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Old 08-20-2004, 08:31 AM   #1
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Fibromyalgia & Predisone

I am 60 years old & was diagnosed with fibromyalgia in early 2000 after going to over 20 doctors. I was doing some major suffering. Pain from head to toe. Even the bed covers hurt my skin. When I couldn't make it to the dr's office any longer, (doctor #21) my dr. sent a nurse from a home health center to evaluate me. She recommended physical therapy at home to get me mobile again. I had curled up in the fetal position and prepared to die. I knew I had to have a fatal illness to be in so much pain. I didn't believe for one minute that I just had pain. It was a long time later and a lot of research before I understood the vast expanse of having such an illness. I lost my job a few months later, was denied my disability because none of the judges believe in FM, lost my home next and ended up living in a 6ft x 12ft camper at a place called Shady Grove Campground with my son who has a terminal illness. We are quite a pair! By God's grace we have survived this first four years and now have a home...modest though it may be...we have a roof over our heads again. The doctor had started me on pain medication. If not for that, I am certain I would have ended up in the mental institution because the pain was driving me quite "mad". I have never gone to bed again to stay no matter how difficult it may be to move. My story is too long to tell here, but I had four major surgeries in four years and took a ton of predisone. I believe the predisone caused my fibromyalgia and I am hopeful that one day I will be well. I take extended release morphine 2xday for my pain and I am no longer in a wheel chair and can walk around the house and yard pretty good. Needless to say, I am confined to the house a lot and would welcome any correspondence. It is so difficult to keep the faith when you feel so isolated from the world. I am surprised every day when I wake up and I am not well. Read a lot...tried a lot of remedies. But it has always been in God's hands. Please pray for me and my son. God Bless!

Last edited by glowworm2; 08-20-2004 at 04:09 PM. Reason: title change

 
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Old 08-21-2004, 11:11 PM   #2
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Re: Depression & FMS

Hi Gloworm, You and your son ahve had quite a battle just to survive. I'm so sorry to hear of your troubles and I will keep you in my thoughts. - Andy

 
Old 08-22-2004, 06:54 PM   #3
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Re: Depression & FMS

Andy, don't know if you got my first message. i wanted to thank you for your kind words. God bless!

Gloria

 
Old 08-22-2004, 08:17 PM   #4
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Re: Depression & FMS

Gloria - There is so much, but one thing I wanted to touch on. Don't give up on your disability. almost everyone gets turned down the first time or two.

The internet has been great company for many confined to their homes. Forums like this are great. If this one isn't busy enough for you, there are many others around. Chronic pain forum is another good search term.

Alice

 
Old 08-24-2004, 07:51 PM   #5
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Re: Depression & FMS

Alice, thanks for the encouragment. You know I will be 61 yrs old next May and I have worked my entire adult life. I still can't believe I am having such a horrible time trying to get my disability. The main problem I have is that I know my attorney does not believe in my condition. I have only seen him twice and both times he has been incredibly rude. when I told him my ERISA attorney had gotten me a settlement with Liberty Mutual he looked at me and asked (very sarcastically) "how did he do that"? It was more his tone than his words that was so surprising. All I could say was "I don't know". I don't know why he agreed to take my case. Over the phone he was a sweetheart, but the first time I met with him he threw my file down on the desk and said " the judges don't believe in fibromyalgia!" I know I should have left then, but I was so sick and I had no transportation and didn't know where to begin to find another attorney. At that time I was almost crawling to the bathroom. My sick son had to help me do many things. I feel so guilty about all the stress I have caused him and it would help so much if we had enough money to pay our living expenses. we are very simple people and we are not greedy... I just want what I deserve...not a penny more..and since Liberty Mutual subtracted a sizable amount from social security when deciding my settlement with them...I want the amount they subtracted. But I have a feeling I am going to have to argue my own case when I go for my hearing. I don't have a clue what to expect from my attorney. I am so afraid I don't have the stamina or the will power to go through this process again...but if I live, I will have to. Thank you again. Write again soon. Gloria

 
Old 08-25-2004, 07:44 AM   #6
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Re: Depression & FMS

Gloria, get another lawyer!! Mine is wonderful. We haven't won yet but I have confidence that he won't give up. They used a great functional capacity evaluation form with my doctor and sent it to the judge. It showed exactly why I can't work in a way that makes it crystal clear.

Good luck and don't give up. Especially after working your whole life. If I were 60 I would be damn mad about not getting my money.

- Andy

 
Old 08-25-2004, 01:59 PM   #7
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Re: Depression & FMS

hi gloria, sorry to hear of your troubles that you both have.It proves your strong as your still here and fighting it. Let us know how everything goes, have you got any other friends or family who can help you both? love april. I will pray for you bothxx

 
Old 08-25-2004, 07:03 PM   #8
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Re: Depression & FMS

Ya'll forgive me for not replying. I am overcome with exhaustion tonight. Talk to ya'll tomorrow. G.

 
Old 08-26-2004, 07:50 PM   #9
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Re: Depression & FMS

Hope you feel better and rested - Love Andy

 
Old 10-16-2004, 05:37 PM   #10
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Re: Depression & FMS

Andy, I am better, but been having a rough time. My son is so terribly ill. I just don't even have the heart to get on line anymore. My heart is so broken I find it difficult to function beyond necessity. My son and I rode out hurricane Ivan in our mobile home and we survived. He really could not leave and even if he could have, he would not leave his dogs to go to a shelter. We had some roof damage and we applied to FEMA for assistance in having it repaired. Today we got a letter from FEMA denying us any financial assistance. They said we were ineligible. Chuck can't climb on top of the trailer and I certainly can't. The ceiling is leaking from the front to the back and I guess we'll just have to live with it. Our income is only $554/month and there is no way we can pay anyone to repair anything. I hate the federal government. I should have known if they were involved in it, I would get _ _ _ _ _ _ _ _ (fill in the space). We know people that knocked out the windows in their homes and didn't board them up so they would get a lot of damage and get a fat check. We were honest about the damage we had and FEMA said it was not severe enough to get assistance. Oh yes, and my doctor gave me seroquel (300 mg) and I almost died. I immediately had a reaction and by the time I could tell my son I thought I was having one, I was almost unconscious. I was in and out of consciousness in the ER and I know the doctors and nurses thought I had overdosed on my pain medication (until they saw my bloodwork) but they worked very hard all night long to save me. Breathing on my own was the biggest issue. I thank God I'm OK because I think it would have killed my son if it had turned out otherwise. I don't know what my doctor was thinking when he gave me the seroquel. It's for schizophrenics and bipolar individuals....that's not me. I'm a little nuts I admit, but not S&B. Go figure. I have given up almost all meds. I am terrified to take anything. I'm so upset with my doctor I haven't told him about everything that happened yet...I haven't spoken to him. I must not be living right, because I feel like God is allowing more than I can bear. Please don't hate me for pouring my heart out to you. I don't mean to complain. I just need somebody to talk to. Got to go write a letter to FEMA and tell them how stupid they are. That should make me feel better!

Love, gloria

 
Old 10-17-2004, 06:38 PM   #11
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Re: Depression & FMS

Gloria,
I just read your post and my heart is breaking for you. Never apologize here on the boards...we are all one "fibro family" here and support each other. We experience pain alike and each and every one of us share problems and receive support here. It sounds like you have experienced more then your share though. It's terrible that FEMA is not assisting you. I know you are exhausted with how you feel, taking care of your son and simply standing up and moving on....but don't give up with them. I have a friend whose parents experienced a smiliar situation as yours and FEMA denied them also. They pushed and pushed (granted they are not ill, but both in their 80's and little money with no support in Florida)... After much pushing and calling and pushing....FEMA changed their attitude. Find out who your Senator is...they didn't stop at FEMA, they contacted their Senator's office also. Granted it was an exhausting experience, but they knew they deserved assistance and didn't allow them to say no. If FEMA is determined not to help you....is there any other place you can turn to?

I will post a notice to our friends here. Maybe someone will see it who can recommend another option for you. We are here to support you. Don't give up, lets see if there is someone who can advise. Chin up...Hugs!!

Lov, Annie

 
Old 10-17-2004, 07:42 PM   #12
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Talking Re: Fibromyalgia & Predisone

Quote:
Originally Posted by glowworm2
I am 60 years old & was diagnosed with fibromyalgia in early 2000 after going to over 20 doctors. I was doing some major suffering. Pain from head to toe. Even the bed covers hurt my skin. When I couldn't make it to the dr's office any longer, (doctor #21) my dr. sent a nurse from a home health center to evaluate me. She recommended physical therapy at home to get me mobile again. I had curled up in the fetal position and prepared to die. I knew I had to have a fatal illness to be in so much pain. I didn't believe for one minute that I just had pain. It was a long time later and a lot of research before I understood the vast expanse of having such an illness. I lost my job a few months later, was denied my disability because none of the judges believe in FM, lost my home next and ended up living in a 6ft x 12ft camper at a place called Shady Grove Campground with my son who has a terminal illness. We are quite a pair! By God's grace we have survived this first four years and now have a home...modest though it may be...we have a roof over our heads again. The doctor had started me on pain medication. If not for that, I am certain I would have ended up in the mental institution because the pain was driving me quite "mad". I have never gone to bed again to stay no matter how difficult it may be to move. My story is too long to tell here, but I had four major surgeries in four years and took a ton of predisone. I believe the predisone caused my fibromyalgia and I am hopeful that one day I will be well. I take extended release morphine 2xday for my pain and I am no longer in a wheel chair and can walk around the house and yard pretty good. Needless to say, I am confined to the house a lot and would welcome any correspondence. It is so difficult to keep the faith when you feel so isolated from the world. I am surprised every day when I wake up and I am not well. Read a lot...tried a lot of remedies. But it has always been in God's hands. Please pray for me and my son. God Bless!
First of all... Welcome to the boards and gentle hug's to you!!! I understand how you feel. It is very very diffacult to deal with your own pain let alone live with someone who is suffering right along with you. I have Fibromyalgia and chronic fatigue syndrome. I am 31 yrs old and married. My husband is a sad case. He has severe spinal cord damage as well as reflex sympathetic dystrophy syndrome and ankylosing spondylitis and he has emphasema and black lung disease. My husband is only 42. I know how bad it is when you loose youre work, then home and everything else trying to get to doctors while struggling to get on disability. I took care of my hubby when he the spinal cord injury and rsds and as. I'm the one that had to pay for his doc visits and tests and medicines. we got no help from no one while he fought for 2 years to get on disability. No he's too far gone to do any kind of surgery or treatments. he can't even stand a hot pack on him for more then 10 minutes. And I understand youre pain. Some days I hurt so bad I can't move. My cat's know when we hurt. The problem is that they try to lay on or next to where we hurt. Some day's I hurt so bad I can't stand thier tails laying on me. I can't even stand a gentle fan. Cold makes it worse. Especially in the summer time because when you go from being outside in the extreme heat the go into say a freezing restraunt or store it makes me go into fit!!! I hate it. I get miserable. And people around you don't understand let alone care that you hurt. And thats sad. Depression comes with fibro. I think it's normal considering the things you have had to deal with. You're fortunate that you had that camper trailer. Som,e people wind up on the streets cause no one cares enough or don;'t beleieve the pain or disability is real. You should look up soc sec law and fibromyalgia. Get more lawyers keep fighting for disability. DON;T GIVE UP!!! And this is a wonderful place to unload. Or just talk if you want. The people in here arte great. Welcome!!!!! I'm sorrey for you and your son. Me and hubby will pray for you!!!

 
Old 10-19-2004, 06:36 AM   #13
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Re: Depression & FMS

Welcome, Gloworm, and please don't give up on your disability claim. I too have filed(fibro for 20 years), was turned down, found a representative that only works with disability claims(not a lawyer) through my county social services, and am waiting for an appeal hearing. If you file again be sure to put in the claim ALL of your conditions, including fibro,depression,surgeries, etc. It all adds up to why you can't work. It doesn't make sense that a lawyer or other representative would take your case unless he/she thought you had a chance to win, as they make their money from your back benefit award. There is a disability forum on these boards and there is a lot of information there.
I've worked most of my adult life, too, but over the years have been able to do less and less, and now I couldn't support myself if I was alone. My husband hurt his back at work in January, was denied his worker's comp claim and is waiting for a hearing(next year). We don't even have an income right now, but because my husband also has a vision problem and a learning disability, DVR has helped him enroll in vocational school. We are using his financial aid and student loan to pay the rent and get by. We are on food stamps but have no medical coverage.
Our situation is not as severe as yours, but I can understand your frustration, and your pain. Please hang in there and get as much information and support as you can from the great people on these boards as I have. We're all pulling for one another!

 
Old 10-19-2004, 07:08 AM   #14
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Re: Depression & FMS

you have a son you gave birth to. proof that you can do anything. you write down everything you want to say and you speak for yourself. i live in california. it was a struggle to get my ssi, but i won out in the end. the reason i feel i won was my calm attitued and prepared speech. your attorney is full of compost. my attorney was a poop too. he also did not feel we had a leg to stand on. well i told him he was wrong. i got my workmans comp and my ssi. and i only paid him half what he had coming because i did all the leg work and the speaking. i shamed him into it. and it worked!
passing judgment on another being who is ill is wrong. plain and simple. it is our job to remind people they are capable of compassion without opinion.
blessings of love and peace to you and your son.
bluelakelady
never forget you are a woman. the most powerful being on this planet!

 
Old 10-31-2004, 08:01 PM   #15
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Re: Depression & FMS

thank you all for your kind words and your support. i haven't turned on the computer in about two weeks and it was wonderful to see all your messages when i did. thank you all for the information. i did contact my congressman and FEMA called me within a couple of days and said they would get back to me, but i haven't heard anything else. i am giving them until wednesday which will be two weeks and than i will contact them again. i will not give them any peace until they help us. i'm hopeful we will eventually get it resolved.

i'm on the docket waiting for an SSI hearing date, so ya'll please be in prayer for me. my attorney expects the appeals board in Virginia to send my case back to the same judge who denied me and i'm very very nervous about that. i also told him i needed to know that he believes that i am sick and truly disabled and he told me if they didn't, they wouldn't have taken my case. i saw an associate of the attorney who originally took my case and he was a little bit nicer. i just keep taking it one day at a time and pray a lot. thank's for all the advice. i am taking it all to heart and appreciate you all taking the time to write to me. God Bless you all richly indeed! love....gloria

 
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