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Old 06-08-2012, 08:07 AM   #1
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Diagnosed with CFS and Fibromyalgia due to EBV, is SSD possible?

I was diagnosed over nine years ago, by a specialists, with Epstein-Barr virus and all the wonderful problems associated with this virus, such as Chronic Fatigue Syndrome and Fibromyalgia. Since that time, my general practitioner has followed the advice from said specialist by continuing and monitoring the medication regimen prescribed at that time. Some pretty heavy duty meds. I have deteriorated over the years, and now have been diagnosed with Ventricular Tachycardia and Aortic Valve Regurgitation. I had to quit my job in 2003 due to the EBV medical condition and never applied for disability insurance. I have been unable to work since 2003 and need to apply for disability now. Does anyone know if this condition will be approved? Can anyone help with a sample letter from a doctor, to Social Security outlining why I have not, and cannot perform duties required to hold a job?

I think doctors are stymied when it comes to this disease and how it effects our daily activities. My doctor agrees that I am unable to work, but I think he is confused on what exactly to say in order to meet approval from the government. In addition, he is foreign and I truly believe he has a real fear regarding governmental issues. I do not want to make a mistake and/or be denied due to ignorance or fear. I had worked from the age of 14 until 41. I no longer feel guilty about applying, as I cannot hold a job, and no longer have a spouse for financial support.

I am in dire need of help, and/or direction with the disability process. Please!

 
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Old 06-08-2012, 09:25 AM   #2
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Re: Diagnosed with CFS and Fibromyalgia due to EBV, is SSD possible?

Hire a disability lawyer. They don't get paid until you are approved of disability. They can get all the paperwork needed and forms that your doctor needs to fill out.

 
Old 06-08-2012, 09:26 AM   #3
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Re: Diagnosed with CFS and Fibromyalgia due to EBV, is SSD possible?

Hi and welcome to the boards. I live in Ireland, but I think similar conditions apply to getting state financial support. I struggled with keeping down full-time job and went to part-time and eventually was not physically or mentally able to work anymore due to fibro and all that goes with it. My doc was a great support to me and had been encouraging me to stop work long before I finally gave in. He knew from other patients that I would be turned down for disability payment if he put fibromyalgia as my illness. Instead he listed all the symptoms as the reason for not being fit for work. I was shocked when I saw this lenghty list of illness and I even questioned my doc about how he could exagerate my symptoms on a government application. He went through each one with me in detail and it was all accurate. as usual, I was just in denial about how bad I was. I was approved for disability payment and have since been approved for a permanent disability pension. That means I have it for the rest of my life. It is not a fortune, but it is guaranteed money every week, without having to worry about being cut off.
I hope this is of help to you and good luck.
brend

 
Old 06-08-2012, 09:40 AM   #4
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Re: Diagnosed with CFS and Fibromyalgia due to EBV, is SSD possible?

I thank you for this information, and figured this would be the situation. I was in denial as well, however, no longer now that my heart has become an issue. My fear is that he will not describe my condition properly. He has been building his business for the past three years, and does not like any complications. Do you think I should outline these symptoms for him? I have obtained a lawyer, a rather large company in the USA, and am not pleased. I have been told they only take the easy cases. Now they are telling me it may be too difficult because I waited too long. So now I'm being penalized for not taking advantage? Do you know which symptoms your government took most seriously? Other than constant pain requiring MS Contin, constant fatigue, anxiety from pain (crawl out of skin anxiety), or memory impairment from lack of concentration? Am I on the right track? Thank you again, I really need help and feel frustrated, which only increases my pain and fatigue!!!!!

 
Old 06-08-2012, 09:44 AM   #5
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Re: Diagnosed with CFS and Fibromyalgia due to EBV, is SSD possible?

Thank you for your post. I did contact Binder and Binder. At first they were very excited to take my case. Retroactive and all. Now they are telling me it may be very difficult because I possibly waited too long to apply. They also said it will all depend on what my doctor writes in his letter. Thank you again!!!

 
Old 06-08-2012, 03:26 PM   #6
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Re: Diagnosed with CFS and Fibromyalgia due to EBV, is SSD possible?

You are pointing out the obvious symptoms, just like I was doing with my doc. It was he who pointed out more serious symptoms, the loss in motor function abiliity, rather than a vague statement like constant pain he broke down in medical terminology the pain associated with the various parts of my body. He also used terms like clinical depression rather than anxiety. I had not realised or maybe admitted to myself that I was and am suffering from depression. One of the symptoms I have had is my immune system was and is very low. If I get a cold it will always end up in a chest infection. If I get a small cut, unless I am very careful it becomes infected. My doc, in his report, referrred to this as regular and consistant respitery infections that have proven to be impervious to most anti-biotics. He also referred to dermal infections showing similar resistanse to anti-biotics. What I am trying to say is that it requires you and your doctor being open and honest about your symptoms and then he can use the proper medical terminology in his report.
Brend

Last edited by brend; 06-08-2012 at 03:28 PM.

 
Old 06-08-2012, 05:01 PM   #7
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Re: Diagnosed with CFS and Fibromyalgia due to EBV, is SSD possible?

Please don't stress, only makes you feel worst...
I have a company doing everything for me. I originally applied for myself but when through a horrible flare & knew I couldn't do it... So I sit back & let them do the work...
I'm in the 3rd phase, had 2 denials & now waiting to see a judge. I try not to think about it at all. Only when I need to go online & update my dr appointments & stuff. I figure that if I get denied again, I'll just keep going for it untill I get it. No other choice if you can't work...
Have you applied for SSI? I believe that's what it's called... My husband makes too much $ for me to get it but I believe it's easier to get...
__________________
~♥Tori♥~
Fatigue & Derealization (PTSD?) 1999
Hypothyroid~ 2003
Back injury~ 2005
Severe Degenerative Disk, Arthritis, Mild Scoliosis.
Fibromyalgia diagnosed 2009
Neuropathy
Migraines?

 
Old 06-09-2012, 06:29 AM   #8
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Re: Diagnosed with CFS and Fibromyalgia due to EBV, is SSD possible?

Brend,

You just described my own symptoms and problems with infections perfectly. I couldn't have said it better. In fact, my medical records read like your messages! I am so sorry you have to deal with this crap as well, and I find that I have shut myself off from the "normal" population, due to their misunderstanding, and/or ignorance of our disease. That, and is it possible that I'm too tired, or don't have the energy to deal with any drama. Prior to finding this site, I thought that maybe I did something a hundred years ago in college to cause all of this!!! Was a bit wild, but it did not last long, it was the 70's! I'm glad I wrote (something I never would have done without SSI troubles). You have given me such great direction and I have already started on a symptom check list. Also, thank you for reminding me of the dermal infection I have had for years, diagnosed as Shingles, now unknown dermal infection! I truly don't like to talk about "sick" too much, but have received a wealth of information in the last two days. I need to be reminded of all the "sick" issues dealt with in the past now. I can't thank you enough for pointing me in that direction. I feel that if I do all of the leg work, my doctor will be more than cooperative with regard to translation for SSI. Again, thank you, and if you think of anything else, I would love to hear it. Even with your crappy mood face next to your name, I would love to buy you a beer, or coffee. Being a newby to this site, I thought the crappy face would be a bit much for me, but accurate. I owe you one!

 
Old 06-09-2012, 06:30 AM   #9
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Re: Diagnosed with CFS and Fibromyalgia due to EBV, is SSD possible?

Sorry, double posted.

Last edited by maciegirl; 06-09-2012 at 06:42 AM. Reason: Double posting.

 
Old 06-09-2012, 06:37 AM   #10
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Re: Diagnosed with CFS and Fibromyalgia due to EBV, is SSD possible?

Thefarm, thank you so much for your advice. Unfortunately, I have a difficult time letting others take control. I find I will stress more, therefore, causing even more health issues. I would if I had time though, and I do know what stress can do to me. Hopefully, my new heart implant will keep me in check until some sort of results are received. Two denials and a judge? Wow, I would really like to meet the person who can dismiss our pain so easily! Or allow he/she to wear our shoes for a few days! Thank you!

 
Old 06-09-2012, 10:11 AM   #11
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Re: Diagnosed with CFS and Fibromyalgia due to EBV, is SSD possible?

Lol, wouldn't it be nice to be able to trade shoes with someone for a day?!
I've always hated relying on others. I like things done right the first time. But I've had to learn to let go... I have kids feeding birds & stuff like that. I never would have given them the chance. But it helps me so I just had to let go... It's not easy & I pick my battles lol
I hope you can get ssdi, no harm in trying right!
__________________
~♥Tori♥~
Fatigue & Derealization (PTSD?) 1999
Hypothyroid~ 2003
Back injury~ 2005
Severe Degenerative Disk, Arthritis, Mild Scoliosis.
Fibromyalgia diagnosed 2009
Neuropathy
Migraines?

 
Old 06-09-2012, 11:36 AM   #12
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Re: Diagnosed with CFS and Fibromyalgia due to EBV, is SSD possible?

You have a point with kids, animals, etc... I take care of indigent, formerly abused dogs. Most over the age of 12! My kids are pretty self-sufficient, and only one remaining in home. I admit to control issues, and certainly didn't mean to belittle your situation. I can guarantee you, once all this effort takes away from my animals, I will let go. I live to care for them, and/or they get me out of bed. Who did you turn your case over to? Anyone I could use? BTW, I had lower back surgery in 1994, have you had any surgeries for your back? Mine was performed by a neurosurgeon and it was one of my better decisions. I wish you the best of luck, and continue to hope that what goes around, comes around!!! Please let me know how your case turns out.

 
Old 06-09-2012, 12:51 PM   #13
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Re: Diagnosed with CFS and Fibromyalgia due to EBV, is SSD possible?

Hello,
You didn't belittle my situation at all, I hope I didn't come off wrong... I guess I focus on what I can do & try not to be picky when I have others take over the rest... It was hard at first because I'd get so irritated cause something wasn't done right. But had to learn to just appriciate what they do. Just not easy lol
No surgery for me yet & hopefully won't... At one time I had bone rubbing on bone which wore the disk down more. Not much left. But I was told that as long as I don't lift heavy items & be careful I should be ok. I don't lift anything heavy & and never carry my youngest around. Watching what I do has made it less painful so I manage.
I used to do canine rescue & love it! they were usually the ones that were going to be put down if I didn't take them, from puppies to 14 yrs old. I never had a bad dog. It's like they know they have a second chance & appriciate it. It's amazing! But allot of work, time, $ & can be heart breaking. I wante to keep so many of them but knew that letting them go opened up room for another that neede help.
As long as you can do it, that's wonderful They give you something to do that you can be so proud of! It's when things like this become work, that's when it's time for a break...
I'll message you about the company I go through. I'm not good at watching what I say & will probably get in trouble if I post it lol
__________________
~♥Tori♥~
Fatigue & Derealization (PTSD?) 1999
Hypothyroid~ 2003
Back injury~ 2005
Severe Degenerative Disk, Arthritis, Mild Scoliosis.
Fibromyalgia diagnosed 2009
Neuropathy
Migraines?

 
Old 06-09-2012, 01:42 PM   #14
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Re: Diagnosed with CFS and Fibromyalgia due to EBV, is SSD possible?

I too don't know what I can, or cannot post. I have met you and one other that I surely like to continue a conversation with. I do the same with the dogs. All of them were minutes from being put down. I would get that phone call because they knew I could not say no. I had five at one time! Never could let them leave. Control issue again. My kids help a great deal with the dogs. You are right, never had a bad one (dog), however, I did spend tons of money, but that is okay with me. I like them (dogs again) better than most people. As for your back, now that is something I know a great deal about. I had surgery on L2 - L4, and the surgeon could not believe I had been carrying around a 24 lb. baby, even walking. I guess us mothers can deal with more pain than we think! I have more I would like to say, only not in a public manner, however, it does have to do with symptoms. I don't know how to utilize this system in order to make that possible. Do you?

 
Old 06-09-2012, 04:19 PM   #15
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Re: Diagnosed with CFS and Fibromyalgia due to EBV, is SSD possible?

Quote:
Originally Posted by maciegirl View Post
I have deteriorated over the years, and now have been diagnosed with Ventricular Tachycardia and Aortic Valve Regurgitation.
I too have CFS, FM, Mitral Valve Prolapse, and Tachycardia. I know Mitral Valve Prolapse is many times common with FM. I wonder if Tachycardia is too. Fortunately, my MVP has no regurgitation and gives me no problems.

My tachycardia does give me issues. I have been hospitalized twice in the last month for chest pains and tachycardia. Medicines are just not helping. I'm scheduled for a cardiac ablation on Monday. Hopefully this will help the symptoms. I have spent the past 4 weeks in bed or on the couch because of the impact my heart has on my illnesses.

Goodness, I sure hope you would qualify with all these things. I'm still working but I do have huge issues with pain and fatigue. You need to make sure your lawyer brings into focus how you heart problems affect your FM and CFS.
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