Fibromyalgia long-term disability

Fibromyalgia is declared as a new long-term disability

After osteoarthritis, fibromyalgia is the second most common rheumatic disorder. Still, it is difficult to pick the fibromyalgia earlier, because its symptoms fluctuate.

This condition affects mainly women than men. It is characterized by the pain in all over the body accompanied by stiffness and fatigue.

According to Daniel Clauw, MD, professor of Anesthesiology, University of Michigan, explained that the pain is processed in an abnormal way in the fibromyalgia.

He further added that pain sensation is amplified and can occur anywhere in your body. Due to this reason, chronic headaches, sensory hyper-responses, and visceral pain are very common in people with fibromyalgia.

Fibromyalgia can also impair your functionality and can interfere with the activities of daily living.

Also, it is reported that people with fibromyalgia aren’t getting the services that they should need.

Swallowing the pills and implementing other successful strategies could be extremely helpful for controlling the fibromyalgia, but, as no cure exists for fibromyalgia, it’s difficult to completely eliminate this disease.

In several states, fibromyalgia has been considered as the long-term problem, decreasing the quality of life.

Why should fibromyalgia be considered as the long-term problem?

When the symptoms come and go, it makes the person much more exhausted and irritated.

Dealing with fibromyalgia sounds easier but people living with fibromyalgia would better understand that how they combat whenever the symptoms spike up.

The intensity and severity of the disease can leave a negative impact on your work performance.

While experiencing the symptoms of fibromyalgia, your desk job would be much more difficult than anyone’s expectation. Additionally, triggers can worsen your condition too.

The symptoms of fibromyalgia won’t let you excel more profoundly and somehow, you would prefer resting at home instead of getting to work.

Any long-term problem needs the long-term support and care. But unfortunately, the people with fibromyalgia don’t get the optimum level of attention.

Fibromyalgia is difficult to understand, not just because of its clinical signs, in fact, its relapse and remission phases are also confusing.

If you haven’t get the fibro flare up since a long time, you’re lucky, but it doesn’t mean that you won’t get flare-up again.

And when symptom spikes up, it is terrible to even think about doing any task, either it is related to your work or house.

Fibromyalgia is now a long-term disability

With the help of three-year efforts of patient and client council in Northern Ireland, the fibromyalgia has been declared as a long-term disability.

Now, the dedicated services can establish the trusts and centers for managing the fibromyalgia as a long-term condition.

Patients can get the medical advice and interventions from the medical care professionals.

Also, it is hard to decide which alternative therapy will best suit you to manage the fibromyalgia; so, you can also get the information regarding the therapies.

As pain is the major complaint of most of the fibromyalgia patients, most of the medications would be given to treat the pain perception; however, other symptoms are less noticed.

Increased awareness about the condition could help the earlier detection of this disease.

Also, if people around you, like friends and family members, are well-aware about the fluctuations of the symptoms and behavioral issues, then, they may provide you the higher level of comfort and can participate in doing household chores. Fibromyalgia awareness could make the life of the person’s easier.

It is also suggested that the relationships of the person with fibromyalgia might not be healthy with his colleagues, friends, and family. It happens because the people around you have little knowledge about this disease.

By increasing awareness programs, not only the person combating with fibromyalgia is educated, yet, the non-sufferers would also get the idea of how to deal the person with fibro, how one can help them and what let them feel better.

On the other end of the spectrum, the legal declaration of fibromyalgia as a long-term disability can also let the medical practitioner know more about this disease and suggest the effective drug for the ultimate suppression of the symptoms.

Availability of the fibromyalgia treatment is also a serious issue. In clinical practice, the availability of the services is not same due to the insufficient resources for targeting the specific population more efficiently.

People with fibromyalgia often feel isolated and alone. Their social isolation could be a barrier to getting the treatment.

Clinicians would find this very difficult to deal. So, clinicians should also welcome the sharing of information and knowledge from the patient.

Also, more researchers will be conducted to find out the ways that can improve overall health.

Long-term disability insurance and its benefits

According to Debilitating Diseases, It’s harder and harder to persistently do the work and remain in the workforce while battling with the fibromyalgia.

In fact, it also happens that people continue their work even dealing with the pain, fatigue, headache, and migraine occur due to fibromyalgia.

As long-term disability insurance is already available in several countries, one could be less worried about the financial burden of medicines, regular check-ups, and other expenses.

Symptoms of fibromyalgia can be disabling. On the basis of subjective complaints and physical examination, a doctor can verify and identify the fibromyalgia.

There are several types of long-term insurance disability available. But, you should have an idea about which long-term disability insurance would be good for you.

 Serious consideration leads to a better outcome

Fibromyalgia’s recognition as a long-term disability will surely increase the awareness and knowledge of the condition not only among the medical professionals, yet, the non-medical people will also know about the features of the fibromyalgia.

After diagnoses of fibromyalgia, the patient will get a pathway, through which one can get the complete information regarding medicines, exercise, and other alternative therapies.

Lifestyle changes could play a vital role in improving the condition of fibromyalgia. The management of fibromyalgia is a multi-disciplinary approach, in which every intervention has its own importance.

If you would neglect any one of them, the symptoms can be aggravated.

So, treating fibromyalgia is all about how efficiently the medical professionals picking up and treating the disease and how strictly the patient following the prescribed technique.

REFERNCES:

http://www.bbc.com/news/uk-northern-ireland-37424804

https://www.frankelnewfield.com/fibromyalgia-recognized-long-term-condition-ireland/

http://www.belfasttelegraph.co.uk/news/health/fibromyalgia-is-recognised-as-a-condition-35068733.html

http://www.belfasttelegraph.co.uk/news/health/fibromyalgia-is-recognised-as-a-condition-35068733.html

http://www.news-medical.net/news/20150518/Fibromyalgia-now-considered-as-a-lifelong-central-nervous-system-disorder.aspx

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66 Comments

  1. Im happy they finaly approve it. But is so crazy, I was lucky enough 10 years ago to get it at my first try. But after all does years my amount has been the same only increasments of $2-$5 in 10 years and I only get $496 per month who can live on that amount. So just imagine that in 10 years they only have increased my disability $ a total amount of around $80 so that this mean if is being agnolage as a real disabily for everyone who has Fibromyalgia they might give us a little bit more $ . thanks

    1. Bless you I know how you feel. I had my first hip replacement at 26 since then I’ve had 3 more plus, elbow, shoulder and jaw. I have chronic arthritis and fibromyalgia and I get £510 a month. That has to pay for bills, food, clothing. I would love to go back to work but can’t. But the amount to live on is a joke. Keep going my fibro friend

    2. I agree. I have worked since age 16. Dx with fibro in 2010. Been on short term disability and now on long term disability. I am now on social security disability and they give me 980 dollars a month. What a joke. I worked for the federal government for 13 yrs before I got sick. I thought i would get 50% of my wages. Shit. I went from middle class and struggling to lower class and barely living. Sad

      1. Me too, it says several countries, but that doesn’t mean the US is one. And I hate how when I bring it up to my Dr she looks at me like I’m stupid and doesn’t seem to care.

        1. If you haven’t already I’d recommend finding another doctor. Sadly there are still doctors that don’t believe Fibromyalgia exists, even though it’s been proven. I haven’t tried to apply because my husband still works and we are doing okay.

  2. This seems great news does anyone know how this would affect ill health retirement? As my company’s dr is saying it’s not permanent so I don’t fit the criteria? I’m in the uk, any advice would really help me Thank you

  3. I think I was born with FM. I can write a book of my experience. If any one needs to know, the symptoms at a very young age you can ask me.

    1. Hi Christine!
      I think I was born with it too! Lol (It is no laughing matter and I don’t take Fibro lightly) I’m almost 47 and was diagnosed around age 22. You are not alone!

      1. I got diagnosed this year after many of years being told its in my head and im young and healthy by my doctor, but it got to the stage I couldn’t cope with the pain, had mri scans came back fine and then had blood tests. Tested positive hla b27 and low iron levels but still not had proper diagnosis from that.. then finally got referred to rheumatologist after alot of stress trying to get the doctor to get a specialist and then I got diagnosed with fibromyalgia in August or September this year.

      2. Hey..i was diagnosed about 3 months ago but I feel like I had it forever. But I have 2 daughters but one is always complaining about something hurting her. What were your symptoms at a young age?. I get so worried she’s gonna get it

    2. Wow , I’m sorry Christine! I got my DX in 2012 from my family doctor here in the US. As far as I know here its considered a long term disability & with a fight you can get it, but I think you have to have either a RA Dr. or a neurologist give you the Dx. Plus make sure you don’t have lupus , RA or thyroid ( the only one my doctor tested for was Thyroid & I don’t have it ). Is the 3 main one’s. Anyhow Christine , I think I had fibromyalgia since I was a young girl now I’m 38, but it’s hard telling with my memory issues, not just from fibro fog but blocking a abusive past of physical , mental & sexual abuse. So I think my middle child Anna who’s now 17 has it. She has horrible periods, pain that last for more than 3mths on both sides of the body. Both outer hips & thighs hurt to the point you can’t touch, she has most of the tender points, emotional ( like me , I’m a highly sensative person )she doesn’t liked to be touched & clothing irritates her, anxiety , depression , doesn’t sleep well, back pain..

    3. ME TOO I’ve been denied and although I have a great set of meds trying too manage ptsd with out flares is next too impoasible..ple assad keep your faith..love through the distress and have support

    1. Steve my wife is fighting the DWP now over this now I cant leave my name as we are in a case now

  4. I too would be interested to hear how this affects I’ll health retirement in the U.K. My company dr tells me that as it’s not classed as permanent I don’t qualify for retirement .

  5. Fibromyalgia is not recognized in the UK, it is merely a ‘box’ that doctors put the patient in when no others answers can be found!

    1. Normally, from what my wife has found, is that it is normally the older generation of ‘Health Care Providers’ that look at FM like this. No such problem with her current GP, who luckily for her has done quite a lot of research into it.
      On a side note – Interestingly, we knew 2 people with FM, before my wife got diagnosed 6 years ago. She now knows another 10 people, that have been diagnosed (2 of which have been family friends for around 16 years. Also our 13 yr old daughter has recently been diagnosed with CFS (support from the school has been absolutely dire).

  6. my doctor recognized it and im in uk supose it depends on the doctor u see some just want u in and out as quick as like the first one i saw told me it was all in my head,next day saw a different doctor,he told me i have fibro,ostio artritis and something called eyrethromelelalgia that not many doctors know about its more the older ones coz they have been in the game longer,my advice if ya not getting anywere wiv ya doctor change to another one.

      1. There’s no blood test for it. It is diagnosed by certain points on the body that when touched hurt badly. At the moment only a rheumatologist can diagnosis it. A GP cannot.

  7. After years of pain, different dr’s. being told to lose weight, so I did. Exercise, I do. Physical therapy. I finally, just today, got a diagnosis of fibro.
    Oh blood tests that show nothing. My head is spinning

  8. I have fibro and was diagnosed 2 yrs ago now – was recommended ill health early retirement – so I applied and was turned down and not considered a permanent disability – with the next breath I was sacked for being too ill to work! I am just turned 60 yrs old and have never felt so ill.

  9. Im newly diagnosed and have been off sick since August. The pain isnt controlled with medications, there are days when I struggle to get out of bed never mind exercise! Ive been awarded disability but not mobility as they say I can walk up to 200m before am in severe pain….thats not gonna happen even on a good day! Its great that fibromyalgia is finally recognsed as a long term disability but is this in the uk too?

    1. I’ve just had my motarbility taken from me that I’ve had for 5 years as PIP say I can also walk. I told them I’m always in pain and don’t walk but they got their own answer out of that!!! I am appealing. It’s permanent and awful!!

  10. As far as I can see this has only been approved in Ireland and just recently USA although Ive read many there end up going to court to try & obtain disability as they’re finding it very difficult to prove they have fibromyalgia. Its a wretched condition, had it 14 years now. May I suggest you all go to the website Living Smarter with Fibromyalgia written by Lisa, a lady who has had this for 40years. Very extensive knowledge about Fibromyalgia incl. Symptoms, supplements, food, exercise & coping advice here. Everything you need to know & shes extremely supportive & helpful. I have no idea whether Australia will come on board with classifying Fibro as a long term disability. At present people are being put on Newstart which is a package for unemployed, which means fibro people are treated the same as unemployed et al expected to apply for jobs, maintain a diary and prove they have applied for work each fortnight, otherwise this benefit is cut. Wishing you as much wellness as you can muster fellow sufferers. My heart goes out to you

  11. I was recently denied for the third time in my life. I first applied in 2012, I can’t believe I didn’t get it this time. The system keeps saying I can work, cause I was in Law Enforcement for 26 years, so I can do a sit down job…..smh in tears, it crazy! I’ve been in pain since my early 20s but tried to keep working. I’m 45 now, I have DDD and Siactica too! I wish I could get more help!…….From Louisville KY (USA)

    1. I understand your pain. I live in Tennessee and have been denied , I think 4 times. They say I’m to young and can go back to school, get more training for better paying jobs, etc. I walk around feeling just dumb and stupid, like sometimes I just don’t get things. I work part time, and it’s hard, just to get up in the mornings. I’m late everyday and I wish I could hibernate for the winter. Much lunch to you guys. Sign up for some Fibro sites. It’s like a sounding board and post how you feel each day and just learn from people who really understands you.

  12. A have also been knocked bk for pip n have been bk in hospital 4 times since applying with flares and bowel problems a look 9 months pregnant doctors in hospital have said am showing all signs n put on to pain team but that’s a full year of being ill lost all my family n friends as they think am just being lazy am a total recluse now only go to chemist for meds feel like a old women even trying to lie down hurts xx

    1. 3 years ago I was having bowel problems and looked pregnant with ballooned belly. It turned out after 8 months of being miss diagnosed by my GP that I had stage 3 ovarian cancer. I don’t want worry you but I would ask you GP for a CA125 blood test.

  13. I was diagnosed about 2 years ago in the UK by the doctor and then the hospital. I have been on the CBT course which is very good all about managing the pain. I take a number of medication which has been given to me by a pain specialist doctor based In Macclesfield UK. I have seen physios to try and help and have just been referred for splints for my hands. Unfortunately you have to push for all of this but it is all available in the UK.

  14. I have been diagnosed with fb for over 4 years now. I still work great boss and team workers. I do the shifts I can. I do have pain 24/7. I have other symptoms saying the wrong word or not finding the word. Tremours which I was told had no connection to fb but have no answer to it. I am single and worry about my mortgage I rang up about what would happen if I finish work to be told it would not be covered by my ppi. Any advice welcome.

  15. I have had fibromyalgia since 1987 and is a disability. You have to have a positive attitude in dealing with this and after 30 years I have found a relief of lidocaine injections. I have taken pills, anti depressants but did not work at all. My flare up was at a 10 and after 2 injections my pain level is now a 6. Not out of the woods yet but having some relief in the muscles. The month of January and February or change of the weather to spring and the fall, rain or severe cold make my condition very tough to deal with. Now my other problem is my arthritis a separate issue and hoping that shots of lidocaine for knees and shoulders may help. This is the first pain management I have had in my life and looking forward to see my doctor to help me with my arthritis.

    1. Where do you get the shots of lidocaine? Are they to specific body parts or are they injections in your back for nerves?

      1. I had them about 6 years ago from a dr at a spine institute. They really helped for about 3-4 days. However, the pain would rear it’s ugly head after those few days. I drove an hour and a half for a year to get these shots. I finally decided I was putting so many toxins in my body for such a short amount of relief, i quit getting them.

  16. I live in Puerto Rico and have been disabled by the SS and sadly only receive $338/monthly because I’m under my late husband account until reaching my own benefits age. Fibromyalgia is a constant struggle with pain, stiffness, IBS, insomnia, chemical sensitivity and more. Actually using Lyrica, Cataflam and cannabis to ease the symptoms.

  17. Wow! I’m certainly not alone when I listen to all these comments. I was diagnosed with fibromyalgia after going three years back and forwards to my gp with severe pain. A rheumatologist diagnosed me the beginning of this year. I’ve recently had a fare up and the pain is unbearable, especially in my back. I have so many other things wrong with me too and I’m only 58. Just got to press on and pray I will get some respite soon.

  18. Hi all I was diagnosed in Nov last year have a lot of other things toon got my dla took off me in june last year and went for pip in Sept an got it back again for three years but that was before being diagnosed with fibromyalagia it is horrible I was told on Monday by my podiatry that I got 18 out off 18 points I said so what does that mean as no one has actually told me anything about it just told to look it up an that was it she said it’s really me as that’s what it was called back then but she said don’t quote me on it but that the way she looks at it what it is an said it is a horrible thing to have I said I know an laughed so hopefully it is for everywhere as it means might still get pip in 3 years time when I go again as the medical are hard enough xxx

  19. I was diagnosed with fibromyalgia about 3 yrs ago after being referred to rheumatology for psoriatic arthritis and now am told I have osteoarthritis in my hands few days ago I had a fall it was so painful and I was unable to get back up luckily my daughter and and a lady who was passing help me up but my ankle twisted and I found it really hard to stand my foot has swelled and is black and blue ex ray’s came back no brakes but so painful to try and walk I’m in the UK

  20. I also have fibromyalgia I am in pain 24/7 I can’t walk very far I also was up for my assessment for my p.i.p I have not got a letter yet to tell me if I have my money or not if they do turn me down I will reapply because I need the money to live on

  21. I was diagnosed with Fibromyalgia in2012 having undergone lifesaving surgery to have my bowel removed due to 6years of ulcerative colitis/Crohns disease . It took a Consultant Radiologist to diagnose me and thanks to a very understanding G.P. I have had great help from the whole team .But theres only so much they can do with the limited knowledge they have ,I don’t think enough research is being done in this area and as always the lack of finances doesn’t help .I did try Bareatric treatment which has had fantastic results for sufferers of M.S it consists of sitting in a decompression chamber along with others and being exposed to gradual depths as if you were in a submarine! the body being flooded with pure oxygen. I have been told its a great help but the pressure increase was very painful in my ears and sadly I had to give up. It can be sourced at the MERLIN CENTRE in Cornwall .If you are not diagnosed with M.S. then each treatment is about £11 which is excellent value for money . I feel so sorry for sufferers outside the U.K. who have no N.H.S.to help them . I do know that if a condition affects your mental health you will get more help financially, there is a bigger pot for that type of help should you need it and feel youre not being heard,good luck and DONT give up ,if need be change your doctor ,its your right as a sufferer to be heard and listened to and ultimately treated.

  22. It is only recognised by the social security system in the US as a long term permanently severely disabling illness. In the UK we are still in the dark ages apparently where half the GPs dont believe it exists or thinks that we are all needing psychiatric help. Im not kidding. It is so incredibly debilitating no matter how hard i try, and i do, if I push it puts me down. You have to learn to read it and then try and live in a way that doesnt flare it anymore than it does already. I wouldn’t wish my life on anyone. X

  23. I’m 42 from UK had fibro diagnosed bout 20 years ago now n currently having major flare mainly with severe headaches. I’ve applied numerous times for disability but always refused as I’m able to walk, wash myself n care for my daughter. I’m a single mum, kind of managing to work part time tho was sent home yesterday following an anxiety attack which I’m presuming was brought on by headache. I’m worried that I’m going to be off a lot more with these headaches as concentration is being affected n I’m getting quite irritated with colleagues. Wages just cover rent, council tax n bills n I’m currently living week by week off tax credits which doesn’t go very far in today’s climate. I’m glad other countries are now taking this disorder more seriously n just hope UK won’t be far behind but as the government seems to be cutting back on disability services I doubt very much this will happen any time soon.

  24. I’m in Alberta and cannot get any help ! Disabity Aish says I’m not qualified but my Doctor of years says I am and so did a Rhumatoligist ! I have also a disfunctional joint so I use cane !! Hard to get job I mean impossible !! Drowning in debt and depression on top of pain !!!

  25. I have been trying so long for help and understanding. Sleep is my biggest problem. And no one will help but as I always read up and research I know that sleep is a mean thing that you need for REM sleep and no one will help me with it. My pain is still present and I also fight to try to get my pain meds I don’t want to high not acking for to high because I don’t be addicted but to like a seven or something I’m on 5 milligrams I’m on 20 milligrams of Baclofen and I feel like still I’m driving and I don’t get any sleep like I said I’ve been taking my 5 Benadryl just 6 Benadryl night Gabapentin I’m on blood pressure decreasing medication to help me sleep. There to worried about addiction. I just want sleep. I wanted to try Xanax because I’ve read it helps a lot of people and it helps with the medications around as well. I tried antidepressants which don’t help me if I got sleep I wouldn’t be depressed it won’t have the anxiety and I feel better if they treat the anxiety and sleep I’m a hundred percent better and I can move around better nothing is completely gone but when there’s a drug that can help me sleep and be a miracle to my life and no one will give it to me and my doctor will not put me on disability witches crazy he said I only put you on temporary well that’s not going to help me I have 2 kids to raise and I can’t work my jobs that I worked as their hard labor jobs a contractor from factory work that’s all I’ve ever done so I’m struggling think time and I live in Rochester New York then it’s like nobody helps nobody wants to help and it sucks and you cry every night because there’s nothing you can do

    1. Hi Tracy I’ve been diagnosed with fibromyalgia as well also have been diagnosed with Lyme’s disease Bartonella and babisiosis. I have two daughters luckily they are both in college now I was able to get on disability the first time I tried and that was probably 8 years ago but like a lot of people said living on social security check is ridiculous when you think about the amount of medication you have to pay. The amount I pay for my medications each month actually cost more then my disability check. I feel fortunate that my mother and father have been able to help me and seek treatment for me. Treating fibromyalgia is kind of like treating Lyme’s disease. A lot of people that have fibromyalgia are sometimes misdiagnosed and actually do have a chronic Lyme’s disease. The one thing I did when I went for my first meeting to get my disability I copied every doctor’s note every blood work every x-ray everything and I brought it in a box with me and I said it on his desk and said here you go I got a call two days later that said he told me I was approved and was backdating it like 3 or 4 years. Once again I feel so fortunate and lucky that my journey through security and disability here in the United States was a positive one although not enough money but at least I know I have a set amount coming in each month. They also did put me on permanent disability. I hope and pray you get the help you need there are a lot of us out here dealing with these autoimmune diseases that people look at you and you look fine but the inside you’re dying. I have finally learned have to cover everything up and fake it, because people judge you when they don’t see if there’s a physical illness.

    2. Hi Tracie, we’re traveling a long, hard road but I hope I can help even a little bit. I was born and raised in NY, spent most of my adult life here. In addition to Fibro, I have Lyme Disease, MS(based on brain lesions seen on MRI’s), Osteoarthritis, Major Depression and Anxiety. I was finally awarded Social Security Disability in 2002 after being denied 3 separate times. Those 3 times I had applied on my own. After being denied, I’d heard talk about Social Security Lawyers. When it comes to Fibro or Lyme Disease, you have to have a Lawyer to obtain benefits. To my knowledge, the only time, benefits are automatically approved is if the diagnosis is end-stage kidney disease or cancer. This is why the Lawyer is so important. With SSD, you also need to have worked a certain amount of time in your life, paying into Social Security & Medicare taxes(like “on the books”). There are many Lawyers that specialize in Social Security Law, that should be available in the Rochester area. It’s better if you can get a recommendation from someone regarding a particular attorney they worked with. You do not have to pay them out of your pocket, they take their fee from whatever benefits you are awarded. Now, you have to get copies of your medical record with any tests and any specialists you’ve ever seen. These copies are given to your attorney for his review and what he/she bases your case on. You don’t have to have your doctor “refer you to Disability”, this process you can start yourself. Most doctors’ offices will charge you for copies of your medical records, I just want to prepare you for that. Most medical offices have their medical records phone number on the greeting you hear when you call, or just ask for it at the reception desk. When you have all your copies together you’ll bring them to your attorney’s office. Something to think about is, if you’re crying every night from pain, being discouraged, you need to be seen by a psychologist or psychiatrist. Fibro alone can give anyone major depression and/or anxiety. Having those diagnoses will help in your case, plus any medication you are prescribed. I just want to mention here about medications. Not all medications will work for everyone, some have strong side effects (not in every person). Different medications may have to be tried. I don’t want you or anyone else to lose hope when it comes to medications. It may take some time to find the right one(s). Also, Tracie, I’m concerned when you mention taking “5 or 6 benadryls” a night. Over the counter medications usually work well if taken correctly, according to directions or Doctor’s orders. Plus, in the case of benadryl, it only works to help you sleep when taken occasionally. Every night use, the help for sleep diminishes. Taking more capsules or tablets won’t help when taken so frequently. And you could be doing yourself more harm than good taking so many every night. I was a nurse until I went out on disability, just so you know. I hope that when you win your SSD benefits, you’ll be able to have them back dated also. I wasn’t that lucky despite fighting my symptoms so long, having plenty of medical records, being denied 3 times previously. Also, your monthly Disability benefit will be based on a percentage of your highest income. That may sound like a lot, but the average monthly Disability benefit comes out to approximately $1,000 something per month. I had to wait 24 months before I qualified for Medicare, parts A & B (one for hospital expenses, the other for doc appointments, tests, e.t.c.). So, if you have health insurance from yourself or your partner, don’t let it go if you can.
      I apologise for such a long post, but I do want to mention our current president & Congress would like to change our healthcare benefits, possibly doing away with Social Security & Medicare. Many of us are fighting these changes by signing petitions, demonstrating and so on. Most of us aren’t physically able to demonstrate, so I sign many petitions, send off emails to my congressional representatives. This may be a tough battle also. But Tracie, remember, you and I both paid our Social Security & Medicare taxes out of each and every paycheck, we should be entitled to them. Many politicians don’t agree. I highly recommend to you, to everyone, please get connected to a Social Security Lawyer ASAP and get your cases going.

      1. What ima learning is doctors must documentation the specifics and even though u may have a med regimen that often changes throughout your fibro journey they are too help u cope I soo need ssdi and I may be able to work part time…its been a very drawn out recovery process..the pain is real and narcotics help the most agree to be dependant and when the time comes u then add an antidepressant or anianxiety…the fatigue is extradraining..iam on cymbaltagabapentin and at one time nd contain and norco…i was diagnosed by a rheumatoid and Neuro..we are not lazy or crazy..im in prayer for you all

    3. Hi Tracie, we’re traveling a long, hard road but I hope I can help even a little bit. I was born and raised in NY, spent most of my adult life here. In addition to Fibro, I have Lyme Disease, MS(based on brain lesions seen on MRI’s), Osteoarthritis, Major Depression and Anxiety. I was finally awarded Social Security Disability in 2002 after being denied 3 separate times. Those 3 times I had applied on my own. After being denied, I’d heard talk about Social Security Lawyers. When it comes to Fibro or Lyme Disease, you have to have a Lawyer to obtain benefits. To my knowledge, the only time, benefits are automatically approved is if the diagnosis is end-stage kidney disease or cancer. This is why the Lawyer is so important. With SSD, you also need to have worked a certain amount of time in your life, paying into Social Security & Medicare taxes(like “on the books”). There are many Lawyers that specialize in Social Security Law, that should be available in the Rochester area. It’s better if you can get a recommendation from someone regarding a particular attorney they worked with. You do not have to pay them out of your pocket, they take their fee from whatever benefits you are awarded. Now, you have to get copies of your medical record with any tests and any specialists you’ve ever seen. These copies are given to your attorney for his review and what he/she bases your case on. You don’t have to have your doctor “refer you to Disability”, this process you can start yourself. Most doctors’ offices will charge you for copies of your medical records, I just want to prepare you for that. Most medical offices have their medical records phone number on the greeting you hear when you call, or just ask for it at the reception desk. When you have all your copies together you’ll bring them to your attorney’s office. Something to think about is, if you’re crying every night from pain, being discouraged, you need to be seen by a psychologist or psychiatrist. Fibro alone can give anyone major depression and/or anxiety. Having those diagnoses will help in your case, plus any medication you are prescribed. I just want to mention here about medications. Not all medications will work for everyone, some have strong side effects (not in every person). Different medications may have to be tried. I don’t want you or anyone else to lose hope when it comes to medications. It may take some time to find the right one(s). Also, Tracie, I’m concerned when you mention taking “5 or 6 benadryls” a night. Over the counter medications usually work well if taken correctly, according to directions or Doctor’s orders. Plus, in the case of benadryl, it only works to help you sleep when taken occasionally. Every night use, the help for sleep diminishes. Taking more capsules or tablets won’t help when taken so frequently. And you could be doing yourself more harm than good taking so many every night. I was a nurse until I went out on disability, just so you know. I hope that when you win your SSD benefits, you’ll be able to have them back dated also. I wasn’t that lucky despite fighting my symptoms so long, having plenty of medical records, being denied 3 times previously. Also, your monthly Disability benefit will be based on a percentage of your highest income. That may sound like a lot, but the average monthly Disability benefit comes out to approximately $1,000 something per month. I had to wait 24 months before I qualified for Medicare, parts A & B (one for hospital expenses, the other for doc appointments, tests, e.t.c.). So, if you have health insurance from yourself or your partner, don’t let it go if you can.
      I apologise for such a long post, but I do want to mention our current president & Congress would like to change our healthcare benefits, possibly doing away with Social Security & Medicare. Many of us are fighting these changes by signing petitions, demonstrating and so on. Most of us aren’t physically able to demonstrate, so I sign many petitions, send off emails to my congressional representatives. This may be a tough battle also. But Tracie, remember, you and I both paid our Social Security & Medicare taxes out of each and every paycheck, we should be entitled to them. Many politicians don’t agree. I highly recommend to you, to everyone, please get connected to a Social Security Lawyer ASAP and get your cases going.
      This is the web address for Social Security here in the US:
      https://www.ssa.gov/disability/

    4. Get to a sleep disorder specialist. There are things you can take that will help you sleep that are not opioids. I have Fibro and Narcolepsy. Amazingly enough, one of the problems with narcolepsy is also developing insomnia, so there are trials available for sleep meds that people dealing with high levels of pain qualified for that my neuro put me on and I was finally able to sleep (at night)! Staying awake, that however, remains a problem! Good luck to you.😊

  26. Well what’s aggravating me a lot lately is this “opioid epidemic” so the people like myself and others who NEED the medication and makes us to get the treatment we desperately need harder to get!! It makes us look like we also are abusing medication. We sometimes need it just to FUNCTION!! I so wish people would more understand where we are! Not only are we dealing with doctors and others looking at us close but always the physical and mental anquish is VERY HARD to deal with as well!! I mean, we are are being looked at under a microscope and then you add the physical pain AND the mental disorders that come with it!! Sometimes I wonder how in the world 🌎 we can breathe under all this!!

  27. Can I ask what u mean by the 3 tests ie. Thyroid..as I have fibro and hypothyroidism due to thyroid cancer and removal of thyroid. Thanks!

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