I can't tell you much on treatments - I'm going to start gabapentin this week - but I see a rheumatologist for this. I know the Mayo Clinics site has dermatology listed, but my primary thought rheum would be better, since EM is "kinda" like reverse Raynauds, and rheum manages that. For specific pain, neuro or a pain clinic might be useful, but in any case, I think it's most important to find a physician who listens to you, knows about the disease, or can refer you to someone who does. Keep looking around. I've seen 3 or 4 rheumatologists, 1 of which didn't listen and put me on a med that made my symptoms worse. But I finally found one who I think will work well for me.
Unfortunately, having a really rare disease makes finding knowledgeable doctors hard, but research shows that, even if the treatment isn't ideal, patients who feel like their doctors know about the condition, are willing to learn more about it, and really listen to them have better treatment outcomes. The power of the human connection is stronger than we sometimes give credit to. Having a good doctor won't take your pain away, but it'll help ease the emotional aspect of the disease.
One recommendation I have (based on earlier comments) is to find a doctor who keeps up on the new literature. Those associated with academic centers may be more likely to do so (But don't ever assume that). Ask your provider. I'm in PA school, and our professors (all practicing PAs) constantly stay on top of the literature, and make sure that we do as well. It really should be the standard of care, but unfortunately not everyone does so. (Side note - if you are treated with an "old method" that is no longer supported by literature (in any aspect of medicine), and that treatment goes poorly/harms you, that's grounds for a lawsuit!) Obviously, having a rare disease is harder, but those who work in the field should have access to good research.
Unfortunately, you can only find so much on google or whatever. There are a lot of good case studies and research trials found in high quality, peer-reviewed literature, that aren't easy to access (try your local library, or a college library. They may be able to help you access these if you're interested in that stuff). Being knowledgeable about your disease is critical to your treatment, but remember that in all areas of medicine, many treatments are based on trial and error. What works for one may not work for another, or even have the opposite effect. Opinions, testimonies, etc from fellow sufferers can be invaluable, but if you're seeking treatment from a medical provider, don't (entirely) overlook their clinical judgement or write them off. This comes back to one of the most crucial things - find a provider you like, you feel really listens to you, and you trust. They won't get it right every time, but knowing that they're sticking with you, and are willing to try something else if you are, will benefit you more than you realize. Treatment, untimately, is a balance between finding the right method of treatment PLUS the right provider(s). Don't give up. There are millions of doctors out there! As many have said on here - we are our own advocates. Fight to get the best provider and treatment you can :)
I am a mother with 2 teenagers, they don't understand what we are going through. My kids think I 'm superwoman or something. I'm also tired of being cooped up in this house all day. I do know that Gabapentin made me hurt worse. My legs were cramping and I started cramping all over. I called my nurse and she advised me that Gabapentin can drop your potassium levels. She said to eat a couple bananas and some orange juice then go to ER to have levels checked but it took forever for her to call me back. Then by the time I got to the hospital and my name was called then checked in and lab came to do the work up my levels were 1.6. I stopped the Gabapentin and my levels have come back up a bit. For some weird reason I can't keep Potassium that's how I knew that levels were low. I also can't keep B-12 so I get injections. I wonder if EM has anything to do with this?
I can't keep B12 either! I have to have monthly injections-can this be a coincidence??
mydogsrbarking said:
I am a mother with 2 teenagers, they don't understand what we are going through. My kids think I 'm superwoman or something. I'm also tired of being cooped up in this house all day. I do know that Gabapentin made me hurt worse. My legs were cramping and I started cramping all over. I called my nurse and she advised me that Gabapentin can drop your potassium levels. She said to eat a couple bananas and some orange juice then go to ER to have levels checked but it took forever for her to call me back. Then by the time I got to the hospital and my name was called then checked in and lab came to do the work up my levels were 1.6. I stopped the Gabapentin and my levels have come back up a bit. For some weird reason I can't keep Potassium that's how I knew that levels were low. I also can't keep B-12 so I get injections. I wonder if EM has anything to do with this?
Wasn’t letting me reply… I also have vitamin B12 deficiency… Get injection for that every 3 months as it got discovered when I got bloods took and they saw my hemoglobin was low and red blood cells were large so they diagnosed me with… Pernicious Anemia and on injections for life. Also on folic acid too.
invisiblenature said:
I can’t keep B12 either! I have to have monthly injections-can this be a coincidence??
mydogsrbarking said:
I am a mother with 2 teenagers, they don’t understand what we are going through. My kids think I 'm superwoman or something. I’m also tired of being cooped up in this house all day. I do know that Gabapentin made me hurt worse. My legs were cramping and I started cramping all over. I called my nurse and she advised me that Gabapentin can drop your potassium levels. She said to eat a couple bananas and some orange juice then go to ER to have levels checked but it took forever for her to call me back. Then by the time I got to the hospital and my name was called then checked in and lab came to do the work up my levels were 1.6. I stopped the Gabapentin and my levels have come back up a bit. For some weird reason I can’t keep Potassium that’s how I knew that levels were low. I also can’t keep B-12 so I get injections. I wonder if EM has anything to do with this?
Wasn't letting me reply.. I also have vitamin B12 deficiency.. Get injection for that every 3 months as it got discovered when I got bloods took and they saw my hemoglobin was low and red blood cells were large so they diagnosed me with.. Pernicious Anemia and on injections for life. Also on folic acid too. invisiblenature said:
I can't keep B12 either! I have to have monthly injections-can this be a coincidence??
mydogsrbarking said:
I am a mother with 2 teenagers, they don't understand what we are going through. My kids think I 'm superwoman or something. I'm also tired of being cooped up in this house all day. I do know that Gabapentin made me hurt worse. My legs were cramping and I started cramping all over. I called my nurse and she advised me that Gabapentin can drop your potassium levels. She said to eat a couple bananas and some orange juice then go to ER to have levels checked but it took forever for her to call me back. Then by the time I got to the hospital and my name was called then checked in and lab came to do the work up my levels were 1.6. I stopped the Gabapentin and my levels have come back up a bit. For some weird reason I can't keep Potassium that's how I knew that levels were low. I also can't keep B-12 so I get injections. I wonder if EM has anything to do with this?
Wasn't letting me reply.. I also have vitamin B12 deficiency.. Get injection for that every 3 months as it got discovered when I got bloods took and they saw my hemoglobin was low and red blood cells were large so they diagnosed me with.. Pernicious Anemia and on injections for life. Also on folic acid too. invisiblenature said:
I can't keep B12 either! I have to have monthly injections-can this be a coincidence??
mydogsrbarking said:
I am a mother with 2 teenagers, they don't understand what we are going through. My kids think I 'm superwoman or something. I'm also tired of being cooped up in this house all day. I do know that Gabapentin made me hurt worse. My legs were cramping and I started cramping all over. I called my nurse and she advised me that Gabapentin can drop your potassium levels. She said to eat a couple bananas and some orange juice then go to ER to have levels checked but it took forever for her to call me back. Then by the time I got to the hospital and my name was called then checked in and lab came to do the work up my levels were 1.6. I stopped the Gabapentin and my levels have come back up a bit. For some weird reason I can't keep Potassium that's how I knew that levels were low. I also can't keep B-12 so I get injections. I wonder if EM has anything to do with this?
Well i'm home now from Nephrologist and i'm a little confused, He said something about IGN does anyone know what this is. More blood in urine and scheduled for kidney ultrasound. Can't wait to see the Lupis Specialist tomorrow!
i think we can all relate to the feeling like a loser part and not being able anymore. i am 34 and also had to quit working and school.....i get really depressed because i can't keep up the house anymore and i sometimes don't even want to leave the house....the winter was not so bad but i know the summer will get worse again...just have to keep pushing on and trying to find a bright side.....i have a wonderful understanding boyfriend and great kids......hang in there hun....
It may be worthwhile to take folate instead of folic acid so your body doesn't have to break it down to make it available. Apparantly a huge percentage of the population is unable to convert folic acid into folate. I researched it all online when the podiatrist put me on Metanx for my EM, peripheral neuropathy and plantar fasciitis.
Yes, I agree we can probably all relate to those feelings. I dread July and August all year, then stay home as much as possible those months. And can never spend time outdoors or on my feet like pre-EM. This year I decided to have groceries delivered when the weather is hot and that has been wonderful. But I don't like being stuck at home when my house is such a mess because of not being able to do all the housework that I need to do. It is definitely depressing. I'm going to work on making home a more pleasant place to be, even if I have to hire someone to clean house although I'll have to give up other things in order to afford that. If I'm stuck here so much, it needs to be pleasant here at least.
MsLovelyNikki said:
i think we can all relate to the feeling like a loser part and not being able anymore....
Im actually on folic acid, put on by a neurologist as its good for neuropathy related strengthen plus I was sick for a full month and folic acid repairs the insides a bit after extreme sickness.
The folic acid for neuropathy problems is I have nerve damage to sensory nerves (related to EM in some way) and in the past 3 months my nerve damage has deterriated LOADS and one of my nerves is actually not responding, pretty much dead… I’m actually fully disabled I can’t walk nor stand a all. Went to bed one night fine no warning signs woke up, hut the floor! Soooo my life’s pretty much up in the air ATM! Plus only being 17 it’s not good at all… Having EM was one thing… One life ruined but this is just on a whole other level. Plus I have extreme, constant EM and learning to walk again with bad EM plus not being able to walk plus EM swelling it’s extremely hard. But I’m doing okay, can stand on my own now… Got to learn to walk again with a zimmer (not cool), getting a lot of house aids too fitted which being 17 is a bit defeating but what can I do.
I am thinking of hiring someone also, it will be such a blessing to have the help....since I am on disability now I will have help paying for it.....
Kentuckian said:
Yes, I agree we can probably all relate to those feelings. I dread July and August all year, then stay home as much as possible those months. And can never spend time outdoors or on my feet like pre-EM. This year I decided to have groceries delivered when the weather is hot and that has been wonderful. But I don’t like being stuck at home when my house is such a mess because of not being able to do all the housework that I need to do. It is definitely depressing. I’m going to work on making home a more pleasant place to be, even if I have to hire someone to clean house although I’ll have to give up other things in order to afford that. If I’m stuck here so much, it needs to be pleasant here at least.
MsLovelyNikki said:
i think we can all relate to the feeling like a loser part and not being able anymore…
Does your neurologist know about Metanx? It's fairly new I think. I researched it before I went on it. It's a normal dose of dietary B-6 with high doses of dietary B-12 and folate. The folate dose is particularly high. The podiatrist couldn't get my insurance to cover it so I looked up the names of the dietary forms for those vitamins and went to the Vitamin Shoppe and bought them individually. To get the same dose I had to take a lot of tablets, which I didn't like doing. And it's pricy to do that. But you only have to stay on them a few months. Shouldn't stay on long at such high doses. It seems to have really helped my peripheral neuropathy. Now I just take a normal dose of those supplements. Metanx uses dietary forms because a lot of people cannot convert them right. I think it's 1/3, maybe more, of the population that cannot convert folic acid into folate. There is scientific research on that.
Lauren said:
Im actually on folic acid, put on by a neurologist as its good for neuropathy related strengthen plus I was sick for a full month and folic acid repairs the insides a bit after extreme sickness. The folic acid for neuropathy problems is I have nerve damage to sensory nerves (related to EM in some way) and in the past 3 months my nerve damage has deterriated LOADS and one of my nerves is actually not responding, pretty much dead.. I'm actually fully disabled I can't walk nor stand a all. Went to bed one night fine no warning signs woke up, hut the floor! Soooo my life's pretty much up in the air ATM! Plus only being 17 it's not good at all.. Having EM was one thing.. One life ruined but this is just on a whole other level. Plus I have extreme, constant EM and learning to walk again with bad EM plus not being able to walk plus EM swelling it's extremely hard. But I'm doing okay, can stand on my own now.. Got to learn to walk again with a zimmer (not cool), getting a lot of house aids too fitted which being 17 is a bit defeating but what can I do.
If there is grocery delivery available where you live, you may want to try it. It costs me about $12 for the delivery and it's really wonderful. They actually put the groceries right on my kitchen counter. Grocery shopping, especially in summer, is just the worst thing possible for my EM. If you subscribe to a grocery delivery service, for a specific number of delieveries/months, it's cheaper. You order and pay online the day before. So far I've used Relay, which uses small farms, local shops and Whole Foods mostly, but there's another good delivery service here too that uses Kroger.
MsLovelyNikki said:
I am thinking of hiring someone also, it will be such a blessing to have the help....since I am on disability now I will have help paying for it.....
Not heard of it, no. I was actually on a powerfull thiamine drip before I got put on folic acid but the folic acid is definetly working no doubt about that!. That one was mainly giving to me to strengthing my insides as i was constantly sick for a full month couldn’t eat or drink so folic acid is commonly used for that to get the lost nessesities inside me built up again. Though it just so happend to strengthing me up a bit walking wise, i get plenty of the right B-12 for me through 3monthly injections. It wouldn’t repair my Neurothopy problems as I’ve been medically sat down and told il never walk again or if I can, never fully but also that later in life it will deteriate, this happend overnight therefore that will come without warning too. EMG tests showed. A nerve connected to sensory is fully dead, that’s un-repairable obviously. The folic acid seems to be settling in with me more than great?. Also, I’m from Scotland and medical prescriptions and all related things are free no needed insurance!. My neurologist was teamed with top professors who specialise in EM and they all agreed on folic acid therefore I have no objections, especially with it doing the trick!. No meds/vitamin is going to repair my Neurothopy it’s too late just strengthen me a bit physically.
Kentuckian said:
Lauren,
Does your neurologist know about Metanx? It’s fairly new I think. I researched it before I went on it. It’s a normal dose of dietary B-6 with high doses of dietary B-12 and folate. The folate dose is particularly high. The podiatrist couldn’t get my insurance to cover it so I looked up the names of the dietary forms for those vitamins and went to the Vitamin Shoppe and bought them individually. To get the same dose I had to take a lot of tablets, which I didn’t like doing. And it’s pricy to do that. But you only have to stay on them a few months. Shouldn’t stay on long at such high doses. It seems to have really helped my peripheral neuropathy. Now I just take a normal dose of those supplements. Metanx uses dietary forms because a lot of people cannot convert them right. I think it’s 1/3, maybe more, of the population that cannot convert folic acid into folate. There is scientific research on that.
Lauren said:
Im actually on folic acid, put on by a neurologist as its good for neuropathy related strengthen plus I was sick for a full month and folic acid repairs the insides a bit after extreme sickness. The folic acid for neuropathy problems is I have nerve damage to sensory nerves (related to EM in some way) and in the past 3 months my nerve damage has deterriated LOADS and one of my nerves is actually not responding, pretty much dead… I’m actually fully disabled I can’t walk nor stand a all. Went to bed one night fine no warning signs woke up, hut the floor! Soooo my life’s pretty much up in the air ATM! Plus only being 17 it’s not good at all… Having EM was one thing… One life ruined but this is just on a whole other level. Plus I have extreme, constant EM and learning to walk again with bad EM plus not being able to walk plus EM swelling it’s extremely hard. But I’m doing okay, can stand on my own now… Got to learn to walk again with a zimmer (not cool), getting a lot of house aids too fitted which being 17 is a bit defeating but what can I do.
I'm really sorry to hear that the docs have so little hope of you healing some of the nerve damage. Sounds like they are very good docs, although no docs know everything, so some healing may yet occur. I wish all the best for you.
I have similar symptoms to you. I was just diagnosed by a neurologist at MGH. I have been having symptoms since childhood and I am your age. I saw 4-5 specialties before getting the diagnosis.
I really feel for you because your situation its so identifiable to me! I was diagnosed with ankylosing spondylitis in October& when my feet were not responding to treatment, but seeming to get worse, another rheumatologist diagnosed me with EM as well. I used to work out 5 days a week, was a labor & delivery nurse & managed my house with 4 children fairly easily! 2 children moved out this year (21 & 19) then we had to downsize homes so I could handle the house! I was terminated from my job in June when I couldn’t return after my 6 months of leave was up! I can’t work out & sometimes cannot even do grocery shopping alone. We are on vacation at Disney this week & had to rent a wheelchair because my feet are so flared from the heat & extra activity that I can barely wall. My 14 year old is seeming to have the hardest time with it all. He used to be such a sweet happy boy & always seems angry now. I have really tried to lean on my faith through it all, because that is something that cannot be taken away from me! I see a new specialist in October & have hope for some better options. I am going to look into the patches, cause it seems a better option for me. Have tried done meds with horrible side effects! Best of luck to you!
I too have found that Magnesium helped my symptoms for a while...however my neuro felt it was unecessary and opted for B-12 supplement, I now use both... i still believe in the magnesium. Hope you ares still feeling better...I too would feel like a lottery winner if these symptoms would just go away!!!
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.
