Fibromyalgia Action UK
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Need some Advise

I live in the US and have because of my Fibro, I cannot work. I have hired a lawyer to help me apply for disability but I have been warned that it will take a while if and when I get approved. In the US, most people get denied with your initial claim and then you can appeal several time. With Fibro, I was told to expect to be denied the initial clam and the first appeal.

My lawyer has asked me to keep track of any health issues that I experience so they can be added to my claim. I have been recording the incidents on my phone and planned to write them down later. I am at 32 incidents to date.

I can’t remember why at the moment, but I contacted my lawyer recently and during the conversation I found out that my first appeal date came up. There is nothing I need to do because the same information that is used in my initial claim is used in my appeal. I was surprised that my lawyer did not notify me of this appeal date. Maybe since the same information is used, he felt I didn't need to be notified. However I would to take the incidents that I have recorded and send them to him to add to my claim. I got the impression that he expected me to be already doing that.

With that information in mind. I sat down at my computer and began to listen to my recordings and started to put the events in a Word document, but for some reason, as I began I became very irritated and overwhelmed and could only do a few of the recordings. Even after two week I can’t bring myself to putting these recording onto a written document to send to my lawyer and I’m not sure why.

I’m am a little upset with my lawyer for not telling me that my appeal date came up, and I feel pressured to get the information to my lawyer. For some reason I just feel overwhelmed. Not to mention that I find it difficult to concentrate on this task. Along with physical pain, and the medication I take that can make me a little tired, I also have extreme fatigue.

I know that I should probably try to do one recording a day, but I seem to keep making excuses. I know I am a bit depressed because I am also having to deal with selling just about everything I own so I can have money to continue living where I am. If I run out of money, I don't know what I will do.

I felt so overwhelmed with paperwork when I first started my disability claim, I was hoping that most of it was over, but my lawyer wants me to keep records every time I go to the doctor. I just wish I could get someone to do it for me.

Is this typical for people with Fibro? I can’t work and with my pain medication combined with my fatigue, I feel useless. I’m home all day, so you would think I would be able to find the time to get this done ,but I can't seem to force myself to get to it.

I would appreciate any advice.


8 Replies

Lots of gentle hugs.

Tell your lawyer that you can't cope with not being in the loop. I know that it makes me worse. Also this is your first appeal and he /or she should not assume you know what to do.

Too late now as you realise but you should have recorded your results on a different medium daily. In pen on a piece of paper, speaking as an auditor, this I am sure would be given more weight than something word processed neatly at the end.

If you medication is making you tired it may be there is a better one out there for you. being tired is one of the symptions (so is not being able to spell)

Your doctor keep notes can you get a copy of those instead of your taking notes. Again they would carry more weight than something you had written.

Afraid it is typical but you will have better days and the money will come through.

best wishes.


Hi Betty, I used the phone recording method because when something happens to me I don't always have access to pen and paper and I didn't want to forget any details.

I will tell my Lawyer that I need to kept in the loop regarding any issued with my case. Even if he expects a denial.

My doctors have already sent their notes to my lawyer and he has sent what he has to the SSD agency. My biggest problem is that all the doctors have run out if things to try. My last one suggested to see a nutritionist which I'm ok with but can't afford. All the drugs they have tried on me have caused side effects so bad where I can't take them. So my doctor have litterly said they don't know what else to do.

I guess I'm just frustrated and feeing like no one cares. I thank God that my daughter is now grown and married. I could not take care of her if she was with me. I really thank you for your concern and reply.



If you are interested in nutritional aspect then you might want to look at Dr Sarah Myhill web site, she does want to sell her book but there is a lot of free information on there.

Spark people on their web site (free with adverts) also had a food tracker that I use to record what I eat I know that if I eat peanuts my legs go.

My sons are grown too, one is off our hands but living in Poland and so have not seen for a while, the other one has just finished his degree and is back home unemployed, also have one of his friends also unemployed living with us.

Just take a bit at a time, don't beat yourself up. x


Hello Mark,

I know how difficult it is to keep track of how you feel each day and your daily medication prescription,

I can also understand your frustration with your lawyer for not informing you of the appeal date, I know lawyers are very costly to employ to support your case.

Can I direct you to a web site that might help you with your health diary and medication, The site is patentslike me .com Its a site that you can adjust your condition or health issues and remind's you daily by sending you a e-mail to complete your charts.

I use this site myself, Also there is a doctor visit application that you can simply print out a report over a 4/6 week period. This lists your health, symptoms, medication, social and mental wellbeing.

My own consultants and doctor is very impressed at the detailed information the print off report contains and to the point of making adjustments to my medication for my condition.

I send you very best wishes from Scotland and hope this helps you in your claim too.

Good luck, Steve.


Thanks Steve for the info. I will check it out. I think that due to me feeing bad most of the time, I just feel overwhelmed to sit down and try to concentrate on my paperwork. My mind is not as sharp as it used to be. I guess this is what they call Fibro Fog.

I assume you have Fibro as well. Although the info on this site from women is useful, i sometime feel like the only Man with this problem. Thanks again for your reply.



Hi mark. Would it be easier to jot down your symptoms every day instead of recording them and being faced with transcribing them at a later date? I use an app called a Day One which reminds me every day to note my pain and symptoms and allows for multiple entries. Alternately, I have just used the notes app on my phone in the past and collated all the info to save me time and energy when I needed to write it all down for an appeal. I too have Fibro and struggle with the fatigue and brain fog issues which go with it. Don't forget to note the effect anxiety has on your condition when you are recording it. Note down if you had to go somewhere, be it doctor, something official, social, etc and how it affected you before and after.

I don't know much about the system in the US, but I know from experience that appeals here in UK are very stressful but it is vital to know as much as you can about Fibro and it's effect and symptoms and how you personally are affected.

Hope this was of some use.


Mark this doesn't seem right.

Fibro is disabilitaring and it's

on the books as a disibilty. If

your lawyer isn't a disibilty lawyer

you should get one. My understanding is the dr. Should

have filled out the necessary info.

I have never heard of documenting

Your illness all the time. I'm from US

also. Good luck let us know how

you make out. X


Hi mark

I am so sorry to read that you have found yourself in this situation and all I can say is take everything one day at a time and forward your written evidence to your lawyer every time that you have a couple of pages completed. It may help to discuss your feelings with your lawyer, and ask them to ensure that new evidence is circulated as it arrives to all relevant parties.

I want to wish you all the best of luck with your claim.



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