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Old 05-16-2008, 11:52 PM   #1
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Question Almost Certain I Have Cfs

I was diagnosed with fibromyalgia 4 years ago. This past October of 07 something hit me out of nowhere - like being hit with a truck - and I haven't felt good since.
1. Headaches so bad I couldn't walk.
2. Lymph node pain on both sides of the neck.
3. Fatigue so bad I was in bed for almost 6 weeks straight.
4. Weakness to the point I only took showers when I absolutely had to.
5. Had to quit working and ended up on Welfare.

Fast forward to now, May of 08 :
1. On meds so the headaches are minimal.
2. Stll get the lymph node pain, but, meds keep the edges off.
3. Fatigue is still really bad, REALLY bad, but, I can hold down a full-time job. Outside of that, I can't really do anything.
4. Still have alot of weakness, but, I can shower everyday (lol) now.

I have friends/family who give me advice to :
1. Exercise - yeah right, I can't even get out of bed most days.
2. It's your age (My sister's a year younger and can do twice as much as me).
3. It's your medication (I had it worse BEFORE I was on the medication).
4. There's no lab test to prove CFS/fibro, therefore, it doesn't exist.

Anyway - based on my symptoms - what do ya'll think?

 
Old 05-17-2008, 05:47 AM   #2
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Re: Almost Certain I Have Cfs

Hi Shalyn, sorry to hear that you are feeling like crappola....

I've been there as many of us have. There are a few things you should be tested for. Such as Lyme disease. The testing for Lyme is not accurate. And most doctors don't run the western Blot. The best lab you should be tested through is Igenex Lab. The Western Blot will pull up bands of the strains of Lyme. Don't let any doctor tell you that it is not in your area. Cause it is the second fast growing disease under Aids and some claim it is number one. You talk about the weakness and headaches. Have you posted over on the lyme board and ask for the symptoms. See if you match that.

Also have you had your titers of Epstein Barr and Cytomeglovirus checked? If you haven't learned about these search them on the net. If someone tells you that there is nothing that can be done it is not true either. Antiviral such as Valtrex will help tremendously. It doesn't get rid of the virus but helps in keeping it under control. If you have high titers of these they you can have them in your muscles, can cause heart problems, mental problems and in some cases M.S. And many other disorders....These are in the herpe family and should NOT be taken lightly.

You also might really want to be checked for Mycoplasma Pnumoaniae and Chlamydia Pnumoniae. These also can cause the problems that you are having. these bacterias can be passed just through sneezing so are easily spread. There is a big percentage of the population that have these bacteria. But like everything it just depends on our own bodies and immune system. You should search these also and learn the symptoms and what conditions they cause.

I have learned from my own problems and from reading that bacterias and virus's are almost the same in the way they react in the body. They get in bone, brain, organs, muscles, ect ect...you need to be your own advocate and do lots of reading and find a doctor, which is hard, but can be done to help you through treatment.

There is a lot of research going on at Vanderbilt Clinic about the C.P bacteria and M.P. There is alot of research also going on about how herpe virus's react in our boides.

The family and friends can be very hard on us that are feeling so crappy. I've heard exactly what you have. As many of us have. If people can't see the problem then they think were lazy, or wanting attention. If you can stop talking to them about how you feel. Once you get yourself diagnoised then you will beable to tell them what you have. In my case they will never undertand and after 20 years and doing better it just doesn't do any good to bring it up. Worry about you first.

I hope this helps some. I just want to add that our bodies just DON"T do these kinds of things unless you have some thing like bacterial infection or viral infection going on. There are other things such as protozoas and microbacterium that can cause this also. Let your fingers do teh walking over the net and read up on these things.

With PROPER treatment you will get better....


 
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Old 05-17-2008, 11:07 PM   #3
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David 12321 HB User
Re: Almost Certain I Have Cfs

I started having cfs symptoms in 1979. (they didn't even have a name for it then) They got really bad in 1984. (they still didn't have a name for it although epstein barr had gained attention in the medical community.) Your symptoms are many of the same ones I had and still have in some cases. The lymph node pain is nasty, I know first hand. Some days it hurts horribly just to put on anit-perspirant. I also have Fibromyalgia, it was diagnosed in the early 1990's. After many, many doctors thinking I was using the cfs as an excuse to get pain meds, I finally found a good doctor. Within five minutes he said he was pretty sure I had fibromyalgia. Unfortunately this type of negative attitude towards both of these diseases is still rampant. "I get tired and sore too. Maybe I should say I have these so I can lay around and do nothing" etc. etc. etc. etc. etc. etc. etc. Don't let them get to you although it's easy to say and I struggle with not letting it get to me all the time. I'm not a doctor but your symptoms sound quite similar to cfs. I've had it for 28 years. It never really got better but I've learned to live with it and not let it control my life the way it used to. However, it's a daily struggle. It sounds like you have gotten a bit better. In some cases, people have it and it eases tremendously and in some cases it goes away pretty much completely. In others, it lingers and never goes away. One last thing, research has shown that cfs and fibro often pop up after some sort of trauma. Just something to think about. I wish you the best and hope you get a true diagnosis. I hope your system is run down and you don't have cfs and that you get better. Fibro is a big pill to swallow all on its own. Again, my best to you.

 
Old 05-17-2008, 11:17 PM   #4
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Re: Almost Certain I Have Cfs

I forgot one thing. Exercise! I know it's tough to hear and a lot of times it comes from people who don't understand what you are going through. However, I understand first hand. Exercise is essential. Even if it's a short walk. I have found ways to exercise when I'm stuck on the couch from fatigue. If you don't exercise, it's gonna be worse than it needs to be. This is especially true with the fibromyalgia. If I don't exercise, the pain from the fibro goes through the roof, and that's with taking a very large dose of pain medicine so please make sure you are exercising. It's the best thing you can do for yourself. I fought hearing this; thinking, 'How the heck am I gonna exercise when I can barely get off the couch to go to the bathroom?' I was mad that people were telling me to exercise but they were right. I'm not judging. Maybe you are exercising, if not, it's the best thing you can do for fibro and cfs. Just be careful not to overdo. At first I tried overcompensating for time lost and really pushed. I started doing cardio and weights on the first day. By the end of the first week I was on the couch doing nothing. I eventually eased into it and very slowly increased the intensity of exercise and it helped me more than anything. It helps the pain more than narcotics have ever helped, although I still have to take narcotic pain meds. Sorry this got so long. If I misunderstood anything, please forgive me. I'm new to these forums and still not quite sure how or when to respond but your case sounded so much like mine started. Good luck.

 
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