Tuesday, October 25, 2011

Fibromyalgia

We're going to get a shitload of emails from alleged sufferers of Fibromyalgia Syndrome telling us how wrong we are. They won't be answered.

I assess the needs of IHSS applicants. I do this 400+ times each and every year. I've interviewed literally 1,000s of people claiming to have all sorts of ailments from flat feet (THAT'S a permanent disability??) to terminal cancer to diseases you've never heard of in your life because they are so rare - but real.

If I had a $1 for every person who told me they can't work or clean their own homes because they have Fibromyalgia or some other related, vague syndrome or disorder, I'd be so fucking rich I wouldn't have to work as a civil servant anymore.

I see this diagnosis so much that I can't believe the CDC or WHO hasn't called for emergency epidemic protocols.

Everyone under the age of 60 who doesn't want to fucking work has Fibromyalgia Syndrome, Chronic Pain Syndrome, and/or Chronic Fatigue Syndrome. Often all three at the same time and often exacerbated by Depression and Anxiety.

Wanna know what all of these have in common?  They are all based on self-report. There is no blood test or x-ray that can definitively say "You have Fibromyalgia".

A patient goes into a low-income medical clinic that accepts Medi-Cal and tells the Doctor, who has already "treated" 30 people that day in an effort to bill Medi-Cal for as many office visits as possible, how she has this pain that travels to different parts of her body. Doctor listens for about 90 seconds, dx's her with Fibromyalgia, prescribes generic oxy and sends her on her merry way. Go back in 3-6 months for another office visit to renew the RX.

It's time to apply for IHSS.

She's approved for 60 hours per month of IHSS because the Social Worker doing the assessment doesn't have time to do a thorough, accurate interview to determine risk and need and would rather just grant the application because it's easier and faster. And hey, the more open cases we have, the more job security we have, right? Right.

She is approved. She hires her daughter, her co-addict, or her boyfriend to be her care provider. The care provider turns in timesheets for 60 hours a month at roughly $10.00 per hour. She and care provider split nearly $600/month.

You gotta love this system. She just added $300/month to her $845/month SSI/SSP making her total TAX-FREE income $1145/month. That ain't bad for someone who only has to pay $175/month rent thanks to HUD/Section 8 and who now gets her drugs for free through Medi-Cal.

But wait, now she has a bunion on her foot. She needs more IHSS hours because it's harder to walk.

Now she has constipation and needs more hours because she has stomach cramps.

Before you know it, she has given herself a raise of $100/month.

I've seen this same scenario play out over and over.

7 comments:

  1. I know several neighbors that are doing this very thing! How do I report them? It's so frustrating because I've tried to no avail.

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  2. It is important that you know I am one who has been diagnosed. I have an auto immune My symptoms manifest themselves in the joints. Rheumatoid arthritis. While is can be debilitating I am NOT on gov assistance. Blood test DO SHOW all the signs. Auto immune diseases like lupus fibromyalgia and RA ARE diagnosed by blood test. Or at least I have been. My bones are disintegrating. Please understand the disease and those who suffer before you discredit them all

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  3. i have cfs/me/fibro and i can tell you that if i had a choice i would not want this disease. I am 20 years old and had to drop out of college becuases of this disease. I had dreams going to college and working, but now i can barely brush my own teeth. Do you really think this disease is not real? I can tell you right now it is not a "fake" disease. Just because the medical community hasn't found a cause or cure doesn't mean its not real. almost 90 percent of people with this disease have abnormal bloodwork- abnormal nk cell function low white bloodcell, multiple reactivated infections, gut disorders , abnormal emgs the list goes on and on. yeah, maybe there are a subset of people who use the guise of cfs or fibro and try to get a free check every month, but let me inform you that the real people dealing with this real disease are suffering everday. It is clear that you have never looked into or have done any research about this disease. Here is a video of a stanford medical doctor explaining the reality of this disease. http://www.youtube.com/watch?v=Riybtt6SChU. I don't think you will watch it because of how old this post is but maybe someone will watch it that has the same old mindset/thinking of fibromyalgia and cfs are not real diseases and learn something from it.

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  4. CFS has been found to effect the brain stem. The test can only be done during a post mortem, at present.

    The problem here in the UK is that $10 million was wasted on the PACE trial. This wasn't biomedical research rather a bunch of psychiatrists trying yet again to prove their buncum theories. That's where all the research money has gone

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  5. Hi there. Guess what? This is a real disease. I have it and have been unable to work for a year. I've applied for disability because I can't work, and have been denied on appeal. The scrutiny on my medical records and the high bar for getting disability for this makes me call bullshit on your post. It is NOT easy to get disability for this. Only about 10% of us who have it get any assistance for this condition.

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  6. Maybe you should refer to the IOM document that was written up after the government hired out to do an investigation on CFS to see what was going on: https://www.ncbi.nlm.nih.gov/pubmed/25695122

    Your views are insanely harmful towards a patient population who wants to do nothing but work, but continues to fall through the cracks because of this stigma.

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  7. I think the problem the IHHS worker identifies is true. There are a LOT of people who have nothing wrong with them and who are on disability + IHHS for fibro, CFS, unidentified back issues, whiplash etc. And I can understand that gets very frustrating when you yourself work a hard day's work.

    I do NOT believe the current numbers are real as I see quite a few people diagnosed with any of the above mentioned illnesses do all kinds of under the table paid work, which unfortunately make the people who truly have one of these absolutely debilitating illnesses unbelievable.

    And that is very sad. I worked since I was 13. Started my own company in my 20's and made a comfortable 6 figure income for 15 years. And then I got sick and never got better, resulting in a diagnosis of ME/CFS.

    I lost EVERYTHING, my 6 figure income, my marriage, my feeling of being useful and all my fun activities as I could no longer do anything but either lie in bed or spend a few hours a day on my recliner.

    I waited years to apply for SSDI as I always believed I would be better tomorrow. But that tomorrow never came. Then my doctor told me I would be wise to apply as otherwise I might no longer be eligible.

    We, my 3 kids and I, lived on my savings for 3 1/2 years before SSDI kicked in. All that money is now gone, money I had worked hard for and for which I had far different plans.

    So now the four of us live on less than 20% of what we lived before. I looked into IHHS as I get Medicare & MediCal. I waited applying for IHHS as am not quite sure why I get the latter as I receive more SSDI than the MediCal limit, but maybe it is due to dependents deductions etc. resulting in a taxable income below the MediCal limit? Am not quite sure, but I have contacted MediCal several times and they claim it is correct.

    Alas, for the past years I have paid for a caretaker out of my own pocket, but I am running out of money and SSDI is not a lot to take care of a family of four.

    I found out about IHHS and am thinking about applying. My CFS is not my only health problem, I have another health problem that 'looks' far more serious, but CFS is my most debilitating illness.

    There is no way I can clean my house, do the laundry, make the beds, cook meals, etc.

    Does the writer of this post truly believe I wanted to give up my upper middle class life to live on pennies and get IHHS just because I do not want to work?

    You have to be kidding. I would give my right (or left) leg to be able to get my old life back!

    So please, instead of blaming everyone, learn to decipher between the truth and a lie. And even then, please be careful. You're better off approving services for 10 people who don't need it, than denying it for one person who is in desperate need.

    I hope you read this. Just some food for thought.

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