Rhuematology appointment soon

[SarieLarie]

Hello,

I am meeting with a new rheumatologist this month, I haven't seen one in years due to bad experiences. I am seriously considering filing for disability since I quit my job a few months back. I have found it difficult to handle the stress of working both mentally and physically. I fully intended to take a few weeks of down time to recover after quitting and then to start looking for a new job. However, I'm just not recovering yet and I'm not feeling too hopeful about it anymore. I have Fibromyalgia, Osteoarthritis, IBS, migraines, tinnitus, post concussion syndrome and after recent cognitive therapy I was told I have executive dysfunction disorder.

Obviously, a doctor who does not know me is most likely not going to be willing to help with disability right off the bat and possibly not at all. I am wondering if I should even mention it at this appointment, but at the same time I need to get moving on the process. Financially, I'm not sure how to handle this process at all.

I have started to list out medical history (viruses, surgeries, accidents, diagnosis, etc) and symptoms that I experience, it's a bit long lol. I don't want to come off like a hypochondriac, but also need someone to listen and realize that I have dealt with a lot since childhood and I'm now 50 years old. It's not getting any easier!

Any suggestions on how to approach this? When do I mention disability with a new doctor and how to say it?

Thanks for any input!

 

[SBee]

Hi @SarieLarie

I guess being in the UK myself may be different in many aspects of applying for benefits so I hope someone in the US can help out in that dream

As for your appt, I personally would prioritise your conditions and symptoms ( not sure if allowed duration of an appt may be an issue ). Definitely list all your current meds.
Make yourself some short notes so you don't forget the absolute essentials of both what you want to say, and towards the end of the a appt what questions you may want to ask.

Also, as we aren't always capable of taking in all the info, ask for a letter to be sent to you detailing the consultants diagnosis\treatment plan.

Also ask what follow up may be in place if you have further questions or require more explanations after the appt. Again, I always go home after thinking ' why didn't I ask that ' or ' what did they mean by xyz '

In view of the fact you may be applying for ill health benefits, maybe when you are speaking of your symptoms explain how debilitating they are in your day to day life, and that you felt forced to quit your employment due to the health conditions and symptoms.

I wish you well

 

[sunkacola]

Getting SSI ( government disability payments) in the US is very, very difficult. Usually you have to be able to prove that not only is there literally no kind of work that you can possibly do, but also that you have been unable to work for a long time, as much as two years. You have to have extensive documentation. Most people who apply are turned down, even the second and third time.

Also, SSI operates the same way that regular Social Security does in that you have to have worked a certain amount, paying in to the system, in order to get it, and your payments would be based on how much money you earned and put into the system. Maybe that's not an issue if you are old enough to have worked plenty, but it's something to know.

I am not trying to discourage you, just want to make sure that you know how hard it is likely to be, and that you are up for the incredible challenge that it entails. Having been out of work for a few months is very unlikely to be enough, especially if you have not tried numerous time to work and failed to hold the jobs. I wish this were not so, but this is what I have been told many, many times by people who have tried to get disability. Even for someone who is paralyzed it can be hard to get.

As for the doctor....make a list of your top three or at most four issues. Make notes as to how these affect your life, and what you hope to achieve from seeing the doctor. Don't go into a lot ofdetail, keep everything short and to the point and don't be emotional.

I personally would recommend not mentioning to a new doctor that you are thinking of applying for SSI. For some doctors that will be a red flag, and you don't need the doc to know, at least not at first.

Have a list of your medications, with how effective they are or have been.

If you decide to apply for disability, go to the local Legal Aid or other similar organization and ask them if there's anyone who is knowledgeable about the process and see if you can get advice from them. Don't just get the application and fill it out....you need someone to help who is familiar with the way the system works.

 

[SarieLarie]

Again, I always go home after thinking ' why didn't I ask that ' or ' what did they mean by xyz '

Yes, I do this often enough myself! That's why I was thinking of making a detailed list. I agree time may be limited though, I will shorten up my list. Thanks for the input!

 

[SarieLarie]

As for the doctor....make a list of your top three or at most four issues. Make notes as to how these affect your life, and what you hope to achieve from seeing the doctor. Don't go into a lot ofdetail, keep everything short and to the point and don't be emotional.

I personally would recommend not mentioning to a new doctor that you are thinking of applying for SSI. For some doctors that will be a red flag, and you don't need the doc to know, at least not at first.

I see what you're saying, these are helpful tips. I think I'm going to need to be patient with myself and the timing of the disability process because I know it will be a hard road ahead. I will cut down the details for now and hope I can hold back emotions as much as possible. I haven't been very good with that lately. Thanks for your input!

 

[sunkacola]

I see what you're saying, these are helpful tips. I think I'm going to need to be patient with myself and the timing of the disability process because I know it will be a hard road ahead. I will cut down the details for now and hope I can hold back emotions as much as possible. I haven't been very good with that lately. Thanks for your input!

If you are afraid you will get emotional, take a friend with you if you can. That might help. And/or write it all down, and just read it to the doctor.

One thing that a doctor is almost certain to react to poorly is a new patient getting emotional, especially when fibromyalgia is concerned. If you do that, there is a high chance (I am basing this on what I have heard from a lot of people) that the doctor will just think, and will tell you, your issues are only psychological, and/or give you antidepressants and/or not take you seriously.

The worst part of that is that it would go on your record, possibly that you are a hypochondriac, or have mental instability. This is entirely unjust, but I am warning you because it happens so often. And if you get something like that on your medical record, it will make getting disability almost impossible.

Not all doctors are like that. But the truth is, the majority are.

Please understand I am not trying to scare you or discourage you. But these are things you should know so that you can protect yourself against them.

 

[SarieLarie]

Ah yes, unfortunately that is so true! I got choked up speaking to doctor once and they pushed antidepressants immediately. My gosh, some people get emotional when they're in pain, not every brief moment of emotion is depression. I wish doctors were better versed in these situations.

Don't worry, you're not discouraging at all. It is just the reality and I completely understand. Realistically, I know to keep prioritizing my health and focus on improving and hope that I recover enough to work again. I do want to get my ducks in a row and prepare for disability if I am unable to do that though.

Thanks

 

[Scrappin4Spoons]

@SarieLarie I started reading your post and thought I was reading my identical current situation so you have my
I have not filed for the same reasons everyone has mentioned. My father has suggested getting a disability lawyer. They can help and will let you know if it is something that can be successfully done at the moment.
I just don't have it in me right now
I wish you luck with your rheumatologist appointment. Be sure to set aside your day after the appointment to baby yourself - self care never hurts anyone!

 

[SBee]

I agree @Scrappin4Spoons in not taking action of you feel you are not mentally\emotionally strong enough atm ( I hope using mental as a description does not offend- it is a word I am comfortable using for my own health). Try to get your health on a more even keep so you don't put yourself under additional stress and worsen symptoms.
I have found the benefits in waiting until I feel strong enough to be able to put myself over in a calm strong manner at appointments.

If I get the option when I feel a little weak, I would instead prefer to write an email to a professional, because then I have so much more time to get my message across in a clear concise way, and of course have the opportunity to read what I have written and amend accordingly.

 

[SarieLarie]

I started reading your post and thought I was reading my identical current situation so you have my
I have not filed for the same reasons everyone has mentioned. My father has suggested getting a disability lawyer. They can help and will let you know if it is something that can be successfully done at the moment.
I just don't have it in me right now
I wish you luck with your rheumatologist appointment. Be sure to set aside your day after the appointment to baby yourself - self care never hurts anyone!

Thank you, sorry to hear you are are in the same situation. I have heard a disability lawyer gives a much better chance for approval. It couldn't hurt to do a consultation. I'm not sure I have it in me just yet either, I just know it's time to establish a good rheumatologist for starts. I haven't been able to find a good one since my doctor retired.

Take care of yourself, wish you well!

 

[SarieLarie]

I had a fairly good meeting with the new rheumatologist. I kept it brief and unemotional. Unfortunately, he signed off on me because his specialty is not fibromyalgia and he deals with autoimmune disease more frequently like Lupus etc. A little strange because someone locally had recommended him on another forum specifically for fibro. That's too bad, he seemed like a good one! He did retest me with the trigger points and questionnaires which confirmed I do indeed have fibromyalgia and osteoarthritis.

We did some X-Rays of my shoulders and knees and setup physical therapy sessions so that I can exercise more safely. There is quite a bit going on with my rotator cuffs, arthritis, tendonitis, scelrosis and possible tears. He also referred me to the sleep clinic to monitor for apnea.

I can also try amitriptyline and infusions with the pain management department or injections for my arthritis. Has anyone had success with these options? I'm willing to try, just curious on any feedback.

He also mentioned mindfulness, yoga, tai chi and behavioral pain therapy.

 

[sunkacola]

@SarieLarie .......I don't doubt that you have fibromyalgia. But just want to let you know that the "trigger point" tests for fibromyalgia are never used these days by people who are in the know about fibromyalgia. These tests have been completely debunked. They were never accurate, and I certainly know this from my own experience and that of others, because one day a person will react to a certain so-called "trigger point", but the next day will not and vice versa. It's an indication that the doctor you saw is correct that he is not the person for you to see for fibromyalgia, because he is not knowledgeable about it at all. You need to see someone who is familiar with the latest knowledge.

Amitriptyline may help or may not. the thing is that everyone is different, so even if people here tell you that it helped them, it may not help you. some people get terrible side effects from it, and for others it does nothing. the only way to know how any medication will affect you is to try it for yourself and find out.

this trial-and-error with medication can be OK and it can be a nightmare. If it's possible to manage symptoms using non-drug methods, that is usually preferable to going on the hunt for the right medication. I always suggest that people try to manage it without medication first, if they can. BUT.....whether or not you can is something only you can determine.

I do agree with the suggestions of tai chi, yoga, etc. The thing about fibro is that any stress will exacerbate symptoms. So anything you can do to relax and control stress in your life will be almost certain to help. Eating the most healthy diet you can, avoiding sugar and alcohol, and getting regular exercise is equally important.

 

[SarieLarie]

@sunkacola The trigger point testing is how I was originally diagnosed, so I didn't even think about it or understand the need to retest me that way. That totally makes sense why its been debunked to me now. I had no idea testing changed. That's good to know I'm not missing out on that doctor.

The trial and error of medications I do have experience with. I am not a fan of prescribed pills and have had enough bad experiences. I'll most likely opt out on the amitriptyline and the cortisol shots. I already told the doc that I'd think about the amitriptyline and said, " I know it must be weird coming in and not wanting pills, but I don't." I will have to do some research on the infusions, I've only recently heard of those for fibro. I'm unsure on side effects or if it is even proven to be helpful.

I agree with exercise and less stress for sure! I don't drink alcohol, but do need to cut sugar down again.

Thank you so much!