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Living With Fibromyalgia - Online Support Group

Worrying and aching

Just super overwhelmed and feeling alone tonight. Tomorrow morning I go for my Social Security disability hearing. A complete stranger who hasn’t watched fibromyalgia, back and neck injuries, arthritis and anxiety slowly rob me of everything I had and hoped for and once was. On top of that Monday night I woke with an explosive pain wrapping around my hip and radiating down my leg. Caused by nothing more than SLEEPING! My orthopedic doc took his pictures the next day… Sciatca. Again. Now I can hardly sit or lie down without blinding pain, but I have no choice but to drive an hour away to go plead my case in hopes for a SCRAP of a future; knowing full? well they could just deny me if they want to. I pray that when this over at least one element of fear will be reduced… the one where every time you’re sick, or flaring, you not going to lose anymore jobs because of your health.
Never thought my life would culminate to THAT being my biggest hope and dream.
Goodnight all, wish me luck. :grimacing:

My heart and thoughts are with you! :heart:

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Hey N8trluvr,
Dealing with DSS is NEVER fun. I have been down this route for another condition and this was rejected, I appealed, this too was rejected. I could not agree more with the idea of a complete stranger with little to no experience in rare conditions passing judgement is just a slap in the face. Do we choose to be in this situation? Of course not, you’d have to be a complete headcase (No pun intended, in my situation anyway-Brain injury) to choose this. But, eventually the did accept my claim.

What I did was obtained supporting dr’s reports and submitted those, excluding all of those reports that gave conflicting info. When it comes to rare conditions there can be LOTS of opinions/views. I would recommend if you can find a dr with compassion and understanding, use their reports as supporting documents.

But don’t loose heart, you are by no means the only one to have to go thru all of this bull#$%&. I sometimes think the idea is to wear you down so you throw your hands in the air and say ‘It’s all too hard’ and give up. Don’t do that. That’s exactly what they want. I am not saying this is easy, it ain’t. I damn near ripped what little hair I have left out in frustration, but in the end I got it.

Merl from the Moderator Support Team

Thanks so much for these encouraging words… I’m sorry about the frustration and red tape you’ve faced as well… and I believe you are 100% correct, the process is designed to frustrate you into giving up. But I won’t. I can’t!! The trouble with a debilitating condition is… I’m still HERE; drawing breath, so I need to be able to provide for myself!! It amazes me that anyone would put themselves through this process who didn’t actually need it. I would SO much rather be working in the field I loved than dealing with government workers whose job it is to figure out how NOT to do anything, to receive a pittance of the $$ I used to be able to earn.

Wishing you a positive outcome! I understand completely when you say going through all this to receive a pittance of what you used to earn in a job that you love. That’s me too! I have my own DSS hearing coming up in April, but who knows? They can’t see the exhaustion and severe pain in any lab tests, and I get it because I am a retired RN and I didn’t believe in fibro either. Of course, this was 30 years ago when it was just being identified as a condition. I had symptoms, but just thought it was because I worked so hard all of the time. It progressively got worse. Now, I can barely keep my house clean (it usually isn’t!). I can’t walk far, have fibro fog so bad that I had to write down the names of people in my office so I could remember them. When my doctor put me off work, I thought it would be for a short time, get some rest and go back. No way. I barely function at all. I have been in administration most of my career and I wouldn’t even hire myself. I hope that the judge (all judges) can understand how very real and serious this condition is and provide us the justice we deserve as sufferers. Good luck, I truly wish you the very best!!

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Sorry that you are going through this. I can certainly relate to your situation. I have multiple problems, and within the last two years had a cervical fusion. And I am also having severe pain in both of my thumbs, which I believe was from my repetitive motions in my job, but so far all the doctors are saying it is just bone on bone arthritis. It hurt so bad, and I told my work several times, and they didn’t really do much to remedy the situation. In the end, I still had no choice but to do the job or quit. I tried part time, but they said no, so here I am, sitting alone with no job and no wages. My next step is to try and get SSI, but don’t even know where to begin. I guess I will start with my regular doctor and go from there. My illnesses include almost constant neck pain from my fusion and two other bulging discs, back pain, newly found sciatica pain, neuropathy, ulcerative sigmoiditis, osteoarthritis and fibro. I’m pretty sure it will be denied and I will have to get a lawyer, but if I do, I do. I do agree with you, I would rather be working. I’m getting so depressed because of all of my pain/issues and now being home alone during the day doesn’t help. Anyway, hoping for the best for you, and anyone else out there with the same medical issues and illnesses.

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How did it go at the SS meeting? I have been through that and it was so frustrating and discouraging. I did eventually get on disability. I get it about how hard it is to adjust to lowered expectations.
All I can say is that some days are better than others. Also, I am just trying this one out: forgive/love yourself just the way you are.

Dear Blessed1,
I can’t thank you enough for the encouraging words… and it really helps me to feel less isolated; we seem to have traveled the same road with both our careers and this :face_with_symbols_over_mouth:fibromyalgia!
And you know, in my “closing words” to the judge at the disability hearing, I actually said that exact thing. That in my 30 years of nursing I’ve had to both hire and fire staff, and that frankly; I would not hire me.:confused:It’s the sad truth.
I wish you a comfortable weekend!

I can certainly relate to the sadness and frustration you are feeling!! It’s bad enough to have to accept and live with fibro, but when there are other injuries and painful conditions on TOP of that, it’s at times unbearable and infuriating. I find that the moment you try to explain a particular problem you’re having( to the Doctor) they all too quickly want to blame FMS. Or my anxiety. It’s scary… and also unfair. I shouldn’t have to WORK 3xs as hard as someone else to be properly diagnosed. And yet, we do. It sucks, and it ADDS to the anxiety, which can help to FLARE the fibro… and on and on it goes.
Anyway, speaking of not being heard, the SS hearing lasted about 15 minutes, and it was obvious the judge had read NONE of the REAMS of paperwork, documentation etc I was made to provide. On top of that, they don’t give you a decision on the spot, they said they send it in the mail. So… I still don’t know what my future holds.
If you are just beginning the disability process, expect to be denied TWICE in writing, over about a year’s time, before being granted a hearing, which is still another year away. Typically a 2 year long process. important after the first denial comes in the mail, they will tell you you have a specific timeframe to respond if you do not agree. DO NOT miss that window, get on it right away. Yes, they will still deny you again, but they’ll make you start from scratch if you miss that window. After 2nd denial, you’ll go through it all over again to get a hearing.
I didn’t get a lawyer because after consulting a few, they all wanted me to get back on multiple other medications, some that I suffered terrible side effects from, all to make they’re case easier. I’m not putting myself thru any extra horror to make a lawyers job simpler. So I went it alone. I’d have preferred not too… so if you can find a good lawyer I’d say do it. It’s just A LOT to handle by yourself. Not impossible, obviously… but tough. And of course, I could still be denied. :woman_shrugging:
I wish you all the best with everything, and just know you’re not alone either.
:heart:

Hey, Rose, I think I replied to you under “Karen6!” I’m so sorry… if you go back through this topic thread you’ll see it, I put some important things to do/not do re: the disability process. I am going to see if I can forward it to u or copy/paste, but if that doesn’t work just scroll through the replies in this topic.

Again my apologies!