Hi all, do you all feel like you are running on very low energy? If I could just stay in bed all day I would as I’m often so tired I just don’t feel motivated to do anything except lying down. Is this part of the EM? I have seen anything in the literature.
Hi fuga Duce. I Am Not Sure If It Is EM related or if it is part of an underlying condition that causes EM. I have many days like that but it could be because of an autoimmune condition they think but don’t know for sure I have. After talking more and more with others with EM either there are more people that have undiagnosed autoimmune or other condition or EM does a lot More to some of us that is known. Sometimes it seems it is more systemic for some of us.
I am curious to see if others have this problem too.
Take care,
Alina
For the last 4 yrs or so, I have tested low in iron ( blood test)...Right now my levels are still a little low, but better...So, still take ferrous sulfate, for that, & it's not a prescription...It helps somewhat with energy, but not a whole lot. So, I take a supplement that helps for energy also..Though, you just don't want to take this stuff (ferrous sulfate}, unless your blood test indicates low iron levels & your primary doctor advises you...As, you might have underative thyroid, or other problems that is causing you to feel sluggish, ..Have you had recent blood work to check for anything?...Too, blood work also indicated, I test low for D3 (non-rx) & take that with K-2 Found out this helps get the D3 into your bones better...Though, please don't start taking all this stuff unless your blood work indicates that you are low in what I typed about......Sure hope you start feeling better...
Too, with EM, the aggravation of feet burning can, for me after awhile seems to cause fatigue ....Though, have had some recent luck using Emu oil that helps somewhat, at least to wear soft socks on my feet for a period of time more than I could before. I haven't been diagnosed with EM, just CVI (chronic vein insuffiency ) Found this out by a phlebotimist MD who ran a recent venous doppler test on, both my legs & my feet are purple (spider veins, varicoses & red a lot, especially lingering after a warm/hot bath, which I used to enjoy ( no longer), though docs here in mid- state Illinois, don't seem to know that much about EM...So, am not sure the tops of my feet & too ankles are caused by CVI or EM.... Though, I think EM might be a possibility, as hands get that way, occaisionally, at times too,,,. .. .
Low energy can have a lot of reasons but I am pretty sure that EM itself does not cause it. Medications, lack of proper sleep, worries, depression are just a few possibilities.
Setting aside my present situation which has me spending more time on my bed than off it, I find that I am often tired but put it down to the worst aspect of EM which is not being able to get a good night’s sleep. I don’t think in my case that EM alone leaves me without energy but no-one feels full of beans if they have spent part of every night trying to cool fevered feet. Also it is hard to tell isn’t it when many of us have other conditions too.
Nel
HI ALL ....ME ALSO....EXTREMELY TIRED...ALWAYS
I TRY TO EAT AS HEALTHY AS POSSIBLE
CHOCOLATE WORKS SOMETIMES...GOOD LUCK
Don’t have this particular problem if I get a good night’s sleep
Have you check your B12?? My neurologist has me on it and it seems to help
Good luck, hang in there, Spring is coming…
I have felt like this but I think the reason for it is because it is hard to get really restful sleep during the night. I have found for the most part staying active and eating only a diet of fresh fruits and vegies plus protein helps. It also helps me sleep better during the night so I am not so drained during the day. When I find myself lagging, I force myself to walk or do something useful, even if I have to rest in between.
Yes, I am low in B12. This has shown up several times over the years. I'm seeing a neurologist in a couple of days who asked me now to start taking some until they do the electro something or other test. I really have to start speaking their language. Anyway, she said she wants to have a baseline before I start changing to many things. She wants to know if it is because of a deficiency in my diet (vegan) or problems with absorption. I'll let you know.
Dominique said:
Don't have this particular problem if I get a good night's sleep
Have you check your B12?? My neurologist has me on it and it seems to help
Good luck, hang in there, Spring is coming...
Hi Alina, we have changed my husband's specialist, we saw a neurologist and a neuroimmunologist. They are both thinking my husband's EM is caused by undetected autoimmune disease. They say that at his age, it is very unlikely that it is primary EM. They are suggesting IMG (immunoglobulin) treatment.
Alina Delp said:
Hi fuga Duce. I Am Not Sure If It Is EM related or if it is part of an underlying condition that causes EM. I have many days like that but it could be because of an autoimmune condition they think but don't know for sure I have. After talking more and more with others with EM either there are more people that have undiagnosed autoimmune or other condition or EM does a lot More to some of us that is known. Sometimes it seems it is more systemic for some of us.
I am curious to see if others have this problem too.
Take care,
Alina
Hi Maggie,
For years my doctors have told me I have some kind of autoimmune issue, They tested me for Lupus and Antiphospholipin Syndrome and I was close but did not have enough markers for a clear diagnosis. This year they gave me a genetic test that help determine a blood disorder. If you would like more information about this test please let me know.
I love chocolate but can't have it because it makes my heart pound out of my chest. I'm very sensitive to stimulants.
TANGHE JAN PETER said:
HI ALL ....ME ALSO....EXTREMELY TIRED...ALWAYS
I TRY TO EAT AS HEALTHY AS POSSIBLE
CHOCOLATE WORKS SOMETIMES...GOOD LUCK
Me too,
But I know I have a weakened immune system due to bacteriology testing and findings of mono and mycoplasma.
Have had fatigue issues even before EM and for me it is the reasons I came down with EM, just generally tired liver and kidney due to pain killers, anti depressers and a sluggish thyroid for 10yrs and too much stress. I always ate very well but stressed my body through a bad marriage and too many moves)
(today only taking levothyrox still on this list of medsand looking to fix thyroid better using NAET method)
Good question,
Reading on nourishing the liver and kidney with organic kidney and liver meats, bees jelly, or B12 suppl. Let you know if it works.
Are you able to exercise at all? It makes a huge difference in my energy levels.
Hi Tizzy, just want to mention that I also took Cipro - 3 months later I had my first signs (itchy feet) of what I now know is EM. I didn't even have an infection - it was just a precaution because the doc couldn't figure out my weird belly pains and never could - it just stopped after 3 weeks. I learned about Cipro a few months ago - it is totally banned in Europe but of course the USA who is ruled by the FDA about what medications are allowed only put a black box warning on it. There was even a Class A lawsuit but from what I have learned it was thrown out of court.
I wish you good luck and you are right - worrying doesn't solve anything and the worry itself is usually totally not necessary to begin with.
Hi Tizzy and Domina, I also took Cipro a few years back for a kidney infection and I don't think I ever recovered. I have a number of UTIs that followed along with some hair raising difficult pregnancies and miscarrages. We for that I want not aware or even new anything about my platelet count. I feel that if I was to go back and pin point when I went from someone who was never ill to someone who always had something going wrong with their health that would be it. The Cipro.
When you typed, Fuga Duce, that your heart pounds after you eat chocolate & this happens with other stimulants...Make sure you check your blood pressure...It might be high...I used & still too, at times react to anything with caffeine in it, especially with coffee. Though, chocolate now, usually calms me with its magnesium. My heart palpaptations started around the time I was diagnosed with high blood pressure, about 3 yrs ago..Though, I couldn't take the conventional meds that my primary doc prescribed..I sought out a naturopathic doc then who advised me to take Carditone, a herb which helped alot & occaisionally take it still when I know I have HBP spikes...If you are diagnosed with HBP, it can cause fatigue..
Looks all too familiar to me thanks so much for sharing!!
The solution in my current understanding of EM and the Immune system is:
After the antibiotics a solid plan to rebuild stomach flora is necessary: 1) Probiotic supplements, 8 days per month for 3 months (ordered online for maximum freshness or through a naturopath. 2) and adding in healthy ferments in your diet (raw sourcraut, kamboucha drink etc, you can goggle) 3) doing stomach repair with a stomach mucose building product.
Treat stress by many techniques, actively work at solving baseline worries for 1 hr per day, then stop and enjoy the day, do breathing techniques from Yoga or sophrologie, pray, get excercise etc. Of course easier said than done.
Diet: remove white sugar products if possible, follow Zone or Metabolic Balance or something that even outs blood sugar but make it liveable, "Amies Raw" has great dessert recipees for a one a week fling, chocolate avocado pudding is yum and coconut almond chocolate balls...
I know some products that will repair the nerves from further dammage that I obtained here in France and you can certainly have delivered to yo from here. see my article in natural healing here or ask me again.
I am not an expert but just sharing what seams to be correct
Tizzy said:
My EM came on suddenly after I had 2 lots of really strong antibiotics. Immune system must have been run down because I had a bout of cellulitis on my temple and side of face- I thought it was shingles but then I spiked a temp and the infection started spreading at a rate of knots. Big doses of iv antibiotics for 4 days. There was no sign of a scratch or insect bite that would have suggested how i got the infection in the first place. Two months later a bad urinary infection and more strong antibiotics-ciprofloxacin (which now carries a black box warning about neuropathy).Surprise , surprise 5 weeks later the first symptoms of Em.
I have to ask myself why I was so vulnerable to infection and I have to say I have always been a nervy person.After a ghastly house build and one of my boys being quite ill, I really let anxiety run away with me - I could almost feel my nerves shredding.Anytime I got a jolt of adrenaline,even something like a door slamming it literally felt like poison in my system.
I decided I needed to let things wash over me and not get so wired - but too little to late. Well I certainly have learnt to stress less ,initial stages of EM excluded. I have to rest more and really don't have the energy to let trivial things bug me.In retrospect much of what I let worry me was such a waste - i had felt that continually thinking about my sons health and playing out various scenarios in my mind ,would somehow protect him. Wow - seems I had a God complex ,no wonder I was exhausted - my worry can keep people safe!!!!
I am not surprised at how often our immune systems seem to turn against us in periods of stess and fatigue - add in some neuropathy causing antibiotics and the rest is history!! Hindsight is always
20/20. I am surprisingly zen now ,but not quite ready to admit Em has taught me something. Rest when you can ,don't fight it too much and look after yourself.
Sooooo interesting that we all had great health until antibiotics came along!! As a child and up to my late 20's, I was never off sick from school but once or twice in 25yrs! I never avoided sick people, knew I had a strong immune systeme and hugged especially the sick!
Fuga Duce said:
Hi Tizzy and Domina, I also took Cipro a few years back for a kidney infection and I don't think I ever recovered. I have a number of UTIs that followed along with some hair raising difficult pregnancies and miscarrages. We for that I want not aware or even new anything about my platelet count. I feel that if I was to go back and pin point when I went from someone who was never ill to someone who always had something going wrong with their health that would be it. The Cipro.
Forgot to add that essential oils can work just as effectively as antibiotics, they also destroy good bacteria so you must also rebuild immunity after but still better than zithro.
Christina said:
Looks all too familiar to me thanks so much for sharing!!
The solution in my current understanding of EM and the Immune system is:
After the antibiotics a solid plan to rebuild stomach flora is necessary: 1) Probiotic supplements, 8 days per month for 3 months (ordered online for maximum freshness or through a naturopath. 2) and adding in healthy ferments in your diet (raw sourcraut, kamboucha drink etc, you can goggle) 3) doing stomach repair with a stomach mucose building product.
Treat stress by many techniques, actively work at solving baseline worries for 1 hr per day, then stop and enjoy the day, do breathing techniques from Yoga or sophrologie, pray, get excercise etc. Of course easier said than done.Diet: remove white sugar products if possible, follow Zone or Metabolic Balance or something that even outs blood sugar but make it liveable, "Amies Raw" has great dessert recipees for a one a week fling, chocolate avocado pudding is yum and coconut almond chocolate balls...
I know some products that will repair the nerves from further dammage that I obtained here in France and you can certainly have delivered to yo from here. see my article in natural healing here or ask me again.
I am not an expert but just sharing what seams to be correct
Tizzy said:My EM came on suddenly after I had 2 lots of really strong antibiotics. Immune system must have been run down because I had a bout of cellulitis on my temple and side of face- I thought it was shingles but then I spiked a temp and the infection started spreading at a rate of knots. Big doses of iv antibiotics for 4 days. There was no sign of a scratch or insect bite that would have suggested how i got the infection in the first place. Two months later a bad urinary infection and more strong antibiotics-ciprofloxacin (which now carries a black box warning about neuropathy).Surprise , surprise 5 weeks later the first symptoms of Em.
I have to ask myself why I was so vulnerable to infection and I have to say I have always been a nervy person.After a ghastly house build and one of my boys being quite ill, I really let anxiety run away with me - I could almost feel my nerves shredding.Anytime I got a jolt of adrenaline,even something like a door slamming it literally felt like poison in my system.
I decided I needed to let things wash over me and not get so wired - but too little to late. Well I certainly have learnt to stress less ,initial stages of EM excluded. I have to rest more and really don't have the energy to let trivial things bug me.In retrospect much of what I let worry me was such a waste - i had felt that continually thinking about my sons health and playing out various scenarios in my mind ,would somehow protect him. Wow - seems I had a God complex ,no wonder I was exhausted - my worry can keep people safe!!!!
I am not surprised at how often our immune systems seem to turn against us in periods of stess and fatigue - add in some neuropathy causing antibiotics and the rest is history!! Hindsight is always
20/20. I am surprisingly zen now ,but not quite ready to admit Em has taught me something. Rest when you can ,don't fight it too much and look after yourself.