Chronic fatigue and energy level help needed

TuscanySun

Ok, guys, I need help. Some history first. I'm 38 almost 39. I've lost 53 lbs so far. I have Epstein Barr (Chronic Fatigue Syndrome). I take a multi vitamin, a B complex and a lecithin every day.

The EB stays dormant for the most part but flares up when I dont get enough rest or push too hard physically, making me EXTREMELY tired and making liver/spleen swell up and hurt like hell. I get really tired..like, fall asleep at red lights kind of tired. Its difficult to explain and make people understand but exhaustion to the point of nausea just from getting ready for work is not uncommon.

A year and a half ago, I lost 54 lbs and then after 20 years of not having to deal with EB symptoms it came back with a vengence, and as a result, I ended up giving up and gaining the weight back.

Now, I've lost it again and I'm starting to get super tired again. I dont want to fall victim to this again and would like to do try supplements to try and boost my immunity and energy level. I dont eat much red meat but am going to try incorporating that back in once or twice a week to try and help with the iron level.

Does anyone have any thoughts, ideas or resources you can recommend to help me educate myself about supplements and what I should consider??

Thank you!!

rheston

I'm not a physician nor do I purport to have first hand experience with your condition so right off I would talk this over with your family physician to see what the professionals say.

Having said that it appears that you may be losing weight too fast for your body to adequately adjust. Maybe you should slow down the pace for working out until your body starts to catch up with the physiological changes that are taken place with you.

I really would suggest talking this over with a doctor before taking much advice from the internet or those of us here.

jojo52610

I have it - and for years I've lived with it on and off - it's awful - the heathier I stay and the more active I am and dont't get run down I'm fine


when I went through Chemo we added Iron because of the Chemo - but other than that I just try to stay healthy

TuscanySun

Thanks, rheston. I will talk with him, but the problem is I dont have health insurance and cant afford the consult right now.

He's basically told me there isnt anything science can really do...so I feel a little frustrated.

But, the caviat you send is well taken. I wont do anything quack-y.

Thanks and have a great day!

TuscanySun

I have it - and for years I've lived with it on and off - it's awful - the heathier I stay and the more active I am and dont't get run down I'm fine


when I went through Chemo we added Iron because of the Chemo - but other than that I just try to stay healthy

It does stink doesnt it? I hate it with a passion!

Thanks for the reply and have a good day!

TexasTBone

Hi, I'm also 38 and am also tired out very very quickly and have the same pain that you have commented on. I wonder if I have the same thing you have. What I try to do is eat a little every three hours, because I get nausea too if I don't. It's kind of like being pregnant. I'm have to take iron too and eat more protien than most. As a matter of fact, the only diet I ever lost weight on was the adkins. I'm not doing it though, because I love fruits and carbs. I guess I suggest eating a little something more often than not. And, also drink green tea throughout the day. It help increase metabolism, increase energy and helps the immune system.
All the best.

njjswim

I got mono from my daughter last year but have had it before so basically it will always be in my system since they are one in the same. Anyway I know how you feel and lately I am feeling very tired out of the blue and you reminded me that me be my problem too.
Anyway have you ever considered B12 injections? My friend takes them for all her autoimmune problems which give her similar symtoms. You can get an Rx from your primary care provider. You take an injection 1-2 times a week and if you have a pharmacy in your town that mixes Rx's the old fashioned way they can fill that Rx themselves.
There is also an over the counter medicine called Metanex, you can read up on it at the B12.com website and there are books about it...one is "Could it Be B12?"
I take vitimin E and omega-3 fatty acid capsules since they are cheeper but I am looking into getting the injection. Nice thing is B12 is water soluble so the excess is excreted in the kidneys.
I would just drink more water and just try and workout early in the morning before work so when your wall hits your work-out is completed early in the day. Good Luck



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mislowe

Have you ever been tested for a Gluten Allergy?? If you check it out you will see that it causes extreme fatigue, stomach aches, bloating, joint pain and it can destroy many organs including your liver. My sister in law was diagnosed with a gluten allergy and she has changed her way of eating per her physician and it has made all the difference in the world. Look up celiac disease and it will give you a list of symptoms to look for. It is very interesting. My family has just started eating gluten free and I can already tell that the changes has made a difference in how I feel. I bought the book that Elisabeth Hasselbeck wrote "The G Free Diet"

TuscanySun

I got mono from my daughter last year but have had it before so basically it will always be in my system since they are one in the same. Anyway I know how you feel and lately I am feeling very tired out of the blue and you reminded me that me be my problem too.
Anyway have you ever considered B12 injections? My friend takes them for all her autoimmune problems which give her similar symtoms. You can get an Rx from your primary care provider. You take an injection 1-2 times a week and if you have a pharmacy in your town that mixes Rx's the old fashioned way they can fill that Rx themselves.
There is also an over the counter medicine called Metanex, you can read up on it at the B12.com website and there are books about it...one is "Could it Be B12?"
I take vitimin E and omega-3 fatty acid capsules since they are cheeper but I am looking into getting the injection. Nice thing is B12 is water soluble so the excess is excreted in the kidneys.
I would just drink more water and just try and workout early in the morning before work so when your wall hits your work-out is completed early in the day. Good Luck

Thanks for the info....I never thought of injections, but I'll ask the ol' Doc about it as soon as I can get to him!



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TuscanySun

Have you ever been tested for a Gluten Allergy?? If you check it out you will see that it causes extreme fatigue, stomach aches, bloating, joint pain and it can destroy many organs including your liver. My sister in law was diagnosed with a gluten allergy and she has changed her way of eating per her physician and it has made all the difference in the world. Look up celiac disease and it will give you a list of symptoms to look for. It is very interesting. My family has just started eating gluten free and I can already tell that the changes has made a difference in how I feel. I bought the book that Elisabeth Hasselbeck wrote "The G Free Diet"

No I hadnt thought of that but I know friends that do gluten free for celiac disease. Maybe I'll see if she has some materials on it.

I dont honestly think I have that, but educating myself on possible stressors to my liver is very important to me so this is a good idea to look into.

Thank you and have a great day!

chrissyh

I am not a doctor but I worked for an Herbal extract company that had a CFS formula - Gaia Herbs - do a google on the internet...it might help.

TuscanySun

I am not a doctor but I worked for an Herbal extract company that had a CFS formula - Gaia Herbs - do a google on the internet...it might help.

Thanks, I'll look into it.

lotusfromthemud

First, my disclaimer that I completely agree that this is best discussed with a medical professional.

I also have CFS (and some other isms) and my best suggestion to you would be to keep a symptom diary along with your food diary. You may find that certain foods leave you feeling more fatigued or more energized. I use the "notes" section on MFP to sort of record my energy level on a given day, then go back a few weeks and look for patterns.

For me, my big trigger foods are refined flour, sugar and red meat, but everyone is different. I am amazed at the difference what I'm eating makes in my energy levels. (to the point where when I'm eating carefully, it's almost annoying how energetic I am) But, the only way to know if this is a factor for you is to just observe your own patterns.

Best of luck to you.:flowerforyou:

njjswim

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How do you find out if you have that? I noticed when I was deployed that I ate mostly salads, fruit and lean meats and lost a ton of weight and felt awesome. I had energy, worked out all the time, and my cholesterol decreased a bunch. As soon as I went home and started eating all the extra breads and cereals etc I lost that edge. Gained weight and feel tired all the time. Is there a test to tell if you are sensitive or allergic?

lotusfromthemud

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How do you find out if you have that? I noticed when I was deployed that I ate mostly salads, fruit and lean meats and lost a ton of weight and felt awesome. I had energy, worked out all the time, and my cholesterol decreased a bunch. As soon as I went home and started eating all the extra breads and cereals etc I lost that edge. Gained weight and feel tired all the time. Is there a test to tell if you are sensitive or allergic?

There's an antibody test for Celiac now, but to confirm diagnosis requires a biopsy of the upper intestine. I just go by the "If I feel bad when I eat "X" then I'll stop eating "X" " theory.

kirstina_23

gluten allergy is an amazing thing i had it my whole life and never knew it. I was recently really sick and the doc put me on a no meat vegt diet so i was eating pasta bread crackers for 6 months and i was getting sicker and more tired and someone said to take a test and bam cutting it out has made a huge difference but it does take time.

Skinnytime

Wow, such good posts. Yes, talk it over with your doc - see if there is a doc in your area that specializes in EB. I can only say that I was feeling the same awful fatigue - like getting up and brushing teeth was so tiring that I just had to rest a minute ... Then I started taking some vitamins and about 10 grams of good quality Omega-3 a day. I do two tablespoons of organic flax oil and two teaspoons of high quality fish oil spread throughout the day. It's a lot of "fat" calories, but they are good fats. I have also cut down on processed food. I eat mostly fresh veggies, lean meats and the occasional treat, but rarely do bread or pasta.
In the few weeks that I began high doses of omega-3 and the clean eating my energy has improved dramatically. Not to mention my skin and nails look better than ever and I think I'm losing weight - I refuse to get on the scale anymore. My clothes feel better - so I know I'm doing okay.
Kudos to you for working to find an answer, rather than just sacking out on the couch!:flowerforyou:

Nich0le

It is no longer believed that EBS or EBV and CFS are related, although some symptoms are very familiar in both.

Epstein Barr is believed to be closer related to chronic mononucleosis and may be a precursor to lympnode cancers so any change in your health should be looked at. You may want to seek out any free clinics in your area or see if your doctor will offer you a slightly reduced fee for visits since you do not have insurance.

There are a lot of complications of EB or chronic Mononucleosis including an enlarged spleen which can rupture. It would cause sharp pain on the upper left side of your abdomen and if you have such pain you should seek medical attention immediately.

Your liver also suffers, two worries would be hepatitis and jaundice. Less common but still should be looked at by a doctor are anemia, low count of platelets, inflammation of the heart, nervous system problems and swollen tonsils that can obstruct breathing.

I only bring this up because my son has chronic mononucleosis. By the time he was diagnosed his blood tests showed he had been infected for at least 6 months. It has been two years and he still has issues, his biggest complaint is feeling tired all the time. His doctors informed us that the only real treatment for this is rest, rest and more rest and when you feel energetic rest a little bit longer because that is when you will most likely have another "flare up".

On the other hand, CFS will NOT improve with bedrest and may worsen with the slightest mental or physical activity. Once again, there are no real treatments for CFS although it is believed that some anti depressants help to improve sleep and relieve pain.

Existing pain can be treated with nonsteriodal anti inflammatory drugs such as advil, motrin, aleve and aspirin. If you suffer from allergy like symptms it is recommended to take a decongestant or non-drousy antihistamine.

Complications are most likely to be depression, side effects to medicines (like those above), social isolation, missing work and lifestyle restriction.

But, you should find a way to see your doctor. If you have CFS you have some options, if you have EBS/EBV you have to rest and get your spleen checked! :flowerforyou:

Nich0le

Just a side note, a true diagnosis of CFS can not be determined until the following are ruled out as possible causes of fatigue:

Having an active identifiable medical condition such as a thryoid problem or sleep apnea

ruling out all medicines that may have fatigue as a side effect

relapse of a previously treated disease such as cancer

having a past or current diagnosis of a major depressive disorder or psychiatric illness such as schizophrenia or an eating disorder

abuse of alcohol or other substances

being severly obese, defined as haveing a BMI of 45 or greater.

Once these are ruled out your doctor can work with you on CFS specifics.

TuscanySun

First, my disclaimer that I completely agree that this is best discussed with a medical professional.

I also have CFS (and some other isms) and my best suggestion to you would be to keep a symptom diary along with your food diary. You may find that certain foods leave you feeling more fatigued or more energized. I use the "notes" section on MFP to sort of record my energy level on a given day, then go back a few weeks and look for patterns.

For me, my big trigger foods are refined flour, sugar and red meat, but everyone is different. I am amazed at the difference what I'm eating makes in my energy levels. (to the point where when I'm eating carefully, it's almost annoying how energetic I am) But, the only way to know if this is a factor for you is to just observe your own patterns.

Best of luck to you.:flowerforyou:

Thank you....I never thought of using the notes section...must look into that. Its a great idea!

TuscanySun

Wow, such good posts. Yes, talk it over with your doc - see if there is a doc in your area that specializes in EB. I can only say that I was feeling the same awful fatigue - like getting up and brushing teeth was so tiring that I just had to rest a minute ... Then I started taking some vitamins and about 10 grams of good quality Omega-3 a day. I do two tablespoons of organic flax oil and two teaspoons of high quality fish oil spread throughout the day. It's a lot of "fat" calories, but they are good fats. I have also cut down on processed food. I eat mostly fresh veggies, lean meats and the occasional treat, but rarely do bread or pasta.
In the few weeks that I began high doses of omega-3 and the clean eating my energy has improved dramatically. Not to mention my skin and nails look better than ever and I think I'm losing weight - I refuse to get on the scale anymore. My clothes feel better - so I know I'm doing okay.
Kudos to you for working to find an answer, rather than just sacking out on the couch!:flowerforyou:

Thanks for sharing what you do. I'm just now starting to look into supplements/vitamins and there is so much info out there. I've heard Omega 3 and flax seed oil before and those are the 2 I'm really trying to learn about.

have a great day!