Last post Sat, Jul 05 2008 11:03 PM by beck1966. 851 replies.
Hi Terrylynn! Thanks for the welcome. I am not experienced in chat rooms. Wasn't sure I was doing it right. I hope to find some others who are going through what I am with my fibro and chronic fatigue. Is there a special time when people try to get together?
terrylynn, Im to the sight but I/d like to get to know peolpe, Since joining the sight is
the first time I haven't felt so alone, It's wounderful to have others that underrstand what
I'm going through all day, To share ideals and what helps you may help me is whats the best
part of this sight, I'd love to get to know you better, My e is beckostrives@aol.com write
me any time.
rabbitlady, I just wanted to thank you again for your message to me Iread it again today and you made me feel so much better about myself. and your spelling is fine, Ihavent been on this site very long but it sure has helped me out through the ups and downs(mostly downs) LOL. For all you new people you hit the right site ,WELCOME. P.S..rabbitlady have you ever thought of becoming a motovational speaker?you would be great! Talk to you later. big hugs Wendy
Wendy,
I'm glad my words helped. You are very kind about my being a motivational speaker. I'm to shy for that... But thanks. I just hate when any of gods creatures are treated like underdogs; and kicked when they are down. I'd be the first to stick up for them. Sometimes that has gotten into trouble; but most time it has paid off where its really helped others. I'd like to be remembered as one of those who care. And I suppect you are one those too. Hope your day was a little less painful and maybe some fun. My prays to mom and to you as well...
Rabbitlady () ()
(O O)
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I"m not sure if this has any thing to do with my fibromyalgia but i would like to roll over and twist my snoring husband BIG HEAD of his neck. just wondering any feed back would be great. big hugs Wendy
Hi all, Betty here again, my heart just breaks more and more as I read the horrible suffering most of you are enduring. I honestly don't mean to be an advertisement (though I am campaigning to work for this guy), but I encourage you to check out StopFibro.com. Dr. Whitcomb not just saved my life, but I'm telling you he gave me life. I have had Fibro probably since I was a child and I believe it was stress induced. I didn't get a real diagnosis until about 17 years ago. Even so, I functioned OK until this last October 8th, when I plunged over a virtual cliff and frankly got to a point where I would have welcomed death. I agree that Fibromyalgia is not the direct cause of suicide, but the chaos it can unlease on your body and mind can lead you that way. I admire those of you who bravely stay the course for the sakes of your families and your religious beliefs. I know first hand how difficicult it is. Not to minimize diseases such as Cancer, but you either get better or you die. With Fibro, it's constant, no end in site suffering to the hilt and most people not understanding this.
I'm going to do a copy and paste from what Dr. Whitcomb believes Fibro is:
A pulling on the meninges by way of encroachment or torquing appears to cause Fibromyalgia. This intrusion could indicate a tumor or other malformation, but we find that it is most often due to a change in alignment between the Occipital and the Atlas (C-1), which can reduce or distort the space through which the spinal cord and meninges must traverse the foramen magnum.
The foramen magnum, which is the opening in the skull that the spinal cord passes through, must line up precisely with the first vertebra in order for the spinal nerves to function properly. If there is a rotation or subluxation that compromises this precise alignment, it may impede that delicate process and cause a misfiring of normal impulses to the brain.
Any tugging on the meninges (remember the meninges attaches to the spinal nerve roots and the cranial nerves) can have devastating effects on this critical and sensitive nerve action, which in turn can produce a galaxy of undesirable symptoms.
The treatment I underwent entailed 14 adjustments per week for (in my case) 9 weeks to train my C-1 to go back where it was intended to be and here at home I'm being very careful to keep it that way. At the beginning I filled out a daunting questionaire that included assigning numbers to various parts of my body that hurt or other things going on with it. I had a lot of numbers in the beginning. In my 9th week, I did it again, and had so many 0's I was stunned myself. The bottom line, is I came home 83% (on paper) improved. I have been home now for almost a month now and think the number has increased. My sympathetic nervous system has calmed considerably. I went from total insomnia, to 6-9 hours sleep per night. No more IBS, though I thought that would follow me to old ladyhood and that scared me a lot. No Fibro Fog, mostly no more pain. I do have Vicodin on hand but that is it for pain, other than Tramadol and Topamax for the headaches I still get on occasion. I'm no longer weak, I can walk around the block and am allowed to do very light housework. I have cut way down on my antidepressant drugs as I don't feel depressed. (My Psychiatrist's recommendation is to stay on my current dose another 5 months and we will see if I can come off of them) My vision improved to where I seldom need my reading glasses now.
At the website, there are new testimonials of people I was actually there with, hopefully mine will pop up soon.
Me and my hubby are by no means well off financially. We kissed goodbye an IRA to finance my treatment and stay. Having said that, they do offer credit assistance. I'm passionately imploring anyone reading this to check out the site, pray about it and not resign yourselves to living like you are. It's not living, I know the difference because I was you.
Lastly, in the beginning of my stay there, I asked my husband if me missed me. He said it was just not the same without me. I told him it would not be the same when I got back either. He never met this "me" I became while I was away. That is why I say the doctors there gave me life at 48 years young. I truely have been feeling my clock ticking backwards.
I welcome anyone to quiz me about every detail if you like. I don't want to be boood off this board, I honestly want to help, as I have been helped.
I did write briefly about this once, here's my 2nd time with more passion because I've been home on my own with this now. Though there is no claim to curing this, it's close enough for me. Gentle hugs to you all, Betty
BettyB,I am sorry but that was to complicated for me.Again i only speak for my self ! Bout i am glad it worked for you.I my self am trying the simple things in life as that is all i can handle. best wishes Wendy
BettyB:Me and my hubby are by no means well off financially.
Wow, this could be a great thread topic. The amount of out of pocket dollars spent to treat Fibro. I personally have not had a vacation in 2 years as all of my "disposable" income has gone to doctor bills, co pays, hospital parking fees - i'm sure everyone here knows the drill!!
Once you factor in lost work time, medical bills, lost personal time - fibro should be a disease reserved for the uber rich!!! I once had an emergency account for those rainy days in life - but that has gone towards treatments.
Although I am thankful for having the disposable income, I just wish the medical insurance people would adequatly fund the services for fibro so our out of pocket cost can decline!
OK, i'm off of my soapbox. But gee a vacation would be fantastic!!!! A girls gotta dream!!!
HI, I am really bummed out today. My fatigue is the worst it has been i usually can get through this but today i could not acomplish any thing, maybe im feeling sorry for myself but i just really need to get a few things done. I am so angry that i dont have a drop of energy to take care of my family.This illness takes away so much, its just so unbelievable.My twin boys have there senior prom this Saterday and they want there group of teenagers (18) and there parents to come to my house to take pictures.I always try to get out of things because of my health but this one i want to do for my sons. See there dad died 8 years ago and i always feel guilty so i try to do what i can for them. I am lucky my husband is good to them but he isnt there dad.I guess i feel guilty i dont have the energy to do what i would like to and stop putting everything on my husband.I am very lucky i dont know what i would do with out him. I wasv diagnoised with fibro one year after we were married. he pretty much has to do everthing! well any way he has to work the day of the prom pick up the food (thank god for price choppers) take care of the house and then entertain.and i walk around half dead! man i feel like such a loser.and my children just dont understand my illness.well i know i will get through this i just wanted to bitch just really angry with this damed disorder,disease,illness what ever you want to call it .oh well enough of me i cant even stand listening to my self! sorry,Wendy
Don't be sorry, Wendy, I am in the same boat and I live alone, so I crawl through every day trying to do what I can for myself and to keep up with just normal activities of cooking and housework, which often only get done very skechilly....at best.
I am also in the process of trying to pack up my tiny apartment for a move at the end of the month and I have been sitting here for two days looking at what still needs to be done and not able to do it. For one thing, I can only do a little, maybe pack a box or two, and then I have to rest. I have no energy for this move and it seems overwhelming at the moment and like it will never get done. On top of that, everything that could go wrong with the plans for this move, have. I scheduled a mover for the 27th and when I called the lady at the new apartment, she said it wouldn't be ready for that date. They are renovating the whole place for me, which is really nice, but I thought that giving them til the 27th of the month (when they advertised the apartment being available for May 1), would give them lots of time to have it done. Evidently not. Now, the mover I have hired and given $100 deposit to, took two weeks to call me back the last time I had to get a hold of him to fax an estimate over to my Disability worker. The Disability worker says she never got it, so now I have to get him to fax it over again....or maybe he never did it....I don't know. I also have to try and get him to move me at a later date if at all possible with his schedule....but instead of being able to deal with any of this, here I sit waiting for him to call me back again, and I can't even leave another message for him because his mailbox is full every time I call.
So, you think you got problems? LOL I also have what is called "Generalized Anxiety Disorder", which means my anxiety levels are always high, even when there is no reason for it. You can only imagine how high my anxiety is from all of this! And the dr's won't prescribe anything addictive in this town, so good luck trying to get what you need even when you really need it.....which I do! I have been to see a Fibromyalgia Specialist at the end of April, who tried me on a medication for Parkinson's patients, but I couldn't tolerate it, so I am waiting for him to call me back to try another medication and fax that to my pharmacy for me. So, on top of going through the move from hell, I am bouncing on and off medications in a desperate attempt to find some relief. By now, you've probably figured out that my pain levels are also sky high due to the stress I am under, so I am not sleeping hardly at all, couldn't eat anything yesterday, but tried to eat some supper tonight and got a little into me. I can't believe I haven't had a complete breakdown yet from all of this, but somehow I am managing to hold it together....not well, but managing.
I have been able to switch all of my appointments, which have also been numerous to get everything done for this move, to Friday of this week and next week, so I have two more days this week to try and get some more packing done. My girlfriend has offered to help, but honestly, this place is so small (a 2-room bachelor) that I couldn't imagine two of us trying to do packing in here. So, I have graciously thanked her but refused the help so far, in hopes that I will soon be able to kick my butt to get it done. No one will be as happy as I will be to get this move done and get into my new place. I have visions of me sitting on a curb somewhere with all my stuff and nowhere to go....and this vision is seemingly very real every time I have it. I know it will probably not come to that, but so far, I don't know how it will be avoided either. I am truly going insane! LOL
So, maybe that helps you to know that you are not alone in the frustration and guilt and anger of this damn illness. I have not felt this helpless in a long time, and a basket-case of nerves to boot! I started out feeling so positive about this move, but every time I turn around, something else is going wrong and I'm stuck in the middle to deal with it all somehow. I have waited two long years and lived in a tiny little cell of an apartment with way too many stairs outside for someone with Osteo arthritis and Fibromyalgia to have to manage, in order to stay on the waiting list for subsidized housing, and now that they finally found me a place, it is nothing but a nightmare! I am trying to turn my negative thoughts around and pray and have faith that it will all work out somehow, but so far I'm not doing so well with all of that. I do hope your son's party goes off really well, but just be so grateful that you have a husband to help with everything, and who loves you and understands enough to do it all for you. My ex husband is very understanding and supportive, but he works fulltime and has a heart condition, so I wouldn't dare ask him for help with this. If I have to wait to move past the 27th, I may have to get my two boys and their friends to help me with their friend's truck. I will lose my deposit with the mover, and I hate to put my kids through that again....they have helped me with other moves and I have tried to spare them that this time. But, I may have to do whatever I have to do due to the miscommunication of the housing agency and the new apartment owners which have put me in a desperate situation, and who they both say it is my problem! Thanks a lot! Like I needed all this stress on top of the usual stress that moving brings without anything going wrong.
Please pray everyone out there reading this, that somehow it all works out for me. I really need your prayers and strength right now. I so appreciate them, too. God Bless you all for having the patience to listen to my bantering and accepting me anyways. I don't know what I would do without this place to come and vent every so often.
Gentle Hugs,
Maggie
Hi Wendy,
God I know what you are talking about. I feel fatgued all the time. All I want to do is try to lay in bed and do nothing. I always try to talk myself into getting up and doing something - anything. I accomplish some things one day, and pay for it the next. Boy when I pay for it, it really hurts. I to feel guilty about not pulling my weight as much as I would like to. My husband is dear and I believe he knows I do the best I can. But in some ways I know he wishes I could do more and gets mad. I'm not saying he's wrong, but what can I do. I try to tell him I will do something one day and something else the next. I only hope he realizes I'm trying - really trying. That is all I can do. I'm not OK with it and that why I understand your statement about feeling guilty. Unfortunately, I have to keep telling myself that stress makes everything worse - so cut yourself a break. Somedays I feel that way. Other days I feel guilty about being useless. Maybe we should make a Fibro home. Each one of us will do chores when one is up for it. The person that does not feel well, gets a day off without guilt... Then when that person feels better, they'll do a chore. Don't you like my little world... ha ha ha
My heart goes out to you regarding your family. But dear Wendy, remember you have a lot on your plate. The truth is you have a lot more than most people. I think you are handling things better than most. Give yourself hug - you deserve it. And further, what you said is probably so normal and a lot of women have said that. If shows again how much you love. Don't ever change, I admire you. Smile, eat some ice cream and you can feel some happiness.
Rabbit Lady
Maggieray,thank you for sharing some very difficult times your having,i know its hard to do.i also suffer from osteo arthritis and i also know how painful that is i get shots in my hips awful painful.you will have a very difficult few weeks with your move .i am sorry if you lose your deposit, times are tough ,please ask your sons and there friends to help you.you need them.it is hard to depend on your children but im sure they love you,you are a very sensitive and kind person icouldnt imangine any one being frustrated with helping you.i will prey for you ,lord knows you have had enough hard knock to last you a life time please keep me posted i care Iwish i could give you a big hug but i can tell you every thing will be okay. thank you for sharing Wendy
HI Rabbitlady,also thank you for your post.at least i knows i am not alone;i guess this just comes with this disease.Ilovethe fibro home idea boy i would live in your guilt free world any time!Im telling you rabbitlady your one smart cookie .you make me feel better and make me think about things i dont know but your here for a reason.you you sure have some good ideas.well i know your a caring person and you know thats all that matters in this painful world Dont forget to take care of your self we need you all my love Wendy
