My EM predates my going through menopause by 19 years, but menopause has definitely worsened the situation because anything that causes me to feel warm sets off the EM. So the menopausal hot flashes set it off. It's miserable. The docs don't know what to do about it. The GYN doesn't seem to understand that even though the hot flashes are normal and natural, they need to be treated because they trigger the EM. Not sure there's effective treatment available for the hot flashes anyway though.
Ebakos - I wonder if you were already borderline EM, but not over the line and showing symptoms, and menopause just tipped the scales in the direction of EM so that you started having the symptoms. Just a thought. I also have thyroid problems. It was hyper, so was treated and is now hypo so I'm on thyroid hormones.
That sounds very much like me Norahs, in regards to what i eat. Alcohol is an immediate trigger. No more drinking for me. I am always the designated driver. I always say, "I WISH I could but I'm not going to go through with the consequence of it".When I eat out I usually get the salad bar & make my own dressing with just olive oil & fresh lemon. I do best (less flaring) with gluten free & vegan. It is hard to stick to 100% so when I get go off that way of eating I sure do feel it. I even sometimes think that the less I eat...the less I flare.
I used to go on that website more often but haven't lately. I will get back to it!
Magnesium has a lot of effects on the body and no one knows for certain why it helps EM, although there are a lot of opinions out there. It relaxes blood vessels so if your vessels are prone to spasming, it will help with that. I've read that it can affect BP in either direction, but for most people it lowers it. It's a calcium channel blocker so that may be part of the picture too.
You could read more on Dr. Jay Cohen's website. The first page you go to has a few inaccuracies just because they're out of date, but he has a lot of useful info. Scroll down for links to articles on Mg. I've found his medication sense newsletter about EM supplements and meds to be very helpful. That's how I figured out my Omega oils were making my EM worse last summer.
Hi Lauri. I should have read your message before I just now posted comments about Dr. Cohen! He's done a good job managing his EM. From what I've read the things he's done with meds, supplements, etc., had lowered his trigger temperature threshold so that he can avoid being triggered most of the time.
The doctor at the Cancer institute you're seeing must treat myeloproliferative disorders, I assume, since those can lead to cancer and some of them can also cause secondary EM that responds well to Aspririn.
I think it's interesting that Mast Cell Activation Syndrome has now been categorized as myeloproliferative and many EMers I know (including self) have a lot of MCAS symptoms. That's something that EMers who improve with antihistamines should probably look into, although it's extremely hard to find a medical expert on those who can evaluate it. It's too new. There's one doc in SC, one in VA, a few in Boston and a very few others scattered about.
Lauri said:
have any of you read the research by dr jay cohan (not sure on spelling of last name)....
...a dr at huntsman cancer institute here in utah that treats secondary forms because he can generally treat the underlying condition ' which he said is a lot of the time related to the bone one marrow and platelet counts. i was told by him if you have this form of EM that taking aspirin for two weeks
Claudette, I weighed 125 lbs back when I started 400 mg Mg, although it's still a good idea to check with your doctor first. People with some medical conditions shouldn't try Mg. I think 400 mg is around the FDA recommended dose for adults now, up from around 250 in the past, if I'm not mistaken.
I take the Mg and Calcium seperately because back when I started an EM doctor told me that both must be taken daily but not at the same time of day. Not sure if that was necessary though and maybe it really is better to take together. Not sure. Also the calcium seems to make me drowsy so I'd rather take it with supper so I'm alert at work.
Claudette said:
Thanks for the advice. I appreciate it. I will definitely start at a lower dose. My weight is about 125 lbs. Do you take the calcium separately or is it combined with the magnesium?
I have been told I most likely have the primary form, as I am perfectly healthy otherwise and no secondary illness was found after blood tests. Also, my EM does not seem to be hereditary. I have been taking the low dose aspirin for three months to see if it would make any difference but my symptoms have not changed at all, so it has not worked for me. So you may be right with respect to that question.
Lauri said:
sorry that uploaded before i was ready. anyway he told me that aspirin taken daily for two weeks would almost certainly take care of the pain if it was the secondary form. obviously not permanently, tnat would be too easy. it did however identify there was an underlying condition that could be looked for, if aspirin did not offer any relief it was almost certain you had the prinary form. anyone else ever heard anything similar?
Yes, I have also heard that you should not take calcium at the same time as any other supplements. BTW, how much calcium do you take?
Kentuckian said:
Claudette, I weighed 125 lbs back when I started 400 mg Mg, although it's still a good idea to check with your doctor first. People with some medical conditions shouldn't try Mg. I think 400 mg is around the FDA recommended dose for adults now, up from around 250 in the past, if I'm not mistaken.
I take the Mg and Calcium seperately because back when I started an EM doctor told me that both must be taken daily but not at the same time of day. Not sure if that was necessary though and maybe it really is better to take together. Not sure. Also the calcium seems to make me drowsy so I'd rather take it with supper so I'm alert at work.
Claudette said:
Thanks for the advice. I appreciate it. I will definitely start at a lower dose. My weight is about 125 lbs. Do you take the calcium separately or is it combined with the magnesium?
I take 1000 mg to 1200 mg of Calcium due to being on 600 mg magensium. Some think you should take double the amt of Calcium as Mg and others think it's best to take equal amounts. I'm lactose intolerant and going through menopause, so I'm opting for the higher number.
I wonder why your doctors are saying you have primary EM if it's not inherited. What used to be called Primary is now called Inherited Erythromelalgia (IEM) to clarify that it is always inherited, I thought. I would think they'd call yours Idiopathic EM since the cause of it is unknown. Have they told you that EM that's secondary to a myeloproliferative disorder can pre-date other symptoms of the MD by several years? I've read that the average is 8 years.
Mine is Idiopathic in that my parents didn't have it, and it's impossible to have IEM unless a parent had it. I do have an undiagnosed condition that is thought to be causing my EM and there are others in my family with all the same symptoms including EM. So I really probably have Secondary EM, caused by an inherited condition (probably an HDCT).
Claudette said:
Yes, I have also heard that you should not take calcium at the same time as any other supplements. BTW, how much calcium do you take?
I think you may be right about me not having Primary EM. I did some more reading and see that you are obviously more knowledgeable about this disease than my doctors. When I saw my GP, he said he did not know what I had and that he could not help me. I insisted that he refer me to someone else, and I suggested a dermatologist. At the time I had never heard of EM. I was then seen by a visiting dermatologist. She said she thought I had early EM and ordered some blood tests to see if I had anything else. When I went home and looked up EM, I saw that she was bang on in diagnosing my symptoms. When I saw her again a couple of months later, she said that my blood tests were normal and that I didn’t have anything else. I asked if it was primary, and she said as far as she could see it was. She did not give me any information or treatment options, except offer to prescribe some pain medication, which I refused. She basically said that nothing could be done and that I should see my GP again if the symptoms got worse. So although I am grateful that she recognized the symptoms and was able to diagnose it, I realize that she did not have any experience in treating it. After my initial visit, she prescribed a cream that did nothing to help. When I read up on it, I saw it was used to treat eczema.
I assumed that I had Primary EM as it didn’t appear to be caused by anything else. Besides menopause, I am perfectly healthy and have no other symptoms. I didn’t know that primary meant “hereditary” only. I know that my EM is not inherited as neither of my parents or family members have it. So, I see that guess I must have secondary idiopathic EM. The mystery continues...
Kentuckian said:
Claudette,
I take 1000 mg to 1200 mg of Calcium due to being on 600 mg magensium. Some think you should take double the amt of Calcium as Mg and others think it's best to take equal amounts. I'm lactose intolerant and going through menopause, so I'm opting for the higher number.
I wonder why your doctors are saying you have primary EM if it's not inherited. What used to be called Primary is now called Inherited Erythromelalgia (IEM) to clarify that it is always inherited, I thought. I would think they'd call yours Idiopathic EM since the cause of it is unknown. Have they told you that EM that's secondary to a myeloproliferative disorder can pre-date other symptoms of the MD by several years? I've read that the average is 8 years.
Mine is Idiopathic in that my parents didn't have it, and it's impossible to have IEM unless a parent had it. I do have an undiagnosed condition that is thought to be causing my EM and there are others in my family with all the same symptoms including EM. So I really probably have Secondary EM, caused by an inherited condition (probably an HDCT).
Claudette said:
Yes, I have also heard that you should not take calcium at the same time as any other supplements. BTW, how much calcium do you take?
It may be helpful for you to print some info on EM treatment to give your GP. I'll put a couple of good links below. Supposedly, the treatment of IEM and the symptoms of Secondary EM are currently the same, so the articles on treating IEM may help regardless of any underlying disorder that may or may not be developing. It's great that your derm recognized you have EM, but it doesn't sound like she's going to be comfortable treating it, as you said.
If you've joined TEA you can get to other pages on their website that may be very helpful too. I think info in their 2008 survey of members is very helpful regarding treatments and underlying disorders of their members.
I've found it impossible to find a doctor who knows how to treat EM where I live, and most don't want to attempt it. But I finally found someone willing to try treatment if I supply the research articles for him to look at. So I hope this helps.
Thank you Kentuckian for this timely information re: MCAS.
MCASis new to me and since the thing that has made the most improvement for mehas been antihistamines you gave me some much appreciated information. Coincidentally I had an appointment today with my pain doctor. I see him every three months and typically we try yet another new treatment. I was fresh out of ideas until yesterday and so far nothing has really worked but I continue to hold out hope and he continues to try anything that bears trying.
I went to his office armed with your information and could almost see the light going on for him as he continued to think about this. He has now prescibed two new medications and said I will know fairly soon if they help me.
Thank you very much for sharing this very "key" piece of info for those of us who benefit from antihistamines. I will keep you all updated as soon as I have anything to share.
Until your information yesterday I really had nothing new to share with him so felt I was kind of at a dead end. Your timing could not have been better.
Kentuckian said:
Hi Lauri. I should have read your message before I just now posted comments about Dr. Cohen! He's done a good job managing his EM. From what I've read the things he's done with meds, supplements, etc., had lowered his trigger temperature threshold so that he can avoid being triggered most of the time.
The doctor at the Cancer institute you're seeing must treat myeloproliferative disorders, I assume, since those can lead to cancer and some of them can also cause secondary EM that responds well to Aspririn.
I think it's interesting that Mast Cell Activation Syndrome has now been categorized as myeloproliferative and many EMers I know (including self) have a lot of MCAS symptoms. That's something that EMers who improve with antihistamines should probably look into, although it's extremely hard to find a medical expert on those who can evaluate it. It's too new. There's one doc in SC, one in VA, a few in Boston and a very few others scattered about.
Lauri said:
have any of you read the research by dr jay cohan (not sure on spelling of last name)....
...a dr at huntsman cancer institute here in utah that treats secondary forms because he can generally treat the underlying condition ' which he said is a lot of the time related to the bone one marrow and platelet counts. i was told by him if you have this form of EM that taking aspirin for two weeks
Thank you so much for all the helpful information. I will be checking it all out. You have been very kind to spent the time replying to my questions. It is much appreciated. Thanks again for all your help.
Kentuckian said:
Claudette,
It may be helpful for you to print some info on EM treatment to give your GP. I'll put a couple of good links below. Supposedly, the treatment of IEM and the symptoms of Secondary EM are currently the same, so the articles on treating IEM may help regardless of any underlying disorder that may or may not be developing. It's great that your derm recognized you have EM, but it doesn't sound like she's going to be comfortable treating it, as you said.
If you've joined TEA you can get to other pages on their website that may be very helpful too. I think info in their 2008 survey of members is very helpful regarding treatments and underlying disorders of their members.
I've found it impossible to find a doctor who knows how to treat EM where I live, and most don't want to attempt it. But I finally found someone willing to try treatment if I supply the research articles for him to look at. So I hope this helps.
Was this test to determine if you have the SCN9A gene? Drew had that but it was sent to the Netherlands.
Dale said:
my doctor Dr.Ringle contacted Dr.Ingo Kurth in germany He said he would do it for free if I consented to them using my blood for research. It started out at 4700 eoros then 1000 erous then he said it would be free. My primary doctor drew the blood for free I paid fedex to overnight it to Doctor Ingo I paid for that which was 90 dollars I live in colorado.So I do not no if I just got lucky with having the gene test done for free I feel like it.but Doctor Ringle could not find nobody in the great old USA willing to do it pretty sad.
I've been reading a lot also since my diagnosis last December.
My takeaway is this: If it's not genetic, then it's a secondary symptom. However, being able to diagnose the underlying condition takes an AVERAGE of 2 1/2 years due to the primary condition not fully manifesting itself in a way that can be diagnosed easily.
My husband was diagnosed with Rheumatoid Arthritis in 2009. It seemed to come on suddenly, but as we learned more about RA, we could look back and see hints and indicators of what was coming. I suspect the primary conditions associated with secondary EM act the same way... you occasionally experience something odd, but write it off to another event going on in your life and when it fully manifests, you will be able to look back and have that "aha moment" recognizing all of the past signs.
I go back for my first follow up with my dermatologist tomorrow. Since he first diagnosed me three months ago, the EM has progressed and I will have lots to report to him. Hopefully, he'll have something to give back to me too!
One other comment... I read the posts regarding menopause with interest as I'm suddenly having some odd female issues. While I'm only 45 and my doctor says I'm too young for menopause, it's certainly become a topic of interest since I have been waking up flaring, sweating, and too hot to get any sleep. This has just happened since the weather turned warmer so I feel like it's my EM... but why am I also having other female issues at the same time.
What confuses me about all of it is that everything just came on and happened in the last year? Hello? ::: shaking head ::: Hopefully answers are coming. :)
Hi, When i started all of my lovely journey with burning/hands/feet, i was also starting my lovely journey into menopause!!! I am convinced that there is something definitely connected with these 2 in my case, whether its that the hot flashes heat up my hands/feet, and bring on the er symptoms, i dont know, but for sure i am worse if my hormones are not under control....
So maybe at your age its perimenopause, i was 48 when symptoms started both er & meno. symptoms.....
elaine
kruizerchick said:
I've been reading a lot also since my diagnosis last December.
My takeaway is this: If it's not genetic, then it's a secondary symptom. However, being able to diagnose the underlying condition takes an AVERAGE of 2 1/2 years due to the primary condition not fully manifesting itself in a way that can be diagnosed easily.
My husband was diagnosed with Rheumatoid Arthritis in 2009. It seemed to come on suddenly, but as we learned more about RA, we could look back and see hints and indicators of what was coming. I suspect the primary conditions associated with secondary EM act the same way... you occasionally experience something odd, but write it off to another event going on in your life and when it fully manifests, you will be able to look back and have that "aha moment" recognizing all of the past signs.
I go back for my first follow up with my dermatologist tomorrow. Since he first diagnosed me three months ago, the EM has progressed and I will have lots to report to him. Hopefully, he'll have something to give back to me too!
One other comment... I read the posts regarding menopause with interest as I'm suddenly having some odd female issues. While I'm only 45 and my doctor says I'm too young for menopause, it's certainly become a topic of interest since I have been waking up flaring, sweating, and too hot to get any sleep. This has just happened since the weather turned warmer so I feel like it's my EM... but why am I also having other female issues at the same time.
What confuses me about all of it is that everything just came on and happened in the last year? Hello? ::: shaking head ::: Hopefully answers are coming. :)
Interestingly enough, when I had my visit with a new geneticist in Baltimore on 3/28 she not only diagnosed me with a "Heritable Disorder of Connective Tissue, NOS", but also brought up that she thinks I have a mast cell activation problem, which seems to be a common problem for some people with HDCT's like Ehlers-Danlos. She prescribed 2 drugs for the mast cell problem, which I haven't started yet, and she changed my Tagamet to Zantac 150. I'm still taking Zyrtec. From what I've read it seems like the HDCT itself or MCAS, if I do have that, could be the cause of my EM. I'm afraid there may be so much nerve damage at this point that nothing will help though, but we'll see.
I already had an appt scheduled with one of the top MCAS doctors in the country tomorrow coincidentally, for a follow-up to chemical (type IV) allergy tests I had. So I wanted to discuss the new scripts with him before I try them. I had already planned to ask him about MCAS, so it's very timely that the geneticist brought it up.
I hope the new meds work for you!
Norahs said:
Thank you Kentuckian for this timely information re: MCAS.....
I took your information to my doctor two weeks ago and he agreed that it could be MCAS. He knows that the only thing that has helped me to date is Loratadine or Claritin so based on what you indicated he was very willing to try some new med’s.
He prescribed the generic for Zantac (cheaper for me than over the counter Zantac) and he also prescribed Singulair. He said give it a month and if no improvement then I can go off. I have been on both a week so I’m not ready to pass judgement yet.
Of course I am praying for full remission. One can hope, right? Even small improvements are welcome so I will let you know if this treatment works. I know everyone is different but I believe anything is worth a try.
I am very interested in hearing more about your geneticist . Did you gain any insight from him/her? I am currently seeing a doctor specializing in pain management. He is head of the department at the University of Washington. I feel very fortunate to have found someone that could diagnose me (which was huge all by itself as you probably know) and also willing to let me participate in my own treatment. With that said, I would welcome hearing about others specializing in other fields that I might benefit from.
I share your concern that there is so much nerve damage that a full recovery is slim. Stopping the progression though would be huge.
I will explore HDCT (never heard of that before) and guess I will know soon enough if I have a mast cell problem.
Thank you so much for sharing your story. We are all so hungry for each and every morsel of information.
I hope and pray that you have found the some answers. I just don’t know how many more directions we can go there is just so little known about EM.
I hope you do find some releif from this new treatment. Did your doctor not do a Serum Tryptase test during a non-flare and one during a bad flare to compare results? That's what mine has just ordered. I know Lab Corps has the serum tryptase test available even though they don't put it on their lists. My GP called and asked if they have it.
Having MCAS wouldn't necesssarily mean you also have an HDCT, but if you are also diagnosed with several other conditions that are painful or you hav lax joints and stretchy or extremely soft skin, etc., you may want to read up on it and see if you should be evaluated. There's a long list of possible symptoms. There is good info on wikipedia, genetics home reference, gene reviews and NIAMS websites. Look up "heritable disorders of connective tissue", "marfan syndrome" or "ehlers-danlos syndrome" as part of the search term for those websites.
My new geneticist did provide some good new ideas, but is still investigating so there may also be more help in future. I really liked Dr. F. She's to be a speaker at the EDNF conference again this year so her bio is posted online. I like that her focus is diagnosing and treating the patient for what they have rather than, as with most geneticists, derterming if they fit their area of research and doing nothing if they don't. I did get helpful tidbits of info from 2 geneticists I saw in the past, but just nuggets of info to relay back to my GP about what condition the GP could consider or refer out for evaluation. But this new doc is not a specialist in EM. We're looking for the underlying disorder among HDCT's.
If you read the above websites and think you should be evaluated to see if you have an HDCT, you can plan to travel to Baltimore to be evaluated (may be worth it) or you could go to the EDNF Physician Directory online and look up Washington doctors. There is one geneticist there, though, that has some poor reviews for his attitude, so read reviews first. I've heard there is a good physiatrist, Greg Carter, at UW Hospital if you have pain problems with tendons, muscles and joints. And one HDCT patient mentioned the Polyclinic is good for routine medical problems of HDCT patients.
I share your frustration with the lack of knowledge available on EM, especially secondary EM. I hope you have found some answers.
Norahs said:
I took your information to my doctor two weeks ago and he agreed that it could be MCAS...
Hi Lauri - I found the following article helpful http://medicationsense.com/articles/2012/emtreatment.html. Personally, my EM has been better controlled by taking Propranolol 20mg 3-4 times a day which the only side feet is cold hands and feet.
Lauri said:
I know this probably isn't the post to do this on but I'm honestly feeling desperate. My burning, which I describe as feeling like someone poured acid on the inside of my skin, is in both feet and both hands it always has been. It is now into both ears and face and has moved down the inside of my throat. My teeth have actually had to be wired into my mouth because I have put so much pressure on them from grinding down on them when the pain gets so bad at times. At this point I have been neurotin but had to come off of it because it made me so drowsy I literally could not function on a daily basis. Just wondering if people out there are willing to share some of the treatments they have found that work
That's a despicable remark from a doctor but unfortunately I think it's true. I can tell you things that work for me.
I take CHELOREX which is a natural combination of herbs and Alpha Lipoic Acid and it really helps keep the inflammation under control ahead of time. I can tell you more about it if you want.
Every night I take a huge fish oil capsule and that definitely helps inflammation. I use a Brookstone bed fan and it would be the item I would save if my house was on fire.
I bought a MICROVAS machine and use it to provide electrical stimulation to my legs and feet as I have peripheral neuropathy.
I am willing to go into this if any one wants more info.