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Posted 8/17/2006 8:04 PM (GMT -7)
Hi everyone

about 3 years ago i have the EB virus..which I didnt realise I had, now i am still suffering from it - with post viral fatigue.

Its so horrible, it affects me everyday of my life, and im just totaly over it.

I suffer from fatigue, muscle pain, dizziness, neurological problems, stomache pain, chest pain, tingling...the lot....

If there anyone that has these same symptons? If so what are you doing to aleviate some of them? confused

Thanks

Posted 8/18/2006 11:48 AM (GMT -7)
Its a bit of a general question really as different things work for different people a d we all seem to have somewhat diofferent symptoms.. Diet is something yoiu can control yourself that most people seem to have varying degrees of success with. There must be a million google entries for cfs diet books. After that theres various meds you can take alleviate pain, help you sleep, wake you up, fight viral infections etc.
Posted 8/19/2006 5:45 AM (GMT -7)
Hi Princess_Jez;

I do have a lot of the same sypmtoms. Since my pregnancy began with my twins 11 years ago, I have suffered with a daily chronic fatigue, pain in muscles, joints, especially my neck, head, and jaws. When I get very worn down or sick, I will have a "flare up" which usually consists of: swollen glands, fever, extremely pinful mouth sores, and a sinus infection. I have been treated with an antivrul and antibiotic during a flare up and it seemed to help the lesions clear up faster. However, I was just diagnosed with EBV, because my levels were finally elevated enough to show on the standard blood work. I don't really know what treatment options there are yet, that is why i joined the forum. I am hoping that someone who has tried a diet, routine, medication, etc. and had some success could enlighten me as well. I have been making an effort to delegate more of my ususal chores, get to bed on time, and am trying yoga. I'll let you know if it helps.

-shorttab

Posted 8/21/2006 8:48 PM (GMT -7)
Thanks so much for those replies..I will speak to my Doctor about Lyme disease and see what he thinks!

I really want to get over it and just want to feel 'normal' again, Ive forgotten what that feels like.

Im getting married in 7 months and hope to god that day is one of my half good days!
Posted 8/21/2006 9:40 PM (GMT -7)
hi there...they do not know what is wrong with me but i have ur symptoms and i am not in the best shape and far from the way i used to be even though i have been worse then i am currentyl but i know some things that i do help and they may help u as well...the first thing is diet like everyone keeps saying...it really does help...i cut back on sugar and meat(make sure u get enough protein if u do that) and caffiene...i got most of my guidelines from a book about illnesses and diet..not sure of the name but then i adapted it to fit me and what helped me the best without going without anything i needed or liked....but i take a generic med for my fatigue..they have a kind called provgil that works good and does not have anphetamines in it so its safer i used to use it but had to switch to what my insurance would pay for...but it helps my fatigue alot..i still have to take a few short naps in the day but its better than it was...hope this helps a little...also a good daily vitamin helps..but n e ways..i know its not that much info but it helps me a little and when ur exhausted constantly a little is alot so hope this is helpful.. smurf

lmb

Posted 8/21/2006 9:44 PM (GMT -7)
also i forgot to say one of the most inportant things that works good for me...i eat alot of fresh foods...its the best part of the diet to keep what little eneergy u got going through the day...hope i helped u a little..
lmb
Posted 8/21/2006 10:35 PM (GMT -7)
i also wanted to mention thati seem to have become more in touch with my body scince ive been sick..i dont know about the rest of u but it seems like it to me...but the point is...listen to ur body become attuned to it..it will tell u what it needs...i notice that i will crave food that i need...like i crave milk and cheese alot b/c i need extra calcium and vitiamin d but i can tell i really need it b/c ill crave it alot so also give the advice to listen to ur body if u crave it u probably need something that it has in it so just pay attention to ur body and what it tells u need...i know it always says i need sleep...im so tired b/c mine does too but ive noticed that with the meds im on...the ones i mentioned earlier i can take a few short naps during the day even if u dont sleep lay down for 30 mins at a time and give ur body time to build back up its small energy supply...but i hope all this helps u..sorry i did it in serveral replys but im so forgetful
lmb
Posted 8/22/2006 6:45 PM (GMT -7)
Thanks for your help IMB...The only thing I cant really work on is the sleep! As I work full time and there is no where to rest for 30 mins, unforunatley!!!

As you IMB I have been worse previously, I actually had 8 months off work bc I couldnt get out of bed!
I slowly got back into work, but as I have said previously, everyday is a constant struggle!

But thank you for your other tips!!! I shall look at my diet and hopefully I will improve!
Posted 8/22/2006 7:23 PM (GMT -7)
Princess jezz- I seem to have similar symptoms as you.  All of my doctors have said that they are not sure if I have CFS, but everything else is ruled out so far.  I have such severe dizziness and weakness, horrible sensations, headaches, fatigue, sore throats.  I didn't drive for six months.  Some of my symptoms, are hard to describe.  It just feels like I am living in hell everyday.  It has been 11 months.  I have somewhat gone back to work, but I still get this feeling that something is really sick in my body.  The doctors say that is not really consistent with CFS,  I am now testing for parasites and other crazy things- even thinking about mayo clinic. I just really feel we are missing something.  I also developed  a terrible anxiety disorder as a symptom- it is awful.  My chest sometimes hurts too, and it cracks and pops- weird. I am also sore in my back. It has been so terrible- I hope you get better- check into Lyme- I have had about 6 negative lyme tests- so I guess I should give up on that theory, Good Luck!

Posted 8/23/2006 3:43 AM (GMT -7)
jez, i was diagnosed mono heres my symptoms which i think still may be lyme

low lymphocyte count 15.9%
high eosonophil count
swollen neck gland that comes and goes
tingling in arms legs fingers and toes
poor memory and concentration
pain and weakness in legs and arms
sore throats that come and go
pressure in back of head
sore ribs that come and go
sensitve to light
fatigued alot
depressed have no energy to do nothing


i think the ebv or something hit alot of people this year hopefully we all get better soon i been feeling like this since like febuary
Posted 8/23/2006 6:55 PM (GMT -7)
Well Im glad that Im not the only person around who feeels like this!

I have also developed a terrible anxiety problem, which sometimes stops me from doing normal everyday things, like going to work, driving and so on.

when I was really sick for the first 8 months I was also constantly very dizzy, even going to dinner and sitting down My eyes would be all blurry and would feel I was about to pass out.

Even when I do a bit of excerise or walk around the city at lunch I come back and feel soo bad and when im actually walking feel like my body is going to colapse under me!

Like all of you I have a sore stiff neck and occaisionally it feels like someone is holding hteir hands around my throt/neck - its such an uncomfortable feeling!


thanks everyone for your help, it does make me feel better knowing there are others out there like me and im not just making it up in my mind!!!

I hope you all get better too..nothing worse than fdeeling like this and not really knowing whats going on - just makes things even worse!!!!! :(
Posted 8/24/2006 6:32 AM (GMT -7)
you should talk to ur doctor about provigil or another type of medicince for sleep disorders.....i am taking one and it helps a little
lmb
Posted 8/24/2006 9:53 AM (GMT -7)
Princess, just to let you know that anxiety is very very common for people who have CFS. I'm not exactly sure why, but it seems like a lot of people with CFS also have anxiety. Diagnosis:  UCTD (probably lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985 Meds:  Plaquenil 400mg; Prednisone; Tramadol 100mg 3-4x daily; Amitriptyline 10mg; Neurontin 300mg; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain;   Clickable:   LUPUS INFORMATION & LUPUS RESOURCES . Please allow HealingWell to continue helping others by donating: https://www.healingwell.com/donate/
Posted 8/24/2006 5:26 PM (GMT -7)
Well actually, I seem to sleep pretty good...I get atleast 8 hours everynight - I could sleep more if I could too :)
Posted 8/25/2006 6:36 PM (GMT -7)

i know what u mean jezz....i have had a hard time getting my work done even doing all the things i suggested and taking meds sometimes i think chronic fatigues just gets so bad theres not much u can do but try to deal b/c even with all that i am so tires about out to kill over but hopefully i think it will pass and become easier to deal with or at least i hope so...hopefully for all of us

lmb

Posted 9/4/2006 5:17 PM (GMT -7)
Princess Jezz- It seems like you and I have a lot of the same symptoms.  The only difference is I never had EBV and they never found any viruses in my blood.  Actually in the beginning there was a trace of cocksackie virus and parvovirus but then 3 weeks later the virus was gone and they thought it was a false positive the first time.   I have been extremely ill, especially for the first 8 months, I am now at month 11.  I can't even describe some of the symptoms.  I just could and still can feel a horrific sickness in my body.  My muscles ache I have sore throats, and I have bad anxiety, and the irritability is terrible.  I feel so far away from who I used to be.  My docs feel I am now in depression, but I am already on antidepressants.  They want to switch my meds- all they do is make me more tired.  This is crazy.  My doctor told me the longest he ever saw CFS last was 3 years.  He said it totally goes away. I really hope he is right because I don't know how much longer I can cope with this.  I don't want to go on vacations or do any of the fun things I used to do. I used to love to work out, and I haven't been able to for the last 11 months because it makes me feel so much worse.   Has your illness been very mental as well as physical?

Posted 9/6/2006 10:51 AM (GMT -7)
I have the EXACT same symptoms. The two that seem to be the absolute worse are constantly being too tired to move and the constant pain in my neck. I am praying for an answer right now. All of this is stressing me out because I am in the middle of trying to lose weight (lost 25 lbs since February) but I have 50 more to go and I can't even get to the gym. I am really down on myself because I feel like I'm being lazy or other people will look at is though I am lazy but I'm just so tired. I work at a desk all day and I'm too tired to type sometimes, you'd think I would be doing manual/phsyical labor as tired and achy as I feel. I just can't stand hearing my doctor say there is nothing I can do about it and it will go away in time. Any advice?
Posted 9/6/2006 10:52 AM (GMT -7)
Oh by the way, I have EBV, just found out two/three weeks ago.
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