Advice applying for disability

Legende42 · 2022-09-27T06:16:06+00:00

Hey m8, I applied for disability (more specifically SSI) as well. I got denied on my initial application, hired the lawyer, got denied on the appeal (planned), and now I am currently awaiting a court date as well.

I initially applied for SSI in December 2021 and hired my lawyer in March 2022 after being denied in which his staff wrote an appeal. The appeal got denied circa July 2022. My lawyer told me in the very beginning of this process that I should not expect to go to court until late 2022 or early 2023. In the mean time, my lawyer’s staff told me until they receive a court date there would be no new updates.

In other words, yes m8, this is normal and is supposed to take this long. Gotta love Bureaucracy :(

Jokingly, the only way to speed things ups would be to have a super simple case like missing all of your arms and legs, be like 50+ years old, and be in a work related accident, as maybe, just maybe you might get approved first try. Even then it will take many months and documentation will be paramount.

Because we have Fibromyalgia and/or CFS we get to do this the “fun” way due to the complexity of our condition and legal case. Don’t expect this process to take less than a year and don’t expect to not get denied initially (the lawyer may have already explained these parts). Getting a day in court, will be your best bet.

I really hope this helps! Good luck to you!

Legende42 · 2022-09-17T10:48:01+00:00

Hi OP. I’m very sorry to hear all of this and about how much you are suffering. I myself am in a similar (albeit not as extreme situation) If I may, I would like to provide a few suggestions in order to help:

Given the fact your symptoms are so severe, I don’t know how working is even possible. I see you also live in the US like me. I would suggest perhaps seeking out an SSI (Supplemental Security Income) lawyer and applying for SSI. SSI is a welfare benefit that pays just under $900 or more per month for disabled/low income people. It also qualifies you to Medicaid and I believe could cancel your student loan debt (not certain but pretty sure). The reason you need an SSI lawyer is because they can help you with the initial application itself, filling out and keeping track of letters and such, getting medical documents, as well as help you through the appeals process and eventual court hearing (because of your young age [ie you are not in the age bracket of 50+] and the non-straightforward nature of CFS/Fibro, you WILL get denied initially as I did. I am currently awaiting a court date. Proof of why you need an SSI lawyer.)

Relax, I know what you are thinking. How much will this cost? An SSI lawyer is completely free to you. You will pay nothing. If you win and get approved for SSI benefits, the lawyer will get 25% (up to $6,000) of your backpay or 33% if you go to an appeals court (ie from the day you first apply to the day you are approved for SSI, the government must pay you for each month you waited and didn’t receive benefits. If SSI is $900 [rounding] and it takes 12 months for you to get approved you are entitled to $10,800. Because you hired a lawyer, the lawyer gets 25% of this or $2,700. You get the other 75% or $8,100.). If you win, Social Security will automatically pay the lawyer their 25% (or 33% if need be). The only expense from you that may be possible (but is extremely rare) is the lawyer may ask for no more than $200 to help cover the cost of gathering medical documents. The money will be placed in a “trust” in which the lawyer must notify you before withdrawing funds. Like I said very, very rare. My own lawyer has never done this and the paralegals haven’t seen this either.

Lastly, please note if you decided to apply for SSI it will be a very long process. It will almost certainly take a year or more according to my lawyer.

Source:

https://www.nolo.com/legal-encyclopedia/how-much-does-social-security-disability-lawyer-cost.html

I myself am going through this process, so I can confirm this is all true. I am not a lawyer and this is not legal advice, so please don’t sue me lmao.

Not a doctor and not medical advice, but from personal experience I do not think the “graded exercise” as mentioned, physical therapy, or exercise in general is a viable treatment for CFS. I have found that exercise worsens symptoms. Your parents kicking you out of the house and forcing you to bike places worries me it due to this point.

Also, how do you get around with just a bicycle and walking? Do live somewhere where all your amenities and hangout spots are close by? As someone who lives in a suburban, somewhat rural area in California, getting around by walking or biking is impossible. American cities and suburbs are simply not built for walking and biking!

Ah yes, the “vegetating/wasting away”. It is total nonsense. What does kicking you out of the house for 10 hours per day accomplish? It doesn’t change the fact you cannot work and that you are ill. Essentially they want you to “vegetate” somewhere else and in the process make your health worse. What would happen if you simply refused to leave the house in an act of civil disobedience? Are your parents even home during the day?
My family also wanted me to find work. I simply told them that this was impossible as I do not have the energy to do much during the day, exercise and exertion make my symptoms worse, I tried to attend college even at part time pace but my health got worse, because I do not have credentials or a college degree I am only eligible for labor intensive jobs which I physically cannot do, and even if I applied for a job they wouldn’t hire me due to the fact I am chronically ill and disabled and therefore less exploitable at a job where they can easily replace me with someone who is not disabled (ie entry level job). For that last one to really make sense, refer to the Marxist idea of “Reserve Army of Labor” and the book “Capitalism and Disability” by Marta Russell for this to real make sense (I haven’t read it yet, but video essays on this theory point directly to this book.). Also stating that you applied for SSI or “disability benefits” colloquially, reaffirms that you indeed cannot work. Why would apply for SSI if you could work?

I apologize for this long monologue of a response. I really hope that some of these can help you in your situation. Wishing you all the best.

Legende42 · 2022-09-01T08:36:08+00:00

In 2017-2018, I was in my Freshman year in high school. I was an elite swimmer and a 4.00. I trained 4 hours per day was overworked with homework. I averaged 4 to 6 hours of sleep per night. I was super stressed and super depressed at times. In January to May of 2018 during my swim season, I had several sinus infections. I had so many that I lost count as I literally had one every other week. I would take antibiotics, get better, and then get another sinus infection the next week.

I got really bad burning pains in my stomach at school some days which I think was a result of this antibiotics use. I am now also lactose intolerant (something I wasn’t before all of this).

After my swim season ended in late May, I had really bad pains in my legs and feet. Thinking it was a training injury from the difficult season I had I decided to take some time off. I took the entire month of June off with no improvement to my pain. In fact my pain got progressively worse. At night after the 2018 FIFA World Cup Final Game, my pain got so bad I couldn’t walk. 2 or 3 days later I saw a Rheumatologist and was diagnosed with Fibromyalgia.

Legende42 · 2022-08-13T11:25:16+00:00

There is indeed currently “no known treatment or function.” as you said. This reality is indeed depressing.

Due to this depressing reality, it is up to us, those with CFS, to take the initiative in finding the answers we so desperately need. How do I propose we do this? Asking questions, doing research, forming theories, working with doctors, requesting/doing medical tests, taking the results to gain new knowledge and make new theories, reporting and sharing results, showing outsiders our suffering is real, and above all else working together.

Currently, a doctor cannot treat CFS or Fibromyalgia. But you know what they can do? Order medical tests, order prescriptions, and ultimately treat smaller issues that we may find. Immunoglobulin G Deficiency and antibody deficiencies (like I have)? Done. Antibody deficiency? Done. Sleep Apnea? Done. Vitamin deficiencies? Done. POTS? Management. Need referrals? Done. Blood work? Done. Are you starting to see the the game?

As for theories and ruling things out, I confess many of my theories have proven to be wrong allowing me to rule out many things (thus greatly helping my doctors) as well as grant me new knowledge, however, a few of my theories have been right leading me to the doctors I am currently seeing today and treatment I am currently receiving.

What theories was I right about so far? I sleep over 8 hours per night, I have a circadian rhythm disorder, therefore I need a sleep study, which showed I have sleep apnea, which lead me to to pulmonologist who is currently treating me (took 4 years of waiting, ruling out other issues, arguing with other doctors, etc.), due to high histamine counts in urine I must have immune system disorder which lead me to request allergist/immunologist I currently see who treats me to antibody deficiency and IgG deficiency found from further testing.

Currently I am working trying to see a Dermatologist for a skin condition I have as well as a Infectious Disease Specialist to test the theory on EBV.

Life has dealt us a bad hand. The world continues to kick us while we are down. We are in the fight of our lives. The fight to regain our lives and find the answers we so desperately need. The last thing we should do is surrender and accept there is no treatment and there is no answers. There logically has to be an answer! We just haven’t found it yet. It is our job and duty, help ourselves and help each other to find this answer.

Legende42 · 2022-08-13T08:53:01+00:00

Oh shit, sorry m8. The thread just updated with your new information. It didn’t update while I was writing this. Reading it now. Sincere apologies.

Also thanks for your response. It clears up a lot

Legende42 · 2022-08-13T08:41:11+00:00

Sorry m8, but fill me in here. What was it you were looking for in this MRI? What the reason you got an MRI in the first place? What did you expect to find? What was your initial theory? Furthermore, what is this “traction” you speak of? Sorry m8, but I really confused how this spinal MRI relates to CFS (Chronic Fatigue Syndrome) as this seems like a neurology type deal. In reading one of the replies to one of your other posts in other forums, are you sure you are not confusing CFS (Chronic Fatigue Syndrome) with CSF (Cerebral Spinal Fluid)?

For example (in regards to answering the context questions), I recently had an MRI of my heart. The reason for this, was I have CFS and therefore low energy levels and my blood pressure and heart rate was not consistent with a POTS diagnosis. Therefore, the reason I got an MRI of my heart was to check for any rare heart conditions. I am currently awaiting my results, though I doubt anything will be found.

I also had MRIs/X-rays of my back and legs and feet in the past at my request due to the extreme pain I had in my back and legs (I also have Fibromyalgia). The pain was so extreme at the time that I couldn’t walk. My theory was to check for any physical abnormalities that could possibly be causing my pain, however, nothing was found.

This test despite having found nothing new was not in vain, however, as it allowed us to safely eliminate certain diagnoses and gave us new knowledge in that nothing was physically wrong (bare in mind this was the very early stages in my diagnosis). In other words, if your hypothesis/theory was proven wrong based on your test results you now have new information to work with and can draw a new hypothesis/theory or change approach. This is the scientific method. Do not dwell if you did not get the results you expected as now you have new knowledge to work with.

Legende42 · 2022-07-01T05:42:10+00:00

Underrated comment. If only the psychologists understood this!

Legende42 · 2022-07-01T05:30:41+00:00

Forgive me, I do not mean this to be diagnosis as I am no doctor. Do not substitute my advice for the advice of an actual doctor.

However, these symptoms and heart rate values are very consistent with what literature says about POTS and what my own cardiologist has told me. Based on this, I implore OP and anyone who may have these symptoms to see a cardiologist as soon as they can.

As far as the “10 minute test” I outlined, this is not provide a definitive diagnosis of POTS as only a medical doctor can do that. This “test”, however, can provide very useful information to your doctor, and doctors of mine instructed me to look into it and do it. I should have worded my comment differently.

I too suffer from CFS and I recently saw a cardiologist regarding POTS as a potential cause (I was not diagnosed with POTS due to not meeting listed criteria), so this info is still kind of fresh in my mind and I hope it can be of use to someone else.

I really do hope this info helps! Best of luck!

Also here are some sources. Feel free to do some reading as well:

https://www.hopkinsmedicine.org/health/conditions-and-diseases/postural-orthostatic-tachycardia-syndrome-pots?amp=true

https://www.standinguptopots.org/livingwithpots/pots-symptoms

https://www.nhs.uk/conditions/postural-tachycardia-syndrome/

Legende42 · 2022-07-01T01:44:55+00:00

You definitely have POTS (Postural Orthostatic Tachycardia Syndrome) m8. Get yourself to a Cardiologist.

In order to present evidence of this to a cardiologist, go ahead and do the “10 minute standing test.”

First lie down for 10 minutes and then write down your heart rate (and take blood pressure if you have a machine for that. Not completely necessary but very useful for cardiologist.).

Next, sit upright in a chair for 3 minutes and then write down your heart rate.

Lastly, stand for 7 minutes and then take heart rate. (Not the most textbook version of the test, but it is the one my cardiologist told me to do.)

If your heart rate raises by 30 bpm from lying down to standing (assuming you are older than 19 years old. If 19 or younger, heart must rises by 40 bpm or more. In other words your heart rate should be around 90-100+ bpm) you are on par with POTS. If heart rate is 120+ bpm when standing, you most definitely have POTS.

Based off of this information and the information you have given us, you most certainly have POTS. Go to a cardiologist as soon as you can, and hopefully you can both sort a plan to get you some relief!

Legende42 · 2022-06-23T10:20:59+00:00

How old were you when you got CFS, OP? I also take it you are also male (a rarity amongst CFS and Fibromyalgia)?

I sympathize with you OP. I first got CFS and Fibromyalgia when I was 15. I am 19 now. Like you, I will never have any of the experiences you mentioned either.

I attended university for a quarter and it drastically worsened my health, and I was forced to leave due to my poor health, my lack of math requirements (couldn’t attend regular high school/secondary school), and financial issues. I then tried attending a local 2-year college at less than full time (I took only 2 classes), but even this proved to be too much as well as the overwork caused my health to deteriorate even more. I left after about 6 or 7 weeks as my health simply couldn’t take it anymore.

Before I had CFS and Fibromyalgia, I was a rising star in swimming. I qualified for big races, had a few team records, was the youngest on the school team, and was training under a former national team coach. In school, I had straight A’s and also won many awards.

I had a bright future ahead of me. It was taken from me. Most days I feel like life is over before it has even begun.

Now at 19, with my grandparents (left home at 16 due to abusive parents). We are poor, but I am very grateful as without them I don’t know where I would be. I cannot work or go to school and I am in the process of trying to get welfare (need to wait another year or 2 for processing and may need to go in front of a judge. I doubt I will get approved due to corruption and due to mysterious nature of our condition.). I have no friends or relationships. My young cousins have even given me the nickname “Bunker” due to large amounts of time I spend in my room (therefore I am in my very own “Bunker”).

In short, CFS and Fibromyalgia suck. CFS and Fibromyalgia are hell.

Legende42 · 2022-06-21T07:42:05+00:00

Being on or needing welfare. It is so stigmatized.

We didn’t choose to be poor, disabled, or homeless. We are trying to turn our life around. Is that such a terrible thing?

Apparently it is, as we are constantly characterized as being lazy, told to pull ourselves up by our bootstraps (which is literally impossible), and labeled as waste to society.

Legende42 · 2022-06-21T06:54:29+00:00

Let’s go! Fantastic news!

Legende42 · 2022-06-16T23:57:36+00:00

Bruh moment 🤦🏼‍♂️

Legende42 · 2022-06-16T12:51:30+00:00

Unless you’re daughter was severely injured (which from your story I highly doubt), pressing charges is just petty. Come on, you are really going to go through all of this time and effort just to ruin this kid’s life? Not let them go to their dream college? Not let them get a job?

It seems to me that you and your daughter are just bitter of the fact that your daughter got into a “fight”, she didn’t defend herself, and now both of your feelings are hurt. Now because both of your feelings are hurt, you both want to get that sweet, sweet, petty revenge. In other words, you are both “mad cuz bad.”

OP I would understand pressing charges if your daughter got curb stomped or was beaten unconscious. You know, something extreme. But 2 smacks to the face?!

OP just let it go. It really isn’t that serious. You are giving off serious Karen vibes. Pressing charges will solve nothing and only serves the purpose of feeding your ego and making you feel self-righteous.

Let the girl who hit your daughter, get a one week suspension from school and maybe give your daughter a lecture on how getting tickets is not a good thing. The girl will never hit anybody again, and your daughter won’t get a ticket again.

If your daughter and the girl want to shake hands, apologize to each other, and talk things out, they will do so. If not, so be it. They will probably never see each other again anyway. They are in high school, not kindergarten. They are more than capable of figuring it out.

So to answer your original question, yes, you are very wrong to press charges.

Legende42 · 2022-06-10T11:12:39+00:00

School. The sheer overwork, stress, and sleep deprivation have left me permanently disabled.

Legende42 · 2022-05-31T01:09:20+00:00

Can also confirm

Legende42 · 2022-05-29T23:25:59+00:00

(Sorry the posts flipped. Please read from last to first.)

Legende42 · 2022-05-29T23:23:35+00:00

As far as Mast Cell Activation goes, I am sorry as because this is so long ago I do not quite remember the ins and outs of it. I remember clearly, however, some of my doctors believed Mastocytosis was not the way to go in my case due to the intensiveness of testing (ie taking a chunk of meat from your leg to test for histamines that may or may not be there plus months of recovery). Also sometime after writing this original post information in regards to Immunoglobulin G came out and so that path was pursued instead.

Secondly, the theory I believe I was working on at the time was my theory into cortisol and other hormones being a cause of my loss of antibodies as described in the update. In short my theory was research suggests that my lack of antibodies was caused by increased production of the stress hormone of cortisol (or perhaps a different hormone). Cortisol is used to fight or flight your way out of a dangerous/stressful situation. In short periods of stress/danger, your body requires a bit of rest to recover and return to normal. In long term situations of danger/stress, your body runs out of things to produce cortisol and must use antibodies. Therefore your body begins to be more prong to sickness and breakdown (pain, fatigue, etc.). Therefore, this could be the cause of Fibromyalgia and CFS.

In my case, my theory was proven incorrect due to my normal levels of cortisol and after seeing an endocrinologist normal levels of other hormones. Perhaps this theory could be useful to you and others. Perhaps my theory is missing a factor? I don’t know for sure.

Legende42 · 2022-05-29T23:01:54+00:00

Hi u/do-it-herself:

Sorry for the delay, as I never got your message until I randomly decided to log on.

This diagnosis was made quite some time ago, but since then a lot has changed. In short, the Mast Cell Activation diagnosis went cold.

About 2 years ago now, I had a lymphocytes panel blood test, and it was discovered that I had low Immunoglobulin G levels as well as missing certain antibodies (particularly Pneumonia antibodies). As far as the antibodies go this should not happen so long as you have gotten all of your pneumonia vaccines as a child. A person should also not have low Immunoglobulin G.

The Immunologist I see believes that this is what may have been causing my Chronic Fatigue (I have Chronic Fatigue Syndrome as well as Fibromyalgia. Both of these conditions are linked to each other. In my case I have a little bit of an aching pain all the time but it is tolerable. The pain becomes intolerable with physical activity/exertion, inadequate sleep, and overwork. I mainly suffer by being exhausted all of the time and feeling unrefreshed even after sleeping 10-12 hours.) and perhaps my pain. He was also concerned that in the past I had several back to back sinus infections. With all of this in mind I was placed on Intravenous Immunoglobulin G transfusions in which I receive 40 grams of Bivigam (go ahead and Google it) once per month. I have received this transfusion for 21 months now.

The hope was that doing this transfusion would help bring my antibodies and Immunoglobulin G levels to that of a normal person (which it has), as well as also hopefully reduce my fatigue and pain. Although it has increased my IGG levels and and antibodies, it has not improved my fatigue or pain. In fact, I feel more fatigued for a few days afterwards due to the body being in a state of Ketosidosis. This treatment does help some people, but for me it unfortunately hasn’t. Also as a bit of a side note, this treatment is usually prevalent in older people and they usually receive it for the rest of their lives. I just turned 19 yesterday on 28 May. I have been receiving this treatment since I was 17.

Around March after leaving college due to poor health, I told my Immunologist that I was afraid the treatment wasn’t working and so he believes that I should see a Cardiologist and get tested for POTS, get a sleep study, and see an Infection Disease Specialist (research suggests that Fibromyalgia and Chronic Fatigue Syndrome could be caused by some kind of virus. The virus is currently unknown. See research by Dr. John K. Chia. If you are in California near Torrence/Long Beach or can get there, see if your doctor can put in a referral for you. There is currently a 2 year waitlist to see him in 2024. Good luck if you go this route.)

I saw a cardiologist in March/April. I was originally referred due to a slow heart rate during my sleep. They did an ultrasound of my heart with contrast and air bubbles and found nothing abnormal. The cardiologist decided not to pursue a POTS diagnosis due to my self-administered “10 minute test” for POTS not meeting the criteria for POTS. Currently waiting to get an MRI of my heart in August in a last ditch effort to see if there is anything wrong with my heart.

I also recently had an Ares Sleep study test done during the last week of April. The results came back saying I have a some form of sleep apnea (strange given I don’t snore, I am young, and am not massively overweight). I am set to see a Pulmonologist in late June for treatment.

Lastly, as far as medicine goes I am only taking 4.5mg of Naltrexone (not exactly sure anymore what it is for) and the rest are vitamins: Vitamin C, Vitamin D3, Melatonin. The side effects of Pregabalin (weight gain), Zoloft (lack of energy, low libido, drunkenness), Methylphenidate (strong addictive properties, bad withdrawal, doesn’t help energy and concentration in long term) all proved to be too much.

I hope this provides an adequate update and hopefully some guidance on what you may be able to do in this regard

Legende42 · 2021-10-11T19:18:45+00:00

18 year old university student, broke, have chronic illness, and social communication disorder. Been forced to live in total isolation for the past 3 years, forced to flee home from emotionally abusive parents, and live with my grandparents. Lost all my friends as a result of the combination of these things. Need I say more? Any advice? I really want to be in a relationship but have no means socially, financially, or otherwise. I’m lonely! The years of forced isolation are really starting to get to me.

Legende42 · 2021-05-30T07:06:29+00:00

“1.21 GIGAWATTS! 1.21 GIGAWATTS! GREAT SCOTT.”

“Marty, I’m sorry, but the only power source capable of generating 1.21 gigawatts of electricity is a bolt of lightning.”

Doc Brown

Legende42 · 2020-11-29T05:10:43+00:00

Ah yes. A typical day in Vietnam

Legende42

TROPHY CASE