Begging not asking for your wisdom please

Discussion in 'Fibromyalgia Main Forum' started by Takesha, May 8, 2003.

  1. Takesha

    Takesha New Member

    Hi all, I need some imput...My SO Michael was diagnosed with CFS quite some time ago when he was in the Air Force.
    The symptoms surfaced after a bout with mono over in Europe.
    After a lot of tests with no results they just told him that is what he had and that was it. He has allergies, asthma,and (they treat, that in fact he has that as a diability), migraines and they gave him imitrex injections and he has hypoglycemia. We have been together two years and I've seen him have to walk with two canes on his worst days. He often has a low grade fever (or at least he's hot to the touch) takes multiple naps a day when he's home, very seldom is able to work more than 32 hours a week.
    The problem is they never address the CFS as a whole, it's buried and forgotton. He didn't even know what it was until I researched it for him, all he knew is that it made him tired! Now that he is retired, he goes to the VA for treatment and they aren't very good about things. He's had a testicle lump for 3 months now and the doctor had an ultrasound done and he hasn't heard anything...you'd think they would at least call, but he's going to call them tomorrow. Anyway, I am basicly starting from scratch here in trying to get the VA to address his issues, He doesn't want to go through all the tests again. So,does anyone have any suggestions on how to get there morons to address his CFS. I need some type of intelligent way of presenting this so that they won't blow it off...any ideas...AND for those of you who have had CFS for more than 7or8 years, what meds and diet etc should we be working on. They don't even give him meds for sleep.He hasn't slept all night in two years! Any help would be appreciated. Two years ago when I met him, he was just living unil he died,there was some depression but he is pretty positive person so we have worked on that and he's doing good in that area...but there is a lot more to be done. HELP! It's a good time for any guys to speak up and add their "two cents" also.
    Thank you
    Rachele
  2. SueQ

    SueQ New Member

    Dear Takesha,
    You can do one of two things at the VA from my exprerience (with my father-in law) 1. RUN Very Fast in the oppisite
    direction . 2. Plan to be VERY, VERY in their face pitching
    hissyfits to be noticed ,muchless paid attention to.I'm sorry that the men and women that have protected me and mind are treated so shabbily. I don't understand a country that throws away their heros and elderly. It's MY COUNTRY and I am always ashamed when I see our own people being so mistreated.
    I wish I had words of wisdom for you but I'm just trying to get through the pain just like your SO. I've just about run the gauntlet, after 13 years and 35 doctors,I'm still in pain so bad I can barely take care of my personal needs. For everything else I depend on my husband(Guardian Angel) ,he works a full time job,cooks, takes care of the house( no windows please) and also takes care of the yard and pool. I've found no magic pill ,or exercise, or chant that will take the pain away,and believe me I've tried quite a few. I yell a lot ,I tell people that I'm being attacked by small very ugly Trolls,and pray continusly. I've found that yelling at the Trolls dosen't really help with the pain ,it just gives me an outlet for the frustration. I've recently discovered a web sight that might be useful to you. Try www.chet@chetday.com he at least is offering alternatives. I've downloaded a few to try,althoughI haven't gotten started yet.We've had severe thunderstorms here in NE Ga for the past week and I am almost at the end of my rope. I hope you find something that works ,my prayers are with you and you SO.
    May God Keep You Painfree
    Susan
  3. layinglow

    layinglow New Member

    You will probably come away from my reply feeling as if I am too blunt, but thats okay.

    In regards to the mass----it's time for some up in the face--phone calls, marching into the patient representative office whatever is necessary--to get the results on the ultrasound. I had a similar prob. on tests for a mass on kidney. Make this your number one priority--get this accomplished!

    After you have dealt with that---then is the time to find a doctor who SPECIALIZES in CFS treatment. Get away from the VA---A D.O, specializing in CFS can treat Michael for his asthma, and all of his other ailments....just as effectively, but with an eye on the whole person, and how these other ailments relate to CFS--a much broader picture.
    It will be difficult, and time consuming, but that is the very thing that turned me around. I went from completely bedridden, dealing with docs who were either disbelieving, or clueless as how to treat me.

    I spend my own out of pocket money to see a CFS/FMS Specialists...after all, what is your life, and your quality of life worth? If you can't work or have to work reduced hours...you are actually losing income.

    A CFS/FMS Specialist, (I see a D.O., a days drive away) keeps atop the latest research, is aware that with these disorders we must have individual treatment plans and that they must be experiment with and modified. They have a large enough client base with these disorders to know the treatments, and remedies, and the downed systems to work on.

    The reason I see a D.O. is because there are some prescription meds, I must have with these disorders.
    I also have responded well to supplements, vitamins, and herbs. D.O.'s are very competent in these areas, dealing with integrated medicine. You will discuss lifestyle, nutrition, and find them desiring pro-active patients. They will examine you and treat you as a WHOLE. This is what I found missing with all the previous Docs...no one was putting any of the puzzle pieces together and getting nowhere. Funny thing is--my Good Doc charges 60.00 for a half hour, $80.00 for 45 mins. while all the other "ologist" I was seeing at a large and reknowned clinic (getting nowhere) were charging on an average of $120.00 for a 5-10 min. appt, offering me no treatment, or belief in these disorders.
    I have never left and appointment with my Good Doc...not having all my questions answered, fully.
    I feel as if my Doc works his tail off to treat me, is genuinely concerned, compassionate, and my best advocate.
    This is what Michael needs.

    Sleep and Pain are usually addressed first, then we have worked down the list of symptoms, eradicating or easing each. I no longer have Systemic Candiasis (yeast all over bod), IBS, unbearable pain, restless leg syndrome, sensory overload, anxiety, depression---the list goes on...
    Why? I am receiving good treatment---by someone knowledgeable, and concerned.

    I spent far too much time, as you say getting morons to believe, prioritize, or even treat CFS and FMS.
    It is a waste of time, money, and precious energy that we with CFS need to apply elsewhere.

    Make a list of CFS Docs from the Good Doctor list here, do internet searches with the words "Chronic Fatigue Specialist *your state*" . Start making phone calls to the good candidates, and interview their receptionist, or ask if you could speak with the doctor via, phone, fax, or email. Weed them out. Do not be afraid of driving some distance to see a good Doc---I do, it's a days drive---but it's worth it.

    A side note---self medicating with rx'es, herbs, and supps is not always safe. It is very hard to find information on contraindications of mixing rx'es and herbs....unless you are willing to do extensive research, leave this to a doc who has already researched this---and discovered through his patients what some of the adverse effects can be.

    Get the mass taken care of, this much time should not have occurred between US and reporting. Raise hell.
    Leave the VA behind if you have too----and see another doc, who can then get US in patient files from VA.

    Best wishes,
    LL
    [This Message was Edited on 05/08/2003]
    [This Message was Edited on 05/08/2003]