Ok--I am Totally Freaking Out---Help!

Discussion in 'Fibromyalgia Main Forum' started by layinglow, Apr 30, 2003.

  1. layinglow

    layinglow New Member

    I wrote awhile back about my 13 yr. old having signs of this disorder--so far they are TMJ, postural orthostatic intolerance (gawd my mind is so goofy, right now, is that right?) Sudden pains that come and go. Chills that break out with no temp. Lack of feeling rested after 12 hrs. of sleep.

    NOW my husband is showing signs of these DDs...what is going on guys? With in the last few months he has been having fatigue, weird pains (arms, hands, feet, legs...you know the drill) Tonite, he has been laying in bed for 2 hours trying to sleep. He has described restless leg syndrome to me to a T.....and says he has it in his arms, too. He keeps telling me his face feels weird too...like there is something touching it. He has just asked for a new blanket on the bed....because the other one was "poking" him, making him uncomfortable.

    What the hell---is going on...how are we going to deal with this, if its true? I cannot work at all....He is totally taking care of everything...household and all. I cannot stand the thought that my family may be being infected by me, and have to suffer these DD's too!

    I am really freaking out you guys. I have only Fibro since May of '02 and CFS since '01.....


    Help
    LL
  2. DonnaSR

    DonnaSR New Member

    Fibro is not contagious. It is classified as a disorder mostly, not a disease. CFS is classified as a syndrome, and is also not contagious. It is possible there is a virus that has been passed around? Or a chemical in the house that could be affecting everyone's health? Like the way carbon monoxide does. I would make sure everyone has a thorough medical work-up done. Keep us posted.

    Take care,
    DonnaSR
  3. AnnetClo

    AnnetClo New Member

    Don't know if you remember me saying but my hubby has been diabetic for many years and is now suffering end stage renal disease. He has hemodialysis 3X a week. He has the same symptoms as you described for your husband and they are due to diabetic neuropathy. He has the fatigue but of course that's because of the dialysis and the drugs and just everything he goes through in general. Just a thought for you.

    Hugs
    Annette
  4. sofy

    sofy New Member

    It could be something like toxic mold or chemicals used by a lawn service. Try to look at everything in your personal enviroment. We dont know what causes us to have these problems and why some are suceptible and others not. Eating yourself up with guilt is not going to help anyone. Save your energy for something productive. If your husband is having to do too much think about how to change your life so he has less to do. Of course they both should have a good md check up. Take a deep breath and try and try and think positive. They need you.
  5. Mikie

    Mikie Moderator

    May only be half true, especially CFIDS. Infectious agents are often the triggers which bring on our illnesses. I still believe there has to be a genetic predisposition, but in an active state, viral and/or bacterial infections may be passed on to family members. These infections often go into a latent state and surface when the person's immune system is overwhelmed.

    Many of the Gulf War Vets' families became sick with the same symptoms of Gulf War Illness. Even their pets got sick.

    We are seeing an increase in variants of viruses, like the SARS outbreaks, and, I believe, an increase of the effects of germ warfare agents like the mycoplasmas.

    Because of the genetic connection, it is not unusual for our children to have these illnesses, but when spouses or partners start having symptoms, I would suspect an infectious agent. It could be a coincidence that one person marries another person, both with genetic predispositions and then an infectious agent surfaces. Infections can also be infections of opportunity.

    Most research is homing in on both the genetic connection AND infectious agents.

    Love, Mikie
  6. Synergy

    Synergy New Member

    We noticed some of the same "contagious" type reaction going around our house. Finally a Doctor suggested it might a nutritionally based problem. So, now that we have changed some food issues and started supplementing we have seen a significant decrease in our families issues. Hope everything turns out as well for you.
  7. kar1953

    kar1953 New Member

    Boy, you've given me answers on many occasions - I sure wish I had one for you & your family. All I can say is you & yours are in my thoughts & prayers. Keep us posted.

    Take care........Kathi
  8. pinkquartz

    pinkquartz New Member

    i really don't believe its possible for you to be infecting your family, because....

    my daughter who is now 26 and still glowing with health, was only 3 when i got ill.

    Also my, sometimes boyfriend, sometimes close friend and carer has been close to me and often staying with me, taking care of me for 20 years and his first illness is the recent stroke.
    i'm telling you these examples because i really believe if it was catching someone close to me would have,caught it, i am very ill.

    it really sounds more like a situation where you are all being affected by some kind of toxic substance, an allergy or mould or....chemicals...do bad things to me and others...

    i know there can be genetic factors where there is a run of the DD in families but this sounds different.

    have you all been exposed to chemicals recently ???
    do you live in an urban or rural environment ??

    i can understand your fears.


    best wishes
    pinkquartz
    [This Message was Edited on 05/01/2003]
  9. layinglow

    layinglow New Member

    Okay--I am breathing--being more rational (I hope) but this has thrown me for a curve. My husband and I talked at great length this morning. He said he has not been open about this, not wanting to add debilitating stress. He has had the fatigue (which I have noticed inspite of his not being forthcoming) for a long time now. He has had the pain for quite sometime, too. It is apparent after last nite that he was having quite a time. I pushed on some of the tender points, and it lit him up. He was unable to sleep until 4 am, he had very bad RLS and it was in his arms too, which I have had and conquered with klonopin. He also had pain in various muscle groups.

    I will fill you in on our environment. We live in a very remote, rural area. The house was built in 1904. (It had no indoor plumbing, we installed it all--no lead) We didn't have phone lines here until 2000 to let you know how remote we are. Carbon monoxides are not a prob, have you ever lived in an almost 100yr. old house--they are not very air tight :) We have talked about mold in the past--and considered this. He suggested this morning a possibility might be to leave for the summer, and see how everyone feels. I am still open to mold as a possibility, we are in a very arid climate (central texas, where 100 degree temps are the norm all summer, with no humidity) You all know how voraciously I research--for sanity reasons I guess...well I have researched every toxin and symptom known to man, when my FMS hit like a ton of bricks.
    There are no chemicals around here cuz I have MCS---probably due to early exposure (I grew up in the hometown of Dow Chemical prior to any water/air regulations and was exposed to dioxins, polyvinylchlorides, and they were even the manufacturers of agent orange!) Thank goodness, My family has grown up here in a very remote pristine, rural environment.

    Nutrition is good---we don't visit fast food places as they are miles and miles away....

    I have made an appt @ my CFS/FM Doc for him--thankfully he will get in very quickly, this Tues. afternoon.
    This morning he was finally "all telling" and let me know exactly what was going on---reiterating that he had been reluctant, not wanting to upset me. I told him, I had seen many of his symptoms....and as a matter of fact reminded him I had tried to talk to him about them, on many occassions. He being, the who he is--the protector and white knight, dismissed me during those times, not wanting to add to my burden.

    Sandy, you are right about my daughter---she rebounds very quickly. I am just so fearful for my husband, as this is progressing.

    I don't know I am wondering about viral...or mycoplasmal....I have had HSV1 since I was 13, and inspite of being so very careful, 3 of my 4 children became infected, and have outbreaks. If 80-90%of the pop. carries HSV6..that really adds to the viral load.

    Also as Mikie mentioned, I too have read the research on Gulf War Veterans---they ARE transmitting their illnesses to their families....the documentation is there.

    CFS became a prob for me in 2000---and FMS hit in 2002
    My husband says Fatigue became a prob in 2001 for him, and now FM symptoms in 2003.

    We do know he has some hypoglaucemic probs..it runs in the family--and we attend to this--but no diabetes.

    I am sorry if I have rambled on here.....I am just so worried about the future, and trying to place the puzzle pieces. What if my husbands symptoms progress? We homeschool the last of our 2 children, take care of both his elderly parents who live here on the ranch, and he is the only one who has been able to work due to my incapacity. He has even taken over all the household chores with the exception of the homeschooling, I am still able to do that as I can schedule for good times, and its sedate.
    I am very frightened! I guess I should take the advice that I have given many times and that is just to live in the today?

    Thank you all for your support and ideas....I would welcome anymore. I will let you know the outcome of his appt. Tuesday. It is an all day drive, so it will be late eve or the following morning. Please keep us in your thoughts and prayers. It is great to know I can come here for support.

    Love,
    LL

    [This Message was Edited on 05/01/2003]
  10. MemoryLane

    MemoryLane Member

    I know this sounds weird, but our husbands have been under a lot of stress worrying about us and doing things to help us, in addition to their own responsibilities. My own husband is showing sings of stress fatigue and is sleeping poorly, having nightmares. As you know, it is very hard being a caretaker for a chronically ill person.

    IMHO, I think it is a form of PTS.

    Just a thought,
    Lane
  11. pinkquartz

    pinkquartz New Member

    i thought that it was the children born after the soldiers came back sick.....and that it was more like damage done to chomosones or something and the DD passed on that way....i'm not arguing , just want to be clear...my own experience is still as it is and i have known others ill for years who do not affect their families....i have been ill a long time...is it in fact a different kind of the DD ?????

    i read your post and there is nothing obvious there, but then not everything is open these days.
    i wish i could make a helpful suggestion...
    sorry
    pinkquartz
  12. layinglow

    layinglow New Member

    The research I have read is that members "already" present in the house are reporting the same symptoms as the spouse/parent that has GWS.
    LL
  13. Mikie

    Mikie Moderator

    With infectious agents, it's often difficult to tell. For instance, it's possible to pass on a Herpes-family virus to someone without their ever knowin they were infected. Years later, the virus can become reactivated and make them sick with the same symptoms as CFIDS. If they do not have a genetic predisposition, they stand a good chance of getting better, but the virus will always lie in wait for their immune systems to allow the virus to reactivate. Do they officially have CFIDS? No, but they can get sick again with CFIDS-like symptoms.

    The mycoplasma infections which are suspected of making so many of us and the Gulf War Vets sick is contageous in its active stage. That is how I got it, most likely from a sick soldier who received contaminated vaccines just prior to the war. I became ill Dec 24., 1990. The war started in 1991 in Jan. Many of the vets' families got infected with the mycoplasmas, not just children born after their return.

    Another aspect that may be muddying the waters is that there are most likely a whole bunch of defective genes which can cause our illnesses. This may be why some of us manifest as FMS while others manifest as CFIDS and why some of us have both. It is possibly why some have ALS, Lupus, and/or MS. It may also explain why some treatments, like the Guai, work for some of us but not all of us.

    Until all these questions, and more, can be answered, all we can do is speculate. We continue to get more and more pieces of the puzzle, but sometimes, the more we learn, the more we realize we don't know about these illnesses.

    The best we can do right now is to treat our symptoms and try to treat any and all chronic infections whether they are the infections which triggered our illnesses or infections of opportunity.

    Love, Mikie
  14. pinkquartz

    pinkquartz New Member

    ok i am not up to date on the gulf war illness info.

    but i still feel myself that it must be more complicated than just a contagion issue because of the facts i have mentioned.

    i don't want to be called quartz... pink is ok........

    i hope you and your family can discover the source of the problem soon....
    best wishes

    pinkquartz
  15. pinkquartz

    pinkquartz New Member

    i have either met or heard of so many people who got ill at the time of the last gulf war.

    its really interesting that there are time clusters.

    for myself, what had been bouts of chronic illness became a severe and constant disabling illness from Dec 1990. and i know of others the same.

    i wonder if it takes the combination of contact with "live" virus on to a stressed body.

    when i studied homeopathy i remember being told that there is no illness that everyone will catch...it also depends on the individual's state of health, mind and genetic disposition.

    pinkquartz
  16. layinglow

    layinglow New Member

    Sorry Pink Quartz..I was feeling lazy today, finally went to bed when hubby fell asleep at 4:30 am. When I got up at 11am, I was so sick, I went back to bed until afternoon. Again, Sorry, didnt mean to offend you, it was just my tiredness. Thank you so much for your input.

    Good points Mikie---I guess we just deal as best we can till we get to the Docs and hopefully will get some answers.

    Thanks Bob---your well wishes mean alot.


    My husband did manage to get about three hours of work in today, before he was tired and had to head home, and we have had a chance to talk somemore...
    We were having that conversation...what comes first, the chicken or the egg...we finally both decided that was as futile as coming up with the cause for cfids/fms now...We will just treat the symptoms, fix any downed systems, and virus infections...whatever needs to be done. We talked more about getting out of this house for the summer and decided to put that discussion on hold...as the thought of moving 22yrs. of accumulations, and all the work of a move was stressing us both. We will just have to wait through the weekend...til Tuesday, and hopefully we will have some answers. That seems such a long time. I still find patience difficult..although I would think it should come easier to me having these DD's.

    Thanks again, the support is so great...I have not mentioned this to anyone...else yet...but you, my friends here.
    LL
  17. layinglow

    layinglow New Member

    Sorry Pink Quartz..I was feeling lazy today, finally went to bed when hubby fell asleep at 4:30 am. When I got up at 11am, I was so sick, I went back to bed until afternoon. Again, Sorry, didnt mean to offend you, it was just my tiredness. Thank you so much for your input.

    Good points Mikie---I guess we just deal as best we can till we get to the Docs and hopefully will get some answers.

    Thanks Bob---your well wishes mean alot.


    My husband did manage to get about three hours of work in today, before he was tired and had to head home, and we have had a chance to talk somemore...
    We were having that conversation...what comes first, the chicken or the egg...we finally both decided that was as futile as coming up with the cause for cfids/fms now...We will just treat the symptoms, fix any downed systems, and virus infections...whatever needs to be done. We talked more about getting out of this house for the summer and decided to put that discussion on hold...as the thought of moving 22yrs. of accumulations, and all the work of a move was stressing us both. We will just have to wait through the weekend...til Tuesday, and hopefully we will have some answers. That seems such a long time. I still find patience difficult..although I would think it should come easier to me having these DD's.

    The last five years I worked before becoming ill...I worked for a Lt. Col. who was a Gulf War Vet. I was aide/companion to her daughter, (quadrapeligic, with Cerebral Palsy). Maybe I should check into Mycloplasma...as well....
    Thanks again, the support is so great...I have not mentioned this to anyone...else yet...but you, my friends here.
    LL

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