolerate it once a day. It made me very dizzy, foggy and very off balance. They dropped me down to 100 MG once a day and work up to 3x a day. Quite honestly I can't even do 100 MG. They have also added 30 MG of Cymbalta and just two days ago they bumped it up to 60 MG. Now I am finding that I cannot fall asleep at night. I am not sure if its a side affect from the Cymbalta. I will be going back to my Neurologist on Thurs. I am hoping that they will be able to prescribe another pain med to replace the Gabapentin since my body cannot tolerate that. I have a referral to go to the Mayo Clinic in Rochester, MN. They have a specialty clinic for EM but I am on a waiting list and it sounds like I won't be getting in until Sept or Oct. Now that the weather is starting to turn warmer I am finding it more difficult to tolerate the flare ups.

I do wish you luck. I know from what I have been doing research on that it will take time to find the right combination of medicines to help with the pain because everyone reacts differently.

My husband is a wonderful support but he doesn't see how often the flare ups affect my daily life. It is hard some days to move past that, I understand but please keep the faith.

10

Well I have tried 3 now. First it was amitriptyline which seemed to work in the early days, but then stopped doing any good. I was then given Gabapentin went into a coma for 2 hours, I think because of a drug interaction and on the lowest dose. Then Pregabalin which I was a bit bothered abut as it's similar to Gabapentin and I didn't go into a coma, but I had double vision and very blurred site and balance problems I just couldn't take anymore and that was only 50 mgs. On doctor talked about Cymbalta which I am not keen on trying going off the side effects and the other drugs I am on. I know these things take time to work and to stop the side effects, but after my last two experiences I am frightened of trying the Cymbalta. My next thing is a dermatologist, who has heard of EM and maybe he will have some ideas. I have rheumatoid arthritis as well as the thick blood and was also suspected as having small fibre nerve damage, which was never tested by doing a skin biopsy the neurologist said it wasn't necessary! Now my doctors are saying that due to my poor circulation it might be risky having the skin biopsy due to my poor healing, I already have 3 ulcers on my feet. I am on my own as well and currently the only way I can get around my bungalow is in a wheelchair. I don't get flares these days, its always there, just worse in overnight and morning. I really am getting desperate now.

11

From what I've read, and I could be wrong, it seems Gabapentin is more effective for Primary Erythromelalgia. I was given a prescription for it, but never filled it. Since Primary Erythromelalgia is an autosomal dominant disorder, I just don't think there is any chance I have it. There is no history of it in my immediate or extended family. It's not the type of thing that could go unnoticed.



Kerri said:

I am very sorry to hear about what you are experiencing. I self diagnosed myself in January of this year after starting to experience minor flare ups in December and not knowing what was going on. The flare ups started in my hands, once a week and then to every other night. Now my hands, feet and ears are experiencing flare ups. They used to be more frequent in the early evening and night time hours, now I experience them any time of the day. It seems to be happening so fast. 4 1/2 months ago I was not having any symptoms and now my life is being turned around. I was started on the Gabapentin, 300 MG. They wanted me to take that 3x a day. I was not able to tolerate it once a day. It made me very dizzy, foggy and very off balance. They dropped me down to 100 MG once a day and work up to 3x a day. Quite honestly I can't even do 100 MG. They have also added 30 MG of Cymbalta and just two days ago they bumped it up to 60 MG. Now I am finding that I cannot fall asleep at night. I am not sure if its a side affect from the Cymbalta. I will be going back to my Neurologist on Thurs. I am hoping that they will be able to prescribe another pain med to replace the Gabapentin since my body cannot tolerate that. I have a referral to go to the Mayo Clinic in Rochester, MN. They have a specialty clinic for EM but I am on a waiting list and it sounds like I won't be getting in until Sept or Oct. Now that the weather is starting to turn warmer I am finding it more difficult to tolerate the flare ups.

I do wish you luck. I know from what I have been doing research on that it will take time to find the right combination of medicines to help with the pain because everyone reacts differently.

My husband is a wonderful support but he doesn't see how often the flare ups affect my daily life. It is hard some days to move past that, I understand but please keep the faith.

12

Wow, Kerri, it sounds like our situations are really similar. Please let me know how you do on the medications. How are you responding to the Cymbalta other than the sleep problem? After reading the comments from members here, I've decided to try to stay on the Cymbalta although it has been so rough these past few days. I didn't take last night, but will go back on today. I also am on the wait list at Mayo! I've been told it will be months before I can get in . I bet you are in line ahead of me since I only got in line in March. I will be eager to hear about your experience there after you can be seen. I agree that the flares in warmer weather are harder to tolerate. I'm so sad about this because we have a family trip to Colorado in June, and I don't know how I will be able to participate outdoors at all. I can't think about it too much because it makes me cry. My husband too is a wonderful support, but he struggles to understand fully the extent of the pain or emotional toll it is taking on me. I know he's just trying to stay optimistic.

Thank you for sharing your experience. It's comforting to know that others understand this bizarre and painful journey.



Kerri said:

I am very sorry to hear about what you are experiencing. I self diagnosed myself in January of this year after starting to experience minor flare ups in December and not knowing what was going on. The flare ups started in my hands, once a week and then to every other night. Now my hands, feet and ears are experiencing flare ups. They used to be more frequent in the early evening and night time hours, now I experience them any time of the day. It seems to be happening so fast. 4 1/2 months ago I was not having any symptoms and now my life is being turned around. I was started on the Gabapentin, 300 MG. They wanted me to take that 3x a day. I was not able to tolerate it once a day. It made me very dizzy, foggy and very off balance. They dropped me down to 100 MG once a day and work up to 3x a day. Quite honestly I can't even do 100 MG. They have also added 30 MG of Cymbalta and just two days ago they bumped it up to 60 MG. Now I am finding that I cannot fall asleep at night. I am not sure if its a side affect from the Cymbalta. I will be going back to my Neurologist on Thurs. I am hoping that they will be able to prescribe another pain med to replace the Gabapentin since my body cannot tolerate that. I have a referral to go to the Mayo Clinic in Rochester, MN. They have a specialty clinic for EM but I am on a waiting list and it sounds like I won't be getting in until Sept or Oct. Now that the weather is starting to turn warmer I am finding it more difficult to tolerate the flare ups.

I do wish you luck. I know from what I have been doing research on that it will take time to find the right combination of medicines to help with the pain because everyone reacts differently.

My husband is a wonderful support but he doesn't see how often the flare ups affect my daily life. It is hard some days to move past that, I understand but please keep the faith.

13

That's interesting Carter - How is it determined if someone has primary or secondary EM? Do they do genetic testing? I ask because I have no one else in my family with EM, BUT interestingly, my daughter does experience flares of red hands and feet and ears. This mostly happens in warm weather or in stuffy warm rooms, but her ears do flare sporadically and she says they feel very hot when they do. She has never complained of pain with the flares of red skin on her hands or feet, but now I'm wondering if this is a variant of EM? If so, could I be the original carrier of a genetic issue? I shudder to think that her symptoms might evolve to be painful like mine. I'm praying this is not the same thing.

CarterDK said:

From what I've read, and I could be wrong, it seems Gabapentin is more effective for Primary Erythromelalgia. I was given a prescription for it, but never filled it. Since Primary Erythromelalgia is an autosomal dominant disorder, I just don't think there is any chance I have it. There is no history of it in my immediate or extended family. It's not the type of thing that could go unnoticed.



Kerri said:

I am very sorry to hear about what you are experiencing. I self diagnosed myself in January of this year after starting to experience minor flare ups in December and not knowing what was going on. The flare ups started in my hands, once a week and then to every other night. Now my hands, feet and ears are experiencing flare ups. They used to be more frequent in the early evening and night time hours, now I experience them any time of the day. It seems to be happening so fast. 4 1/2 months ago I was not having any symptoms and now my life is being turned around. I was started on the Gabapentin, 300 MG. They wanted me to take that 3x a day. I was not able to tolerate it once a day. It made me very dizzy, foggy and very off balance. They dropped me down to 100 MG once a day and work up to 3x a day. Quite honestly I can't even do 100 MG. They have also added 30 MG of Cymbalta and just two days ago they bumped it up to 60 MG. Now I am finding that I cannot fall asleep at night. I am not sure if its a side affect from the Cymbalta. I will be going back to my Neurologist on Thurs. I am hoping that they will be able to prescribe another pain med to replace the Gabapentin since my body cannot tolerate that. I have a referral to go to the Mayo Clinic in Rochester, MN. They have a specialty clinic for EM but I am on a waiting list and it sounds like I won't be getting in until Sept or Oct. Now that the weather is starting to turn warmer I am finding it more difficult to tolerate the flare ups.

I do wish you luck. I know from what I have been doing research on that it will take time to find the right combination of medicines to help with the pain because everyone reacts differently.

My husband is a wonderful support but he doesn't see how often the flare ups affect my daily life. It is hard some days to move past that, I understand but please keep the faith.

14

One of the Administrators here, Alina Delp, was diagnosed at the Mayo Clinic in 2012.

Her original post can be seen here:

http://forum.livingwitherythromelalgia.org/forum/topics/mayo-clinic-a...

We'd love for you to share more insights, Alina!

15

snowshoe03,

Primary Erythromelalgia is caused by a mutation in gene SCN9A. There might be a test for it:

https://www.genedx.com/test-catalog/available-tests/scn9a-gene-sequ...

Secondary Erythromelalgia is as the name suggests, secondary to another disorder, typically myeloproliferative disorders and autoimmune diseases.

16

Dear snowshoe03,

Sorry not caught up with you yet :( . Just quick comment about the IUD. EM can be induced hormonally so Im interested in knowing more details about this. Any other conditions or medications that may have precipitated EM? Injury? Prolonged stress? Female conditions? Has your thyroid been checked?

Re: EM, whether primary (genetic ), primary (sporadic) or secondary , the treatments to better manage symptoms are the same. The only difference with secondary is that treating the underlying disorder (mostly autoimmune), stopping offending medication or recovering from injury etc. can often better control , minimise and even instigate remission. Actually, I know several cases of remission in both primary and secondary EM'ers . One member Carter has just reported this :) All EM pain is now considered mediated by the sodium channel Nav.1.7 and its various mutations. Genetic testing will not change the treatments 'out there' , it will only inform you as to why you have developed the syndrome ie: inherited. Also , it informs you of the possibility that this could be passed on to offspring. Normally if you have not developed EM before 30 its probably not going to be genetic . Everyone focuses on genetic EM as thats where the research is being done. But this is only for two reasons - genetic provides a homogenenous sample and money talks( funding )

So, treatment is the same , regardless. Although some medications reported more positively by certain types. Aspirin for secondary to a myeloproliferative disorders.Secondaries can prove slightly more 'manageable' in the sense that the underlying disorder can be treated (say lupus or RA).

As I said in welcome, EM is based on clinical presentation and patient questioning.There is NO diagnostic test for EM. Any tests you may be given are exclusion tests Prepare your evidence- photos, pain log, research articles . Dont be put off by Dr's disbelief or not wanting to listen. You need to be heard. Whilst there is no 'known' cure for EM one can try to better manage symptoms and many of us do, so please stay hopeful:).

Getting yourself an EM aware Dr or compassionate medic prepared to prescribe you something is paramount ; there are lots of medications you could try. Most EM'ers advocate a polypharmacy approach . EM symptoms tend to be better managed as separate entities. Whilst management is mostly a case of trial/error to find what works best for you.

Finding medications to help you better manage symptoms can take time. My advice is look immediately at minimising triggers - heat (or sometimes also extreme cold) , stress, exertion, fatigue , pressure and foods stuffs such as spicy foods, deadly nightshade family, and stimulants such as coffee or alcohol. Listen to your body. Keep a pain diary. Change your lifestyle- staying out of sun , stay cool, diet, barefoot, sandals, cotton clothing, pace yourself , job change etc.... Use cooling tactics . I sent you link upon arrival its, http://forum.livingwitherythromelalgia.org/forum/topics/cool-tips.

One thing I would look at is whether cooling or climatisation works best for you. Some of us cope best staying in cold temperatures and using cooling techniques. Others, find that a stabilise 'warm' environment works best as it avoids the massive vasodilation/constriction oscillations.

EM can develop 2-3 yrs prior to a secondary disorder (autoimmune). ANA results can be really hit/miss. These need retesting at regular intervals. If you Dr is not EM aware might be good idea to seek one out. Here is a list of EM aware Drs for IL? No one specialism manages EM; its a case of finding a good EM aware medic. There is a center in Il that specialises in EM

Re: Gabapentin and cymbalta. Give it time :) Some sufferers report that this combo can help. The antidepressant cymbalta helps with anxiety too. Anxiety is a massive cyclical problem in EM . Effexor has slightly better reports and so does Amitriptyline .

Have you been give any combo creams yet? Transdermal lidocaine? For localised EM it can help.http://forum.livingwitherythromelalgia.org/forum/topics/does-anyone-u...

In terms of treatments - old sodium channel blockers are proving pretty successful with EM'ers( lidocaine and mexiletine ) .Recent channelopathy research hails SCB drugs as the way forward for refractory pain such as EM. Two new EM drugs in pipeline are sodium channel blockers (novel topical and oral).

What I am trying to say is stay hopeful. I know how this hits hard (read my hysterical profile).

Please look at minimising triggers . You know the afternoon onwards is going to be bad so try to preempt that terrible flare. Get feet up, cooling before it hits.

We are all here for you - bless you !

Sorry bit disjointed but on phone

Attached couple good articles for you :)

Happy to answers any questions best i can

Talk anytime you like <3

God bless

x

Sent from LG mobile

17

Articles

66-TEABROCHURE.pdf (130 KB)
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Thank you for sharing your story. I hope you find some relief soon!