20 year old male new here desperate

Discussion in 'Fibromyalgia Main Forum' started by cantpredictme, Aug 19, 2005.

  1. cantpredictme

    cantpredictme New Member

    Hey guys iam only 20 years old and have fatigue for 2 years now along with a bunch of other symptoms such as brain fog short term memory i see millions of little worms squigling around in both eyes depression after images the whole 9 yeards. I had every blood test under the sun done on me including ct scans mri's saw 2 psychiatrists a nutritionist an endocronologist 2 neurologist 2 optamologist 2 gp doctors and all sorts of other test such as neuro transmitters and hormone profile and all came back normal. I amgetting more and more hopeless and have been praying every day to get better. This ruined my life social girlfriend, friends, family, work and college and im only 20 used to be very physically active playing hockey and other sports. Now i sit home feeling depressed because of my physical symptoms which came over night with the visual symptoms im happy to find this board and sorry for the long post but please if any one can be helpful in anyway then god bless you i live in NJ will see any specialist at this point money is not an option because when i get better i will pay it all back to my parents who must have spent well over $10,000 on me in 2 years for medical bills including a sinus surgery please help!!!
  2. ldbgcoleman

    ldbgcoleman New Member

    try searching on FFC or fibro and fatique center. The website is fibroandfatigue.com. I started going in May and I am so much better! They will not give up on you until they find an answer. The closest to you may be Philly. I go to Atlanta. Check my profile to read detasiled posts about treatment! Good Luck and please hold on because there is hope and you can get better! Lynn
  3. Francey54

    Francey54 New Member

    Dear Cantpredictme:

    WELCOME TO OUR FAMILY. YOU WIL GET LOTS OF SUPPORT HERE.

    I am so sorry that you are so ill at such a young age. It is difficult enough for most of us here who have CFS and /or FM and we are mostly in our 40's - 50's and 60's.

    Chronic Fatigue is so hard to cure but please know that there is always hope. Don't ever give up. I would recommend you start taking a good Health Food B Complex Vitamin of 100mcg every morning. Also Pantothenic Acid of about 500mcg. These vitamins are for energy and may be helpful with the fatigue.

    I am here for you so please do not feel that you write too much. You should see some of the posts here they can be very lengthy but we don't mind.

    I will be praying for you to get better and some strength back.

    Let me know how you contnue to feel.

    Tender hugs,

    Francey
  4. tanyasue

    tanyasue New Member

    Hi!

    I have no brilliant words of wisdom, but wanted to say I am sorry. I am 30, and have been sick with various things since I was 24. It is horrible! I have lost so much too.

    Does your state offer any medical programs for those such as yourself? Might be worth looking into.

    I hope you feel some relief for at least a little while.

    TS
  5. brit_17759

    brit_17759 New Member

    and welcome. This is a great place to be...everyone is so nice, sincere and supportive. I have only been using this site for two months, but have found lots of useful advice, tips and info. Its great to be with people who understand what you are going through. For the first time in many years I no longer feel alone, or like I am going crazy.
    take care
    hugs
    brit
  6. JerseySue

    JerseySue New Member

    Welcome to the board. I think the others gave you a good suggestion as far as trying the FFC center.
    I hope that you can find some help through them as you are so young. I live in Jersey too, Bergen county.

    Other than that, read as much as you can and learn. There is alot of great information on this board, and the people here are very helpful and caring.
    Good luck and Gentle Hugs Sue
  7. Shirl

    Shirl New Member

    can't tell you how very sorry I am to hear you are so ill.

    You have received some good advice, hope something here can help you.

    Do start researching yourself, it will make all the difference when you do see your doctors. You will mostly have to educate them with CFS rather than they knowing what is wrong with you, or what to prescribe.

    Will be glad to keep you in my prayers, many blessings going out to you.


    Shalom, Shirl

  8. lillypad2

    lillypad2 New Member

    The FFC Center is the place to go. Just find one near you and make an appt. I drive 4 hrs to go to my dr. All the centers are linked (Fibromyalgia and Fatigue Centers). My first vist was 27 blood draws, gave me certain supplements and treated me for candida. Believe me I had every blood test in the world also, and everything came back normal!! At the FFC they found, low thyroid, candida, low hormones, High EBV virus, mycroplasma and one more forgot the name. I am being treated for these now. Been going 3 months and am feeling better. I was to the point of wanting to stay in bed all the time after work, if I made it to work. I know what you feel and I am sorry you are going through this. One guy there is 15 yrs old, he had everything including Lyme Disease. He is doing very good now.

    I think this is your best bet. They are way ahead of the game. I hope you take some of this advice from the board and get the help you need.

    Good luck and hope you get well!!

    Read the board, you will learn a lot.

    Lillypad2

  9. JLH

    JLH New Member

    Welcome to our board/support group. Sorry you found us under such dire circumstances.

    I am so sorry that you are having so many problems. What worries me the most is your visual problems!!

    Do you live close to a large city? Some of the largest cities in each state have "teaching hospitals". These are the type of hospitals that are recommended to patients who have a complicated problem like you do.

    These are so many interns and residents there that are assigned to study each case, unusual or not. It really helps to have more heads than one working on you!! I don't know if you have ever seen the TV show, "House, MD" or not that is on the FOX channel, but I picture unusual cases at teaching hospitals being worked on like this show.

    My daughter is a physician, and in her last year of residency at a large teaching hospital (not in your state, though). I know from talking with her, that the interns and residents will spend hours and hours researching symptoms, etc. on cases that they do not have an answer for. They do all these hours of research and present their ideas to their attending physician for discussion, some cases are taken to higher levels for "roundtable" discussions. Maybe you could talk this senerio over with your parents.

    You could call one of the closes teaching hospital and find out if they have doctors who specialize in making diagnosis' on difficult cases. If they do, see what you have to do to get an appointment--referal from which one of your local doctors????, etc. Then, if you get an appt., take a copy of ALL of the tests results that you have had done from each doctor that you have been to. (You could even organize them in a multi-tabbed folder like you would in school, in order to help the docs who look at it, to be able to review it more quickly.) In addition to the paper copies of all your test results and reports, you might ask if they need the actual scans and xrays for them to review--this might save you some money on having them re-done.

    I certainly hope that you find someone who can help you get a treatment plan in order so that you may begin to improve.

    All of us will try to help you as much as we can -- just post as often as you need us! And ... please join in on all the other posts going on!

    Take care,
    (((Hugs)))
    Janet
  10. jake123

    jake123 New Member

    I think your ideas are right on the mark. I think you should be darned professional about perfpming the testsaj

    d
    ]
  11. Prunella

    Prunella New Member

    I am glad you found this board. There's lots of good help and support here.

    Since you live in NJ, I hope you have been checked for Lymes disease. Someone called Neem (Neem 85?) has posted a lot on that. You can search for her posts by entering her user name. I hope someone remembers it better than I do. There are several different tests for Lymes. The one routinly given has many false negative results.

    You may have food allergies. MATN has just posted again on how she healed herself with diet. Food additives are really bad. Wheat and gluten seems to bother a lot of us.

    Candida is another big problem. Were you on antibiotics a lot? Probiotics may help you.

    My brother-in- law recently saw thousands of bright "stars" in his eyes. Turns out he had a torn retina. It was a simple proceedure to correct it. I would hope if that was the case the opthamologists would have found it, but who knows.

    Stick around. You will find a lot to learn here. I hope you start to feel better soon. Many of us had to get well by doing our own research. Doctors can only do so much and many of them are not well informed on this illness. Those center sound good with all the tests they do, but I would go slow with all the supplements and meds they recommend. I got much better with dietary changes I made on my own similar to what MATN did.

    I also see a really good chiropractor and that has helped a lot. Ask around and be very careful about who you see. I drive quite a distance to see this one, but it is worth it. He is very gentle and it seems more like accupressure to me. Soemtimes being misalligned can cause wierd sensations and may even be responsilbe for those "worms" you see.

    You will get better. Take it one step at a time and don't get too discouraged. There was no forum like this when I got sick. This will be a big help to you. It has been for me.
  12. vbjess

    vbjess New Member

    Hey there,

    I am also 20... I have been sick with this for about 2 years now. I've seen roughly 14 different md's in the last two years (not including RN's, RN practitioners, medical assistants, etc).

    I have all of the major symptoms, 13/14 tender points, and most of the minor symptoms as well. At one point, I withdrew from school and was sleeping 17 hours per day. Getting up from the couch to eat or bathe was a major production.

    I started taking lots and lots of vitamins. Between the sleep and the vitamins, my body started to recover enough so that I could move around a little bit and work 4 hours/week. I still take 5 different Rx's, and most days I still feel like I've been hit by a truck, but it's much better than it once was. Recovery is possible... and realistically, we may never understand this disease at the rate the research is going. In my opinion, looking for something that's going to help in the short run will benefit you more than looking for a long-term solution.

    Hope this helps,
    Jess
  13. victoria

    victoria New Member

    What you described is very similar to what my now 18 yo son has experienced for several years, including the eye floaters, and neuro symptoms (depression, anxiety) and reacted badly to all psychotropics - it has totally interfered with his life, I know what you mean.

    He came up positive for long term Lyme, happily with no coinfections apparently, and is now being treated.

    Find the best lyme-literate doctor/clinic you can, as there are different ways of treating it. He was given different antibiotics (abx) each month for the first 3 months to see what the response was to each - and there was a difference each month, as there are over 100 different borreliosis strains here; each reacts differently to same abx, one needs the abx that works on the strain you have.

    Go to ilads.org and also igenex.com, you will find a lot of information. Columbia University's site (columbia-lyme.org) also has a lot of info about Lyme. I know there are some excellent doctors in the NE as lyme was originally dx'd up there.

    all the best,
    Victoria
    [This Message was Edited on 08/21/2005]
  14. rileyearl

    rileyearl New Member

    I'm so sorry you have so much piled on you right now. I encourage you, if you haven't already, to talk to your MD about getting on a theraputic dose of antidepressants. If you don't feel the depression cloud lifting within a few weeks, make an appointment with a psychiatrist. They really know how much and what kind to prescribe. I spent several years messing around with a general practice MD before I went to the psychiatrist. She figured it out right away. Take care and stay connected here!

    Francie
  15. tilla

    tilla New Member

    You mentioned you had sinus surgery, so you may have already had a sleep study. If not, have one done. You may have sleep apnea.

    Tilla
  16. cbs1234

    cbs1234 New Member

    Did you take any of these drugs prior to coming down with your symptoms? These drugs are notorious for causing all of the problems you mention--especially the eye floaters.
  17. JLH

    JLH New Member

    Bumping for the poster - cantpredictme - to see!!
  18. Hidn

    Hidn New Member

    I agree with cbs1234, you mention sinus surgery, which generally results (if I'm not mistaken) from repeated sinus infections. Please see if you have taken any antibiotics with 'flox' or 'ox' in their scientific name. e.g. Levaquin is Levafloxacin, Cipro is 'Ciprofloxacin'. There are dozens of these drugs, including Avelox, Floxin, Tequin, etc... These drugs can actually CAUSE fybromyalgia, along with a whole host of other non-abating seriously debilitating effects, which do not necessarily begin during treatment. New side-effects from these medications can begin months or in some cases even years after you stop taking them. I am not kidding. I am going to different message boards looking for people like you who have certain probable fluoroquinolone-induced symtoms (I have spent the better part of year exhaustively researching them) who do not know the cause of their suffering, and am trying to educate them.
    Please search for these drugs on the web if you have ever taken them before, and NEVER take them again, each dose (even years apart) will make you significantly worse.
    My life has been stolen by these drugs, please heed my warnings.Hang in there, remember you are not alone in this nightmare.
    [This Message was Edited on 10/04/2006]
  19. allie42

    allie42 Guest

    Hi Cant:

    I had just one episode where I noticed something similar to what you describe in your vision. It didn't last a terribly long time. Do you have this ALL the time?

    I took myself to my eye surgeon since I have other issues with my eyes. What she told me was that sometimes people with migraines present with these wiggly lines in one or both eyes. I'd never heard of such a thing, but she told my I might have a headache later in the day.

    I'm LOTS older than you are and female, so it might not be the same thing with you, but perhaps that's one possible explanation.
  20. cantpredictme

    cantpredictme New Member

    hey thanx too everyone that had posted back to me with their information and insight on this situation you guys gave me a really warm feeling. Well being that i have these visual symptoms and im very sensitive to light also im rulling out depression as the ilness and making it a symptoms of what ever i have. I did go to Igenex lab and was pretreated for antibiotics for lymes and had a special test done which looks for the actual antigen and the dna of the lyme in the urine and the antibiotic pretreatment is supposed to make the test more sensitive. I am waiting for the results of this test and if i can just put a label on my symptoms it will take a load off of me instantly. Im not giving up being that i was never one to give in to anything that was bothering me and im fighting everyday as all of us with cfs and fibro are. I also scheduled an appointment to an FFC center in Pensylvania being i live in new jersey and its an hour in a half away. Basically im wwaiting for the lyme results to see if this FFC center for me is a go or not i will keep everyone posted thank you so much for the love i got more sympathy on this site from one post than i got in 2 years from all of the professionals i have went to. God Bless you guys and i pray you will all get healed i put up a picture of myself to give u guys a visualization on how sad this disability can be and how normal we look to everybody else.