I am really excited and afraid of my first Rheumatologist Appt...Help

General
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Hi to you all.. I am Lisa .. I have my first appt with the Rheumatologist coming up in 2 weeks.I have waited a while to get in and am off work right now cause I just cannot physically do my job anymore. I am so worried about wether I get a good doc or a not so good one. My GP thinks I suffer from fribromyalgia and I think she could be right.

Have any of you been in this situation( silly I guess you all have) what should I expect at this appt. Will the Rheumy be thorough and will he write me up anything for my insurance company. These are all questions that are causing me a great amount of stress. How should I approach him.. I am seriously trying to get prepared and glad I found this site.. Thanks Lisa

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What kind of work do you do? I am hoping to go to a Rheumatologist too. I am still working, but it is getting more difficult.

This sound so great for you, looking forward to hearing how your visit went. My best to you.

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I am in the same boat. I am seeing a Rheum in a couple weeks myself. I've already been diagnosed with Fibro by multiple doctors.

I would love to hear from someone who has seen a Rheum and can give us advice! Thanks for inquiring and good luck!

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your rheumatologists is just going to check your pressure points to make sure it’s fibromyalgia, he’s going to assess your pain and symptoms and more than likely prescribe you with a few generic fibromialgia medications and suggest that you change your diet (to the fibromialgia diet) and be more active and a plethora of other things. It’s a lot at first but when you have it down it’s quite simple.

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My rheumatologist was great. He started me on meds that my reg. doctor never tried. They help but never get rid of the pain. I too am at the point where I don't think I'll be able to do my job anymore.

Just be sure to tell the rheumatologist everything that's going on. It will help him/her know what meds are right for you. Mine also referred me for physical therapy. I could only go to a couple sessions because my insurance wouldn't cover much of the bill. But they have water therapy that feels so good.

Good luck!

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Thanks Anna, I am a job coach who works with developmental disabilities and I love my work. Just the physical side is too tough and I am just not on the ball anymore ( cognitively speaking) . I will let you know how my visit turns out. Every one I know personally says that the Rheumatologist can be very helpful so I am crossing my fingers and hoping for the best. Cheers Lisa

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Hi Trix , I will definitely let you know how and what happens at my appt. I wish you all the best as well ..

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Therene, I really appreciate your response. It is always good to have an idea of what will take place. Bless you Lisa

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Thanks CarolAnn, It is so weird when you just cannot do your job. I am starting to come up with all the info of the past 2 years and put it down in point form cause I am sure he has hears it all before. I am having a few issues with my insurance right now so the stress level just doubles. We shall stay strong and try to hold on and not let this condition strip our personalities away.. Thanks Lisa

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Hi Lisa, I have a female Rheumatologist and she is great. I travel 2 hours to see her. She took a very detailed history my first time. Checked some pressure points, prescribed some meds and recommend some stretching exercises, PT, and warm water therapy. I just went to my local Y as their water is warm. It really helps. For those of you who think you may not be able to work much longer I have some important advice for you if you want to be successful in getting a favorable decision. I worked as an Anesthesia Tech for many years. I had 26 OR’s to cover and was on my feet 12 hours a day. I loved my job. It was very stressful, not to mention the OR’s were always freezing. All of the above are very hard on people with Fibro. 3 yrs ago I stopped working, unable to perform any job. All most everyone who applies for disability gets turned down. They want you to give up. Don’t, it is a lot of paper work. You will have to file an appeal the second time. You will most likely get turned down again. This is when you hire a disability lawyer. Don’t worry they don’t take any money unless they win your case for you. It took me 2 years to win my case which was last week. They will want a onset date, this is the day you became unable to work. This is important as you will receive back pay for the years you could not work. Document everything, get yourself a file folder and start today, it will make it easier for you in the process for when or if you become unable to work. Make sure you have a good relationship with your doctors. If you don’t get good vibes from your Rheume change as all of your doctors will be asked if they think you are disabled. It is a long process as the courts are backed up. I hope I have helped. Good luck to you Lisa. Leanne

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Leanne,

Awesome information thanks so much.. I am so glad you finally received your disability. I am afraid this is what I am in for as well as I just cannot do my job at all anymore. I am praying that I am going to see a great rheumatologist but will have to see. I have been to a pulmonologist ( emergency visit in the fall ) I had chest pain and pressure ( inflamed lungs ) and he found out I have severe obstructive and central sleep apnea and asthma as well. My work insurance just stopped paying me because my 17 weeks of short term is up .... now it will be a big fight with them to continue payments.. I also need a C-Pap machine but they will not pay for it until I have ... Makes it hard cause I have no money coming in. I never realized what a struggle it is for anyone who has this kind of disorder. I am just gonna have to toughen up some cause it is not my nature to be strong with these insurance people. They tell me they need stuff from the Rheumatoligist and I fear he will think that is all I am there for. I am not sure how that will go.. I need to be prepared so I can present myself well.. I am obsiosly overwhelmed by all this but will trudge thru and do the best I can.. OK now I am rambling Thanks so much for your post it is most helpful ... Lisa

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I agree with your assessment of what will happen, Therene.

I am a big believer of educating yourself as much as possible BEFORE going to see the doctor. You obviously have access to a computer and there is a ton of stuff (both good and bad) out there for you to read. So, how do you know what is good knowledge and what to steer clear of. That's why a forum like this is so valuable. People like me, who are in their third decade with FM and have volunteered with non-profit groups, started/facilitated support groups, etc., can give you a push towards info that is a good start. I BEG YOU TO KEEP YOURSELF EDUCATED ABOUT FM. IT IS ONE OF THE KEY STEPS YOU CAN TAKE TO KEEP THE DISEASE IN CHECK. Others are:

  • a good working relationship with your rheumatologist,
  • keeping your weight in check,
  • getting regular and solid sleep
  • a balance of Patience and Tenacity
  • IMHO the most important thing you can do is MOVEMENT. Think of your body as a sponge. When you do not move, your body is like a dry sponge. Have you ever tried to bend a dry sponge? When you move and get the blood flowing, it is like you are wetting the sponge.

OK, back to education - The National Institute of Health (NIH, in Bethesda Md) has a specific department that deals with information related to fibro. It is called NIAMS (the National Institute of Arthritis, Musculoskeletal and Skin Diseases). They have a terrific packet of information that you can call and request (301-495-4484). If you want, here is the direct link to their web-site dealing with FM which you can view, print, etc., ( http://www.niams.nih.gov/Health_Info/Fibromyalgia/default.asp ).

This will give you a good start education-wise (but won't overwhelm you) so you are armed with the appropriate knowledge going into your appointment. It should also help you generate appropriate questions for your rheumy.

The last thing I will say before I wish you luck on your FM journey is that there generally is no magic pill for our condition. It is definitely a journey and will likely take time for you to incorporate it into your life, job, relationships, understanding of how far pain can go, etc., TIME is something most people don't understand. You have to give FM recovery/placement in your life time. With the right doctor and an understanding of how people live with FM, you will be able to live a relatively normal life. It will just be a life with FM.

Good luck to you, friend. Please remember that we are here if you need to talk, understand, vent, etc.,

Marc

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Hi Lisa,

I'm not sure what you mean by writing you something for the insurance company. What exactly do you need for them? Maybe I can help. I worked for a Rheumatologist for years as his Office Manager, and handled all of the insurance billing and pre-certifications.

I'm sure that I'm biased, but I think that they are the best doctors for diagnosing. Dealing with autoimmune and connective tissue disorders, they have dig deep to find the answers in bloodwork, radiological tests, and physical examinations, because so many of the diseases they specialize in mimic one another.

The best doctors are ones that spend time with you, listen to your concerns and take them seriously, and are willing to work with you to find the treatment that is best for you. If you find that the doctor is NOT listening, spending time on a thorough exam, or taking you seriously, run the other way!!

For your part, the best thing you can do is write up your medical history. You should include:

  • Any conditions you have and when they were diagnosed
  • Your current medications with the dosages
  • Past medications and why you no longer take them
  • Any allergies you have and what happens with them
  • Any treatments you are currently on (C-PAP, physical therapy)
  • Your surgical history with dates
  • A list of your doctors with phone numbers and addresses
  • A list of recent radiology tests and the dates, and where they were done
  • The date of your last bloodwork
  • A list of all your current complaints, no matter how small, with the approximate dates they started

Also have copies of your medical records sent to him in advance so they are there when you go. He'll want to see any test results and the doctor's notes. It might also be a good idea to have them give your records directly to you, so you can keep copies.

I hope this helps, and let us know how the appointment goes!

Hugs,
Renie❤

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I hope everything goes well for you Lisa, if you have anymore questions I would be glad to help. I know you are nervous but it will all work out in the end. Just be yourself and through some positive things in that you do when you talk to the Doc. I have had to play this game with most of my Doctors until they got to know me. I always started with, I really need your help…
Good Luck!

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That would be throw, oops!

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First thing is to ask your primary doctor, if you really them, how they feel about the doctor you are going to see. That is the fastest and best way to find other great doctors by having one to begin with!! If they are hesitant at all, then ask who they think would work better with you and wait for that doctor. Save a lot of wasted time, worry and tears of being frustrated by idiot doctor you cannot stand.

This link will give you information about all different people Rheum doctors may have you work with and what their are their roles.

http://www.rheumatology.org/practice/clinical/patients/healthprofessionals/index.asp

Also from American College of Rheum is list of all doctors who are board certified. I found out that many doctors advertise as 'treating' Rheum but are not Board Cert so they never went through the extra years of studying just it.

http://www.rheumatology.org/directory/geo.asp?aud=pat Plus list all doctors in your area in case you do not like first one.

Now there are sites that for doctors both by patients and how they rate them as well as ones that list all the things the doctor is qualified to do or has done. I had a really great one that is done by one my Rheumatology Sources for Doctors and if i can find it I will send it in.. It has like if they are teaching, any awards or any claims against them, what their specialties in Rheum are...like some prefer Fibro other like more unusual auto immune diseases plus it had patients able to post the style of the doctor. I know most USF Doctors on it were highest for here in Northern Calif but UCD also had high rated doctors..sorry speaking of teaching colleges (University of SF and Davis). Teaching Doctors tend to be the most up to date....but I had great private doctors. Stanford of course has excellent too..all had good and not so good ones. Places like Web Md i believe have on them about how to in doctors..or do search about rating doctors. You can always look on your state site and check to see it your doctor has any complaints against them...that is only one i would trust since it states exactly what it was about and if it was found to be true or not.

One last site and this one is great just for everyone...how to communicate with Doctors. It is from Pain site...which is also very good. I have taken down notes from the information on this site to remind myself how to communicate, no matter if i like the doctor or not. It really has helped greatly.

http://www.painaction.com/members/lesson.aspx?id=1936&paintypeid=0&utm_source=patientnewsletter172&utm_medium=email&utm_campaign=work_effectively_doctor

The Pain Action site has a lot of great information on it about pain but also like how to know when it is time to find a new doctor and articles similar to which really help fibro patients who are tired in pain and frustrated at feeling they are not being heard by their medical people.

Also Arthritis Today has some great information as well as Fibromyalgia Support Network and FM-CP Advocates...(fibro and chronic pain) magazine but is online...and it has a ton of great ideas...the other one is from Australia which is really great because they use more mixture of western/alternative medicines and you get a lot of different ideas that what is normally heard here in US.

Many have said what to expect...i have not once had any of them bring up the diet that other talk about...but i have tried RA diets plus gluten free and others. Plus kept food journals for years and found no tie except to avoid some foods..i have Lupus plus other other auto immune diseases...only thing i watch is protein but i pretty much have given up meat anyways and drink a ton daily since i have had kidney issues.

My Rheum doctors have always asked very personal questions...like about your marriage and how well it is, if your spouse is supportive or not, how your family thinks about your being sick etc. Also about your work, what you do and how much you like it and get along with others at your job. Even if you have been abused....if they ask anything you do not feel comfortable asking since you really do not know yet if you trust this person...just tell them that. IF you think you do trust them but do not want it written down ...also feel free to ask. Most are fine with you asking them these things...if not...well you got a clue here about this doctor already. You may not care...i personally would.

They ask those kinds of questions since it has been proven over and over that our emotional well being effects our health and so try to answer as honestly as you can.

The link the other person gave from NIH is excellent and i did not repeat it just since she had. Just try to keep in mind they are just people. Make list of your questions and do not be afraid to ask them. If they do not give you time or say do you have any questions...again that is another key about what kind of doctor this is going to be. It they just leave with out asking you your questions than get assistant or walk in their office and say you have some questions you like them to answer.

Do not be afraid to let your doctor or their assistant know if the doctor leaves before asking if you have questions...most do this so odds are they will...but in case they do not...just either walk in their office or get assistant to say you have some questions.

Also..when they physically touch you...okay to say if they are pressing too hard. You do not need to have them hurt you really bad to prove you have fibo. Most Rheum doctors are fully aware that people with fibro or RA have a lot of pain so touch you gently.

I wish for you that you get how most of my rheumatologist have been...wonderful people! They along with my team of doctors were all more like my friends than doctors. Sorry so long...but you sound a bit scared and intimated and hopefully these sites will make you feel informed and in control when you go see your new rheum doctor.

OH also...odds are they are going to run more blood and possible urine tests to check for for other auto immune diseases since there are so many now....and many hide till either you are in flare or they just pop out finally ...so do not read into that...just being a good doctor and covering all possibilities.

sorry so long...you just sound a bit scared and nervous..since you have 2 weeks...time to read these sites, i think they will really prepare you and help you to feel more in control. Plus, just a lot of great information so you can also be informed patient!

I wish the best for you!

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hi Lisa.

The health service is very different here in Oz but what I would say is go prepared. Write down your relevant history and write down your questions, give the doctor a copy and have one yourself. If possible record what the doctor says, with their permission of course, and if possible take a friend with you.I hope this helps. barb

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Mine determined whether or not I had arthritis in my hands. He sent me for x-rays then ruled it out. He conferred that he believed I had fibro.

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Hi Lisa,

The best advice I can give you is to go primarily for your health, let them know that your main concern is to get better. Be ready to fill in paperwork that asks all meds you have taken, and if they helped, what you currently take, how much, how often. A short list of your main complaints/problems/symptoms, meaning not a hundred of them.

Knowing your family history will help, mine wanted to know if there is any autoimmune diseases in the family. If anyone in your family has arthritis, try to find out what kind. He may run blood work, if he feels he needs a better answer to something.

If you need him to fill out paperwork, you may need to make another appointment just to do this, it just depends on how he works, they are all different. I would not mention this until the end. The Dr will need to ask you questions, and it is best to let them 'lead'.

Sometimes it is necessary to see them more than once for them to properly diagnose you. They need to be sure, and it is always a good idea to continue to see them on a regular basis, unless they don't find it necessary.

I wish you luck, you are on the right road! I wish you well!

Love and hugs,

SK

I had not seen Renie's post before I added this. She worked for a Rheumatologist for about 11 years. Her guidelines are solid and complete.

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Hi Lisa, wow you have got some great advice, I’m still looking for the right Rheumy, the first one I went to ordered blood work, never examined me, hardly asked a question …
Thank God my primary is the best in the world…
So 3 months later, I went back, just to get results, and she never turned on her computer and sat with her arms folded, and said I think your primary is covering it all.
I knew I was done with her, however last year I needed a supporting dx from her, for my disability company, I wanted to see someone else, but because I had seen her before, I didn’t have time to wait 3 months to see someone new, long story short…
I went back to her, 3 rd time now, gave her my symptoms and she had the nerve to say why don’t you see dr. smith, “he likes fibro” are you kidding…
My first visit I knew she didn’t want to treat me, and I should have never wasted my time with her again, so I’m waiting to see some one new, hopefully this will be a winner…
You can’t give up, keep looking for the one you feel comfortable with
My advice, listen to your inner feelings about this dr. are they excited to talk to you and share information with you or are you feeling a cold shoulder… You will know
Hugs & blessings
dee