HELP PLS! 1st Rheumo Appt- What to do?

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MEgersheim

Active member
Joined
Jan 18, 2014
Messages
53
Reason
DX FIBRO
Diagnosis
01/2014
Country
US
State
Massachusetts
I have my first Rheumatologist's apt on Friday, and he is actually one of the doctors that I later found connected to this website, Dr. Guttell.


First of all, I am wondering, what can a Rheumatologist can do for me besides confirm diagnosis?

Secondly, what should I bring with me?
Such as:
A list of what parts of my body hurt, when each part started hurting and what kind of tests have been done on that part of the body, if any, plus the results
A list of what medications have been tried, which worked, for how long & which didn't work, with adverse reactions

Other ideas.

I truly appreciate your input.
 
Only bring a list of questions you have for the doctor and a list of the medications your taking.

He should do a physical exam to see where you're swollen and/or guarding. He should also ask you what is bothering you and what you've done about it. Let him form his own opinion based on his examination and answers to your questions. Then go from there.

From personal experience, if you go in there and start telling him what you think you have, he'll be less willing to work with you. Also, I've been to numerous rheumatologists, for various reasons, and each of them wanted to run their own tests. You can tell him what you have had done but don't be surprised if he wants to rerun any. My doctors were never sure of the previous doctor's diagnosis until they got their own test results back.

God luck and I hope you get the answers you are looking for.
 
I agree with what LivetoErr, has said. Tell the doctor your worsed symptoms and what troubles you the most. Bring in any records or tests results, to share with him, but do not tell him what you think you have. Let the doctor do the diagnosising. They have such big ego's that if you tell him or her, what you think they will dismiss you as being depressed or making it all up.

So be patient and let the doctor do the diagnosis. Try to remain calm and explain the pain you have. Be ready with how your going to explain your symptoms and if the doctor asks your pain level from 1-10. Write down any questions you might have because brain fog will strike if you get nervous. If the doctor is rude or makes you feel uneasy, try to be brave and get though the appointment.

And lastly don't ask for medication. What I mean is you can ask what medication might help you with the pain, but don't ask out right for any medication as many doctors think some patients are just looking for drugs. What you want is to have the doctor feel like he is in control and so then the report he writes up about your visit will be positive and helpful and not negative. This will help you in the long run with any other doctor you see.

I hope you find help for your pain and get the help you need. We will all be rooting for your success. :)
 
Thank you both so much for your help.
You both have given me some great advise these past few weeks since I first got my diagnosis, and you have made me feel as "understood" as I probably ever will.
:smile:
 
One more question, though. What kind of tests? My doctor already sent over the blood test results. Besides that, all I have had done RECENTLY is an MRI of my cervical spine & thoracic spine - I have stenosis of my c-spine.
 
I toyally disagree with most of the suggestions of 1sweed. I think you should be assertive, not fearful of being rejected-it's not a first date!
Be tactful, if you think it's fibromyalgia say so and be prepared to say why.
As for medications I think it's ok to mention them - you're there to get relief!
 
Generally a new doctor wants to do his own bloodwork tests to check for other reasons that might be causing you pain. Such as Lyme disease or Lupus, thyroid or RA. Depend on the doctor.

ecletic1, You are welcome to share your opinion on this subject. I was speaking from experience with several different doctors. If you blast in the door and tell a doctor your opinion and what you believe you have most of the time you will be treated with no respect. It is truely best to let the doctor lead on the diagnosis and the medications on your first visit. It is a way to see if the doctor is willing to work with you and be helpful in finding your health problems and treating them. If you feel comfortable and get help the first visit then the second vist you might be a bit more assertive in management of your illness.
Maybe you were one of the lucky ones and got a good understanding doctor the first time around. Most people are not that lucky. :)
 
1sweed
I did not suggest "blasting" in the door!
Any doctor I see will have to listen to my opinion, it's my body and paying for his/her time!
Again it is not a first date and I don't believe we as women have to be passive as you're suggesting...I am not antagonistic in my approach but the doc is aware of my expectations.
I find it disturbing that you're concerned about the doc's control issues and willing to be relatively passive!
It should be a collaborative relationship.
You seem to be all over this site offering opinions and
especially regarding medical marijuana and pain control.
This is my last post, time to move on!
 
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If you're doctor sent over the blood test results your rheumatologist may not require more blood work. However, mine did. Every one of my rheumatologists didn't agree with my diagnosis of Mixed Connective Tissue Disease. They needed to retest me to find out the previous doctor was correct.

Personally, I don't think the first appointment is a collaboration. The doctor needs to form an opinion without bias. Frankly, the patient is the most biased person around. Yes, you know how you feel and he/she should question you to find out how you feel. You, also, need to see if this doctor is going to be right for you. I don't think you can form that opinion by walking through the door pushing your agenda. I can tell my family doctor whatever I think and what I think I may have. In fact, the next time I see her, I am going to ask if I could have Chronic Fatigue. I match a lot of the symptoms and it may help me in my quest to, finally, be accepted for disability. However, I've been seeing her for 15 years and she knows I know a lot and take care of myself. A new doctor, might not see that. No one suggested you don't talk about your issues and what you'd like to see happen. It's just that you let the doctor suggest what they think for the first appointment. You don't have to agree but at least you know where he/she stands without you forcing the issue.

My most recent rheumatologist, who now has retired, wrote in her first letter to my family doctor that, my mom championed the interview. It did not come across well at all. I had my mom there because she can talk about me better than I can talk about myself. I've dealt with chronic pain for so long that I forget any pain and/or symptoms that aren't current. My mom, however, can recall just about any time I've had a flare. I prefer her to be with me at appointments but, I now know the first appointment isn't the place to do it.

Unfortunately, we don't have choice in who we see. Our names are thrown into a triage and the sickest people are seen first. I hope I like my next doctor. I'm still upset my favorite rheumatologist quit the field for breast cancer research.
 
Well, it turns out I do NOT like this doctor. There was no paperwork, he did not take a complete history, and when I told him I believed the pain began when I was 12 he just about laughed at me. He suggested that the pain in my left shoulder/trapezius was because of the fact that I had been laying on it for so long after I lost my job, which had also caused stress, which can cause pain and depression, and not the many car accidents I have been in where the seat belt pulled it back. He said it didn't matter what my diagnosis was and told me that exercise was the answer, and if my mother hadn't "What kind of exercise? Should she go to the gym? Physical Therapy?" I would have no idea what to do because I was so in shock. He said I should try swimming, PT, trigger point injections - even though I already told him I tried it already, and when I asked about it he said acupuncture was ok too.
 
I am so sorry that you had to go through this, but I am thankful to hear that your mother was with you and could witness to the fact of your treatment by this doctor. I guess his ego stood out in full glory and you must have felt crushed by it. I sat in shock through many such doctor appointments and I understand the pain and the heartache such a doctor can put on a patient that is only looking for medical help. Did he offer any medication for the pain or just talk of exercise and physical therapy?

Another member here "twiztc" has used swimming in a heated pool to help with her conditions and says it offers her great relief while she is in the pool. But aside from that have courage and know that he is not the only doctor out there and do not give up hope. I hope you feel a bit better today, mentally, and please let us know how your doing. :)
 
As for the doctor, NEXT! I hope there is someone else you can see. He reminds me of the first Rheumatologist I ever had; he told me to "just get over it". My mother looked at him and said, "excuse me?" I was 12! How do you get over, something like, being diagnosed with an autoimmune disease at any age, let alone 12.

I don't understand why a lot of rheumatologists think exercise is the only answer. My previous told me sleep and exercise would solve my FMS problem. I wish it was THAT simple. I can't even swim. The next day, I'm so sore I can't move. I don't disagree, that exercise is beneficial, but you need to find something that doesn't hurt you. I've yet to find that.

I was in an accident when I was 17. I t-boned someone and then fish tailed into another car. I've had pain between my shoulder blades ever since. I've got x-ray, MRI and bone scan reports that say I have a couple fractures in my thoracic region. Excuse my language but, my arse, motor vehicle accidents don't cause long term issues.

I'm sorry he wasn't the doctor for you. Hopefully, you'll be able to find one who doesn't disregard you completely.
 
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