I'm so sorry for whats going on right now. I dont know how it works out there as i'm from the uk but here too i have had to appeal to get disabilty which is so frustrating on top of being ill, i did not ask to be ill and have worked since i was 17 i am 32 now and i have three young children to support and cant work due to my pain.
Can you not get your husband on disabilty because of his other health problems like his blood pressure and the fact he is on abreathing machime rahter then the fibro? as you know he does not support firbo this IME. is he on the meds for his fibro or another condition?
Hi, IMEs are a notorious problem, not just with FM.
When you get to the exam, and do go with him, ask to record it. They may be required to let you, but if not, you take notes. That they can't stop. Even if you can record, take notes too. Make notes of exactly what tests they do and how. Target and tech stores like Circuit city sell little voice recorders that work very well. I like olympus's for sound quality and ease of use (which reviews generally say too). For the newest ones, don't move them once you set them down (such as in your purse) or you'll get lots of static. (If you don't get permission, you may want to use it anyway to go over later to aid you note taking - however, I don't know if that's legal.)
Before the exam locate a relevant attorney. I'm not sure if that's an SSDI one for EEOC? Ask their advice. They may not be able to stop the exam (by explaining they you've seen enough relevant doctors or seen one already on their IME list). However, they will be the best for advice on what to do during the exam. Support groups will be your best resource for good attorneys. The National Fibromyaglia Association, and Cfids of America also have documents, written by attorneys, which will accept business or sometimes tell you who to contact.
The biggest mistake people make is waiting too long into the case to get an attorney having already made mistakes the attorney has to undo. What matters in these cases is usually much harder for a non-attorney to see. I don't mean to sound panicy, just to let you know how helpful this option can be. They will take a cut. For just a few questions at this stage they may be willing to let you pay for a few hours consult. Try not to get long term cuts taken, but just cuts of the first payment and back payment.
If the exam is more than a certain number of miles from you, you can refuse it on "impracticalilty" reasons. If they schedule it too short term, you can change it. Also, if you 'get sick' near that day.
Just because Dr. Reed doesn't subscribe doesn't mean his underlings don't (but good chance that's what the group is being paid for.) Also, sometimes in all their efforts, the IMEs are befuddled and less effective than you'd think at creating problems in how they write up their reports. (For instance they'll mention pain endlessly but denied FM - the pain now being 'independently' documented.) The IMEs are sometimes not so independent from the disablity group and an attorney can later dig that up and use it. After the exam call and ask for a copy of the records. However, kept in mind that what sounds obnxious to you, may be no big deal in an attorney's hands. It's amazing how little logic has to do with all of this. Certain words are commonly used on doctors records that sound unpleasant and don't mean anything such as 'patient denies', 'patient refuses'.
For exam, bring all your husband's medical records, also the drug bottles. When asked questions refer to their availablity. (Preread the records and leave off anything that can obviously be misused, such as someone who didn't believe your husband.)
Another angle is to think about and research tests that can be used to support the FM claim. Then ask about or make notes of ways their tests aren't adequate to test FM. For instance with CFS, a person can generally perform well for short times or on the first try. It's day two that's the problem. Come to think of it log any after effects for the next couple days. Some tests didn't show anything until heart monitors were worn and then CFS folks first showed problems (I can't think of which test). Get the names for any related conditions and make sure the exam is for EVERYTHING that's disabling him, and not just 'FM'. For instance, an injury, or dyautonomias that are common in FM. Careful with depression. If your disablity program has a clause that excludes psych conditions from payment after two years and many do (get a copy and read the text), then minimize and avoid providing this stuff.
In other words, there's more you can do than panic. Do of course be polite with the examiner. However, firm if need be about anything, such as tests that have already been done don't need repeating or exam items that will cause pain and a crash. Also, you aren't trying to prove FM here. You are trying to prove disablity. Lots of people get disablity after going to these IMEs.
Also at the beginingin of the exam you can ask if they have any conclusions on FM in general. Getting that on tape, or in your notes...
All of my thoughts are from a lay person, so an attorney's advice will trump mine.
This stuff gets tough sometimes. It's very hard if you're sick to do the work to navigate it yourself! It's good he has you.
It is really strange that I ran across your post tonight as I have never even read a forum before. Must be karma.
You MUST call this company as soon as they open in the morning. I am a disabled registered nurse with fibromyalga. I did not have private disability insurance but got Social Security Disabillity on the first try. This is unheard of, especially with fibromyalgia. I'm sure it would have eventually gone through, but Disability Advocates handling of my case made it much easier and quicker. Frankly, I was in such bad shape at the time that I never would have had the strength to make it through the process alone.
This company was started and is run by Mick. I can't think of his last name right now, sorry. He has "case managers" that cover each state, and they walk you through each and every step, including completing paperwork with/for you. They keep in close phone contact with your case manager at SSA, which makes you a person to the SSA rather than just a number. I could go on and on, but the important thing for you to do is to call Mick ASAP. You will get him personally. BTW, he is disabled with MS, in a wheelchair, and started this business to help people with what was a nightmare for him also. He is just like talking to an old friend. He just recently handled my sister-in-law's case as she was awarded SSD for MD. She is also an RN. I don't really want to give my name on here, but if you tell him what I've told you, he'll know who referred you.
Disability Advocates of America
Cedar Creek, TX
BTW - There is a cap that ANYONE can charge you for handling a social security disabillity case, either a private company like Mick or an attorney. Mick will have the up-to-date info on that. Make sure you have that info. before you talk to an attorney unless you have one that you can really, really trust. You could also find that info at www.ssa.gov.
Best of luck to you! My next piece of advice is to run, don't walk, to a reputable pain specialist. A family doctor cannot adequately treat fibromyalgia. He will also need a good rheumatoligist.
Keep us posted. There are a lot of us out here that are thinking of you both and wishing you the best. Make sure you visit www.fmaware.org and ABSOLUTELY SUBSCRIBE to Fibromyalgia Aware magazine. It will be a godsend to you both.
God bless you,