I believe ive came down with CFS, looking for some confirmation.

Discussion in 'Fibromyalgia Main Forum' started by Trevor1, Aug 13, 2005.

  1. Trevor1

    Trevor1 New Member

    Hello,

    I was wondering if those of you out there could maybe confirm for me if I have CFS, since im sure many of you have been dealing with it for a while. Around a month ago I was feeling healthy as can be, on a trip in california with my buddies. When one day I suddenly felt like I had the flu. It came up out of nowhere and completely took me down. Since then I have gotten every blood test you can name, ive gotten an MRI on my head. And ive done skin tests, you name it. And nothing has helped, this is what has led me to believe I have CFS. My symptoms include:
    -Really bad brain fog, confusion.
    -Extreme fatigue, I am constantly tired and never up for anything.
    -I feel hot, mostly at night...but to the touch of someone else they say I feel cold. Which is confusing.
    -When I wake up from sleeping over 10 hours Im still dead, haven't felt refreshed in over a month.
    -Not as social as I used to be, depressed...and really frustrated.

    This has not been letting up at all, the doctors have no answers for me...I have an appointment setup to see a Neurologist. Should I even be going? Thats the next doctor my main doctor suggested I go see...mainly because of my bad brain fog. What Im asking is do these symptoms relate to what you guys started off with? The fatigue is relentless and I basically feel useless 24/7. Im 18 years old, decent physical condition. Dont see how this could have came up on me. Also when it hit, I started off with a swollen gland in my throat...and ive been reading on here about that sometimes being part of the problem.

    Thanks for any help you guys can give me. Since im heading off to college very soon, I dont want this to be a burden my whole time there.

    Thanks again for any information you guys can help me out with.
    Sincerely,
    Trevor
  2. Smiffy

    Smiffy Member

    hi Trevor; the symptoms you describe sound exactly like CFS, although of course you need medical tests to rule out other conditions. There is no test for CFS.

    What your body & brain need in the early stages of CFS is as much rest as possible. The you need to learn to pace yourself, resting after every small activity & never never overdoing things or you will 'crash'. Research here in the UK has concluded that rest in the early stages, coupled with supportive medical care, can help prevent CFS from worsening into a severe long term illness.

    If you must exercise, try something like very very gentle yoga. The healthiest diet posible is important, & you might want to cut out sugar & refined carbs.

    Is it essential for you to go to college this year; can you defer it until you are well enough to cope? At the moment it sounds as if you will find it a very negative experience.

    The library here is very informative. Best wishes to you for the future.
    [This Message was Edited on 08/14/2005]
  3. alaska3355

    alaska3355 New Member

    before a doctor will call it CFS. My son, who is also 18, has had CFS for 9 months, and we're still dealing with it. There seems to be no quick fix for it. But there are things you can do...the neurologist may suggest a sleep center test, for sleep apnea. Also you may want to be tested for food allergies. Try to reduce your schedule as much as possible at college and take care of yourself. God bless...
  4. Mikie

    Mikie Moderator

    I am pasting my response to another who just joined us. I think it applies to your situation as well.


    You have a lot going for you. You are young and in good physical shape, even though I know it doesn't feel like it. The younger one is and the sooner one gets treatment, the better the chance for recovery.

    The first thing that is important is not to go into denial and work yourself into being bedridden. This is what I did and it takes a long time to recover. Your body needs a lot of rest right now. Only do exercises which do not leave you feeling totally exhausted afterward. Flexing and stretching are good.

    The second thing is to learn all you can about CFIDS. You cam to the right place. We have people here who are researchers and are up on the most cutting-edge treatments. Your research skills you learned in school will help you a lot. We have a library here with tens of thousands of articles and a search feature, including articles by Dr. Cheney, one of the most emminent experts in CFIDS.

    Just curious--did you catch a virus or feel like you had the flu just prior to getting sick? Many of us got infections which seemed to have caused changes to our bodies which didn't stop when the virus or bacteria should have been gone or latent. These pathogens seem to take hold in our bodies and turn into chronic infections. The Herpes Family of Viruses is very common: EBV, CMV, and HHV-6.

    Mycoplasma bacteria can also trigger our illness. If you go to Dr. Garth Nicolson's website, Immed, you can read about his research with mycoplasmas.

    The thing about these pathogens is that once they go chronic, they will use the body's own DNA to hide out from the immune system. They will live inside the body's cells and replicate. It is vital to get rid of them before they can do this. An infectious disease doc may help.

    It is very difficult to detect these pathogens once they are chronic/latent. It can take DNA tests which are expensive to find them. Many docs who specialize in CFIDS are not giving their patients antivirals and having good success with them. In the case of mycoplasma infections, an antibiotic, like Doxycycline, taken at least six months, can be very effective.

    Things which help rebuild the immune system can be very helpful as well. The undenatured whey which Dr. Cheney suggests is one of the best things one can do. Colostrum is another good supplement for the immune system. The store here sells these things. If you go to the Home Page, you can sign up for the e-newsletter and request a catalog, if you want one. Everything sold here is designed for those of us with FMS and/or CFIDS.

    Hope this helps to get you started. It can seem a bit overwhelming at first, but it will all come together. I highly recommend finding a doc with knowledge in CFIDS or looking for one of the new Fibro and Fatigue Clinics near you. The sooner you get some help, the faster you will achieve healing. Don't get discouraged; there is a lot which can be done for CFIDS and you have a lot going for you.

    Love, Mikie
  5. NanceZ

    NanceZ New Member

    I think a great initial step wouldbe to do a bit of research (or havce someone do it) and find a doc who really knows and believes in CFS. I've spent 3 years tweaching my doc about it and that is very tiring.....though he's been wonderful wanting to learn.

    If you even put your city and state requesting us to suggest someone...(such as: Doc suggestions? for city. state area?) ..into one of these posts, we might come up with some suggestions. There are some great docs out there that know and believe in these illnesses.......and aren't willing to just chalk it up to depression or something vague. (Of course we get depressed when we feel like this!!)

    Rest, give in to the need for sleep, eat as healthy as possible .drink tons of water......and do at leasta little bit of exercise everyday.....while you do the research or wait for this to pass .

    Good luck to you
  6. Trevor1

    Trevor1 New Member

    I want to thank you guys for the welcome and all the information you have given me so far. This is a major bummer this coming on right now. Im suppose to be living in a dorm room with my buddy in 3 days now. So im in bad shape when it comes to taking it easy. And to top it off I haven't really been taking it easy since the symptoms started. My job, which my last day was yesterday..consisted of walking around in the heat all day moving cars. I became very tired after work and im sure it didn't help my condition at all. Im going to take your guys advice and start taking vitamins and herbs. Some of the vitamins ive been reasearching include: Vitamin b12, NADH, L-carnitine, magnesium and Vitamin b6. Any of you guys tried any of these? Id also like to know of anything you guys are currently taking to help with the energy issues. I will definately stay in touch, you guys have been a big help...since getting my family to believe I have CFS isn't going really as planned. I dont think they understand exactly what im feeling. Plus its hard to explain what the Brain fog feels like, and the constant feeling of not wanting to do anything. Anyway im heading to Hi Health today to pick up some of the vitamins, ill buy some herbs to that stormsyke listed, and give those a try. Also when when I came down with it, I felt like I had the flu at first...this was a month ago. I came down with strong nauseau the first day, then the brain fog and fatigue came quickly after. About a week after this happened the symptoms were still strong, and I had my wisdom teeth removed. There appeared to be an infection in one of my wisdom teeth so I was taking amoxicilian after they were removed. I dont think the infection had anything to do with it though. Since it came up on me so fast. And since my teeth have been removed my mouth has felt fine. But im still researching.

    I want to thank you guys again for all the information and ill stay in touch and post my progress. And after experiencing this, I really feel for you guys who have had it longer, this is terrible and very depressing. And I hope you guys have good luck in overcoming it. Thanks again
    Sincerely,
    Trevor
  7. sapphire

    sapphire New Member

    Trevor,

    Have you been bitten by a tick or had a rash of any kind? Even if the answer is no, please consider looking into lyme disease. Find the symptoms list and see how many you have.

    I was dx'd with CFS for 15 years only to find out that I actually have lyme disease. I never had a rash that I can remember, not everyone does. I just hate to see someone so young misdx'd with CFS when it could be lyme. Lyme is treatable so please look into this. Go to lymenet and read and learn all you can there.

    You may have had a lyme test done already but the ones most drs do is so unreliable. You need to have a Western blot done by either Igenex or Bowen labs.

    If I can help you in any way, you can find my email address on lymenet. I am Sapphire 101 there. By the way, I am getting better with treatment.

    I'm not saying you have lyme but please consider it.

    Take care,
    Sapphire
  8. CFIDSNicole

    CFIDSNicole New Member

    Since you have only been sick for a month, it is a little early to say that you have CFS. As someone else stated, you need to have symptoms for at least 6 months to get that diagnosis, and you have to have tons of tests to rule out everything else (unfortunately, this can be very very expensive).

    Also, it is possible you just came across a really potent virus and it is taking awhile to get over it. When I was healthy, I had a runin with a horrible virus and it took me out of school for 3.5 weeks, and it took me a couple months to get to feeling human again, but I did recover. So, have hope that this is just a bad bug and you will recover soon.

    Take care,
    Nicole
  9. Trevor1

    Trevor1 New Member

    Thanks for letting me in on the Lyme disease information sapphire. I will work on getting that test done. Because the symptoms are familiar to what I have. When I came down though I was two houses away from the beach, probably not a likely home for a tick, but who knows. So I will definately get the test to rule it out. Ive had many blood tests so im starting to get use to them unfortunately. And I understand why it takes 6 months to diagnose. Hopefully this doesn't last 6 months but we'll see what happens. I purchased a Super B Vitamin complex today, along with B12 and some ginseng. These all help in energy and immune system boosting. So ill see if these help out at all.

    Nicole I hope your right, it would be great if I came across a potent virus and this just went away. The only reason I feel that might not be the case though, is because of all the blood tests. Youd think a virus may show up somewhere in there, but maybe not. Thanks for your comments, ill look into the lyme disease blood test for sure and keep in touch. Thanks again!

    Trevor
  10. Trevor1

    Trevor1 New Member

    Im still waiting to get in for a Lyme test, and im moving in to my Dorm room tommorow at college. Im still feeling dead and the brain fog is still real bad. I wanted to give living in the dorms a shot before I completely called it off, I know im going to be stuck going to parties and spending alot of energy. But Im going to try to sleep alot. Since sleeping is all I ever want to do. Im currently taking B12, A super B complex, Magnesium and Antioxidants. Still no effects from them but have only been taking them for a couple days. Ill let you guys know if they help out at all. Until then ill be messaging from my dorm room and trying to avoid to much activity. Talk to you guys in a bit.
  11. bpmwriter

    bpmwriter New Member


    just wanted to welcome you and let you know if you need a guy to talk to about anything, shout my name and i'll be here. i'm 33, been sick since january 2004, a lot of what you're saying sounds very familiar. like mikie said, if it is CFS, you're in a much better position to fully recover than if you were older at onset. at your age, i've read that about 90% recover completely. so keep your spirits up and please, please, please, don't overdo it (i know all about the trappings of college peer pressure!)

    eddie
  12. Trevor1

    Trevor1 New Member

    Im gonna try not to expel to much energy, however is booze bad news when it comes to recovery?? I know im gonna be partyin here and there and drinking. I dont see how it could be somethin to avoid, however I do plan to take it as easy as I possibly can.
  13. Mother_Margaret

    Mother_Margaret New Member

    What was different on this day?

    This looks like exposure to 2-butoxyethanol

    I suspect it is the cause of CFS or actually, more correctly, CFIDS

    Even if someone new entered onto the scene ... with you and your buddies that day ... because the 2nd hand solvent exposure (getting in your eyes the vapors that someone can expel in their breath - is an exposure too!) Did anyone else get 'the flu?' If not, what did you do differently than they?

    Definitions on CFS etc www.valdezlink.com/cfid_share.htm

    and more about what I'm talking about. I added links to this basic page on what this chemical can do
    www.valdezlink.com/acute.htm

    ... hoping doctors will check more in the blood in immune system. This chemical damages the Central Nervous System, so in my opinion you can skip the neurologist -

    But I would find a doctor to do some of these other checks to find the fatigue. I suspect it is compensating autoimmune hemolytic anemia. That's what this chemical causes. www.valdezlink.com/why_fatigue.htm

    PS

    I would be concerned for the person you are sharing your dorm room with. I learned about this chemical because someone in my family was harmed by it. Right after the 'bioremediation experiment' of the Exxon Valdez oil spill cleanup, 1989 there were 1,000 young men that returned to college, or like you, went to college for the first time.

    Now that I've learned about this chemical & how someone can be affected 2nd hand from someone else, I would surely watch carefully how your dorm room person is doing. Maybe even ask for a private room for health reasons.

    So, sad that EPA has 'delisted' EGBE. The chemical companies successfully lobbied them saying that 2-butoxyethanol does not bioaccumulate & NOW there is not need to put the pesticide EPA registration number on Lysol Tub 'n tile or disclose in anything. No limits on how much of this chemical can be released from manufacturing plants such as in dry cleaning and plastics industries, etc etc[This Message was Edited on 08/17/2005]
  14. Trevor1

    Trevor1 New Member

    Thanks for giving me this extra info Mother ill look into it for sure. When I came down with the flu feeling it started as real bad nausea in the afternoon, I had dranken alot of beers the night before so I thought maybe just a bad hangover. But by the 3rd day it was still strong, so I knew it wasnt a hangover. I cant recall anything different I did that day, and no one else got sick. Im still awaiting a lyme diesase test. And im on my second day in the dorm and I feel incredibly bad. I had to expel alot of walking energy today around campus, and this whole night ive felt like I have a severe flu. Also last night I couldnt sleep to save my life. I was up from 6 am to 10am just looking at the clock rolling side to side. Im going home tommorow to hopefully make a doctors appointment to get my lyme test and rule it out. Im gonna have to get out of the dorm there is no way I can pull this off. Constant partying and staying up...I just can't do it with my condition. And its hard because of all the peer pressure to stay here with my buddies so I dont know what im gonna say...:( But ill look more into your information Margaret and tell that to my doctor. I want to thank you guys for all the help youve been giving me. Its makin it easier to figure this out. The frustration now, is immense. Ive been this way almost two months now and you do get suicidal tendencies. Im holding in there though and plan to beat this anyway I can and still go to school. Ill keep you guys updated. Take care,

    Trevor.
  15. PVFS

    PVFS New Member

    How is you appetite?

    Martin in Glasgow
  16. Mother_Margaret

    Mother_Margaret New Member

    I think that you may have been sitting next to someone that was strongly exposed. In a bar situation, you may have gotten exposed to the chemical I'm concerned about .... second hand

    Did your eyes burn and hurt?

    Please ask your doctor to check the retic count. It might be elevated & a clue early on, that there is autoimmune hemolytic anemia - the fatigue (biomarker of 2-butoxyethanol poisoning)

    http://www.valdezlink.com/check_blood.htm#retic

    Ask if the red blood cells look 'ragged and beat up'

    Personally, I wouldn't be concerned with Lyme disease test. Lots of other things like that and thyroid go on to add the signs of 2-butoxyethanol poisoning. The signs are there, in my opinion, because they are a 2ndary effect of this chemical, too ... so of course, the other signs are noticed.

  17. Trevor1

    Trevor1 New Member

    My appetite isnt as good as it used to be thats for sure, I usually dont like to eat alot because I just dont feel good and its hard to. Also being in the dorms there isnt much to eat all the time, so I haven't been eating that much. Id say I have less of an appetite for the time being. Im home right now, awaiting a call from the doctor. Anyone else have sensitive spots on there head? The right side of my head feels as if its bruised, hurts when I put pressure on it, even really little pressure. And mother im still researching your information ive had many blood tests so Ill try and compare mine to those on the site you listed. Other than that im still feelin like hell, ill get back to you guys with any new updates.
    Take care,
    Trevor
  18. Anita B.

    Anita B. New Member

    Hi, Trevor. It is hard to say after a month whether you have CFS or not. I certainly hope you don't have it. Among your symptoms, you didn't mention muscle pain or arthralgias (aching joints) which often, but not always, accompany CFS. Have you ruled out mono (EBV)? When I was in college, I contracted EBV, and the symptoms were similar to those you described. Because of your age, another illness to be ruled out is meningitis. Additionally, because you came down with this during the summer, besides lyme, which others mentioned, you might look into mosquito-borne illnesses such as West Nile virus and other forms of encephalitis. I realize this a long-shot. EBV seems more likely than the others possibilities I've mentioned. Your doctor can run tests for EBV (IGM and IGG).
    Hope you start feeling better soon.
  19. dantec

    dantec New Member

    Hi trevor,

    It is also important to know, that most people recover from Chronic Fatigue issues within 6 months. Despite the number of people on this website proving otherwise.

    It is true that some take years to recover and some dont recover, the great majority of people that present with Fatigue and other issues do recover and in full. Thats why the medical profession allow for a 6 months buffer before CFS is considered.

    So I suggest that you be positive rest when your body tells you to rest and focus on recovery and you will likely begin to improve.

    Good luck
    dantec
  20. Trevor1

    Trevor1 New Member

    Thank you guys for the information, on monday im getting the following tests run...Lyme, EBV, and west nile. My doctor is also going to run to see if Ive had strep throat recently. Usually when I come down with something its strep throat, ive had strep many times and he thinks maybe it could be a severe strep infection. However my throat seems ok so I doubt that is the case. Ive made the decision to move out of the dorm. With my condition there is no way I can attempt to take it easy and rest. So the way I see it im just killing myself trying to live there. I will move back home and take it easy. Still attending school, this way Ill be able to get more sleep and also eat healthier. I want to thank you guys again for your comments. Ill get back to you guys with my blood test results.
    Take care,
    Trevor