Denied Disability: Social Security Recognizes Fibromyalgia

Three and a half years and I'm still fighting social security. I was diagnosed with fm many years ago. I was always in pain for as long as I can remember. Recently, though, I found out that I have Ehlers Danlos. It's a genetic connective tissue disorder. I have the hypermobility type. I had three knee replacements starting four years ago and my spine fused among many other surgeries. All of my joints are gone. I'm in a wheelchair and have in home care and the judge still thinks I'm not disabled. I've lost my family because of this condition. They all thought I was lying all through my life. I never could hold a job, but I tried until I almost took my life from the pain. I have no arch in my feet either. Actually it's going the other way, it's called a rocker bottom foot I think. I have many medications to take and I just can't wait to die some days. I also have ringing in my ears. I'm dizzy much of the time. I fall a lot. I can't stand to wear bras because my ribcage doesn't have much cartilage in it. The problem is that if I'm just sitting there, I look great. Ehlers Danlos gives you really velvety skin that makes a lot of us with it look really young and healthy when it's only deceiving. I've been told that I'm too pretty to be disabled. Sheesh, didn't know you had to be ugly to be sick. I shouldn't be shocked though because I've also had remarks about my faith, or lack thereof, causing this genetic illness. One thing I've learned through this is just how freaking stupid people can be. The most terrible thing about this is that I was paying into a system that should've protected me when I couldn't get to work anymore. It's the only insurance that you have to contribute to no matter if you want to or not. What a great country (note sarcasm). I recently realized that my kids would get money on my behalf if I died, that is, if SSA determined I am dead enough. Knowing them, my kids would probably have to hire a lawyer just to prove I'm deceased. I can imagine what the judge might say. "Well, although your mother is dead, she's still capable of haunting me and, therefore, I am denying your claim." Please, for the love of God, fix the ssdi system quick. I actually could have been finished with my degree, but I am not allowed to go to school until I'm approved. Guess what? The SSA encourages you to attend school to train for a job you can handle once you're in the system, but will deny you before then. Not all judges do this, but most do and mine is looking for anything to deny me. I've got a judge with the lowest approval rating in the state. Healthcare reform was a nice idea, but what is more important is SOCIAL SECURITY DISABILITY INSURANCE REFORM!

I have been suffering horribly with bad fibromyalgia, degenerative disc disease in my lower back and neck. I have had discetomy surgery on my back but still have sciatic pain. I have nerve damage in both hands with numbness and pain. I have pinched nerves in my neck with pain,. I have excreting pain in my right shoulder with radiating pain down arm. I have been diagnosed with SLE as well. I have been denied twice by ssdi and have been waiting 3 yrs for an answer from ssdi after an appeal before a judge. I have been unable to work anymore due to pain and sickness. It is so frustrating to read about faking cases that are receiving disability when those who truly need it cannot get it OR we have to wait years to see a judge and then we have to wait longer with hopes not to be denied.

Frame 49 and I have suffered with fibromyalgia since my late 20s. when I first got sick I was very physically active, singer / musician / sound engineer , and I never took medicine and had never done any drugs did not drink. I was a Christian and lived a clean life that was a personal choice. it took my approximately four years and about ten doctors to get a diagnosis. so I have been in constant pain all these years. I'll have the full range of fibromyalgia symptoms; chronic excruciating pain, brain fog, tremors, terrible debilitating headaches, severe depression, chronic insomnia and sleep disorders, IBS, etc. basically go to fibronet and I honestly have every symptom imaginable. also have chronic high pitched ringing in my ears (tinnitus). Back to you and there was no such thing as disability for fibromyalgia so I had to continue working. I was lucky to find an employer who understood my health conditions and was willing to work with me. I was a full charge bookkeer for a home builder. as long as on my doll my deadlines ( weekly monthly and quarterly taxes, workers comp self audit, payroll, AP/AR, etc.), this employer did not care if I work 3 hours a day if I had to miss a day and he paid me well and furnish my health care. after that employer what scores to file bankruptcy, I was unemployed and chose to go back to college with financial aid, in an attempt to put myself in a better position having to compete with those who are younger than me and who had Bachelor degree. I was diligent to save money every week and invest in a 401k. so I was able to make it on my own until I went back to work in September 2007- April 2010. at which time I got downsized. but the real reason I was downsized was because I was missing so much were due to fibromyalgia. they just chose not to write it that way. when I got downsized I still fully intended to try to work as I never really wanted to look at myself is disabled plus I had never asked anyone for help. however by 2012 it was evident to me that I would never be able to work again. the fibromyalgia got worse and worse in my health begins to deteriorate more. I also have been in a very serious deep depression (thoughts of suicide) partially due to all the pain with no relief in sight and now because I have been denied disability and have no what to care for myself. I am about to be homeless. All this after working and caring for myself for over 20 years without asking anyone or the government for help. as a person with fibromyalgia you look just fine to other people but they don't realize how much pain you are living in. even friends and family don't get it. and I've been accused of just being antisocial and that's not it at all I was a very social person who used to perform on stage. By 2007, my fibromyalgia was so severe I no longer going out with friends, attending family reunions, and resigned my position as worship leader at my church. finally I faced up to the fact that I needed to file for disability there was no other way. so I heard a representative, not an attorney, to file for disability benefits. again I had saved money and invested in a 401k and that is what I have been living alone since 2012. now all of my funds are exhausted and I am doing some small video production projects just to stay afloat. such as funerals, graduations, anniversaries, etc. and I do this were at a friends video production studio on my own time and hours as my health alllows. but I do not own any equipment so there's no way I can start my own business. my representative filed for my disability but it took almost a year to get a hearing date. then two weeks before my hearing I was called and told that the judge had died and it would have to be rescheduled and that was another 6 months. my hearing was in August 2014. I was notified the day before Christmas thst the judge denied mydisability. not representative told me it had my judge not died I would have been approved. they call this new judge the hanging judge as he refuses to approve almost any disability claim. one reason I did not know it was because I had not been receiving specialist care since I lost my insurance. I have only been able to afford to see my general practitioner and it transferred copies of all my records there. I would have loved to have been under the care of a Rheumatologist a neurologist again as well as seeing a counselor but you can't afford to do that when you have no money nor insurance. I wasn't for Obamacare, but since the law was in effect I thought I might could get some insurance... but I cannot because I fall between the cracks in the system. I do not make enough money to go through the federal exchange and must I did not implement the expanded Medicare. because I am a 49 year old single woman with no children I cannot qualify for Alabama State Medicare. however if I had a child or if I had been given my disability I would have insurance. my representative has now filed an appeal but unless I am able to go to a specialist and have current medical records from a specialist, I will be denied. and by that time I will be out from under the time limit that you have to file against the 45k I was making at my last job. I have no idea what I'm going to do. I feel so wrong by the system. I have been sick since 1991 and never asked for any help from the government until I had no other recourse and yet I'm denied and on top of that cannot get any insurance to be able to go to a doctor for ongoing care for all my fibromyalgia symptoms as well as for severe depression and anxiety. when I got the news that they did not my disability, I almost committed suicide the day after. I had my pistol loaded into my head. the only thing that stopped me was that I am a Christian plus how it would say my 75 year old mother who lost my dad and her husband of 54 years 2 years ago. also thought about the fact that my mother lost my youngest brother in 1990 to a horrible accident at the age of 18. but I have lost all hope. I have no idea what I'm going to do, I'm totally broke, in owe people money including where I had to go to the emergency room when I was having a colitis attack. I had a credit rating of 725 and now because I have had no money to pay off some small bills no insurance... my credit is just ruined. I had worked so hard to maintain excellent credit and did so until 2012. the bad part is that I don't owe but two credit cards and they are less than $6000 combined. I always pay my credit card off at the end of every month. but I had to pay rent. and I thought I could pick up some side work to pay it off and I couldn't find any work that I could do. now I have a huge hospital bill where I had to go to the emergency room and they had to do some CT scans and treat me. I have applied for financial aid for the hospital and the other doctors bills are received but they have not forgiven any of my debt because they say you should have an insurance it's the law. again I cant get insurance I fall between the cracks of the system. if anyone knows of any other recourse I can do to try to get an attorney that might be able to help me get my disability, get insurance under Medicare, or if the government will not approve my disability how about a $25,000 grant that they're going to give to the illegal immigrants so I can purchase the equipment I need to were an hour at a time from home to tread water and survive. I am so disheartened with the system. I worked my entire life and paid all my taxes in and did it while I was terribly sick with fibromyalgia. and now my government turns its back on me. and what's worse is I know so many people who receive disability and they are not disabled. it makes me so angry.

Hello. My goodness... You didn't know that you can call SS, and report someone that is committing social security fraud? All you have to do is call social security. Call them up, and talk to someone about it right away! They can have the person followed and taped. The federal government has plenty of money to have this done.

I hate people that cheat the system, and make it so hard for me and others to get help. It makes me sick. Please turn the person in. By the way, the person will have to pay all of the money back. Thank you. :)

I am 36 and was just recently denied ( for the second time) that the hearing level for SSDI for my fibromyalgia in addition to being diagnosed with depression, anxiety and panic disorders, neuropathy in my left leg and foot due to a hip fracture and two surgeries 9 years ago. I also have bursitis in both hips. The Judge that heard my case was a complete bitch. She implied in my denial paperwork that I was lying about my day to day activities, she discredited most of my medical evidence because my primary care is a Nurse Practitioner. My NP provided my lawyer and my SS file with detailed office notes, test results and had filled out paperwork specifically for social security. She had this paperwork co-signed by an MD ahead of the office in which she practices. My diagnosis of fibromyalgia was also confirmed by a specialist/rheumatologist TWICE...as well as diagnosing osteoarthritis. My DLI date (date last insured) is June of 2015. If I appeal, it will take close to two years for the Appeals Council to review my case...and chances are they are not going to side with ME, but with the Judge. By that point, I will not be able to apply for SSDI benefits any longer. My case was marked as DIRE NEED too. Our house is under foreclosure, we are losing our vehicle and we have three children to provide for. I have an active congressional inquiry on my case as well. They have been helping my case since before I obtained a lawyer. The congressional inquiry got me my hearing a lot sooner than most because of my case being "dire need". Things are a mess, I am still unable to work and we are losing everything. Does anyone have any words of encouragement??? I am not backing down. I am fighting this. I cannot believe my fate was placed in the hands of a Judge who has no idea what I go through on a daily basis. Shame on the system for allowing them to be so dismissive of this disease. And shame on those who abuse the SSDI system with FAKING their disability. It is those people who have made it so hard for REAL disabled people such as myself.

I have fibromyalgia osteoporosis ,I'm constantly fracturing my my spine and ,I'm not able to work since 2008 ,with all my proof yet ccp denied me please I'm in need of help anyone PLEASE

Wow! I can't believe how many people with real disabilities get denied benefits!! My sister-in-law and her husband BOTH collect disability and they openly admit that they are faking!!!! It makes me sick!!! I wish I knew how to report them

I have been struggling with fibromyalgia (FM) since 2010. The constant pain and fatigue kept getting worse and of course, the quality of my work and my quality of life kept going down hill.

In February 2014 I filed for Short Term Disability (STD). The company I work for gave me 5 days without pay for Family Medical Leave Act (FMLA) and then the STD kicked in at 70% of my pay. STD ended on August 23, 2014 and like an idiot, I naively expected to be approved for Long Term Disability (LTD) which would have been 60% of my pay. It is still better than Social Security Disability.

My company uses one Third Party provider for STD and yet another Insurance Provider for the LTD. I have not received one red cent from either my company or the LTD Insurance provider since August.

Two of my three physicians agree I have FM and the stress of working exacerbates the condition. One of the three, a Rheumatologist stated to my face and to the LTD provider that I am capable to go back to work. She told me, (paraphrasing), 'you don't have Rheumatoid Arthritis (RA), you have Osteoarthritis and we all get aches and pains as we get older.' She originally diagnosed me with FM back in 2010. Now my other two physicians (my primary care and my Neurologist) are telling me that (most likely) because of her (Specialist) statement, it appears I am going to be denied LTD. They each received a letter from the Insurance Provider stating that because they cannot provide clinical tests to PROVE I have FM, it is in their opinion that I should report back to the office.

OMG!!! I can barely get out of bed on some days. I cannot shampoo my hair much less shower on a regular basis because it is exhausting. I've lost my husband (divorce) and my home (settlement), my friends and family because of this disease.

Forget trying to cook, I cannot remember if I put an ingredient in or not. I've gone down the WRONG lane of traffic on more than one occasion so now I only feel safe driving in the general vicinity of my home. If and when I get out the vacuum, I can barely catch my breath afterwards, forget doing anything else!

I cannot keep track of my bills, I either pay late or forget to pay altogether. I went from a credit score someone would brag about to a score of shame.

Are they serious? Who would live like this for close to FIVE years just to avoid getting out amongst the living? Who would want to live like this while their life falls apart around them?

I've moved into a home (first floor master) that I thought I could take care of but it's still too much for me. I have no yard, it's a condo townhome association but I struggle to walk my little dog. I have to come home and catch my breath after the little guy has done his business.

This isn't a choice I made.
Now I guess I need to find an attorney.
More stress!!!!

Can someone tell me please, where do I go from here?

I have been on disability thru my company's insurer since 2010. It will run out when I retire (15yrs). What happens then, do I apply for ODSP? Is Endometriosis a recognized disability in Ontario? Thank you, Jane - Guelph, ON

I have been waiting for benefits fro 14 years, and now my lawyer said my claim is denied for the final time, I only had two real "Hearings" the first was a joke, the Judge ran from the building and told my attorney "the Judge was in an ambulance and was having heart problems", yet there he stood, telling lies to avoid the hearing. He wrote twenty pages of fictional BS about me, and it was entered into the record. I was responsible for everything short of the JFK shooting.
Second hearing four years later, the judge receives a "Hate letter" from my attorney, and enters that into the record, and I was denied again. "The letter said that this Judge would never approve my claim" and the Judge said "my attorney was right and it says I would never approve you, so I will deny your claim"
Hearing three 2012, my lawyer says nothing while the Judge proceeds to yell at me about what I am able to do and he concludes that I am not a Fibromyalgic patient, and do not qualify for SSD, I take 40mg of Methadone daily just to walk, and get fed, maybe some chores like turning the dishwasher on.
This has been the most unsettling experience realizing that the SSD system is a corrupt system bent upon refusing real qualified people with real serious medical problems from their rightful benefits, through any means available.
This is very disturbing, I do have all the symptoms and am actually a textbook case, another reason used to be refused it seems they think I studied all the available information and fooled all my doctors including the reumatologist that diagnosed me in the first place. It is utter nonsense, anyone getting the kind of medications that I do would never be allowed to "Fool with them" not ever. Methadone is a class two drug and I react very well to it, I can't get through the day without these pain meds and have been using them with good effect since 2006.
All I can say is the SSD system really wants me dead, to "Dry up and Blow away"so to speak. they are evil little pawns in a game, and I am a real person that is disabled, with no recourse left to me.
They owe me 14 years of back pay, and they will never let me rest while alive, this is the most corrupt system ever devised, short of the Nazi extermination efforts back in world war two. I will do my best to expose them for the fraudulent system they are, I am so thankful that I found this site. If we all could get together and speak as one we might have a chance against the governments systematic denial of all the people that suffer daily with this ailment. James Fenton Keno Oregon, stay tuned for my detailed book on this very case, I have one last task and that is to expose the Government for the most corrupt, "Bad faith" wielding organization on this planet.

I live in sudbury ontario ,I also have fibromyalgia and osteoporosis andI was just denied,I'm not quite sure how to fight this could anyone help please.ThanksErin

I live in sudbury ontario ,I also have fibromyalgia and osteoporosis andI was just denied,I'm not quite sure how to fight this could anyone help please.ThanksErin

Cindi - I am also 52, have also been working since I was 15 and am all alone with no family to help me. I'd been sick for years now but kept ignoring it and treating the symptoms separately even though I watched my mother suffer 15 years before her death. By the time the CFS syndrome kicked in, I finally realized how sick I was. By then I couldn't even get out of bed and lost my small biz. They tell me I can go to a homeless shelter or live in the projects. This isn't an acceptable quality of life for me. You're not alone. God help us both.

I was denied two times, i have fibro, arthritis, stenosis, nerve impment
IBS..migraines...depression..anxiety..bilateral carpal tun.i ve tested positive ANA three times..i have extream low vitamin D..and B12 and often lukopenia (low white blood) .. I am progressively becomimg worst. Im 52yrs old worked since i was 16 ..i just cant believe that i was denied..by time this is over i will have had lost everything. our savings..my retirement..and my home.. God help me.

It took me 15 years to get my disability. I was diagnosed with fibromyalgia along with bone on bone on both knees, three places in my spine,one place in my neck and both shoulders.
At the last hearing the judge didn't even see me, he stated to my attorney; "if I agreed to take back payments of only 5 years he would grant my case". I was so desperate, I agreed. Long story short they ripped me off for over one hundred thousand dollars and fifteen years of medical benefits. So, my advice to anyone applying don't give up, but don't hold your breath either!

In Ottawa, Ontario, Canada, I was diagnosed with fibromyalgia using a pain trigger point detection protocol system developed by Canadian Rheumatologists.

It is now accepted in Ontario, that generalized and/or whole body pain lasting more than 6 months as detected by any treating physician qualifies as Fibromyalgia and this is accepted by all insurers of Canadian patients.

THANKS FOR THIS NEWS.

IN 2005 I MANAGED WITH DIFFICULTY AND MY COLLECTED RESEARCH I HAD DONE AFTER BEING DIAGNOSED BY ONE OF VERY FEW DECENT SPECIALIST RHEUMATOLOGIST IN LONDON IN 2004, HAVING BEEN AFFECTED BY TOXIC ENVIRONMENTAL AND A STINT OF HEAVY AND REPETITIVE, LIFTING & STANDING WORK AND I THEN CONVINCED THE BRITISH AUTHORITIES WHILE I WAS IN IMMENSE PAIN AND MENTAL FATIGUE HEREOF.

Dear Martina my name is Florence and I have Fibromyalgia also and I understand the pain you are going through by walking to the store and by parking too far the best thing i will recommend is going to the motor vehicle and asking receptionist for a disability form bring it to your primary care or your pain management doctor have them fill it out for you and bring it back to the motor vehicle hopefully that will work for you.

I have Fibromyalgia, My Rheumatologist works at a very well known hospital Fibromyalgia is definitively diagnosed through a blood test This test checks what is called c3 and c4 if either one is high, then this is a measure of your bodies autoimmune response. both c3 and c4 were high for me. I am also a nurse and long hours on your feet and stress in itself will cause a flare up what upsets me however, is those people who claim to have this yet do not I would not wish this on anyone your memory begins to fade thus making nursing unsafe for my patients and a law suit for myself

I was diagnosed with RSD, then the Doctor retired and the next Doctor said I had MCTD (which I believe is a better diagnoses for my symptoms), then that Doctor passed away. Now my new Doctor feels I have Fibromyalgia. It is my belief from my own research on my symptoms and changes I made in my life is that Fibromyalgia is a condition we get from the foods we eat. Food allergies and the chemicals that we ingest through our food. Four months ago I purchase a Nutri Bullet and started drinking green drinks. Spinach, Chard, Kale, grapes, apples, pears, pomeganate seeds, mango, blackberries, strawberries, raspberrys, cherries (fruits purchased frozen at a local Dollar establishment). I mixed different fruits with my greens and sometimes as a few walnuts, almonds, goji berries, raw sunflower seeds, raw pumpkins seeds and what ever else I can afford. In four months I have lost 15 pounds and my joints feel better and most of my painful areas have improved 30-50%. I also am wearing those copper infused leggings and tops that seem to help too. the porblem with hiring an atorney is that they get almost a third of your settlement! And most people can't afford to not work for two years while they are waiting for appeals. Most people who file give up and force themselves to go back to work because they would be homeless and go hungry. I think our Government needs to look into what is being put into our foods ie., chemicals, fake sweetners and things like cellulose, which is tree bark. Cellulose is in just about everything and with all the children and adults with plant and tree allergies this is totally unacceptable. In my case all the Doctors would do is push pain medications or send me to physical therapy where the PH cause further damage to herniated discs and fractures. I don't llike the feeling of being drugged or my head in a cloud or the fact that we now are forced to go to the Doctor every three months to get our pain medications. When I have to pay for these appointments I can't afford to go to the Doctor when I am really sick. If you have been injured and in pain for 25 years and never asked for more pain medications, never lost your pain medications and never had any other drug in your systems when tested, it is a waste of my money and now the Governments money to force me to go to the Doctor when I am not "sick". It would be more cost effective for people like me to be checked on a yearly basis at the same time that I go in for illness or injury. This is a ridiculous requirement to see a doctor to get a med refill, then have to be seen 5 days later for your injury or illness when it could havebeen handled all in one visit.

I agree with Jennifer though, that without a viable test for Fibromyalgia there will be those people who fake the symptoms so they don't have to go to work and can play and vacation the rest of their lives. This is a discredit to those of us who are symptomatic and scientists need to got on the stick to find a test for diagnosising and a cure.

I would rather be working with a $4,000.00 per month Administrative Assitant income than trying to live off $800.00 per month.

Good luck to us all. At least I have found some relief through drinking green and eating a healthier and on the most part gluten free meals.

it is a shame fibromyalgia hurts so bad,i cant hardly get out of bed,or put on my clothes,i filed for disability .it took me two years to recieve my disability.i almost took.my life.my husband worked as a mechanic for 33 years.he has carpal tunnel ruptures disk pinch nerve,knees grinding bone and bone,knees going out and he falling down,high blood pressure,chronic fat in his spine,cant hear.been denied disability twice,wating on a hearing now.its a shame u put ur money up and when u get sick u cant draw ur money.lord help us please.

I've had fibromyalgia for quite some time because I MAKE myself get up and go to work. And, afterward I am glad I I'd because the movement makes me feel better than curled up in a blanket all day. I know one thing,it hurts. I'm an advanced practice RN, a clinical nurse specialist, and have dealt with all kids of patients in patients having pain.
My own is something I have to consciously make a choice for it not to consume me.
If you get nothing else from this discussion.......
Ian is right on the money. Its show me the data type thing.
However, there are data, if documented accordingly, a differential diagnosis can be made as to number of tender points, etc., and then there is data, albeit subjective, yet, substantiated by the MD, there is ,little room to guess or wonder anymore.
The government is the government. Social security is the government.
They are bland, and do not care what you say or how its said. They simply want the information, the data, or signatures.
So, consider the source. Logical end? The attorney you've seen who has a good track record, and one you can trust as your advocate.
You need an advocate. Youre dealing with courts and magistrates so you need an attorney, which may also charge you fees.
That's dependent on the individual attorney.
Get what you deserve.
Go to work and keep at it because the initial increased pain fades a bit more with each time youre exposed to that stressor. Before you know it, itmay not be as bad as it was in the beginning.
But if you can't work, and I've been in that situation too, but was blessed with three years of support from my employer, then you have no choice but to navigate the legal system.
I've really fallen through the cracks. I was let go for a stupid reason and haven't worked in 6 months looking for a good job. I did staff nursing. Its time to either teach nursing or return to staff development departments in hospitals. I was denied unemployment because they accused me of not following policy. However, I was the highest paid, and most degreed. The place was sold and the consensus is they were threatened by me. And now, they've given out 2 very important references, which one said they simply didn't believe!!! I would think this is against the law. It sent me into a downward spiral.
But, I got a gift from all this. I've decid d to go back into doctoral studies to get my PhD. So, I'm not allowing them to define who I really am.
I am showing who I really am, despite the fact I'm not perfect.
No one ever said we had to all be the same or be perfect.
This is life. What's the alternative? Been there too. Not good. Dark.

So turn around and be thankful you lived another day.
Your beliefs become your thoughts. Your thoughts become your actions
Do what you can, and give the rest to God..
My husband left me then destroyed my relationship with someone I really loved. Then he turned around and married a physician...for her money.

5 years later, I am still alone. After 30 years of marriage & 4 kids. Kids.....my kids have been my refuge. Theyre all close in age & are best friends with each other me and best friends with me. They have been my haven. But they're also burdensome and I worry a lot.
I have constant panic attacks. I don't know how to live alone but I've managed to for the last two years in a houseive leased. I thought I might buy it but the owner showed up and is waiting for me to move in the next three months. I hate moving. Plus, I had fixed this house up & personalized it so much. Now, I don't know where I'm going to be working , nor where I am going to be living.....My security... my basic primal need, that I'm so insecure about, is crumbling all around me.
But in have faith. Something is about tho turn things around.
We all must have hope. Faith in things unseen...like fibromyalgia.
Its there, you just can't always see it.
Hope is faith in things unseen.
I hope the rapture comes soon & there won't be asny more pain.
In the meantime......massage, hot tubs, avoiding triggers, like cold weather....ouch!!!! Do what you can & give the rest to God and your attorney!
I love attorneys. They are some of my best friends for advice about my security. There are people out there that care. It may not necessarily be your family that does. Seek professionals that can help you, not family or friends that get frustrated because they front know how to. And that's the essence of what can threaten relationships.
Be realistic. But don't expect pity parties or a lot of sympathy.
Others think, Wow...they look good. They don't look sick.

If they only knew the knots ....tight ones.....all over my body.
Then they could understand. People dont understand what they cannot see.
Don't be a victim. Don't choose defeat. Persevere.

Stay well. Don't get this flu going around. I bet that isn't good at all.
I hope what I've said helps. That's my only intention....that it helps.
Nothing personal....except to say I have read about what Ian wrote on diagnostic testing.
Its all so complicated!!! I like the attitude......No worries. Be Happy.
Peace.

This is good news, I know a few people who have been in debilitating pain from Fibromyalgia and have not been able to pay bills or buy good food becuase they can't work.

The problem is I also know somone who got Disability due to Fibromyalgia and doesn't really have it. She knows the symptoms well and has lied to the Doctors about her condition. She works. She plays softball and was even the softball manager for the Time Out Tavern softball team. Goes bowling, rides in mechanical bull contests and is out in bars 6 nights a week playing pool and singing karaoke, drinking and stripping naked in public. It is people like this who make it hard for people who "really do" have Fibromyalgia and other autoimmune disorders to be taking seriously by the Social Security Administration and other agencies.

Hopefully someday, they will come up with a blood test that will confirm diagnosis, so people who are really truly ill can be diagnosed earlier.

I truley understand what you'all are saying. I was diagnois with fibro when no one new what it was. I would hurt so bad and couldn't find relief any where. The other doctors thought I was crazy. I had already had cancer when I was 20 and survise it, according to doctor I would live only 6 months and SSI denied me help then too. After having cancer I would get sick ruffly ever 3 to 6 months and no one new why. Then when I got into my middle 30s I started hving seveer pain for no reason, so I went to an orthopedia and he diagnosis with fibro, and he gave me trazdone for years and it help. Then other medicialy problem pop up over and over. I didn't know what to do, I was working and thanks to GOD, I had a great boss in the early years, but good things don't always last. I got new bosses and they gave me hell, but I held on I worked 23 years and finally couldn't make another day and thanks GOD, I work under pension and had enough medicialy records to get me my pension. It is about time we fibro get the needed help.

I have spent most of my life with chronic fatigue & chronic pain, diagnoised with fibromyalgia, rh,Lupus, copd, nueropathey,depression, hypro thyroid, nodules on my thyroid, hyeniel hernia, peptic ulcers, weight gain, abused because they thought I was lazy. I left home at 16 married had a baby a yr later made it worse. I knew what needed to be done but I hurt so bad and was so tired I couldn't do it. I have suffered with uncontrollable crying & panic attacks, hemmoraged 9 mon had to have a hysterectomy & blood, gallbladder taken out, knee surgery, mood swings, at 18 almost had a nervous breakdown couldn't understand what was wrong with me. I have had doctors tell me it was in my head, at one point the doctors had me on around 37 are 39 meds some taken 4x a day. I had them I had to take nasal, rectal and by mouth some just to be able to take the others. I was in a back brace, leg brace, both hands & wrist & on a walker. I applied for disability & SSDI and was denied, I appealed was denied again. I lost everything no insurance no treatment. The SS Board told me at one point it was in my Head as well. I wanted to die at that point just from the thought they thought I was crazy. I even ask them at one point how they could give SSI to people that chose not to go to school and couldn't read but deny me when I had no choice in anything that I had, they said nothing. I finally refused to take all the meds because I chose to have a quality of life rather then a quanity. I had children to raise and needed a clear head to do it, so again I was denied benefits. So I continued to try to work getting worse all the time, I would go to work and my boss would get so upset seeing me because I would have to almost crawl to the house I would be in tears and shaking from pain and barely could get out of the car. I'm 54 now and I finally got my SSI last year but only back pay for I believe 19mon. I have struggled my whole life been basically called a nut, accused of being on drugs at 16 because I passed out, and test showed I wasn't. And for the last several months I have been almost totally down in the bed both knees went out & my lower lumbar as well. When I go to the Doctor I'm in so much pain when he says anything I start crying, & no matter how hard I try not I do, & he will always make a remark like stop being a baby, are why you crying which makes it worse because I'm trying so hard not to. My life has been miserable behind all of this & if it weren't for the love I have for my kids & God I would have ended it long ago just to stop the pain & the feeling of be worthless because of how I feel. Doctors want to diagnose you with depression but if they lived in my shoes they would be depressed too. I have to stay home most of the time because I get sick if I get around anyone who is sick. So I started taking in rescue animals because as long as I had them they have to be fed & I knew I would force myself to get out of bed that way & not give into the pain. I had took in foster children for yrs & done senior care for as long as I could then I got pneumonia & had it 11 1/2 months before I could get rid of it. Then at that point I could no longer work at all I had to beg for indigent care finally and I got it after 9months with pneumonia. I filed again for SSI & 3 doctors again confirmed it & with a attorney I finally got it. I finally got a house that is in need of repairs but I lost one hm in a fire & another to the hurricane was promised a house thru a grant program But never recieved it and have been living in a small fema unit for several yrs and a friend told me of one gonna be torn down & I begged the man before he tore it down if I could get it moved would he let me have it & he did. Then I had to find someone to move it that took about 2months and I used the back lil bit back pay I got for that. And managed to get some repairs done then ran out of money and now just a little bit at a time gets done when my ck comes in every month & it will probably be a year are so now before I can even get in it. What is so bad I have worked so hard and in so much pain just to be able to have a nice home & now I don't know if I will be able to even walk in it by the time it is finished if it even gets finished. But living in a trailer the size of this one you can pretty much count on being alone there is no room. I am telling you this as God is my witness it's all true. So that you that do have it don't give up. All I wanted was to be able to give are even leave my children & grandchildren something but at this point I'm not sure if it will be what I envisioned and I struggle from month to month but I give it everything I got to make it. So hang in there do what you have to do,and families be supportive you have no Idea of just what your love one is going thru. I have know one but God & me to help me & God does the bigger part. God bless you all & Good Luck and my prayers go with you.
Bonita

It seems the more pro active solution would be to to get training in something that can be done at home or part time bases rather than giving up on life and getting SSDI. I have 2 close friends with this disease who are both active and work. I know there is medication out there to help and both of my friends use a infrared sauna which really seems to help. As to Marianne's statement of so many have been wrongfully denied is it not true that so many have been abusing SSDI? Sherry stated she had received a full scholar ship to collage, she certainly could take classes from home using her computer.

I have applied for disability several times in my life. My parents even did so when I was five. I have been sick my whole life at the age of 16 I missed half my senior year due to back problems. I have never been able to work for very long because of my illness' . Recently I was told that I had. Genetic disease called Ehlers Danlos since I was a child, which explained a lot for me. I have fibromyalgia, degenerative disc disease, herniated disc in my thoracic spine, hemangioma on my spine(blood tumors), chronic fatigue syndrome, TMJ, mitral valve prolapse, rapid and irregular heartbeat, hypoglycemia, chronic pain syndrome, chronic chostochondritis, arthritis. At this point in my life I have had 3 shoulder surgeries, 2 knee surgeries, lap gastric bypass, gall bladder, and breast reduction with the hopes of relieving some of my shoulder pain. My pain level gets worse every year, my families finances are destroyed. I have been to more doctors than I can count. I don't want to be medicated with pain medication until I am a zombie and then I can't enjoy life with my family. I want someone who will maybe finally connect the dots, put all the symptoms together and get a real treatment. Not someone that treats each one individually. One doctor has even suggest Reflex Sympathetic Dystrophy and also Muscular Dystrophy. I also suffer for sever migraines more than 25 per month, for the last 9 months they have been daily. I am on a beta blocker and 2 preventatives, plus the doctor is trying to put me n an abortive called Maxalt as a daily pill, my insurance refuses to give me the 31 pills, they will only give me 12. I have a mysterious pain in my left side for 10 years no one knows what it is, the pain get so intense that I vomit. If you split me in half the entire left upper quadrant front and back are in severe pain, all day every day, and the pain management doctor has me taking Vicodin four times a day and flexeril two times a day, along with Savella twice daily. I suffered from Endometriosis so bad, that I ended up having a hysterectomy at age 32, upon which time they told me my uterus was like shredded wheat, no one ever gave me a reason why it was necrotic. My son was born in 1996, so how long was it like that and why? I read recently that if you had applied for disability as a child and you had a parent who was current on SS disability it might be possible to get it. Both my parents are. I am told I do not have enough work credits, well I wouldn't since I always been sick. The only reason I have any is because my first husband left me because he was sick and tired of me being sick and tired and found someone else. I had to call in sick many times, and I had to take an extended leave of absense do to knee surgery. I had a good boss. I had to quit college due to my health, had a full scholarship.
Everytime I try to go back to work I have to quit because the pain is crippling, over and of again since as long as I can remember. I have bone sitting on top of bone in my lumbar spine, and cervical spine. They(disability board) says my husband makes too much money so I can't get it as long as I am married to him. I don't want to be married to him, but I have nowhere to go, no insurance, no home. I am 45 years old with a 17 year old son, my son who he adopted because his dad walked away. Why can't I qualify under the statute of reg SS since my parents filed for me as a child. I did not know I should have filed before a certain age. I have filed at least 4 times. Can you help me?

The real problem in fibromyalgia and ME/CFS is political.

If you take anyone with FM or ME/CFS and test for upregulation of immunological markers you will always find that the patient must be suffering. The markers are not definitive for FM or ME/CFS but they still tell you "this person has a disease". For example, you will see:
consistently increased IFN-alpha and gamma
low natural killer cell function
increased titers of RNase-L
various other cytokine abnormalities
brain abnormalities.
Oxygen uptake dysfunction.
Taken together they spell a disease.
Insurers take advantage of the unwillingness to test the patient to this degree because it is expensive to do so.

thanks for sharing this article cathy i aslo suffer from this and people think im crazy cause i dont looks sick it just hurt all the time i hate this diease but now have hope thank you

I was denied for Fibromyalgia thru SSDI and a large insurance carrier years back. Do I have the legal right to or chance to receive compensation.

I just filed for disability for my fibromyalgia that I have had for 9 years and I also have rheumatoid arthritis and some other medical problems. I am more hopeful now since I read this article. Thank you so much, Cathy

I have Fibro,also it is the most painful thing that has to be in this world...My thing is were did it come from??Your nerve switch,you can't move ,even pick up a glass of water.And if you work one day it is over for you body the next 3 days or so.Help

I would like to use this article on my blog

SO many people have been wrongfully denied Social Security Disability Income benefits.

The purpose of my blog is to assist people obtaining their benefits and what to do and where to go when they've been denied.

I was delighted to receive and read the above email. I was just wondering if you have any idea how long it will take for this condition to be recognised in Europe.? I am not even entitled to a parking permit which means I have to park further away from my church, pharmacy, grocers and library than the spaces that are kept for a mother and child. I find it so hard to travel now. Two letters I wrote to the airport authority were ignored. All I wanted was help queueing. I'm afraid of getting worse and it would be nice to know there is some sort of hope on the horizon. Many thanks, Martina (Dublin)