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Old 12-09-2007, 09:30 AM   #1
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Newly diagnosed with fibro

does anyone here suffer with such debilitating pain in their arms, where the elbow is in the inner part of that arm at night?
I can be sound asleep and suddenly I"m torn from my sleep in such agony and force that I sit up almost crying and start rubbing the area that hurts.
this is a new symptom which I've never suffered before with fibro.
I knew I probably had fibro and so many people used to tell me I had it but I never told my dr until I was referred to a rheumatologist who diagnosed me with it.
I was put on diflonac and that doesn't seem to be working anymore. so he's putting me on that new drug specifically for fibro. lycra? I don't know the exact name. he just wrote the RX for it last week and I can't get it filled yet due to having no insurance and I have no job and I just filed for disability due to my list of illnesses I've had for years which is getting worst.
anyway,
has anyone here have this type of bone pain that's so severe and only at night time????
anyone have any suggestions for me what it can be?
I need help and dont' have another dr's apptn set up till I get approved with medicaid which I have an apptn. set up for tomorrow to meet with a respresentative.
I'm lost and need help.
I appreciate any suggestions and have an open mind.

thank you,

Linda

 
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Old 12-09-2007, 11:49 AM   #2
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Re: Newly diagnosed with fibro

Quote:
Originally Posted by lintek45 View Post
does anyone here suffer with such debilitating pain in their arms, where the elbow is in the inner part of that arm at night?
I can be sound asleep and suddenly I"m torn from my sleep in such agony and force that I sit up almost crying and start rubbing the area that hurts.
this is a new symptom which I've never suffered before with fibro.
I knew I probably had fibro and so many people used to tell me I had it but I never told my dr until I was referred to a rheumatologist who diagnosed me with it.
I was put on diflonac and that doesn't seem to be working anymore. so he's putting me on that new drug specifically for fibro. lycra? I don't know the exact name. he just wrote the RX for it last week and I can't get it filled yet due to having no insurance and I have no job and I just filed for disability due to my list of illnesses I've had for years which is getting worst.
anyway,
has anyone here have this type of bone pain that's so severe and only at night time????
anyone have any suggestions for me what it can be?
I need help and dont' have another dr's apptn set up till I get approved with medicaid which I have an apptn. set up for tomorrow to meet with a respresentative.
I'm lost and need help.
I appreciate any suggestions and have an open mind.

thank you,

Linda
Linda, I am sorry that know one has replied to you yet.... I have started having alot of pain in my elbows and in the front also... my pain doc who treats my fibro and myofascial pain says that there are trigger points in the elbow and that along with the myofascial disease is what is causing the pain... The lyrica you are talking about was first used for restless leg syndrome.... I hope it works for you as it did nothing for me but everyone is different.... I do get trigger point injections however my doc said that because the elbow has such small trigger points, he cannot give trigger point injections there... So the elbows are just another part of the fibro... I am having alot of trouble right now also due to the weather but I hope you get to feeling better soon... Jenn

 
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Old 12-09-2007, 01:58 PM   #3
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Re: Newly diagnosed with fibro

The pain in my arms is the worst sympton that I have. Sometimes I can't even bring a cup up to take a drink. Doesn't seem to effect the joint but seems to be all of the muscles and tendons that connect to the joint. Feels like I lifted weights yesterday and never gets better. Morning and evenings are the worst. Like I'm getting stiff from not moving. I am also newly diagnosed and on Flexeril. I only take it at night before I go to bed. I think it wears off about 3 every morning because my arms wake me about that time each night. I also hurt from my knees down to my toes. Seems to effect all of the muscles in my lower legs. I don't have it as bad as some but other symptons that I have had over the last two years are many bladder infections, severe arthritis in my fingers last year( lost all strength and couldn't even type), IBS, and sometimes my skin on my torso is sore to touch and GERD.

Hot tub seems to be the best med but it doesn't help with bladder infections.

 
Old 12-10-2007, 05:24 AM   #4
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Re: Newly diagnosed with fibro

Jenn and Spin,
thank you for your sensitivity and kindness in caring to answer my post.
the pain I get doesn't happen every night. I'm sorry to hear of the pain you have to endure Spin. I understand totally how painful times can be.
people who don't experience it don't understand our up's and downs or flair ups.
I am lucky to have such a compassionate partner and his family that we live with.
we had to move in with his older parents and his mom is 80 and tough as nails. she works from sun up to sun down and believes that pain or weakness is all in the mind. she feels we are what we think.
she's on a medication for the rest of her life due to a disease she has and it gives her energy. easy for her to say it's all in the mind!
let her experience the aches and pains and constant flu like feeling in the head. But I am surprised that she does believe me at least. being she's from the old school and a tough cookie, I didn't think she'd have any understanding of this disease or syndrome, or what ever category they put it under.


there has to be an answer or a cure for this weird thing called fibromyalgia.
they have cures for cancer, why not an answer for this thing?
is it because there's lack of money to have scientists do more research on it?

I also can't believe that disability doesn't consider fibro to be debiliating enough to interfere with day to day chores and just plain living plus work?
they say because there is no test to prove one has it, and that there's only the 10 spots on the body when applied pressure on can a dr tell if it's fibro.
so what they're basically saying is that anyone who want's to cheat the system would do so by lying and saying they have fibro and only going by their words because there's no diagnostic testing to prove it otherwise.

so they can't trust people which is horrible for the people who really do suffer with it.

we need people who will gather together and push the system into doing more research. I just don't know how to do it or where to begin. If anyone has any suggestions, please jump in and let me know.

thank you again for your replies. I really do appreciate them.

sincerely,
linda

 
Old 12-10-2007, 06:34 AM   #5
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Re: Newly diagnosed with fibro

hi linda,
have you tried using pillows to hug when you sleep? i found this to help me. i also wear braces on my hands and wrists. it alters the way i place my arms during sleep.
you posed a good question, actually a couple. as to why there is no cure yet for fibro, it is because this is a newly recognized disease and while funding is happening for research, it takes time. problem is, as my internist put it, for every 12 new diseases discovered there is 1 answer for 1 disease. doctors and scientists are in a constant state of running like crazy to catch up. and they never do. so, many of us wait with hope, often trying every new concoction science or a doctor creates.
important to recall how many centuries went by while masses died of cancer and doctors stood by, helpless. think of the toxins in use for cancer treatment today. there is still a long way to go to find a non destructive cure for cancer. no doubt fibro has been around since the beginning of the machine era. pollutants altered the air we breath. several schools of thought run to the pollutions of our planet causing the immune system to go haywire. who knows?
on to social security. they will grant it for the mental aspect of fibro. they did for me. i had over a year of mental therapy documented for them to consider and two years of medical records. it was my shrinks letter that was the deciding factor. because we have days where we are functional social security sees that as the ability to make ourselves get up and go. and some of us can, others cannot.
when working is overwhelming both mentally and physically, document those things thru your doctors and apply. it is the stress that eats at us. at last the stress of fibro is recognized as a debilitating disorder. i was told i was the first to get social security specifically for "fibro caused inability to cope with the stresses of everyday working."
having fibro is not easy. it can be done. it takes alot of proactive mind setting. getting the doctors you feel safe with who listen. getting a good shrink so they can teach you new coping skills for the stresses life does toss our way. getting a good physical therapist. i feel like i got a jump start on coping just by going to the 2 shrinks i saw. i was not, nor am i now, crazy. i was simply lost in this new changing body that scared me. the fear was feeding the fibro so it was a horrid cycle. had to break that.
my life now, when i consider it all, is easy. not pain free by any means. aside from fibro there are other imbalances within my body that add their own brand of pain or difficulty in life. i have a small thing i do, actually a couple of them. they bring their own fulfillment and stress. one, buisness mgr for an artist, i can put aside anytime. the other is sporatic, as i councel the dying and their families. no matter what your alterations are within you can find purpose with, and because of, your body and mind evolving in this strange and often frightful way. i have the freedom to work my wee things and gift them without charge to the families in need. fibro does not end your life it alters it while always opening new doors to step thru and new abilities to discover.
time for me to shut up. hope you all feel better soon.
peace,
bluelakelady

Last edited by bluelakelady; 12-10-2007 at 06:36 AM.

 
Old 12-10-2007, 01:22 PM   #6
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Re: Newly diagnosed with fibro

My arms are where most of my pain is too, so I feel your agony. Sometimes it does feel like it goes straight down to the bone. But it's never been bad enough to wake me up at night.

It is very possible to get on disability for fibro. My dad's former office manager did it. It's not easy, that's for certain. Attitudes towards fibro in general are slowly changing for the better. We just have to keep hammering away at the old ones and telling people that it is real. Every new disease goes through this stage. I like to think that our struggles with this will and with getting it recognized will make it easier for the next generation to deal with. Somebody has to blaze the trail so the road can be paved.

 
Old 12-10-2007, 01:44 PM   #7
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Re: Newly diagnosed with fibro

Quote:
Originally Posted by lintek45 View Post
Jenn and Spin,
thank you for your sensitivity and kindness in caring to answer my post.
the pain I get doesn't happen every night. I'm sorry to hear of the pain you have to endure Spin. I understand totally how painful times can be.
people who don't experience it don't understand our up's and downs or flair ups.
I am lucky to have such a compassionate partner and his family that we live with.
we had to move in with his older parents and his mom is 80 and tough as nails. she works from sun up to sun down and believes that pain or weakness is all in the mind. she feels we are what we think.
she's on a medication for the rest of her life due to a disease she has and it gives her energy. easy for her to say it's all in the mind!
let her experience the aches and pains and constant flu like feeling in the head. But I am surprised that she does believe me at least. being she's from the old school and a tough cookie, I didn't think she'd have any understanding of this disease or syndrome, or what ever category they put it under.


there has to be an answer or a cure for this weird thing called fibromyalgia.
they have cures for cancer, why not an answer for this thing?
is it because there's lack of money to have scientists do more research on it?

I also can't believe that disability doesn't consider fibro to be debiliating enough to interfere with day to day chores and just plain living plus work?
they say because there is no test to prove one has it, and that there's only the 10 spots on the body when applied pressure on can a dr tell if it's fibro.
so what they're basically saying is that anyone who want's to cheat the system would do so by lying and saying they have fibro and only going by their words because there's no diagnostic testing to prove it otherwise.

so they can't trust people which is horrible for the people who really do suffer with it.

we need people who will gather together and push the system into doing more research. I just don't know how to do it or where to begin. If anyone has any suggestions, please jump in and let me know.

thank you again for your replies. I really do appreciate them.

sincerely,
linda
Linda, I just want you to know that we all feel your pain... I am fighting SSD for Fibro, Hypermobility, migraines, Myofascial pain and BiPolar 1 that is still not under control... I am not trying to beat the system.... I go to all my doctor's appt every month and do everything that they want me to. I will not give up.... I have already been turned down but am awaiting my day with the Judge.... I would never wish this on my worst enemy but sometimes, I wish these people from SSD had to live my life for just 24 hours, that's it, just 24 hours. They might change their minds... None of my docs want me to return to work. I see a therapist, psychiatrist, GP and pain management doc every month. Even with insurance it is not cheap with the copays and all the meds.... I take 26 pills per day and still the pain is there. I refuse to stay in bed even though sometimes, I have no choice.... It is a chore just to take a shower. I have pain in my lower back, upper back, neck, shoulders, top front of chest, hips, elbows and knees. I had always worked and was a workaholic up until I suffered some TIA strokes in June of 2006. I have not been able to work since then. The finacially toll it has taken on our family is terrible and trying to get through the fibro fog is frustrating.

Just remember, you can always come here as we know how you feel, Jenn

 
Old 12-14-2007, 07:43 AM   #8
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Re: Newly diagnosed with fibro

Jenn,
how long have you been suffering with this now?
when did you decide to apply for SSD? I finally decided to do it on line which took me what seemed WEEKS due to the length of dates, hospitals, office visits, medications, etc.
I was finally finished entering it all on Dec.1st and immediatly I recieved a phone call from an SS representative. she set up a phone date with me but then cancelled it because she saw I had already filled out the two seperate sheets that needed filling out. the application and the medical info pages.
I was sooo relieved to see I didn't have to have a phone interview after all.
she told me to stop by and bring my original birth certificate so the security guard who works there can make a copy for her.
he brought it to her and she even thanked me for coming by. I was shocked at how pleasant she is.
doesn't mean I'm going to get approved though being it gets sent to a group of totally different people. she was there just to help me fill out everything correctly I guess.
she was so nice to me that she even told me I was eligible for SSI or what ever you call the other benefits. I didn't know i was eligible for that. I thought you only get that once you reach your sixties or you retire.
she also told me being I had a daughter living me who was under the age of 18 at the time I became disabled to work, that I might even be approved to get more money. she really helped me out alot and sounded like she was on my side.
funny thing is, being I can't work because of my mental disability with the bipolar and general anxiety disorder and then the other physical diagnoses that came after, I really miss working. I miss offering myself to help others and to keep order and busy with my mind and hands. I can only work for short periods of time though and never last longer than a year at any given job. I really miss work.
I went and applied for medicaid and food stamps last week and the rep said I qualify. I'm also going to hound the unemployment company for not following up on my pending case. they specifically told me they were going to put my case in pending when they found I put down a different reason for being fired rather than what the company told them. what it all comes down to either way they put it, is that I simply can't work! I tried so hard and there were days I'b be a crying lunatic in my bosses office being hugged by her.
she is the most loving wonderful woman I've ever come across in my live other than my older sister and my mother. she's very spiritual and has a lot of love for people and she understood me totally.
It was HER bosses that worked in the administration office that chose to fire me because of absenteism.
my boss told me before I was fired that she saw I couldnt' handle the jobs requirements because of my personality. she even TOLD me to go home at times because i was sickly looking and unable to make the entire 8 hour work day. even my co-workers could see it on my face before I even said that I felt sick.
so why the unemployment buisness is giving me a hard time is beyond my understanding. I am a very loyal and trust worthy individual who does NOT take advantage of anyone. I made a mistake in wording how i was fired and now I'm paying for it.
they told me to continue claiming benefits and I haven't heard a word from them since.
should I call them? i'm so nervous and know i will get very frustrated and upset after having to speak to their rep's.
they make is so complicated and make the individual feel like they're not worthy to get any help at all.
it's as if they screen you so you DON'T qualify for help even though you do.

I feel like crying from the frustration that it takes in the work one must do to get assistance. all the hoops you have to jump thru. it's so darn frustrating.

how long does one have to wait to reapply for disability once they turn you down? did they GIVE you a written reason why they denied you disability benefits?
do you have to hire your own lawyer to go with you before the judge? or do they give one to you if one can't afford it?
I know they're going to deny me. If they denied YOU and your health is much worst than mine, I don't see a chance for me that they'd be likely to give it to me.
oh! , also, if you're collecting disability, can one work thru home at the computer? say like, doing "medical transcription" thru home? or can one not work AT ALL!?
I'm sorry to bombard you with all these questions that relate to disability, but it feels so good to be able to speak with someone who's been thru it.

I really pray for you and hope you get approved for disability. and yes, I agree with you. If only they could live in our shoes for a day and see what we really mean about the pain and how it interferes with everyday life.
no more being able to do the things we used to just do without thinking.
now we have to refrain from doing anything that might possibly set off the pain from worstening.
do you know that when I was at medicaid the other day and two representives I met with asked me what fibromyalgia is? I was shocked! that they never heard of it or came across a client that has it. it's 2007 and they're the proffesionals and never heard of it? I had to meet with four representives, each one of them did they're own seperate jobs.
one for the medical health insurance, one for food stamps and one for drug counseling. No WONDER you have to wait for 3 hours or why the process of applying takes 3 hours. Is it really necessary for four people to enroll someone?
give me a break!
boy am I learning about the system in such a short amount of time.
thank you so much for you empathy and sympathy. I can't tell you how good it feels to come to my computer and pour my heart and thoughts out to others who are going thru the same thing or similar ways.
thank you so much,

sincerely,
Linda

Ps- do you take the new drug that's approved by the FDA called "lycria" or something like that spelling?
if so, do you have any side effects from it?

 
Old 12-14-2007, 05:00 PM   #9
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Re: Newly diagnosed with fibro

hello, the insides of my elbows hurt all the time. they don't wake me up at night, my hips do that. i find that i can't open most bottles or pick up a pot of spaghetti.

i'm going to try for ssd also. my counselor says i should. good luck and gentle hugs to all.

 
Old 12-15-2007, 07:06 AM   #10
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Re: Newly diagnosed with fibro

Quote:
Originally Posted by lintek45 View Post
Jenn,
how long have you been suffering with this now?
when did you decide to apply for SSD? I finally decided to do it on line which took me what seemed WEEKS due to the length of dates, hospitals, office visits, medications, etc.
I was finally finished entering it all on Dec.1st and immediatly I recieved a phone call from an SS representative. she set up a phone date with me but then cancelled it because she saw I had already filled out the two seperate sheets that needed filling out. the application and the medical info pages.
I was sooo relieved to see I didn't have to have a phone interview after all.
she told me to stop by and bring my original birth certificate so the security guard who works there can make a copy for her.
he brought it to her and she even thanked me for coming by. I was shocked at how pleasant she is.
doesn't mean I'm going to get approved though being it gets sent to a group of totally different people. she was there just to help me fill out everything correctly I guess.
she was so nice to me that she even told me I was eligible for SSI or what ever you call the other benefits. I didn't know i was eligible for that. I thought you only get that once you reach your sixties or you retire.
she also told me being I had a daughter living me who was under the age of 18 at the time I became disabled to work, that I might even be approved to get more money. she really helped me out alot and sounded like she was on my side.
funny thing is, being I can't work because of my mental disability with the bipolar and general anxiety disorder and then the other physical diagnoses that came after, I really miss working. I miss offering myself to help others and to keep order and busy with my mind and hands. I can only work for short periods of time though and never last longer than a year at any given job. I really miss work.
I went and applied for medicaid and food stamps last week and the rep said I qualify. I'm also going to hound the unemployment company for not following up on my pending case. they specifically told me they were going to put my case in pending when they found I put down a different reason for being fired rather than what the company told them. what it all comes down to either way they put it, is that I simply can't work! I tried so hard and there were days I'b be a crying lunatic in my bosses office being hugged by her.
she is the most loving wonderful woman I've ever come across in my live other than my older sister and my mother. she's very spiritual and has a lot of love for people and she understood me totally.
It was HER bosses that worked in the administration office that chose to fire me because of absenteism.
my boss told me before I was fired that she saw I couldnt' handle the jobs requirements because of my personality. she even TOLD me to go home at times because i was sickly looking and unable to make the entire 8 hour work day. even my co-workers could see it on my face before I even said that I felt sick.
so why the unemployment buisness is giving me a hard time is beyond my understanding. I am a very loyal and trust worthy individual who does NOT take advantage of anyone. I made a mistake in wording how i was fired and now I'm paying for it.
they told me to continue claiming benefits and I haven't heard a word from them since.
should I call them? i'm so nervous and know i will get very frustrated and upset after having to speak to their rep's.
they make is so complicated and make the individual feel like they're not worthy to get any help at all.
it's as if they screen you so you DON'T qualify for help even though you do.

I feel like crying from the frustration that it takes in the work one must do to get assistance. all the hoops you have to jump thru. it's so darn frustrating.

how long does one have to wait to reapply for disability once they turn you down? did they GIVE you a written reason why they denied you disability benefits?
do you have to hire your own lawyer to go with you before the judge? or do they give one to you if one can't afford it?
I know they're going to deny me. If they denied YOU and your health is much worst than mine, I don't see a chance for me that they'd be likely to give it to me.
oh! , also, if you're collecting disability, can one work thru home at the computer? say like, doing "medical transcription" thru home? or can one not work AT ALL!?
I'm sorry to bombard you with all these questions that relate to disability, but it feels so good to be able to speak with someone who's been thru it.

I really pray for you and hope you get approved for disability. and yes, I agree with you. If only they could live in our shoes for a day and see what we really mean about the pain and how it interferes with everyday life.
no more being able to do the things we used to just do without thinking.
now we have to refrain from doing anything that might possibly set off the pain from worstening.
do you know that when I was at medicaid the other day and two representives I met with asked me what fibromyalgia is? I was shocked! that they never heard of it or came across a client that has it. it's 2007 and they're the proffesionals and never heard of it? I had to meet with four representives, each one of them did they're own seperate jobs.
one for the medical health insurance, one for food stamps and one for drug counseling. No WONDER you have to wait for 3 hours or why the process of applying takes 3 hours. Is it really necessary for four people to enroll someone?
give me a break!
boy am I learning about the system in such a short amount of time.
thank you so much for you empathy and sympathy. I can't tell you how good it feels to come to my computer and pour my heart and thoughts out to others who are going thru the same thing or similar ways.
thank you so much,

sincerely,
Linda

Ps- do you take the new drug that's approved by the FDA called "lycria" or something like that spelling?
if so, do you have any side effects from it?
Linda, I started with the pain probably about 10 years ago... I use to work out to Billy Blanks Tae Bo Advanced workout tape for an hour everyday and then ride my bike about 12-14 miles a day. I noticed that my hip started bothering me. It wasn't until 2005 and after many different doctors that I was finally diagnosed with fibro. I was a workaholic also working 15-18 hours a day with the BiPolar undiagnosed. So believe me there were things that happened that I am not proud of today however now with the diagnoses, I understand all the things from the past. The BiPolar is still not under control but I continue to work on it. I remarried two years ago on a whim but he is very supportive of my illnesses and understands the reasons I can no longer work.

I completed all my paperwork for SSD in December of 2006 and had to go to their doctors. One for a physical and the other was a pyschiatrist. Believe me it was not a pleasant experience. When I had the physical, the doctor moved my arms and legs after I told him that he was hurting me and he would not stop. I left his office crying and in pain. I was in bed for three days afterwards. That was on a Saturday and on Monday morning, I called my so-called adjuster with SSD and explained what happened. Her supervisor called me and wanted the story all over again. Not that it did any good, I was still denied. I had an attorney before I even started. PLEASE get yourself an attorney once you are denied, if you are. They will handle everything after that. The letter of denial I received per my attorney and adjuster said that it was a standard letter that they send everyone. SSD is hoping that you will not go any further and just drop the case. When you are denied you can ask for reconsideration, you do not have to re-file. If you talk to an attorney and he takes your case then he is pretty confident you will win. The reason being is that he only collects if you win your case. The law states that he can only receive 25% of your back pay up to $5300.00 max. It is in your best interest to get an attorney once you are denied. Because of my finacially situation, I get frustated and tell my husband I am going to get a job, which he knows I cannot do. All of my doctors have told me not to do it especially since I am fighting SSD. Everytime I go to my appointments with my doctors and therapist, I call my attorney so that every couple of months, they can request the latest medical records for when I have my hearing with the Judge. I did receive a letter stating that I will get my hearing with the Judge however, they will let me know 20 days before the hearing date. It can take up to one year, according to my attorney, for the hearing.

As far as the lyrica, that drug came out on the market quite a few years ago for restless leg syndrome so it kind of makes me angry that it is trying to make people with Fibro think it is a new drug that is specifically for Fibro and it is the new magic pill. It's not. It has been out on the market for years for RLS. I am not saying that it does not help some people with Fibro. I wished it helped everyone. I took it years ago for RLS and it did nothing. My pain doc doesn't even prescribe it for any Fibro patients. But you have to remember that everyone is different and everyone reacts differently to the drugs. So what doesn't work for one may work for someone else.

Just remember the adjusters at SSD are supposed to be there to help you and seem to always be on your side. The second one that ended up with my case had family members with Fibro and said she really understood what I was going through and then the bomb was dropped when I got my denial letter. You want to know what work they thought I could do????? Housekeeping at hotels, hospitals, places like that and yard work at cemetaries and churches. Hell, I can't even mop and vacuum in the same day at my little house.

Once you get SSD, you can work some but there is a limit to what you can make. I am not sure what that is as my sister is on SSD but still works and I think she can make up to $700 per month. But don't quote me on that.

I hope I answered all your questions as I have some Fibro Fog going on with this great weather we are having today. I too have a minor in the house also and yes, they will back pay on him if I win my case. Remember, they do not pay for the first six months that you become disabled.

Let me know if you have any other questions. Good Luck, Jenn

 
Old 12-21-2007, 05:16 AM   #11
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Re: Newly diagnosed with fibro

Hey Jenn,
you have been a BIG! help to me by answering my questions and sharing with me what you went thru and what to expect from the system.
I realize they deny people the first time around too.
there's nothing worst than getting shot down. I feel like most of my life I've been shot down. that's why I think so negative. I prepare myself for the worst so that I can emotionally handle the bomb.

I dont' think I'm going to get it. You sound very similar to what I'm experiencing in life as far as working and having bipolar at the same time.
I just cursed and yelled at the medicaid person who's assigned to me.
he called me the other day asking me if I spoke with a drug counselor the day I was there for my interview. this is at medicaid, so I can get medical help and food stamps.
I specifically waited to see this lady being the last person I had to see before I can leave. I was there for three hours.
so I remember her quite well.
she told my rep. that she has no paper work or recollection that she met with me. I remember specifically her writing down what I was saying.
how could they loose the paper work?
I went balistic on the guy taking out my frustration on the system when all the guy was doing was being the messanger for this woman. he wanted me to come BACK AGAIN! to go over everything again when I'd already done it.
I told him they're so unorganized there besides other things.
all my exhaustion of how I feel about the system was poured out at him. I said the "F" word, the "S" word amongst other racial things about how the people working there treat people like me. I apologized and he said I did hurt him and that all he was trying to do was help me.
I cried the next morning when I woke up with such remorse for my outburst.

I am so sick and tired of living that scene over and over again like a broken record in my life. I do it at jobs, I do it at my bosses, my coworkers, check out people in stores, etc.
i'm ashamed of my behavior but can't control it. there is no control.
I too am not on any type of regular medication for bipolar because I have reactions to all the medicines they give to treat it. I"ve tried them all.

I"m still in pain bone wise and is getting painful again now that I ran out of my pain medicine the rheumy dr gave me. he gave me no refills on it and I only have the lyrica one that I don't want to fill because of the side effects.
you said it didn't work for you anyway. and I had NO idea this drug was put on the market years ago for something different other than fib.

I too have a very understanding, loving man that has nothing but compassion for me and my illness. he has alot of patience and knows me like a book. he soothes me and makes me feel loved and accepted.
you and I are very lucky aren't we?
My daughter is not so lucky because her illness is worst. she has the borderline personality disorder. do a ****** on that disorder. she fits that description to a T.

I have to cut this short to go and get my daughter now.
I'll talk to you later.

sincerely,

Linda

 
Old 12-22-2007, 05:45 AM   #12
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Re: Newly diagnosed with fibro

Linda, I am sorry you are having such a hard time. I understand the outburst oh so well. It is what, three days before Xmas and I have maybe 5 presents... I had to go get trigger point injections yesterday, not a scheduled time due to the pain and now I get to go shopping all day today. Oh what fun the people in the stores may have. My husband is compassionate about the fibro however, he really doesn't want to learn about the BP1 and has a hard time understanding it. So he does drink every night as a way to deal with it I think. That is starting to wear on my nerves... I left my first husband over that. Now I feel trapped.. I don't know why I am even talking about this, I guess b/c I feel safe here.

I got a letter from SSD talking about what to expect at the hearing only to receive a letter from my attorney saying that the hearing will probably be in about 9-11 months due to the hiring freeze from the government. He advised if I wanted to do something about that to contact my state senator or House of Representative.... Like they really care. That really didn't sit well with me.... I think they put you off so you will give up but not me... I will fight til the end....

Sorry to cut you short, I know the pain can be really bad but you need to take your pain meds as prescribed as you never know when they will call you for a drug screen and if your blood levels aren't where they need to be, there will be alot of questions...

As far as your meeting with the lovely office, did you expect anything else??? Make sure you keep notes or take someone with you who can and keep all your records together... Just a thought...

Have a beautiful Day and keep your head up.... Jenn

 
Old 12-22-2007, 06:46 AM   #13
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Re: Newly diagnosed with fibro

hi jenn,
write that letter and also call your representative and your senator. call the local paper too. anything that gets the ball rolling. politicians are an odd bunch. often they actually do something for one of us. i know. we got speed limit signs on our street because one of the neighbors raised the roof and called till he got the supervisor himself.
your attny is smart.
peace,
blue

 
Old 12-23-2007, 05:41 AM   #14
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Re: Newly diagnosed with fibro

I'm back.
I'm glad to hear you feel safe enough to discuss what's bothering you Jenn. I'm here for you anytime. I too understand the situation you're in because I too left my husband because of his drinking. he wouldn't stop. He wasn't bad in the beginning of our 18 year marriage and before I knew it, he was hiding it down in the basement and everytime he ran out, say for a pack of cigarettes, he'd take five hours to come back. I'd be fuming by the time he got back.
it was the hardest descision of my life to leave.
after all, I felt safe in what I thought was a secure life. I was a housewife raising four children since the age of 22. I dindn't know how to even begin my life after leaving him. he balanced the check book, took care of the car, like getting the oil changed, and getting the car inspected. boy did I pay a high price and looked like an idiot having to explain to an officer who ticketed me and told me my inspection was past due by 8 months. LOL


and guess what? My second partner whom I'm now with for six years, maybe seven, I don't remember because of brain fog, is an alcoholic too. here I said I"d NEVER be with another man who drinks!!! never say "never".
Thank GOD he's stopped now for almost a year.
so you and I seem to have similar lives.

oh, and please don't ever blame yourself for his drinking habits.
they tend to make you feel that way. it's not your problem that he drinks.
he CHOOSES to drink and not because you're sick. That's just an excuse they make up so they can justify why they drink. They all have excuses and dont' want to take the blame. it's a physcological game they play but don't even know they're doing it. if that makes any sense?
God knows I've lived around men who drink. my father was an alcohlic and stopped when I was ten, then died when I was 18. 3 out of four of my brothers wound up becoming alcoholics and not any of my 3 sisters.

Now that I'm older, I can easily say and make up my mind that I won't waste anymore of my days on someone who doesnt' give a darn about themselves or the people around them.

To change the subject, I had no idea they ck your blood levels to see if you're taking the rx's. that's something new I learned.

sometimes as I'm sitting by myself reflecting on things in the mornings when I wake up having my coffee or trying to read a book and all these thoughts are interfering with my trying to concentrate, I ask myself if I'm really ill enough to be able to ask for assistance. I say to myself, geesh, I should just find a job and forget about the disability. there's people who are worst than me.
for years I've been telling myself I"m normal and yet I just can't make it in the working world. that's why I finally have to give in and get on disablity. I did't want to orginially. I had the opportunity back in 1998 when I tried to end my life. My therapist had the appt all set up for me. but I cancelled it.

I don't like the confusion and all this wondering and the anxiety it makes me feel by wondering if I'm going to get disability.
how long do you have to wait if you're turned down to re-apply?

I hope your holiday goes well and that you're able to endure your pain.
some days are worst than others and I'm not overly thrilled the holidays are here. it's difficult and exhausting to have to entertain my family. I wish I could just not celebrate it. but my kids would be devestated.

wishing all of you a happy and pain free holiday and new year.
I guess I'm not asking for too much, am I?

 
Old 12-24-2007, 07:30 AM   #15
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Re: Newly diagnosed with fibro

Quote:
Originally Posted by bluelakelady View Post
hi jenn,
write that letter and also call your representative and your senator. call the local paper too. anything that gets the ball rolling. politicians are an odd bunch. often they actually do something for one of us. i know. we got speed limit signs on our street because one of the neighbors raised the roof and called till he got the supervisor himself.
your attny is smart.
peace,
blue
Blue - I know you are a very smart lady as I follow many of your post.... I have alot of fibro fog these days and many outburst with the BP1 and am working on that very hard with the psychiatrist and therapist. So, could you possibly help me by advising me on how to go about reaching these people and how to go about asking for what it is I need. I don't want my emotions to get in the way. Another thing I was thinking about is I know the person that is getting ready to run agaisnt (sp, fibro fog), our State Senator, do you think it would be a good idea to send him a letter also? Just a thought... Any help would be greatly appreciated... Peace be with you as I go to the lake this holiday.... Jenn

 
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