newly diagnosed and confused

Discussion in 'Fibromyalgia Main Forum' started by sambort, Aug 15, 2008.

  1. sambort

    sambort New Member

    i am a 38yr old male who has been very active all my life. i was in the military and have done martial arts most off my life. a year ago i came down with Bells Palsey, then Bacterimia (MSSA) and then pneumonia. since then, i have been wiped out. it is now a chore just to take out the trash or a shower. i was sleeping 15-20 hrs/day. finally, i met a doctor who believed me about all these symptoms that didnt seem to make sense. i told him that i actually feel like i am dying. he did tests and everything seemed pretty normal save the Epstein Bar count. i was then given the CFS diagnosis. i have read CDC, NIH, etc. info. i am now back on head meds and in counseling as i really dont know how to deal with this. the pain, the severe fatigue, chills/sweats, distended belly, etc. my "perscription" right now is to just stay awake all day and excercise 3-5 mins 2x/day. i have sat in the CFS chat room for a while hoping to talk with alls. anyone who can shed light? it would be much appreciated. the Art of Peace has been my life and, from what i am hearing, that will have to change.
  2. wanderingbluedragon

    wanderingbluedragon New Member

    Get a different doctor. When it comes to CFS you need a doc that will hear you. Not just listen, but hear what you are saying. They are rare but they are out there. So far I have been to several doctors who just look at me like I'm either a head case, a lab speciman, or a drug addict (I find this last one completely hilarious, they won't prescribe me anything for pain).

    I guess what I'm trying to say is that unless your doctor is willing to take your fears or suggestions regarding your own health or body seriously, then I would find a different doctor.

    The changes that you make in your life are entirely up to you. It is a completely personal thing. I have yet to find anything that really makes me feel better, except maybe living in a dryer, warmer climate. The cold makes he hurt in ways no person should have to hurt.

    As for all the other information about Chronic Fatigue Syndrome etc. There is a lot of valuable information on this website. I have no idea how I would live without it.

    It's your body, good bad or indifferent. Don't forget that in the long run.


    [This Message was Edited on 08/16/2008]
  3. ajl338

    ajl338 New Member

    You have done the first part and got a diagnosis, that is something many people take ages to get.

    The common thing next is to get sent to see a councillor because although the world health authority see CFS/ME as a neurological disease many doctors dont and think its all in your head.

    The think i found the hardest was to get me head round the fact that there is no cure and someone cant wave a magic stick and get rid of it. But actually it isnt that bad because things will get better. I'm not convinced that i am actually much better but i do manage the disease much better which allows me to do more and have a better life.

    When i was first ill i spend 9 months in hospital and then for another year i slept 18 hours + a day. Many people including the pstchologist just kept trying to get me out of bed but i think that they actually made the problem worse and it took me longer to feel a bit better. If your body is trying to sleep it is because you need to do so to allow your body to repair itself. Dont fight it.

    Although there is no cure for CFS/ME you can treat a lot of the symptoms to minimise them. I used to get chills/sweats there has been some research and some evidence that EBV affects the hypothalamas,, a part of the brain which controls temperature. I much take my jumper on and off 50 or more times a day because i have really poor temp control. It used to be a lot worse. Severe 'brain fog' used to mean that when i went into a situation that was noisy, busy, confusing or anywhere that had a lot happening my brain went into overdrive and just couldnt process so much info so did weird things like make me hot / cold etc. I did find that withdrawing myself from the situation helped,i would go outside and calm down and then carry on again. But it is a warning sign to yourself that you are pushing yourself too far.

    It is common to also develop food intolerances along with CFS/ME. The most common ones are milk and wheat. I used to have a sore stomach and i changed my diet. Either go to a nutritionist and they will do a food allergy test or do an exclusion test and cut your diet back to basically red meat and veg for 6 weeks and then gradually add other things and if you feel bed unadd them.

    I used to have a prescription like yours and i beat myself up over it for ages as i was trying to please other people doing it, i wasnt doing it because i wanted to. I was told to walk to the post box every day, which was pointless becuase i had nothing to post.

    I decided stayting awake all day was also not useful. Even well people start falling asleep if they have nothing to do. (we have big brother running in the UK at the moment and they keep have to waking people up) I went for the making sure i got up at 8am, sometimes i was back asleep by 8:30 but atleast i was up. Then i went for have waking windows where i had to be awake between 8 - 10am and 12-13:00 (to eat) and then i went for evening because that way i had a bit of a normal life because i could talk to mates when they werent at work.

    Iwent on lots of programmes about balancing sleep / exercise etc but the big break for me was when i stopped trying to please other people and did what i wanted to do which meant i got some enjoyment back in life. You are going to be the best person to sort out what is right to do for your body as you are the expert as you live in your body 24/7.

    Good luck
  4. clerty

    clerty New Member

    Have you been tested for Lyme disease I am going to have a live blood test when I can get some money together often people are misdiagnosed and find out years later that it is this !!! I can honestly say that Colliodol silver has really helped I was on it for 6 weeks and now I am doing a parasite cleanse I will rotate it about.

    I am on the chat room all the time I stay in uk so the time might be different perhaps we could arrange a time !


  5. gws

    gws New Member

    Hi and welcome, sorry to hear of you health problems.
    I was wondering about your militery service, when and where did you serve? I am a veteran of the first gulf war, and have been sick with cfs/fibro/gws/ptsd/ibs/ic and countless other ailments, all of which have been service connected at 100%.
    you will find much info here that i am sure will be helpful. anything veteran benifits related, i can help you with,
    wishing all a pain free day
  6. sambort

    sambort New Member

    i want to say thank you to the responses gotten so far on this posting. i used to be very wary of posting, but the psych said i should look into this. i also want to thank the site and the people i have chatted with. in all honesty, i do feel better just talking with peoples who are in the same state. a lot of good suggestions. it is amazing to wake up and see the support (as well as a nice chat before bed). i will keep reading and exploring the site. prior to sickness, i was a social worker, and hope to be able to advise others somewhere down the line. peace
  7. sambort

    sambort New Member

    i dont know any other way to f/u on your comment, and it would be nice if others had responses as well.

    i get my healthcare from the VA and, at times, i find it somewhat difficult to navigate. you offered assistance and i would like to hear more about that.

  8. findmind

    findmind New Member

    The VA has treated me (they diagnosed CFS and FM), and no one has ever told me to exercise until the latest CDC crap telling them to do that.

    I took 3 symptoms at a time to my dr, and told him I wanted answers, not just meds. My fav dr. told me, we do not have Infections Disease drs here; you should go elsewhere for that. I haven't, but I did get EBV testing (very high titers), and mycoplasma testing thru the Microbiology dept of a major teaching hospital (they detected 3 different ones).

    All one can do at the VA is relate symptoms and get testing to see if they are something other than CFS and/or FM. I have been found to have COPD, Osteoarthritis, degenerative disc disease, beginning osteoporosis, peripheral neuropathy in feet and ankles, and recently Myasthenia Gravis, a neuromuscular condition that causes me many problems.

    I have been tested for Lupus, Lyme(which was probably not tested properly, as in most labs), had MRIs, and cat scans (some minorly positive), and my colon exam in Jan. showed a very serious "flat" polyp that has to be watched closely.

    So, ASK for what you want, insist on it, and they are pretty good at doing it.

    The psych. I see quarterly has been the best dr. I have; she Rx.s my wonderful sleep med in a "dose lower than anyone she's seen" (she says).

    She also has point blank told me that of course you have anxiety; anyone battling what you are is bound to be anxious. She also knows I take very good care of myself and take my needed meds religiously, without abusing them.

    I highly suggest you go to the Dallas Ft. Worth CFIDS website and read Dr. paul Cheney's "The Heart of the Matter" and stop exerising.

    Then you may want to read about Dr. Garth Nicolson's mycoplasma testing and treatment (just google his name). Many Gulf War Vets swear by his treatment.

    Every diagnosis you get adds to a possible 100% disability. Have you applied for it? I got it on my second try, after 4 years interval.

    I hope you find a "path" to help you heal, whether with traditional treatment or some of the suggestions here. Also, we must get over the grief of the past and focus on today, one day at a time, ok? If you are sleepy, then sleep (I think that this has been the #1 most helpful thing I have done).

    Wishing you peace and serenity
  9. gws

    gws New Member

    hi, have you filed for va comp or pension?
    if not you need to contact a state veterans rep.
    you will need your DD214,
    and if you served during desert storm, CFS/Fibro and IBS are service connected at 100%, as well as PTSD.
    you need to be very proactive with the VA system as they would love for us all to fall through the cracks.
    contact the patient advocate at yout VA and they are very helpful insuring any questions or concerns are addressed.
    it took me 2 years to finally be service connected, but it was well worth the wait.
    when and where did you serve? Army, Air Force, Navy, Marines?
    have a great day
  10. monicaz49

    monicaz49 New Member

    lyme is very controversial, even the tests themselves.
    Bells Palsey always rings LYME in my head though. Something to consider at least researching.
  11. Forebearance

    Forebearance Member

    Hi Sam!

    Welcome to the board!

    I wish that when I was first diagnosed I had read one of Dr. Shoemaker's books (Desperation Medicine or Mold Warriors). Of course, they weren't around then.

    If you want to know the latest cutting edge theory about CFS, those books are a great read. I read Mold Warriors and it was incredibly eye-opening for me.

    Hang in there! And sleep as much as you need to.
  12. sambort

    sambort New Member

    first off, thanks alls for the replies, information and welcomes.

    i wanted to share my experience with the VA system... good and bad.

    they have been real good in providing tx when they can. the waits are long and the specialists at times are lacking. i have a great psych and counselor and i am grateful for that.

    during this past year of CFS (even though i didnt know thats what it was) its been a bit of a nightmare. i have been in the ER too many times (mostly due to the PCP being overworked and i thought that i needed immediate medical attention... literally felt like i was dying). at the ER, the nurse checking us in would either fast-track it or blow me off (it was a crapshoot). when i saw the doctors, they basically... over and over... told me that it was stress and anxiety. i spend three stints in the psych ward. the last time i went to the ER, the doctor actually fell asleep on me. when i finally got a doc that stated,"vets are used to Hopping to, if you say you cant get outta bed, i believe you". lots of testing done at that point. he even though that i should be checked again by psych and basically withheld a prescription so i would have to go to the window and they cornered me into seeing the psych director for the hospital. not a problem. i shared with him the symptoms and difficulties with the VA system (including several blow offs from the pt advocate and denial to talk to the medical director). basically, i called the VA out stating,"if these symptoms are caused by my head... admit me". he laughed and said no, there was something wrong. i requested that he document our conversation and get the staff to back off of the "head trip" thing.

    then the diagnosis of CFS. i have talked to three docs since then. two dont believe it and that is frustrating. the one who does, well... getting as much help as i can. i even left a msg to see if she would do the lyme testing (an idea from the msg board here). we shall see.

    i really wish that i had reenrolled in Med B so that i could see other docs. the resources here are very limited. working on it....

    thanks again alls,
  13. hopeliveshere

    hopeliveshere New Member

    Read the science behind the Marshall Protocol. It is saving my life.

    See and

    Take care, hopeliveshere
  14. gws

    gws New Member

    I can so relate to the "VA cluster @#$%". I have been battling them for nearly 17 years, and I too have gotten the "it's all in your head dx".

    I do have sever PTSD, so some of it is in my head, an almost constant battle of memories, flashbacks, smells, hypervigilence, the constant fight or flight mode.

    which increases my anxiety and thus increases my physical symptoms.

    anyhow, I don't reccomend it, but durring an episode of PTSD while in the ER for CFS/FM pain, I drew much attention to myself by telling them I had served my country with Honor, Integrity,and Courage and I damn well deserved an answer for my physical problems.

    an edited version of the real episode, long story short, I did get the answers I was seeking,

    My point is, don't give up, never surrender to the generic dx of "it's all in your head"

    I was at the point that the thought of taking my own life seemed the only option to end the pain I was in.
    some how I found the strength to turn those thoughts around, pick myself up, dust myself off, and find some acceptance that I was not, nor ever would be the person I was before, and that I had to do the best I could with what "they" left me with.

    I fought for our country, and now I fight an everyday battle to get my health back,

    I have also been DX'd with a demylinating disease of white brain matter, and lesions of my spinal cord, which may or may not be MS. how I love to hear that from the neuros at the VA.

    well I have lost my train of thought, you are not alone in your frustrations with VA health care, and come here too, where you will not be alone in your struggles.

    wishing all a pain free day

    [This Message was Edited on 08/19/2008]
  15. jenn_c

    jenn_c New Member

    He was put out on medical, 3 back operations. I am the one with Fibro. But I wanted to tell you that with the VA, You have to PUSH PUSH PUSH!!! Do not take no for an answer. If someone says no ask for their supervisor.

    I live in New Hampshire and have watched my husband be treated with such disrepect from the VA hospital here. I go with him to all of his appts. now because he feels so beat down by the system he gives up. Well not me. They hate seeing me come in with him. I had one VA doctor have the nerve to say to my husband when we were in the ER. " well you can't beat the price, your getting care for free" I about lost my mind. I told the doctor that my husband paid the price. He served 8 years for his country and now has a painful disability because of it.

    It breaks my heart to see our vets not taken care of. I want to Thank Every Vet and military family out there. You have all sacraficed so much for our safety and freedom.

    Thanks for listening-Jenn
  16. sambort

    sambort New Member

    to those with VA issues and advise...

    to add to the last email response. i have pushed it with the VA. i have gone up the chain of command (save the system not letting me in to see the medical director).... over and over and over.

    finally, as i was blown off in the ER a while back, i got upset that they lied to me (it was explained later that it was a "lack of communication"). hmmmm. when i raised my voice (and that is all that i did as anyone would if they were blown off and lied to) they called the fed security. when they came in with the rubber gloves on" i turned on them and told them to back off.

    i have studied the Art of Peace (Aikido) for a while now. as the sentence above states, there is no attack moves. as a matter of fact, if i harm the "other" i do more harm to myself (a whole new meaning now with CFS... sidebar). i told them that they should back off until i "threw a punch" which i would never do.

    after this happened, i was informed that they could refuse me tx and would if i got "violent" again (which is not true). my claim rep discussed it with the hosp. and they rethought thier position.

    i have contacted my senator here in WA as there ARE so many issues with the VA. the VA rep there wants to sit down with me, but i have postponed this due to the fear that i will have NO medical if i piss them off too much. i cannot reenroll in Medicare B until next year and i am finding that there are no doctors for CFS here that will take Med B anyways.

    i have my MSW degree and am pretty used to advocating for clients and navigating beurocratic systems, its just now, i am too weak. hmmmm...

    thanks again for everyones support. i am truly loving the responses and it has become quite the support for me. it is much appreciated.

  17. sambort

    sambort New Member

    thank you alls for the responses. here is what i have done with your information:

    i have been checked for Lyme. not there.

    i have gotten the assistance of an atty to help with the disability claim, pension, legal issues with Countrywide.

    i have met with the senator and congresswoman for our state, they are looking into the VAMC here to smooth some things out.

    all of this is due to responses from the caring people at this site. i was working under the commisioners here several years ago and requested one of thier's help. as he knew me before the CFS, he understood the severity and assisted me in meetings with other politician's offices as well as an atty who will work on contingency.

    now i can focus more on my health and the changes that need to be made to get through a day. thank you alls. i will be starting a website to tell my history. it will be a catharsis thing for me and give me something i can do productively for myself and hopefully others.