Worsening symptoms

General
1

Hello everyone,

I am a 36 year old EM patient. I have pretty much been in almost a constant flare up for about a year with some small periods of relief from symptoms. A little over a year ago i was working 3 different jobs, plus going to college for my bachelors. (Yes I probably was over doing it) However, i was diagnosed with EM last July, after seeing several specialists. I have terrible swelling in my left ankle/leg. I have had 3 biopsies because I get lumps in my hands and feet. It was discovered on the last biopsy that these are basically 'blood clots or trapped blood in both my hands and both my feet. I no longer work any job and also had to drop my classes. I have never in my life been so depressed. I feel like a loser although I know it is not my fault. I cant do very many things in the way of helping my husband with the household, and my teenagers expect me to go back to the way I was, they dont understand my pain. I am currently on 3600 mg of gabapentin, as well as dilateziam and prozac. I dont know why I bother even taking them because they make me out of it and do not seem to be helping with my condition. I am treated by an amazing doctor at UMASS here in Massachusetts (although I live out of state, i travel to MA to see my doctor.) However, she has sent me to neurologists and rheumatologist because she just cant seem to do anything for the pain i am having. My nerve conduction studies were all negative and the rheumatologist thinks that I also have Fibromyalgia. As a side note, i also have diverticulosis. I dont know whats connected and what isnt but I know I cant take this anymore. Summer is basically here and i do not wish to spend the whole summer in my Air Conditioned room. I was on pain medications but they also did nothing to help my condition and instead made me feel like I was becoming addicted to pain meds. Therefore, i no longer take anything for pain. Does anyone out there have these same problems? and What are you doing for the pain? Im basically just looking for a nice discussion here to help with some ideas for me. Thank you all so much.

2

has your doctor tried lidocaine infusions or ketamine infusions I have a little sucess with these treatments good luck

3

Dietary changes:

I have had some success with eating less of the following:

sodium - reduce to as little as possible

citrus

red skinned berries & fruits - strawberries, grapes

bee products - honey, etc

tea

4

Have you tried aspirin? The blood clots lead me to wonder if perhaps that would help. I barely function (and cannot sleep due to burning) without aspirin. I take two baby aspirin (81mg each) at breakfast and two more at dinner.

5

Dear SassiKerri,

I am fairly new to this site. I have had EM for 14 years now and understand ALL of what you are going through. I have not had the lumps in hands and legs but I have had the horrible swelling in feet and legs many, many times, along with that because of the issue of my legs and feet going up and down my skin now very easily breaks open and I end up with an infection called cellulitis. I end up in the hospital with IBV antibiotics. I am not trying to make you more depressed, I am trying to give you tips on how to help prevent this.

First of all do NOT rub on your skin very hard while cleaning he affected area. I now use my hands only to wash those areas. I BELIEVE GOD HAS ANSWERED MY PRAYERS on lessening my pain. I take Gabapentin and Effexor. There is no doubt that they have kept me from loosing my mind. BUT THE BIG ONE is now Magnesium. I have a wonderful doctor, she has been with me through this, heart failure (nothing to do with EM) and much more. She diagnosed me before the Mayo Clinic did in Manchester MN did.

The Magnesium came from Dr. Cohen and his writings on it. He had EM for three years and was bedridden for all those years. He started the magnesium and now works and is in remission. Well........I started magnesium 500 mg. with my doctors knowledge (she tests my blood every 2 weeks). I am having some kydney failure issues (due to so many diurects for my heart). The tests showed that I could take no more the 500 mg. of magnesium (my niece has been diagnosed with EM also) and is having a rough time. She has started the magnesium also. She lives in Jacksonville. FL and is going to the Mayo Clinic there.

Ifeel like a new human being, it took about 3 to 4 weeks for the magnesium to really start working big time. I can't believe this is how life is supposed to be. I am so used to praying and praying and crying and crying. My whole family has been devastated. I have gone to no holiday celebrations, no family get togethers. I never left the house except to go to the doctor. I just went to my granddaughters 8th grade play and to her honors program and graduation. I feel better than a lottery winner, than any millionaire. There are time when I have to back off and watch staying out of the heat. I have had a couple incidents where I thought it was coming back. One thing I do is apploy Aquaphor, it has the consistency of vaseline (but do not think it is like vaseline) I put it on sparingly and it keeps my skin from drying out and splitting. I have used it for years and it is something I cannot do without. I pray that this will be of help to you and everyone. Just be careful with the Magnesium and don't think more is better unless your doctor okay's it. My husband went to the drugstore and the pharmacist helped him pick out the best. You don't want a cheap brand, because there is a difference AND he did not sell us their brand either. God bless you and your family. Feel free to e-mail me if you have questions. I believe you can look for a brighter future.

Kathleenlynn

6

The swelling might be just part of your EM as my legs and feet go up to 5x normal size and they can be down in swelling then within a couple of hours there huge again! So frustrating (and makes me walk like a penguin!!) The only pain med I’ve had success with is dihydrocodeine, takes the pain away but not the burning sadly. But I have EM pretty much constant too since I was 12, I’m now 17. I have it quite severe so I’m under a desk fan pretty much constant! A year ago I was also diagnosed with depression which they said was due to EM.

7

I am so sorry. I have a much better support group than you have. In that aspect I am blessed. My pain doctor wants to install pain machine in my back. Have you tried that? It helps some of us but not all. I truly hope you are having a better day. Jim

8


what is the brand of magnesium you are taking.


Kathleenlynn said:

Dear SassiKerri,

I am fairly new to this site. I have had EM for 14 years now and understand ALL of what you are going through. I have not had the lumps in hands and legs but I have had the horrible swelling in feet and legs many, many times, along with that because of the issue of my legs and feet going up and down my skin now very easily breaks open and I end up with an infection called cellulitis. I end up in the hospital with IBV antibiotics. I am not trying to make you more depressed, I am trying to give you tips on how to help prevent this.

First of all do NOT rub on your skin very hard while cleaning he affected area. I now use my hands only to wash those areas. I BELIEVE GOD HAS ANSWERED MY PRAYERS on lessening my pain. I take Gabapentin and Effexor. There is no doubt that they have kept me from loosing my mind. BUT THE BIG ONE is now Magnesium. I have a wonderful doctor, she has been with me through this, heart failure (nothing to do with EM) and much more. She diagnosed me before the Mayo Clinic did in Manchester MN did.

The Magnesium came from Dr. Cohen and his writings on it. He had EM for three years and was bedridden for all those years. He started the magnesium and now works and is in remission. Well…I started magnesium 500 mg. with my doctors knowledge (she tests my blood every 2 weeks). I am having some kydney failure issues (due to so many diurects for my heart). The tests showed that I could take no more the 500 mg. of magnesium (my niece has been diagnosed with EM also) and is having a rough time. She has started the magnesium also. She lives in Jacksonville. FL and is going to the Mayo Clinic there.

Ifeel like a new human being, it took about 3 to 4 weeks for the magnesium to really start working big time. I can’t believe this is how life is supposed to be. I am so used to praying and praying and crying and crying. My whole family has been devastated. I have gone to no holiday celebrations, no family get togethers. I never left the house except to go to the doctor. I just went to my granddaughters 8th grade play and to her honors program and graduation. I feel better than a lottery winner, than any millionaire. There are time when I have to back off and watch staying out of the heat. I have had a couple incidents where I thought it was coming back. One thing I do is apploy Aquaphor, it has the consistency of vaseline (but do not think it is like vaseline) I put it on sparingly and it keeps my skin from drying out and splitting. I have used it for years and it is something I cannot do without. I pray that this will be of help to you and everyone. Just be careful with the Magnesium and don’t think more is better unless your doctor okay’s it. My husband went to the drugstore and the pharmacist helped him pick out the best. You don’t want a cheap brand, because there is a difference AND he did not sell us their brand either. God bless you and your family. Feel free to e-mail me if you have questions. I believe you can look for a brighter future.

Kathleenlynn

9

Many doctors just don't know about this disease. For me it only got worse over the years..originally started in 95 in my feet..after many diff doctors, and tests was sent to a pain clinic...after 4 mnths they told me to live with it...over the years it spread to my legs, my body, me hands, my face, my ears...lately other than the difficulty walking my ear has been driving me crazy...am starting back to doctors after many years of giving up....seeing a dermatologist recommended here in two weeks...hope that some form of aleviation of the pain might be available as I know there is no cure...my feet and legs are purple most of the time and awful to look at...good luck. So far have not taken any anti depressents..would like to stay that way.

10

i am printing some of your statements about treatment..eg..magnesium...will bring them with me to the doctor in two weeks.

11

I am just really feeling depressed about it all to be honest. I haven't heard of any of these treatments any of you have suggested (except the aspirin, which didn't work). The doctor that is treating me is a dermatologist, does any one know if I should be seeing a different type of doctor for my condition???

12

I am going to see a rheumatologist, and I know others see a neurologist

SassiKerri said:

I am just really feeling depressed about it all to be honest. I haven't heard of any of these treatments any of you have suggested (except the aspirin, which didn't work). The doctor that is treating me is a dermatologist, does any one know if I should be seeing a different type of doctor for my condition???

13

i suggest everyone read a good old fashion organic chemistry book, neurology text book, anatomy text, and the 100 or so times erythromelalgia is ever mentioned in the medical literature, its not that hard considering how much time we all sit down for a day, and to truly understand our disease, and why there is very limited treatment is invaluable to know. These doctors are not used to conditions as rare as ours, and going doctor to doctor isnt going to do much in most cases. They read from the same sources and studies, and if you find them on google, you can better educate yourself. dont depend on doctors!!! most have never needed to know about erythromlelagia, even the best doctors on earth do very little research into it.

14

When i first got symptoms in 95 I saw many doctors..family doctor, sent me to a dermatologist..no idea..sent me to a rhumatologist..1st one said it was vaculitis...2nd one said it was not..did tests, sent me to a neurologist...he did many tests..sent me back to dermatologist, did a skin biopsy and later a nerve biopsy...then sent me to a pain clinic...who after 4 months told me to live with it, they could not help. ( i gave up seeing doctors then) over the years the disease has progressed to most of my body ...am seeing a Dr. Walsh a dermatologist at Sunnybrook hospital in Toronto whom another member on this site recommended...he is treating her....will see what happens, appt. is on the 6th of June. Have never taken any medication for EM. Live in pain a lot.

15

smoking "mary jane" can help with pain, just as it does with some cancer paitients...just saying..

16

I went to a neurologist who was the one that discovered my EM also, she got in touch with other neurologists, others who know of EM too. Seen dermatologist. Knew nothing and were of no help.

17

SassiKerri,

Like another person here, I also responded very well to Magnesium (Citrate) and have been on it for around 12 years. I also recommend Jay Cohen's websites and newletter. I found it useful for deciding what meds, supplements and foods may be triggers for me or may help me, so I had a sort of guide for experimenting. I discovered that a supplement, new food triggers and new nerve damage was to blame for my EM getting much worst last year. But now I'm back to my baseline. I've also benefited from treatment for mast cell activation (see below), and Metanx (high dose dietary B-12 and Folate w/dietary B-6).

It's makes good sense to me that you've seen neurologists and rheumatologists to rule out those disorders, but since you have a combination of symptoms of EM, Fibromyalgia and diverticulosis, I wonder if you may have something like what I do, a heritable disorder of connective tissue (eg, Ehlers-Danlos, Marfan Syndrome), with one or more of the associated disorders (eg, MCAS, POTS). You may want to look at info on those types of disorders to decide if you should be evaluated. I highly recommend Dr. Francomano at GBMC in Baltimore if you ever suspect an HDCT. In just one appointment she's improved my functioning. (She's booked up several months ahead though). I've run into a couple of people who have EM and EDS (Ehlers-Danlos Syndrome) and I've found that advice for patients with EDS has helped my EM and Fibromyalgia symptoms even though EDS doesn't appear to be the HDCT that I have. There are some great docs in Ohio, Boston and SC too, depending on which disorder (below) you're looking at, or if looking at the combination of the three. Doctors who are not specialists in these specific disorders will not be likely to help you, though they may say they are qualified. And even among the few specialists in them, many are good at diagnosis but not treatment or vice versa. So choose docs wisely if you end up pursuing this.. If you'd like more info, here are some links.

http://www.niams.nih.gov/health_info/connective_tissue/default.asp#f Q & A on HDCT's

http://www.medscape.com/viewarticle/717904_5 POTS

http://www.jhoonline.org/content/4/1/10 Mast Cell Activation Syndrome

http://prettyill.com/ Great site for help in understanding EDS, MCAS, POTS, etc. (handouts, videos, forum)

It's just a thought and may not be helpful to you, but if your docs have ruled out neurological disorders, autoimmune disorders and polycythemia vera, it may be worthwhile to read up on HDCTs as a possibility. Or maybe this info will help someone else. I hope you find some relief soon!

Oh, and in answer to your last question, I think neurologists are the most fitting specialty for EM (and Fibromyalgia), but it can be tough to find one who will make the effort to help with EM. A dermatologist, GP or rheumatologist can be just as helpful if the doc is sincerely concerned and determined to help you.

SassiKerri said:

I am just really feeling depressed about it all to be honest. I haven't heard of any of these treatments any of you have suggested (except the aspirin, which didn't work). The doctor that is treating me is a dermatologist, does any one know if I should be seeing a different type of doctor for my condition???

18

I went to the Mayo Clinic specifically for EM I waited 2 years for an appointment. I saw a dermatologist. I must say personally it was the biggest waste of time and money. I could have cried and later did (in front of him unfortunately). He was very arrogant (with me). He did order tests and I was diagnosed with EM. He referred me to a Dr. Feahly (sp)? He was a Neurologist only I was told he had an additional medical title in the Neurology field that very few doctors throughout the country had. One again I for get what that title was. He was the first and only Dr. to run very specific tests and put me on medication the made a difference. It has been three years and of course I have no contact with him. I live to far away. But God is taking care of me and I am starting to see a light at the end of the tunnel.

Personally I would NOT at this time see a dermatologist. This is a vascular and a Neurological problem. I felt like seeing a dermatologist was all about skin. He didn't mention anything about the reason why. Of course nobody has all the answers yet. But they do know what is happening. Just not why and what the trigger/cause is. I hope you find help.I have a wonderful Internist who said years ago, (I bet you have Erythromelalgia). We sort of just went on and then when I got back from the Mayo. I asked her how she even thought it might be that. I believe it is her tremendous desire to know about strange disorders. I know God put her in my life. Because she is fighting for me like you would not believe. For ex. I use Lidoderm patches on the tops of my feet. They really help me. Humana is now denying them because I have not had shingles nor diabetic neuropathy. Well.......I just found out I do have diabetes along with heart failure and chronic bladder infections and on and on. Well....the Dr. who would not pass me for the patches said,"Well, why don't you use the diabetic diagnosis. My doctor said, "that would be a lie, don't you remember I just told you she just got diabetes? The neuropathy came way before that. God bless her for NOT LYING. Some people may think she is nuts. I say good for her we will get it the honest way.

Kathleenloynn

Kentuckian said:

SassiKerri,

Like another person here, I also responded very well to Magnesium (Citrate) and have been on it for around 12 years. I also recommend Jay Cohen's websites and newletter. I found it useful for deciding what meds, supplements and foods may be triggers for me or may help me, so I had a sort of guide for experimenting. I discovered that a supplement, new food triggers and new nerve damage was to blame for my EM getting much worst last year. But now I'm back to my baseline. I've also benefited from treatment for mast cell activation (see below), and Metanx (high dose dietary B-12 and Folate w/dietary B-6).

It's makes good sense to me that you've seen neurologists and rheumatologists to rule out those disorders, but since you have a combination of symptoms of EM, Fibromyalgia and diverticulosis, I wonder if you may have something like what I do, a heritable disorder of connective tissue (eg, Ehlers-Danlos, Marfan Syndrome), with one or more of the associated disorders (eg, MCAS, POTS). You may want to look at info on those types of disorders to decide if you should be evaluated. I highly recommend Dr. Francomano at GBMC in Baltimore if you ever suspect an HDCT. In just one appointment she's improved my functioning. (She's booked up several months ahead though). I've run into a couple of people who have EM and EDS (Ehlers-Danlos Syndrome) and I've found that advice for patients with EDS has helped my EM and Fibromyalgia symptoms even though EDS doesn't appear to be the HDCT that I have. There are some great docs in Ohio, Boston and SC too, depending on which disorder (below) you're looking at, or if looking at the combination of the three. Doctors who are not specialists in these specific disorders will not be likely to help you, though they may say they are qualified. And even among the few specialists in them, many are good at diagnosis but not treatment or vice versa. So choose docs wisely if you end up pursuing this.. If you'd like more info, here are some links.

http://www.niams.nih.gov/health_info/connective_tissue/default.asp#f Q & A on HDCT's

http://www.medscape.com/viewarticle/717904_5 POTS

http://www.jhoonline.org/content/4/1/10 Mast Cell Activation Syndrome

http://prettyill.com/ Great site for help in understanding EDS, MCAS, POTS, etc. (handouts, videos, forum)

It's just a thought and may not be helpful to you, but if your docs have ruled out neurological disorders, autoimmune disorders and polycythemia vera, it may be worthwhile to read up on HDCTs as a possibility. Or maybe this info will help someone else. I hope you find some relief soon!

Oh, and in answer to your last question, I think neurologists are the most fitting specialty for EM (and Fibromyalgia), but it can be tough to find one who will make the effort to help with EM. A dermatologist, GP or rheumatologist can be just as helpful if the doc is sincerely concerned and determined to help you.

SassiKerri said:

I am just really feeling depressed about it all to be honest. I haven't heard of any of these treatments any of you have suggested (except the aspirin, which didn't work). The doctor that is treating me is a dermatologist, does any one know if I should be seeing a different type of doctor for my condition???

19

I have EM, but I am for now trying to ignore/ live with the symptoms. My neurologist prescribed Lyrica which I have not taken as I am trying to be med free as long as possible. He said it helps some people.

20

Hi - yes, I found myself getting depressed throughout my time with EM, but can now honestly say things have greatly improved and there is HOPE. Hang in there, literally one-day-at-a-time. Something that helped me get to where I am is the following document that describes therapies to discuss with your doctor. Hope it helps.

http://medicationsense.com/articles/2012/emtreatment.html