I had a visit with my rheumatologist and once more i'm glad I do my own research and seek help from alternative therapists. If it isn't joint inflammation that he can feel on that day, it doesn't matter! He's so dismissive :(. And what bugs me the most is he talks about himself all the time. For instance, he has osteoarthritis in his hands. Now, he is at an age where it makes sense to have osteoarthritis in your hands. I'm 23! It isn't the same as the pain i'm feeling in my entire body! My right shoulder, elbow, and wrist are BURNING today, but he really could care less that the pain meds he's prescribed don't do a thing, as long as there isn't any inflammation >:(.
How do you handle a doctor who you must see, but who doesn't really give you the consideration you need?
My rheumy recently dismissed my wrist and thumb pain as being osteoarthritis. I thought that rheumy's dealt with osteoarthritis as well?!?! I had to insist that I was quite done with MTX, as it clearly wasn't working. I hate to admit it, but I really hate looking for new doctors.
I agree find another...also i say to him well you are at the age...and why did you go in this field if you knew the patients are going to be complaining about how much we hurt?
I heard one guy...who was becoming doctor ..doing his resident work talk about seniors and how he hated treating them that they are just going to die so it is waste of his time. I am not kidding!
But your doctor is exactly what i would not like or nor want ....he does not care about you...cares about buying that new expensive car or house etc. I seen those kind and hate them. I yelled at one so loud ..because he kept touching me where it hurt and hurting me despite me telling him not to touch me unless he says he was going to ahead of time.
My other doctors all thought it was great because he treated them same way....he was military doc and guess he was use to giving orders to his patients rather than listening and being kind. FIRE HIM!
sad part..i just found out my favorite GP doc has ALS...odds are he might not be alive year from now. I just saw him and he told me is going to keep me until he can no longer function period. Which made me cry...i care about him just as much....he has done so much good not just for sick people but our small community. Why do the great doctors either burn out or get sick themselves? i am sorry he was jerk to you...i know how hurts one's feelings. i was your age when i got ..a bit younger actually..when i got lupus..had kidney and RA issues going on...no one new what lupus was back than in late 70's ..took till early 80s for it to be diagnosed. So i hear you and your frustration.
Try motrin...eat with it...i found it to be one of best pain relievers My nephew also has it..and he just climbed mt whitney so there is hope...plus he working on fixing it..as medical researcher! I also use to hike and back pack until my fifties i just found pain was worth it because it gave me so much joy. I also had great team back than who really helped me too.
So please find a much better doctor...not worth it. I am looking myself now for rheum..especially now that my GP is not going to be practicing for much longer...i get it is pain..believe me..you will be so much happier if you have doctor you feel cares about you and really tries...so find one please.
Looks for a new doc. It has taken me the better part of about 15 years, but I finally feel that I have put together my "team". I have never spent less that an hour with my rheumy, my PCP, my hemotologist, my derm, or my orthopod. Previous incarnations of these have spent less than 15 minutes per visit and I felt as if they were on piecework. These current docs actually talk with other after a visit with me to keep each other updated on what's happening. My rheum has called me several times just to see how I am. It's a pain, but you need to keep looking until you are satisfied. As George Carlin once said, "Somewhere on Earth there is the world's worst doctor. The scary part is that someone has an appointment with him tomorrow".
I just moved and had a referral including all my current meds. The new Rheumy blatantly ignored anything I said, did not get anything close to a full history from me, was busy filling out prescriptions and chatting with nurses my first exam. I came for two infusions and tried repeatedly to get in touch with him to say my symptoms were far worse and pain way up - the only answer through the nurses was no he says your lower dose is enough, its just the Fibromyalgia. I contacted my old Rheumy and got a new referral to another Rheumy in the next town. Then I had the enjoyment off calling the current Rheumy office and cancelled my appointments - now mind you their attitude the entire time has been - we are the only Rheumy office in town so your stuck with us. They asked why and I simply said “I don’t like him”. He called back in 30 minutes - guess he wasn’t too busy to talk to me after all. I held nothing back and chewed him out. “You have not communicated with me, you dropped all my medications and did not bother to ask how I was doing or follow up, made things up in my chart (I do not have sleep apnea and he put it in my chart), and you in your office laughing it up with your pretty little herd of 20 yr old fillies (I don’t recommend these comments, I was pretty mad by this time if you can’t tell, and every girl in his office is cookie cutter young and blond) laughing it upwhile I am a few feet down the hall crying from pain and you can’t bother to talk to me” Much more was said but you get the gist of the conversation. I think I scared the poor man. He asked for another chance, threw his nurses under the bus. As much as I hate going there, and caught him in several lies, he is now giving my the dose I was on before I moved and knocked off the bs. Now mind you I tormented over what to do for weeks but then I realized something important. I am over 50 with a lot of experience after seeing doctors all my life trying to find out what is wrong with me. I am so knowledgeable that I am often asked if I am a nurse. I have a degree in Math so I’m not an idiot. I am a strong person and should not be afraid to stand up to a small town doctor with his head stuck where the sun doesn’t shine and show him what strong and assertive is! Darn it I’m good enough. (affirmation moment in the mirror). I prepared diligently for the meeting. Made graphs of my pain in relationship to the date and time between infusions - before and after his changes. Used displacement to measure the swelling changes in my hand over time - and had a plastic bag of water to show the amount of swelling in one hand. I also brought pictures of the swelling and my printed list of medications. I verified the last clinic sent the list to him as well. Just to name a few. My son said I was brilliant and very proud of me. In the end I think the Rheumy was still shaking in his boots and had already decided up return my proper dose to me. I am okay with that too. I am so much more comfortable and have some relief again. In the end - we know what we know and I don’t care what any doctor thinks they know. Its our bodies, we live with the pain every day and we can not help but be constantly aware of what hurts and when. We are the ones decimated by this illness. FM is not inflammatory, it rarely is progressive, it does not respond to Remicade, Methortrexate, or Prednisone. I have had the last 4 doctors admit, including this one, that they can not tell the difference between FM and Arthritis pain in a person. Of course my soft tissue hurts - it spasms anytime my joints hurt and cuts of oxygen to the tissue. If they only hit the trigger point and no other point and your in pain all over and they do not press on any other points - I can not see how that test is valid for FM. Treat the PsA anyway!
Emma, Time to change doctor!!!!! I do my own research, but it is more like sharing with my dr when I go in. She doesn't check the joints for inflamation, she takes my word on how I am feeling. You need a LISTENER not a person who acts like a god. You said "you must see" does that mean you don't have a choice of doctors? That's another kind of stress. So sorry that he isn't your advocate.
Amen Gimpsalot!! Good for you - you have given me the idea of taking pictures and making graphs for following my pain. Although, currently my doctor seems pretty good about listening to me, but you just never know....
Emma W. - I am sorry that your doctor sucks - I agree, FIRE HIM!! Time is precious, don't waste it trying to make him happy by trying treatments you know are not working or are not good for you. I have no idea why so many doctor's either don't want to, or think they cannot learn from their patients.
It's YOUR body and YOUR life! Have confidence in knowing you are not a whiner, nor are you asking for special treatment - you are just asking for the treatment you deserve. I remember struggling with that piece a little before being diagnosed....but you already have the diagnosis, which is a good thing.
Put your energy into finding a new doctor. :) Take care.
Hi, maybe you need a new doctor. My son had issues with his specialist so we went to our family doctor and got a referral for another doctor. Now my son is happy with the new doc.
If you can change doctors do so. It sounds like you are in a situation like me where distance is a problem and it is too difficult to change as there may not be another option or like me you have tried the only other option and it was worse.
After my last visit and before my next I try to think of ways that I can use to get the information I need or get what I want to say across to my Rhuemy or challenge his opinion when I am not convinced or sure he is right. It is partly the dismisal that makes me doubt his opinion and partly my own logic or what I have learnt from others on this site or the net.
Next time I am going to go with a list of questions and symtoms or problems with my meds in hand. I have printed out info off the net and I am going to take it with me. If he dismisses me like last time when he made a statement like my hip pain is due to a mechanical problem when nothing showed on the x-rays and I have been to the physio. Next time I am going to ask him how this can be verified and what can be done to help this problem because I am in agony with the pain.
I want to cut him short when he starts talking about himself. I have realised not to bring up any other subject other than my medical one as this would give him reason to talk about anything other than what I am there for. He usually asks me what the weather is like outside which seems to me like he is whinging about being couped up inside but I have to give him the benefit of the doubt as perhaps he is just trying to be pleasant. I will answer him with one word "fine". Once I talked about what had caused my stress and he went on about his own similar story and this was the longest visit I had with him. I was annoyed one time when he obviously had the flu and was still seeing patients with PsA being an auto-immune disease. He is the one driving the BMW and I drive a 1993 Ford Festiva.
What I want to say " Whats that got to do with my treatment or my symptoms" if he takes up the precious time talking about himself. I doubt wether I could actually say it even though I think it. I am always out under 10 minutes and most of that time is looking over his notes and my blood test results and writing new prescriptions. I use to stay silent while he did this and I realised this gave me very little time for me to talk about my symptoms or medication. I feel like I am not being involved in the decision making of my treatment. It is just take these pills situation. I did think about asking the receptionist how long is my appointment time is and if I need more time to look at my watch and sayI haven't had my full appointment time but I know it is not in my nature to behave that way.
It is not right to be treated this way. I have come to realise that my Rhuemy and my medication is only part of my treatment as it only partly works for me. I hope my thoughts help you.
One test rheumys can do is to try you on a steroid pack. If the arthritis responds, then it's inflammatory. If it doesn't respond, it may still be inflammatory though, but at least it's one way to get a diagnosis that your insurance company will allow. I think Ideally, he could try you on a biologic and see if the biologic helps, but your insurance probably won't approve that use of such expensive therapy.
I’m really sorry to hear. I think the next time I get the same treatment, I’m probably going to have to be blunt and ask what it has to do with me.
Unfortunately there seem to be some rhuemys who only consider the bone and joint physical changes to be important, and perhaps he’s one of them, hence his “interpretation” that osteoarthritis and PsA have essentially the same effects.
I’m afraid I don’t have an answer how to deal with it - but my thoughts are with you.
Oh Emma, I’m really sorry and you are so young to be in this much pain:(. I had this exact same pain last week except in my LEFT shoulder/arm/wrist. I have Fibro too and it just sucks because you just don’t know which one is acting up. I’m on my 2nd rheumy ( my first was 79 and just a cranky old man). Fortunately my “new” one is great and really listens to me. I went Monday and she spent a lot of time with me (Im flaring and I’m a hot mess) trying to help me feel better.
My shoulder is definitly my PsA- she gave me a steroid shot right in my shoulder joint and I’m a new woman since Tuesday. I take enbrel twice a week right now ( my psoriasis is also flaring) , Lefludimide, lodine and a couple of supplements ( cherry and fish oil). Keep looking for a new doctor abd i wish you luck!
It is awful to hear that there are so many bad doctors out there! I am so sorry for everyone who struggles just to be heard, never mind treated appropriatly. I agree, if you can find a new doctor, do. If not, and he is a part of a network/group, you can try to contact their management and complain. As with any other service industry, reputation is very important. Let them know that you often leave reveiws of providers at online sites, and you would love for their review to be positive. Sometimes it is better to make a complaint in writing- you and they will have a record and you can get everything on paper without the concern of being dismissed or interrupted. You can also include your insurance company in the process- that can make a pretty big impression. I have had to do that on one occasion (regarding the highly respected director of rheum at a very large teaching hospital)- it was very effective :-D. I think that as patients, we have to be our own (and each others!) best advocates and really speak up (loudly, if need be) when faced with these issues. Good luck
Thanks everyone :) I really appreciate the replies. I have done some more research and there are other rheumy's in the area I can see. All of them are going to be at least an hour away, but thats because I have to take public transport. I think I may call up a few offices and see if any of them have a particular interest in fibromyalgia so I wont be stuck in the same situation.
lol! you are 100% right on! if more of us treated our doctors like just the human beings they are instead of god like beings they stop thinking they are better than most others.
Here is sad part of my story...my general GP who has been kind and i know would do all he could including calling specialist if i ever got hospital sick..has ALS. Why do the great doctors seem to burn out or get sick themselves.
But i love how you yelled at your Rheum ..i have one like that i should have...i have others. I thought since he only one within hour of my house i was stuck...he screwed up so bad..he got worried that i am going to sue him so refused to see me and would not let me see his partner even. what a jerk and all because he did not listen and would not write a prescription my dentist asked more than once for him to do so i could keep my teeth.
You made my day!
Gimpsalot said:
I just moved and had a referral including all my current meds. The new Rheumy blatantly ignored anything I said, did not get anything close to a full history from me, was busy filling out prescriptions and chatting with nurses my first exam. I came for two infusions and tried repeatedly to get in touch with him to say my symptoms were far worse and pain way up - the only answer through the nurses was no he says your lower dose is enough, its just the Fibromyalgia. I contacted my old Rheumy and got a new referral to another Rheumy in the next town. Then I had the enjoyment off calling the current Rheumy office and cancelled my appointments - now mind you their attitude the entire time has been - we are the only Rheumy office in town so your stuck with us. They asked why and I simply said "I don't like him". He called back in 30 minutes - guess he wasn't too busy to talk to me after all. I held nothing back and chewed him out. "You have not communicated with me, you dropped all my medications and did not bother to ask how I was doing or follow up, made things up in my chart (I do not have sleep apnea and he put it in my chart), and you in your office laughing it up with your pretty little herd of 20 yr old fillies (I don't recommend these comments, I was pretty mad by this time if you can't tell, and every girl in his office is cookie cutter young and blond) laughing it upwhile I am a few feet down the hall crying from pain and you can't bother to talk to me" Much more was said but you get the gist of the conversation. I think I scared the poor man. He asked for another chance, threw his nurses under the bus. As much as I hate going there, and caught him in several lies, he is now giving my the dose I was on before I moved and knocked off the bs. Now mind you I tormented over what to do for weeks but then I realized something important. I am over 50 with a lot of experience after seeing doctors all my life trying to find out what is wrong with me. I am so knowledgeable that I am often asked if I am a nurse. I have a degree in Math so I'm not an idiot. I am a strong person and should not be afraid to stand up to a small town doctor with his head stuck where the sun doesn't shine and show him what strong and assertive is! Darn it I'm good enough. (affirmation moment in the mirror). I prepared diligently for the meeting. Made graphs of my pain in relationship to the date and time between infusions - before and after his changes. Used displacement to measure the swelling changes in my hand over time - and had a plastic bag of water to show the amount of swelling in one hand. I also brought pictures of the swelling and my printed list of medications. I verified the last clinic sent the list to him as well. Just to name a few. My son said I was brilliant and very proud of me. In the end I think the Rheumy was still shaking in his boots and had already decided up return my proper dose to me. I am okay with that too. I am so much more comfortable and have some relief again. In the end - we know what we know and I don't care what any doctor thinks they know. Its our bodies, we live with the pain every day and we can not help but be constantly aware of what hurts and when. We are the ones decimated by this illness. FM is not inflammatory, it rarely is progressive, it does not respond to Remicade, Methortrexate, or Prednisone. I have had the last 4 doctors admit, including this one, that they can not tell the difference between FM and Arthritis pain in a person. Of course my soft tissue hurts - it spasms anytime my joints hurt and cuts of oxygen to the tissue. If they only hit the trigger point and no other point and your in pain all over and they do not press on any other points - I can not see how that test is valid for FM. Treat the PsA anyway!
I am glad you pointed out about networking doctors....etc. I grew up with Kaiser and had no idea how this other system works...and found out with some mistakes along the way. So informing people how to use health care systems is important factor that many of us forget those that do not know or are new. Thanks for passing that information along
kyra said:
It is awful to hear that there are so many bad doctors out there! I am so sorry for everyone who struggles just to be heard, never mind treated appropriatly. I agree, if you can find a new doctor, do. If not, and he is a part of a network/group, you can try to contact their management and complain. As with any other service industry, reputation is very important. Let them know that you often leave reveiws of providers at online sites, and you would love for their review to be positive. Sometimes it is better to make a complaint in writing- you and they will have a record and you can get everything on paper without the concern of being dismissed or interrupted. You can also include your insurance company in the process- that can make a pretty big impression. I have had to do that on one occasion (regarding the highly respected director of rheum at a very large teaching hospital)- it was very effective :-D. I think that as patients, we have to be our own (and each others!) best advocates and really speak up (loudly, if need be) when faced with these issues. Good luck :)
