Fibromyaglia

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  • Hi All,
    Yes!!, this is a wonderful site with wonderful people so understanding and willing to share their experiences with different ways to make a day more like living. I've thought about all of the times I wished I could have someone to talk with besides spending a fortune on a shrink to tell me it's in my head. I know the difference between my head and arms, legs, neck etc. I may be blonde but I am not a ditz!!! Thank you for always being at the click of a button for me too.
    God Bless
    Babs
  • FIBROMYALGIA


    HELLO EVERYONE!

    My sister, another fibromyalgia victim, has just put me on to another FMS website. I have not read it yet but it looks very
    imformative from my first viewing.

    Thought I would share it with all of you right away.

    It is www.drlowe.com.

    Let's hear what you think of it.




    SHIRALYN
  • ladyinmaille


    Linda - so we really do have a lot in common, I thought we might.
    funny you mentioned disability it is the "d" word( I don't say) I'm also too stubborn and proud for my own good. I am at a point where I am considering it for the 1st time after 12 years. Really thinking about hiring a lawyer and filling. In the last 8 mo I've done a little freelance design on computer and by hand some jewelry illustration professionally, but my hands repeatedly cramp up.. but haven't had a steady paycheck in 1 yr. Nov. 1st.. I can no longer do fine work silversmithing,goldsmithing,or beadwork. since 1996. Now illustration by hand is difficult and I made my living as an illustrator and graphic designer for over 21 yrs. With factory work or work at printing plants thrown in when the designing wasn't full time. Switched to retail sales of jewelry about 3 yrs. ago but can't spend 6-10 hrs. on my feet anymore with only 1- 30 min.break. I've applied various retail jewelers and even clerical desk jobs places but I think my medical history is starting to catch up with me record wise. So I'm considering applying and should have considered it 6 or 7 yrs. ago. I'm confused about something what if you think you are only 60% disabled not totally, do they pro-rate the amount? I can accept saying to my self "Yes the strength, dexterity,and fine motor coordination is down 60-70% in my hands.and 40-50% in my legs."but I have a problem with the "d" word. My husband has a serious heart condition and if he was 'gone' I had better consider it for my kids sake. I can't support them anymore. I've got 3 diagnosed autoimmune conditions including fibro. and after the diagnosis of Sjorgrens last Feb. It may be time to throw in the towel so to speak. I think I have a chance with the RA and the Sjorgrens - I'm not sure with just the fibro there seems to be still alot of difficulty collecting SSI. I know it would take at least 2 to 5 yrs. to collect. What is the verdict in what to expect has anyone had a similar diagnosis and experience in MO?

    Leslie

    Hey everyone! I forgot to post my favorite saying about housework and why to do only what you can when you can.
    My mom for years had this in calligraphy in her kitchen
    "Dull Women have Immaculate Homes"

    I have to start dinner and switch the laundry. I'll post next after vacation get back to you in about a week.

  • Hi Leslie9220,
    Have a wonderful and safe vacation.
    Babs
  • Fibromyalgia, etc...
    Hello again, everyone!!

    I am just beginning to feel a bit better, and have something very important to share with you.

    I had recently been diagnosed with (besides fibro and about 3 other things!) Epstein-Barr Virus, so thought I was just feeling lousy because of that. Well, I have always been a proponent of using as much natural therapies as possible to treat illnesses, and thought I'd give Echinacea a try. This is an herbal supplement that boosts the immune system. I figured, well, my immune system could sure use a major boosting, just like everyone's could that have autoimmune diseases! So I ordered some quality Echinacea (from Puritans Pride -- they are great!) and began taking it once a day as directed. A few days after taking it I had my first flare-up: much more tired; increased pain everywhere; more confusion and "fibrofog"; decreased coordination; dizziness and extreme weakness. I felt so lousy that I just took the absolute bare minimum in foods and medications because my stomach was queasy along with this. A few days later I felt better and began my supplement routine, and of course the Echinacea. Well, three days later I was feeling as bad as I did before. I just happened to be reading a Reader's Digest from sometime either late last year or early this year and was in the "Health" section. There was a blurb on Echinacea, and there have been recent studies done on this herb, and the findings are that "people with autoimmune diseases such as fibromyalgia and rheumatoid arthritis should not take this supplement." Well, this made perfect sense so I immediately discontinued using it again. It is now 5 days later and I began feeling better yesterday.

    People, please DO NOT take Echinacea!! It's too bad that something that sounds good would do us harm, but sometimes things are that way. There are many fine supplements that can be taken to help us get the nutrients we need. This also taught me to be much more selective and careful in doing my homework before just buying and taking a supplement because it sounded good!

    I just wanted to make sure everyone knows about this. Please do not think that Echinacea is a bad herb -- I personally have good friends that are using it and it really does help, especially when coming down with a cold or flu. But those people do not have the health issues I have and so they do not have any problem with it.

    I hope this helps someone from making the same mistake I did, and also that some of us (hopefully all!) are feeling a bit better with the arrival of warm weather.

    It is late and I need to get my rest (such as it is...!). You all are in my prayers, and thanks so much for the great discussions and info we are exchanging here. It is really helpful and right now is a lifesaver for me personally!

    Blessings!!

  • Carie A
    Thank you ever so much for your warning about the herb that you had a bad reaction to. I'm so sorry you had such a bad time of it. I hope by now you are feeling better and will have no long term problems with it.

    Leslie: I love your mom's quote about housework. I'm still chuckling over that one. Hope you have a restful vacation, if there is such a thing.

    Shiralyn: Thanks for the website. I'll check it out.
  • I was just wondering if it was me or that our loved ones think that we are really okay physically and that it is all in our mental minds. Seems that I want to do lots of things in the house as I used to do. But seems I can only stand up so long and stay mobile. Sometimes I want to scream out loud. At some of the things that I can no longer do; or just unable to do. I became disabled but not by choice. I can no longer sit long, walk far, and do my regular housework as I used to do. I do not care if the dishes are done, when I know they should be. Trying to walk places without having to sit between the stores. I get so :mad: and upset. Because my family members maybe thinking I am makin all this up. I am not. :mad: Now if I can find a doctor to listen to me the insurance companies will not cover all that I need done for me. Because this Fibro Myaglia is just not a disease or is just manifested by those who want attention. Good, bad, or indifferent; I am human, have hurts, pain and agony constantly. I can scream, but it will fall on deaf ears. So tired, so very tired of fighting a battle that is completely lost before I try to find out what is really and truly wrong with me. If it wasn't for my sense of humor I do not know what I would do. Also for my trust in God and my Lord and Savoir I wouldn't know what to do next. I also thank each and everyone of you for your stength in my time of weakness, your smiles when I am sad. Your encouragement when I feel there is no one who cares. But you all understand how it really is feeling so out of control. God Bless each and everyone of you. Because you are all my angels
    here and so helpful when I feel I am sliding down more and more. You throw me an anchor to keep me in place. Thank you again for being there when I need you all so much. I appreciate this thread that I can never do this on my own and never want to do so. Bye now, Cheryl
  • heryl it sounds like you have had a rough day. Hope tomorrow is better.

    No it is not just you whose family seem to feel that we are just making all this up. Mine does too or at least part of them do. any time I get upset because I am feeling bad they immediately stat in talking about my depression being back and do I need to go see my therapist or mu psych doc. They would rather blame my problems on my bipolar disorder rather than the physical problems of Fribromyalgia or Arthritis. My IBS is because I am depressed not because it is apart of Fribro. When I am not able to get the house cleaned up or the dishes done it is because I have had a lazy day and must be feeling depressed ti couldn't be because I hurt too much. Sound familiar. I have given up trying to convince them that it is really physical and I just let them carry on because I know that I am not just being lazy or that I am not just depressed. Yes I may be depressed but that is not the main thing that is wrong - I am depressed because I hurt.!!!!

    Carie thanks for the warning about the herbs. I had thought I would try the same herb but hadn't gotten to the store to get it now I won't bother going ;-) It isn't fair that something that is supposed to work so well on autoimmune dieases shoud turn out to cause more problems. We should get a break sometimes. Right?

    Leslie I am going to make a sign with your Mother's saying on it and hang it in my house. (maybe on the porch so that people will see that before they see my messy house. lol hahahahaha

    Does anyone else have trouble with their family being on them because you can't go to bed and go to sleep like they can. My dh is always making me feel bed because I don't even bother to go to bed with him anymore since I am up againin 15 min hurting from laying down with him. I can sleep if I am hot and he wants the room warm. He just doesn't understand anymore.

  • OH LADIES !


    I AM SO SORRY TO SEE THE NUMBER HERE SEEMS TO BE GROWING !
    I THINK WE HAVE ALL BEEN THROUGH THE , "YOU LOOK OK" NUMBER ! ;(
    AND , " WELL YOU DID IT YESTERDAY " ! HMMMMMMMMM !
    IT'S TAKING ME FOREVER TO COME TO TERMS WITH THIS D.D. ! OR AS ONE OF YOU SAID ,THE " D " WORD ! MY PAIN HAS ALWAYS BEEN CONSTANT . I ALSO HAVE THE CFP , MY MUSCLES IN MY FACE AND HEAD ARE VERY PAINFUL !
    I HAVE BEEN TRYING TO JUST LIVE WITH THIS AS BEST I CAN ! FOR ME , I SEE NO OTHER SOLUTION ! I DON'T WANT TO BE ON HEAVY DRUGS AND DEPEND ON THEM . I AM NOT SAYING EVERYONE SHOULD SHARE MY CHOICES .
    I HAVE HAD THIS FOR MANY YEARS SINCE CHILDHOOD . THEREFORE , I HAVE TRIED MANY "WAYS & MEANS ".
    IT DOES EFFECT EVERY AREA OF OUR BODIES , DOESNT IT ? AND EMONTIONS.....
    WELL , I HOPE FOR TODAY WE CAN LEARN TO PUT UP WITH OUR LIMITATION'S ......JUST FOR TODAY ! GOD BLESS YOU ALL . DOLORES MARY
  • fms
    CairalBe: Maybe the worst part of this disease is our loved ones refusing to believe we have this disease. They'd rather blame it on depression (they've heard about that) than some disease that hits you harder on one day then the next. I think maybe we have to accept our limitations, and then stop trying to explain it away over and over and over again. We know in our hearts we are doing the best we can. I think a sense of humor, a belief in a higher being, and a network of friends who understand that yesterday you said you'd go shopping with them but when you get up the next morning you just can't.

    Stitcher45: I gave up sleeping in the same room and the same time a long time ago. We snuggle before he heads for bed. Then he heads for bed and I don't disturb him by tossing and turning and getting up 12 times a night.

    Dolores: It takes added strength not to rely on some kind of medication and I applaud your determination. I think they do wear off after a certain period of time and then you have to try different ones and then watch for the side effects. Just don't be so brave you become immobile.

    Gotta go off to work. It's Monday. Blaaaaah