mikie....please answer....

Discussion in 'Fibromyalgia Main Forum' started by sumbuni, Aug 31, 2003.

  1. sumbuni

    sumbuni New Member

    Mikie, 08/31/03 11:02 AM

    You make sense in your reply to my post about commonalities...but I do Have a question...you said that you and your family "HAVE HAD" fms...does this statement mean that at least you are in an extended remission?

    If this is true, then the fact that at one time I had all the prime symptoms of fibro...joint pains and tender points,too, but do not seem to have them now..now I have muscle stiffness, muscle pain and the worst fatigue I could ever imagine. Now I can sleep forever and never feel refreshed, get up as tired and worn-out as when I went to bed!


  2. Mikie

    Mikie Moderator

    Unfortunately, I used that wording not because anyone is in remission but because my Mother died last year.

    It sounds as if you are picking up some CFIDS-type symptoms, but there is so much overlap and our symptoms can change over time, that it is hard to say.

    Are you taking anything for quality sleep? If not, it may be time to try something. The ZMA sold here is wonderful for enhancing sleep with or without Rx meds.

    I have had some remission periods and overall am improving, but it is slow going. I feel the FMS part of my illness is under control, but the CFIDS part is much more difficult to deal with. I have to look back and see how sick I was to realize how far I have come in the last two years.

    Love, Mikie
  3. sumbuni

    sumbuni New Member

    Before I had joint pains out of this world. Stiffness and pain in using my hands, or walking. I couldn't even dream of getting on my hands and knees to clean. There were morining when I got out of bed that my whold body would be so stiff that I had to get in a hot shower because even breathing was painful and difficult. I was told it was arthritis, which I know I do have, but today those symptoms have abated, and the CFIDS is killing me instead. I remembe that my mom used to have alot of problems, everyone thought she was a hypochondriac because this month it was one thing (diabetes) and next month it might be something else (like heart trouble). She had all different types of headaches dx'd (cluster, tension, migraine, etc.) Once she told me that she hid out in the hospitals (as a patient) when things got too tough to deal with at home. Today at 80 she still has health problems, but at her age alot of them are really likely, I guess. She is always sick with something...so, the point being, I don't know if maybe she had the same problems I have, or maybe not. I do know that my sisters and my brother have alot of same symptoms that I do. My oldest sister had polycystic ovarian "disease" (as it was called then) my youngest sister (11 yrs younger) has ADHD and at the age of 40 had a complete hysterectomy due to huge tumors (none cancerous, though they had all the signs of being so). My brother was disabled by age 50 due to so many different things actually BEING wrong, (heart, bp, liver, back problems). I don't know if this the natural order of things or if maybe they do suffer from some of the same things I do. I do know that where their blood tests show something wrong, mine invariably come back that I'm as healthy as I could ever hope to be, and no explaination for the problems I am having.

    I was really hoping that you had overcome the fms...maybe you are do just that. The CFIDS is a mean replacement though.

    Thanks so much for answering. It gets depressing when you can't explain the things you go through...it is, and that's the only thing you can say about that!

    God Bless you, Mikie

  4. Mikie

    Mikie Moderator

    God bless you too.

    I really believe my CFIDS came first, but who knows. The FMS is well under control with the Guai, but it takes longer for the ABX and antiviral treatments for the CFIDS. Before the Guai, my hands would hurt so bad that I would cry from trying to do things. My rheumy diagnosed me with osteoarthritis after x-raying my hands. He also said I have it in my knees. The Guai is not supposed to work in the joints, but Dr. St. Amand's nurse told me that her O/A is also better from taking the Guai.

    As I said, it's a long road and sometimes I have to look back to see the improvement as it's happened at such a slow pace. I do think it is possible to get better and I am determined to get back to at least 80 percent of where I was before getting really sick.

    We are all so different and have to find what works for us. This in itself can be a long road, but what is the altrnative but to just sit here and get worse. I wish you well in your healing. It certainly sounds as though there is definitely something going on with your family too. I believe all these conditions are somehow related.

    Love, Mikie
  5. sumbuni

    sumbuni New Member

    It could possibly be that whatever starts the CFIDS or FMS suppresses your immune system to the point that everything else is invasive...Or possibly at some point when the immune system has taken all it can from all the other things, it just saves up a little bit of viruses, etc and that's what makes CFIDS.

    I don't know, just wish someone would find out for sure...and more, find out what will get rid of it all.

    I know a lot of people have a lot of things go wrong, like my brother, and so many of those things have the same symptoms; but I wonder if all the symptoms on the poll are actually JUST CFIDS/FMS, or is it because of of other things too? Like the joint pain. I too have very painful hands, neck, shoulders, and elbows...(actually, if it is a joint anywhere it hurts on some days), but I DO have OA in my neck shoulders elbows hands, feet, knees....and I've SEEN the x-rays that show the spurs on every vertabra in my back!...Arthritis itself causes fatigue, pain....tinitis when it is in the neck...as does thyroid problems. If you have those things, and you know it, then how do you know when the CFIDS begins or ends, if it did at all??

    Maybe I don't make good sense here. The only thing I know for sure is that I don't rest when I sleep no matter if it's 2 hours or 22 hours. I never have the energy that I think I should have...I realize my age would mean some slowing down, but did I have to nearly STOP? I just don'nt know, and I just can't accept that nothing can be done to cure this DD or FMS or AIDs...I think it's a money making deal for Docs. and research and the drug manufacturers if they just don't cure somethings!

    Hope YOU had a great day today, If not...then maybe tomorrow!

    God Bless!!

  6. Mikie

    Mikie Moderator

    Sometimes it is diffucult to discern when our illnesses actually began. That's why I think they are genetic and we are born with the predisposition. I know exactly when my CFIDS was triggered, Dec. 24, 1990. That's when I got sick with the active mycoplasma infection; however, I had symptoms in childhood, but no one knew what it was.

    I do believe we absolutely must address the chronic infections, which as you pointed out, are most likely infections of opportunity. I had just gone through a divorce, moved from my home to a small condo, and was jobless in a recession in Denver when I got sick. Stress most likely lowered my ability to fend off infection.

    I think if we are genetically predisposed, something will trigger illness in us if the conditions are just right, or wrong, actually.

    It's important not to ever give up hope. There is new research going on, but like our illnesses themselves, research into our illnesses doesn't get much press.

    Love, Mikie
  7. sumbuni

    sumbuni New Member

    Glad to hear from you again!
    You make a lot of sense, it sounds like you have done your homework on this topic.

    It doesn't do any good for me to complain, or to give in, or give up. I am alone, and I have to work. The only job that I've been able to find around here that pays ALMOST enough to live on, works you at times up to 60 hours a week. It hurts me like you probably can imagine. I can handle 8 hour days..and once and a while I can do the 9 hr day. Three 10 hour days back to back, and I am so miserable. Everything hurts, and I'm so tired I just wish I could dig a hole and crawl in and sleep for 100 years!!!

    The tireder I get the more prone I am to take what ever virus, bug or whatever. I can't afford to miss any more work. These people are really bad about firing you if you miss too much, no matter what the reason.

    I hope your life turns around, and someday you will feel good, and be so happy you could just fly away!!

    God's Blessings to you, Mikie.


    Sumbuni (too pooped to pop!!!!!!)
  8. Mikie

    Mikie Moderator

    Thanks for your good wishes and I wish the same for you. I am concerned, though, because you sound just like me before I got so bad I just couldn't get out of bed one day. I literally worked myself into the ground.

    Try to imagine what you would do if this were to happen to you and then see if there isn't some kind of life change you can make to not have this stress on yourself.

    I am seriously considering moving to a less expensive place and living in a mobile home instead of my condo here in FL. Being able to live with less stress means the world to me.

    Take care of yourself and try to figure out a way to live which doesn't require so much of you.

    Love, Mikie
  9. sumbuni

    sumbuni New Member

    and moving in with my daughter for a while, at least until spring. I live out in the county, about 12 to 15 miles to town, or to work. Living there isn't much closer to town, but when the power goes off they have water and gas fireplace...I don'nt have either when the power goes off. I'm needing to trade my p/u truck off, it's getting older and drinks only $2.00 per gal gas...the less expensive the gas, the worse it runs and the less mileage i get out of a gal. Right at present my gas bill just running to town and back every day runs me about $40. per week. That would be about 100 toward a car payment, and maybe not so many shop bills.

    I've decided that finding a life style that has less stress also has a lesser income and a higher outgo. More stress, the way I see it.

    Mikie, I've been feeling so tired and so bad for so long, I don't think I can remember EVER not being that way. Nor can I ever remember being able to live any more stress free either. Lots of the bad kind of stress in my life. I have taken those tests that rate the amount of stress you have, and what the likelyhood of your having heart problems, stroke, cancer or other stress related problems, and if I went by the test results I should have been dead 10 times over of all or more of the stress related diseases mentioned....say a score of 75 put you at great risk, well mine would be like 250.

    Actually, I don't even know what to do to get where I can be a little less stressed. I'm open for suggestions...

    Take care and God Bless!


  10. LeLeHpr

    LeLeHpr New Member

    Sounds like you are where I just left off. Scary place to be, isn't it?

    If you can go out and get the book Purpose Driven Life, by the author ______ Warren. Sorry cannot remember his first name. LOL Also, Don't sweat the small stuff. Read a chapter of each along with a chapter from Mathew, MArk, Luke, and John. I started doing this per my Doctor who is a MD/HO. His practice treates the whole person- Body mind and spirit. He made this a requirement in my treatment protocol, I am sharing this because just one night of reading and my burdens are lighter and my attitude more focused on "God's" priorities for my life- Not mine. Easier said than done, but I do believe this can help us all tremendously.

    Be blessed and stay focused,