Hello all, first let me do a quick background as I am a new member. I have been suffering with EM for a couple years and significantly progressed in severity. I am a 25 year old male from Indianapolis, IN. I went through tons of doctors trying to find why I would sweat severely in underarms and feet. Along with the burning in my feet constantly at odd times through the day. Finally my dermatologist diagnosed me and am no fighting to get into a nearologist asap. My feet constant heat and pain have caused me to go on FMLA through work Im lucky to make it 3 days a week through an entire day. I have spent almost everyday researching and reading on this forum members stories and questions. I want to thank you all for sharing because it has helped me in ways with tricks and knowledge along the way. I am currently only taking Gapabentin daily and it helps very little.
My Question is along with the normal EM symptoms I have also felt extreme lack of energy I get drained very very easily. I just dump sweat in physical activity. I could sleep anytime of the day. It’s not depression I sometimes feel light headed and as if lack of oxygen but I’m breathing just fine. Does anyone have real fatigue from EM? I’m sure there’s many possibilities for underlying issues here but all this came at the same time. Thanks for reading and any input in advance!
From what you say you have already had a good look around here so you know how helpful and friendly people are. It certainly helps being able to discuss things with people who are going through the same things, as people who don't have this can't possibly know how bad things can be at least that is what I find.
Can I ask you about the second paragraph of what you said? Did all this happen before you took Gabapentin? I am just wondering if you are experiencing side effects from this, as a lot of the things you mention are side effects of Gabapentin. As you say it helps very little it makes me wonder if it's worth taking it as the side effects are not very pleasant at all. Of course, something you need to discuss with your doctor don't just stop taking it.
Thanks for your reply I am very thankful to of found this community of other people sharing the same problem.
In reguards to the gabapentin I was experiencing the fatigue before taking it. Although it does also give some fatigue. Between the fatigue and my feet on fire nonstop I am struggling to do normal daily activities it’s been rough.
Your symptom really look like mine. Turns out my fatigue was due to anemia, we're doing the tests to get a confirmation. Like a domino effect, my fatigue caused me a lot of cognitive stress (anxiety that stays because the brain is not working properly). This gave me pannick attack like episode where I sweat like crazy. I also observed that I had light pressure drops and light tachycardia because what I think is small nerve dammage (not yet asseced).
With all of that, you end up with a good cocktail that makes you insane. What helped me getting answers is being insistant with my doctors and doing a lot of research. Knowing oneself is also good.
Well it’s good to know I am not alone. Funny you mention that I did finally make it into a neurologist couple days ago and they ran some blood tests. They called me today and said I have high red blood cell counts. I guess now I’m getting an appointment with a hematologist. I did some research found a few people who mentioned high red blood cell counts are an indicator of em. I just hope it’s not a cause from EM and they are just sending me off in the wrong direction.
If you have a high red blood cell count your blood will be sticky and thick and that causes poor circulation, which in turn means that your blood pools in the extremities. So, you are certainly not going down the wrong track Tommy as this may well be the reason for your symptoms. A high red blood cell count means you have polycythaemia. This is another case of whether it's primary or secondary. There is a gene that can cause it and they will be testing for this, if the test is positive they will do blood letting which thins the blood. However, high red blood cell count can be due to other things. Mine was high but the gene test was negative and the reason for it was taking iron pills and diuretics. Since these were stopped my red blood cell count is now normal.
Some of us have Fibromyalgia in addition to EM, so that might be something to look at. I wouldn’t be surprised if you had fatigue from the stress of having EM and anxiety about how it might affect your life.
My personal advice would be to shift a bit of attention from researching EM, to adopting a really clean diet(Paleo, for me) and getting a juicer and making fresh, preferably green, juices. It is important to give your body the best care that you can and to focus on what you can do that is positive.
Hi Tommy, As you have a high red blood cell count beware of things with a lot of iron in them. I know Liz said about making fresh juices, preferably green ones. I did have a high red blood cell count, but one of the reasons was I was on iron pills as I said earlier, plus I was on diuretics.
Thanks for your all your replies, I do agree with both of you on the matter. It’s obvious that I do need to find the underlying cause of the high red blood cell count. I must admit I have noticed the past week or two I have progressed back to feeling much more weak and as if I could pass out. I have been battling it till my appointment next week at hematologist. I do agree from the stress of em can cause some of the fatigue but there feeling of lack of oxygen sometimes. Like I can breathe fine just almost like my heart isn’t breathing I’d imagine from the thick blood. I have gained concern about it progressing but I did expirence the symptoms back in January and February also. I will look into trying to find food with low iron intake and healthier eating I must admit I do not follow very good path as far as dieting goes. It will be hard to change that but I’ll do whatever it takes to relief some of the current symptoms. I do wonder what caused my polycethemia as I haven’t been taking any meds such as Iron Sheltielife, do you know if it can happen naturally?
Tommy – anabolic steroids or other synthetic substances that convert to testosterone in the body can also cause polycythemia. I was modestly polycythemic when I first began having symptoms and a schedule of phlebotomies helped greatly reduce, though not eliminate, my symptoms.
Polycethemia can be caused by various things or it could be primary. The test they will probably do is a JAK-2 genetic test, as the cause of primary is due to a genetic mutation of this gene. Mine was negative, therefore it was secondary. You can very easily get yourself into a panic looking it up so I would suggest you don't until you know the results of any further tests. I can tell you I certainly did and it didn't help as the appointment said to go to haematology/oncology. I rang my GP and asked what was this about as at the time I really didn't know what was going on. He said not to worry as it didn't mean I had cancer just because it mentioned the word oncology. He was right, but I am glad I rang him. The other thing I have now as well as stopping the iron and diuretics is to take low dose aspirin on the advice of the haematologist.
I have struggled with terrible fatigue as well. I really think it is from the EM.
One thing that helps me when it feels like I am filled with sludge is to drink a whole lot of sugar free power aid. I don’t know why this helps, but it really helps me.
If you don’t like the odea of sugar free, I recommend being tested first for diabetes before drinking the full sugar stuff.
I wish I could get an appointment with a hematologist, but the ones in my area won’t give me one and don’t seem to care one iota about me. So I am in limbo.
Yes it causes fatigue because there is generally an autoimmune thing going along with it. I had my neurologist start me on Nuvigil (kind of an ADD medication) and it has been a huge help . I can now do like 3 things in a day when before I could do none or 1! If you don’t have ADD (which I don’t) it gives you energy. They give it to Parkinson patients along with many other illnesses. Try it!!!
Robyn
