Suffering from Extreme Fatigue

Hello!

I do not normally post personal health issues on the internet but I need help, I am suffering! I am 22 years old and for the past 10 months I have been suffering from extereme fatigue. This is suppose to be the best time of my life, I just graduated college and I have the whole world at my fingertips, yet this fatigue has taken over my life.

I started getting tired in mid June 2008 but I was in my senior year of college and was really busy with school and work so I tried to ignore it, hoping it would pass. With graduation in August 2008 my health was getting much worse and I could not wait to come back to New York to be with my family and get things sorted out. I would fall asleep in class, nap every chance I get, and call sick into work as much as possible. I finally went to a doctor, in Colorado, where I was going to school and they said I had mono. This is not ture because I had mono in the past and according to 8 out of 10 doctors you cant get mono again. I knew this doctor was wrong and I knew that this fatigue would not pass in 2-3 weeks.

I consider myself a very healthy person, 5'5' 125lbs, work out regularly, and try to eat healthy and nutritious foods. I would never have expected something like fatigue to take over my body.

Anyway, I stuck it out and finished school, just hoping that there was light at the end of the tunnel, or New York. When I arrived home my only goal was to get better. I was in and out of doctors all around the tri-state area and no one could figure out what was wrong with me. Some doctors diagnosed me with depression, lupus, mono, but with treatmeant and time none of thoes seemed logical.

My brother had lupus at a very young age and my mother had thyroid cancer when she was in her 30s. Doctors tested me for all sorts of possible diseases and dificiencies but they could not find anything. I started going to a CFS doctor (Cronic Fatigue Syndrome) and left immediately because I did not want to get caught up in that side of things. Anyone who knows what I am talking about can try to understand that CFS doctors are kind of crazy, and are in it for the money by persuading patients to buy all sorts of treatment packages. CFS scares me because it is unexpleained fatigue with no known cause and no known treatment and I try to avoid beliving or thinking that is what I have.

8 months later, I found a doctor who really understood me. She made me feel good about getting better and put me on medicine to treat my symptoms. I have been with her for several months and although her methods have somewhat helped I am suffering from this unexplianed fatigue.

I am 22 years old and should not be feeling this way. I use to have future dreams and goals, but that is all behind me because all I care about is getting better.

Someone, anyone...please help!

Wed. Mar 18, 11:53pm

I've struggles with energy and clusters of symptoms for years at a time. Please don't assume all CFS doctors are crazy - they're not. Don't be afraid of a diagnosis like fibromyalgia or CFS because if that's what you do have, there are treatment strategies that might help. The worst can be not knowing what you have.

I was unable to work for years because of fibromyalgia and also suffered a lot of fatigue, but only recently I've gotten somewhat better. I attribute my improvement to vitamin D and Omega 3 fish oil, plus devotion to a number of supplements. I still can "flare up" which means if I over exert myself of get injured I'll often be exhausted and sore all over for days. But it seems to be happening less and less.

You might try a naturopath. Doctors often overlook vitamin supplementation or trying strategies like elimnating certain food from your diet for a period of time to see if you improve at all. I think people with chronic diseases often get discouraged and depressed, so it's important to get treatment for that too if it's the case. Other things to check out

I do empathize with your plight, but don't give up on your life! Keep trying different things, even if it seems futile, because one of them might help you. I think I gave up after awhile because I was so sick of trying things but I'm glad I did return to trying new things because I think it's finally paying off.

Please let us know how your doing. I wish you the best.

Thursday, March 19, 2009, 6:22 AM

Believe me, anyone can get mono more than once. The virus that causes mono, Epstein-Barr, is a herpesvirsus, and like herpes or chickenpox it can flare up long after the initial infection.

My understanding is that Epstein-Barr is also involved somehow in CFS, although CFS also has elements of an autoimmune problem. I used to have a roommate with CFS, and although there is not a medical treatment, she was able to bring it under control by doing things that would boost anyone's immune system: eating lots of veggies and fruits, taking vitamins, scheduling at least 8 hrs of sleep a night, and light exercise like walking every day. The things that she avoided were drinking alcohol and staying out late -- I know that's what everyone wants to do in their 20's!

I hope that you find something that works for you.

Thursday, March 19, 2009, 8:23 AM

cfs

Before you dismiss cfs, don't let any crazy 'cfs doctor' discourage you, yes there are some nuts but cfs is a real illenss,...I have CFS, I got it after contracting lyme disease in 2004. that, mono, epstien barr, ANY infection or trauma can trigger it. I was a healthy active person, working toward my nursing degree when it happened. I was bed and 'furniture bound' for a few years, I had a few good days out of a whole month, now 4.5 years later I can go out now and do things, but if I overdo it I crash, and feel the fatigue, the muscle pain and just plain don't feel good. look at www.cfids.org, they work with the CDC to educate people about the REAL aspects of it, if you just google cfs you will get some ridiculous information. WebMD has some good info, but www.cdc.gov (put cfs in the search box) and cfids.org are the most reliable sources. cfids.org has a question and answer quiz to see if you do prob. have it.

I was hoping to recover fully, but my 5 year window is coming to a close. usually if you ARE going to fully recover it will be within the 5 years. I am looking at being stuck with it, but still am greatful for the recovery I HAVE made. I go to an infectious disease specialist who keeps track of me, though there isn't a cure or treatment, the only thing is is lifestyle changes, pacing your energy envelope. I eat better now that I am doing WW, but I can't work out like other people. I do 20 min. easy walks 3 times a week but on top of just being a homemaker/mom that's it or I'll push and crash. Before you dismiss it, please look at the sites I gave you.

Link

Thursday, March 19, 2009, 10:56 AM

Oh, this last info from most previous pp is very disconcerting. I've had CFS/fibromyalgia since the summer of 2002, which is going on 7 years now. If you are right about a 5 year "window", then I'm in it for the long haul. Though it's not really a surprise for me. Most of the docs I've seen since June 2002 have said there's no known cure and no known cause. They said I just had to learn how to cope and suggested I join support groups. The drugs they prescribed had too many unpleasant or even more debilitating side effects, or weren't supposed to mix with drugs I take for other long term ailments.

Friday, March 20, 2009, 12:01 PM

I noticed you said nothing about your sleeping habits (other then sleeping in class and napping)... how is your sleep at night? And have you had your iron levels checked? Is it worse during your time of the month?

I have chronic fatigue, but it is caused by severe anemia induced insomnia. When my doctors finally took a look at my iron stores (mind you this was after my thyroid was tested, 2 sleeping pill prescriptions, 2 sleep studies, a nap study and a narcolepsy diagnosis) I was at an 8!!! To put it in perspective... a 50 is considered "low" a 5 is when they consider blood transfusions.

Friday, March 20, 2009, 11:47 PM

I too had a severe case of anemia when I was 17-18 years old., I am now in my fifties. I had to take a huge horsepill - iron tablet for a few years. It worked. Hopefully, you are eating healthy, you're getting enough protein and vitamins, and sleep. Do you feel you have depression? Because that too will make you fatigue. B-6 helps my daughter feel better if she has some depression it lifts her mood. Good Luck to you and try to think of good positive thoughts. Let us know if you find out anything.

Saturday, March 21, 2009, 1:05 AM

Thank you for all of your comments.

I have been checked for iron, vitamin D,A,C,etc, food allergies, and pretty much anything else you can think of. I recently have been feeling depressed, due to my fatigue. When I came back from my university (5 months ago) I started taking anti-depressants. The medicine seemed to improve my state of mind and some physical symptoms on a minor scale, but I believe that my depression is not causing the fatigue but the depression is a result of my fatigue. I understand it can become a vicious cycle which is why I recently been seeing a psychiatrist who has been trying to help me through this emotionally. She is considering changing my anti-depressant to achieve higher results.

My fatigue is definitely worse during that time of the month and more recently I have been having trouble sleeping at night. My last doctor thought it might be because of the depression, which is why I am in the process of changing anti-depressant medications. A sleep study would not be a bad idea. I will look into it.

I am also on multi-vitamin supplements, fish oil tablets omega 3, vitamin D pills, anti-depressants. My last doctor has been trying to help me by focusing on my symptoms. She gave me Concerta 36mg. Which is used for individuals with ADD, and Cytomel 15mg. Which is a hormone for people with low thyroid levels. I also got a B12 shot to boost my energy and immune system. These drugs have helped and as a result I was able to get a part-time job 4 days a week, but I am still suffering. bleh.

Saturday, March 21, 2009, 5:05 PM

Are you sure you don't have Lyme Disease? I went undiagnosed for five years and finally got treatment. Before that I was told I had CFS. The tests for Lyme disease are not accurate, especially the more commonly used ELISA test. Get the Western Blot test.

Sunday, March 22, 2009, 1:11 AM

I was tested for Lyme disease about 5 months ago, but i do not know what kind of test they used. I will ask my doctor during my next visit. But all of the doctors who looked over my test results concluded that I did not have Lyme disease. It is something to look into though...

Sunday, March 22, 2009, 7:47 PM

Yes, about 20 doctors concluded that i did not have Lyme Disease until the infectious disease specialist told me I did. I tested negative on the ELISA and positive for the Western Blot. There is a lot of controversy about the diagnosis for Lyme Disease -- some odd sort of turf war -- and so the CDC has guidelines for both diagnosis and treatment that many infectious disease specialists disagree with.
In any case, I wish you luck. I am about 75% of the way toward feeling okay again. Keep searching for the cause of the fatigue. My persistence finally payed off.

Sunday, March 22, 2009, 8:24 PM

new PEERtrainer article on this subject:

Link

Friday, September 18, 2009, 5:06 PM

help!

I am 22 years old and am feeling like I am reading my own story. I have been to sooo many doctors but am experiencing the same thing you are/were. Are you still suffering? Has anything helped? Any advice I will take. This has been going on for 6 months now and this is not how a 20 something person should live. Help!

Monday, May 24, 2010, 7:15 PM

My daughter 19 has been the same for 5 years now

What are you doing to survive. She is either sleeping or resting. She had mono many times.... help

Tuesday, July 13, 2010, 1:02 AM

Test for EVERYTHING

Two years ago I came down with an upper resp. infection. I figured it was like any other except that 3 months later it was still there and I was sleeping 16 hours a day, up for four, and back to bed. I also had joint pains, brain fog and a sudden heat intolerance. Prior to this I was a very social and active person. I worked out, had a full time job, traveled Guatemala for 6 months. I can't do any of these things anymore. Your 30's is also too young. Really, at what age would sometihng like this not feel like it was robbing you of your life, so I understand.

After 6 months I was diagnosed with CFIDS (Chronic Fatigue Immune Dysfunction Syndrome) or CFS. The doctors told me to "rest". Very frustrating. I started going to a Naturopath and was on many supplements. Each time I thought I was getting better something would cause a "relapse" or 'flare up".

One way to "test" whether your extreme fatigue is being caused by depression (something many doctors will try to tell you) is if you are depressed and you go to the gym and you start to work out, you will eventually feel better. If you have CFS, Lyme or any other number of chronic illnesses you will get worse. This is what got me every time in the beginning. I would think I was getting better, go to the gym, do a really short workout (10-15 minutes cardio) and after a few visits everything would come back and worse. THAT IS NOT DEPRESSION. Do not lot anyone make you think you are imagining this. It is not in your head.

My ND tested me for a variety of things, she did detailed tests for my white blood cells and told me it looked like I had a bacterial infection but that my body couldn't quite figure out how to fight it off. She also tested what is called CD57, which is a killer cell. My CD57 was 30. A normal is between 65-300 or something. 8 months later in April 2010 she suggested I get tested for Lyme. I was tested from labcorp and all my IGM came out positive and IGG negative.

I went to an Infectious Disease Dr. who insisted I did not have Lyme. He said I would have some IGG positive. He could not explain the positive IGM when I asked. My ND told me I did have Lyme and I needed to go to a Lyme Literate Medical Doctor (LLMD).

The above person is correct who talks about the crazy controversy over Chronic Lyme Disease. What I can tell you is I got retested through IGENEX. The criteria that many labs use is not very sensitive or thorough. IGENEX specializes in tick born illnesses. A lot more came out positive on IGENEX including some of the IGG that came out negative with Labcorp.

This is my longgg way of saying, you should seriously consider testing for lyme and have a "lyme friendly" or LLMD look at your results. You should get tested through IGENEX. IGENEX was covered out of network for me but it was worth the money.

Maybe Lyme is not what you have but it is worth finding out. Keep in mind it is supposed to be a clinical diagnose before anything else. Many people who have been diagnosed with CFIDS/CFS, Lupus, Fibro etc. etc. ended up having Lyme.

The treatment for Chronic Lyme can be overwhelming. It is heavy on long-term antibiotics, but people do get better. I am still in the early stages of treatment so too early to tell.

Here are some links:
www.ilads.org
www.lymedisease.org
www.lymenet.org

Lastly, during the past two years I have made some changes. I don't eat gluten for the most part, barely any sugar, never alcohol. My sleep has been a sever problem in the past so I went to a sleep specialist. He has helped me in ways I can't express, with no drugs. I have also started to go to meditation as I strongly believe my high stress levels weakened my immune system so that the Lyme came out.

I have no memory of a tick or rash. All of us have viruses and bad bacteria in us all the time. Our bodies have a remarkable ability to continually fight these off. When something gets out of balance and our immune system is no longer good at doing its job is when something like CFS can come about.

Oh, and you might want to look into the XMRV virus which has been linked to CFS and LYME recently.

Thursday, December 16, 2010, 9:50 PM

This new PEERtrainer article discusses some adjustments you can make to help you feel less tired. It works!

How To Stop Feeling Tired And Fatigued

-PEERtrainer

Friday, September 2, 2011, 1:27 PM

Many times (perhaps most times) an illness doesn't present exactly the way themedical text books say it will.

Medicine is an extremely broad field. Not all doctors know everything. Keep searching. Sooner or later you will find the help you need.

Have any of your doctors tried a night time dose of amitriptyline? It's a prescription medication. After a small dose, you sleep better at night because it allows the body's own serotonin level to remain up. Serotonin is require for sleep.

Your body requires sleep for normal functioning.

Wednesday, October 5, 2011, 2:12 PM

New PEERtrainer Article:

How To Sleep Better, Naturally

-PEERtrainer

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