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Living With Fibromyalgia - Online Support Group

To pursue Social Security or not?

#1

I was in a lot of pain after my third car accident. I went through every type of doctor there was to finally be told I have fibromyalgia. My general doctor had been doctoring me all along and said that he would do anything he could to support me through this whole process. He even told me that he would help me if I thought I needed to quit working and apply for SSI.

Then after a year going through every doctor that would see me and all the pain and suffering I finally had to give up working. I was an analyst and I couldn’t even remember what databases contained what information to consolidate a report. So how was I to keep working? I quit a job that I loved and then I saw my doctor two weeks later. I asked him to write a letter of support for Social Security and he told me that he didn’t think he could do that because after all I was still working. I told him I had stopped working and that’s when he flipped a switch. He told me that he could come in claiming the same symptoms that I had and still have the same results on test that I had so how was he to know that I was in fact in that much pain that I couldn’t work. And of course we all know it’s not just the pain. Anyway I asked him if there was another doctor I should see and he got very angry with me and defensive because I guess he thought I was asking if I should change general doctors. I wasn’t I had just run out of what type of specialist I should request. We got into a bit of a heated argument because I was upset that after almost 2 years of doctoring that he would actually question my status at the time that I really needed his help with social.

I had also followed some advise on a website that said that doctors don’t always have time to put a good letter together for you. So it was suggested to write the letter that describes all of the problems that I had for my doctor to just sign. I asked my doctor to sign it and he said he would have to think about it. I said that wasn’t any problem I was just trying to help the process. When I went to go get my records I learned that he had put into my record for that visit how I had demanded he sign my letter and that I was bullying him and that he felt that he may have to dismiss me as a patient. So of course the letter that he did eventually write after my test results came back that I have major depressive disorder, didn’t hold water with the judge for social.

I have been reeling from this for the last six months. I’m lucky I have a medical pension coming to me so that’s keeping us out Of financial ruin but I don’t want to give up on getting Social Security. At the same time I don’t see how I could win it.

I cannot work and if I could I would’ve kept the job that I had. I have worked since I was 16 years old. I am now 50 and I had to quit working two years ago. Giving up my life working has not been easy. No one in their right mind would choose to have this kind of life and live in this kind of isolation on purpose. An illness that has completely stolen my life and yet I’m not terminal. My therapist, family, friends, and every support group that I read all say to stay positive. I keep trying to hold my head above water but just seems to keep getting deeper and deeper.

I’m asking this group what would you do? Would you continue to pursue SSI even though now I’m aware that I have this bad record in my medical charts. And it isn’t easy to change doctors either. I tried and of course the very first thing I’m told is that they don’t give out narcotics to new patients. I am not a drug seeker. I do everything in my power to wait till the very last second to take my Vicodin. Heating pads and hot showers are my saviors a lot of times. I pay for it most of the time too because it takes me at least 1-2 hours to start being able to breathe from the pain after I take my meds. But every doctor you see makes you feel like that’s all you’re there for is to get drugs.

Forgive me for going on so long about my history. I would just really like to know what would you guys do? Would you pursue getting Social Security? Would you pursue finding another general doctor even though now finally he’s come around to agree that I do have a problem? I just don’t know which way to go.

Oh, and of course I can’t say how happy I am to see a reseach article on the illness and know that they are at least looking at this illness seriously in the medical community. When I first got diagnosed I actually worked in a unit with all nurses and I was told by an educating nurse, oh you got diagnosed with fibromyalgia the junk diagnosis. That just means they don’t really know what’s wrong with you. I guess I should’ve got a clue right away huh?

Thank you for your responses in advance. I have seen enough discussions to know that this group will give me their opinions and support and I do appreciate it.

#2

I'm so sorry you're going through all this. All I can say is....get a lawyer. Speak to a DISABILITY lawyer, tell him everything (including the problem with your doctor) and go from there. They don't get paid, unless you win your case. And when you do win, they'll only collect 25% up to $6000.00. (that is assuming you're in the U.S.) I really hope things work out for you...and all of us! This fibro is NO JOKE!

#3

I would apply for the social security. I have been out of work since the end of summer and after my short term disability ran out I had to apply for long term and one of their requirements is to apply for social security with in 2 years.

#4

IM SORRY FOR WHAT YOURE GOING THROUGH.TSKE TO A DISABILITY ATTORNEY AND TELL THEM EVERYTHING INCLUDING WHAT HAPPENED WITH THE DR.THEYLL KNOW WHAT TO DO SND EONT TSKE THE CASE UNLESS IT CAN BE WON.THE ATTORNEY WILL GET 25% UP TO 6000 THATS IF YOU LIVE IN THE UNITED STATES IF ITS A FIRRIGN COUNTRY ASK.LET US KNOW. WHAT HAPPENS AND WHAT YOURE DOING ILL KEEP YOU IN MY THOUGHTS AND PRSYERS.

#5

Hello everyone,



As expected you all have been great in your responses to me. And I so appreciate it. I guess in my long story I should’ve mentioned that I did have a lawyer just before I saw the judge. They were in a completely different state although I saw someone local. Then I saw the lawyer that I didn’t talk to in the beginning five minutes before my hearing. And then after the hearing I got a letter that said we’re no longer your lawyers. I guess I didn’t pick a very good one.



One of the questions you posed was if it was noted that my doctor flipped on me. Well long story short version is what would be talked about in my appointments wasn’t what was always noted in my records. Things that he would say would not be there and then things that I did say he would take out of context. For example two weeks after my car accident when I was still working full-time, my husband and I decided to go forward with vacation plans that we had to go to Florida. Our kids were looking forward to it for the past six months and we had worked hard to get to that point. Of course I had no idea what the next year would bring for me and of course I was still in a lot of pain but decided to suffer through it and get there so that my kids could have their vacation. After the first day I was bed ridden the entire rest of the trip.



When I got back my doctor wanted to know why I why I hadn’t set up my physical therapy. I told him that I just wasn’t thinking very clearly and that I had just gotten back from Florida. Well of course he mentioned that in my records stating that I had gone on vacation to Florida. Two and a half years later when I Received my notification of nonacceptance, it was noted that I had been capable of going on a vacation. So i was capable of working. The only way the judge would’ve known that was through my records. But again I was working full time at that point and continued to work full-time for another year. So why wouldn’t I have been entitled to go? I wasn’t trying to build a case for disability at that moment in my life. I never dreamed I would even be quitting my job a year later. I’ve worked all of my life that was not at all in my plans. I thought that I was still just hurting from the car accident and that I was going to be better eventually.

Getting to know that you have Fibro takes forever to understand. But since having it and since I have seen many doctors including going to the Cleveland clinic, I have learned that there were many signs of it along the way and the last car accident was just the final straw.



We have too many assets for me to have qualified for SSI. I’m sorry I missed stated I meant to say Social Security Disability.



Yes, putting this record together was a killer. Especially since my brain was not fully functional. It still isn’t.



I got diagnosed with the Fibro from two different rheumatologists. One that is local and one that was at the Cleveland clinic. The one that’s local is not very good with bedside manner. So I chose not to go back and see him plus thought that my GP would be able to handle my basic care. I am really thinking that I need to go back to some kind of rheumatologist for routine care.



Thank you all again for this discussion. It really does make me feel good to know that you’re there for me and I’ve gotten the support that I needed to do this. I will go back to the disability lawyer that’s very persistent with me and see if that doesn’t help. I have shared the story verbally with that lawyer and they want me to fill out the paperwork but I just get overwhelmed with it every time I think about it. It doesn’t take much for me to be in tears right away over my life situation.

#6

Thanks for listening and offering suggestions. Your replies mean the world. Gentle hugs and happy holidays.

#7

I’m so sorry your dr is not capturing the correct things to document , they often don’t ! The frustration of living with fibro is so multi level & the dr’s, even when on your side just don’t understand the process.
I would say continue your path for SSDI , you have worked all your life and are entitled to that money, it’s yours for when you retire or can’t work . I have found having as many dr’s as possible to support your dx can be helpful. If you don’t see a pain specialist that’s one that can help paint the more accurate picture of your pain. A rheumy is good, but it’s hard to find one that will treat you. I always ask at the first appointment , can you help me ? Their answer can usually help you figure out if you should move on.
If you decide to change primary care dr’s , having the records from your first dr can’t hurt, even if you did go on vacation & continue to work, it just shows how fibro is progressive and it does get worse, I worked for a year while struggling also, we just finally get to a point that we can’t push any longer
Keep looking for dr’s that will support you, I recently saw a specialist that diagnosed me with mitochondrial disease , and I’m trying his treatment plan , he is well know in the medical community and it should help me get my SSDI , I was denied once already , my long term disability may end this year , because they say if I’m fit to do any job they can cancel me, not sure how I can live on SSDI alone , but I’m going to fight it. I can’t walk through the grocery store, how could I work. I was a nurse for 25 years and loved it !!! I hate that I can’t go to work… It’s so unfair, but we do have to keep a positive attitude and hope that some one will figure this out .
Hugs & blessings
dee B

#8

i was just diagnosed with fibro but have known for yrs i had a problem and have not worked for 4 yrs. I have been told by everyone except my dr. that i need to file for ssd. I have worked for 30+ yrs and have to many assets for ssi. I have been living off of my 401 k for the last 4 yrs and have filed several times, of course i have been denied. i just missed my last appeal so will probably have to start over, but i didnt really have enough to appeal on anyways because they had not diagnosed me until after the date. I am told that you have to be able to write a "good" letter to qualify. Of course that is not me...anyone have any suggestions or been through this? I am almost out of money and no further ahead.

#9

I WOULD GET A DISABILITY ATTORNEY AND GET ALL YOUR RECORDS FROM EVERY DOCTOR,EVERY TEST YOU'VE HAD AND GIVE IT TO THEM.THE ATOIRNEY WILL KNOW WHAT TO DO.THEY'LL TAKE THE CASE IF YOU CAN WIN.YOU WON'T HAVE TO PAY THEM UNTIL YOU WIN.THEY'LL TAKE 25 PERCENT UP TO $6,0000.GOOD LUCK LET ME KBOW WHAT HAPPENS.YOUR IN MY THOUGHTS AND PRAYERS.