So sorry for what you're going through..........horrendous! Unfortunately it seems that many of us have been left 'twisting in the wind' as you say, and its definitely not good enough care. Can you go to another Rheumatologist? Have you thought of keeping a pain diary? and including a drug diary. I felt it was the only way to document what had happened when, what had helped, and what actions I had taken and if they worked. I know we shouldn't have to do this, but I know it helped the new doc on my rheumatlogists team understand where I was.
Doctors take an oath to do no harm. It should not matter if she is sleep deprived.....raging hormones.....or whatever. She has possibly caused considerable harm and if she damaged any relationship you have with another health care professional she should woman up and fix it. I personally haven't seen a rhuemy since early in my diagnosis as I can't afford one, and the one I had downplayed my physical discomfort, like we all seek out referrals to a rhuemy. My GP is a clamhead, but he refills my DMARDS and pain management, I am on Naprosyn, flexiril, and 10/650 Lortab, they barely take the edge off, plus he just added a new diagnosis, Reynaud's...yay....so gabapentin is added to the mix. I would not wish this disease PSA, on anyone,but wouldn't it be awesome if these doctors could walk....for lack of a better word in our bodies for a few hours...gentle hugs and prayers that you get the answers you and all of us deserve...btw, my gp is giving me crap because I want labs done more than he does....I informed him it was my liver and we only have one, now make the referral...
GrumpyCat,
You might try your insurance company. I'm not sure what they'll have for you, but they might have case management and maybe you can get some help that way. The insurance company has an interest in seeing that you get appropriate, good quality medical care.
I feel more and more that all doctors are suck. I;m going to make sure I always have a back up rheumy. Can you go to your emergency room? Althought they aren't great about giving out pain med.
Is Maryland a medicinal marijuana state? I read clinical studies that show that it helps patients with inflammation and pain.
Also, do you think a massage would help?
I had no idea how difficult the rheumy healthcare is in the US until my sister got Lupus a few years ago, my personal experience and hearing all of you.
I'm enraged and want to do something about it ! I volunteered for the arthritis foundation fundraiser and our first meeting is Feb 19th. I'm going to make contacts and try start some type of awareness of this problem.
I think my rheum is great! I also like the derm they recommended. I got referred to the rheum by a good ortho. Good doctors tend to refer people to other good doctors.
Where do you live Andrew? Can you pass along your rheumy's name?
I'm in Louisville. I go to Steve Stern at the Kentuckiana Center for Better Bone and Joint Health. (502) ■■■■■■■■. I have a relatively uncomplicated case. My worst symptom was a badly swollen knee. On my first visit, they did an exam and told me what they found from the fluids my ortho had taken from my knee earlier that week. They were very definitive that I have PsA and I was told that I'd go on MTX for one month and then start on Enbrel or Humira. The MTX was just to satisfy the step therapy program of my insurance company.
They drew the fluid from my knee and put in cortisone. By the time the cortisone wore off, the Enbrel had taken over. Since then my appointments are just me telling them that I'm still feeling great and still healthy.
I never had a problem with my rheumy he’s been great and also his nurse they have always been understanding seem like I complain all the time about something . He always listens and the explains what’s going on with me. As far as treatment goes started out with mtx, then humira. It did well then stopped working. Next was enbrel and mtx. Enbrel never worked for me so then came remicade and mtx. Could not take mtx pills was taking shots could not get shots no more went back to pills and had to stop taking them. Rheumy put on leflunomide instead with remicade. Rheumy said the good thing about remicade is you can adjust the dose I’ve been on it for almost two years and still tinkering with the dose but it get better each time. I said all that to say this my rheumy has been great and understanding most of my problems now are not the joints but fatigue and muscle soreness . He understands its part of Psa I think a lot of rheumy don’t understand Psa and how serious it is. If you look at some web sites it like no big deal. I’m sorry for what you went through just remember there are other drs.
I don't blame you for being upset. Doctors do seem to abandon at times. Maybe because they know we need them. I don't think it's fair what she did or how she reacted to your concern and need for help. Can you try to get another doctor? I know it took me a while before I found someone that would listen to my concerns and answer questions. I hope you can get better help.
UPDATE
Just to let everyone know, I was able to change docs. I moved to another doc in the same practice, because my disease is so out of control right now, I do not feel comfortable completely jumping ship. I have seen the new doc once before and I was really impressed with him. Also, a friend just met him as well and she had a really good impression too. I have an appointment with him in a week, and I am already preparing my list of topics!
I ended up writing a nice note to the other Rheum apologizing for being so upset with her. When I had time to think about it, I realized that I did not want the relationship to end on a sour note. I did have to speak to her today about an emergent situation and she was pleasant and professional.
I received my records from their office in the mail today and reviewed them. I found that she was fairly objective in describing our interaction and there is really only one comment that I will need to address with the new Rheumatologist. I have found him to be very objective and intellectual, so I don’t think I will have a difficult time getting my point across and I won’t have to drag his partner through the mud.
Thanks to everyone for your support and letting me vent. That visit really knocked me for a loop and I really needed some friends!
Warm hugs all around!
GrumpyCat
I'm so glad you have a new doctor! Added stress by anyone needs to be avoided for PsA. We are paying for good health services, we deserved it and I feel I should be "picky."
I’m glad you have a new doctor too! 
Event better UPDATE!!!
I had a follow up appointment with my primary doc yesterday. She started the discussion off by saying that she was so sorry about my strange experience with the rheumatologist. She also told me that the whole conversation with the rheum made her really uncomfortable and felt like the rheum was questioning her treatment for me. She also said that she couldn’t understand how a doctor could leave a patient with poorly controlled PsA for 6 weeks with no follow up and no regard for the pain they experience. I felt so comforted knowing that I wasn’t just being hypersensitive to the situation and that my feelings were on the right track. I took my husband with me to the follow up appt and he was equally impressed by my primary doc.
I have learned my lesson: Never go to an appointment without a witness.
That is great Grumpy! Isn't it wonderful to get some support and understanding? Sometimes it feels we are struggling alone with this foe. It is hard enough without health care workers making it harder; we really need them to make it easier. I am impressed with your primary. She was able to break ranks and support her patient. Yeah for her! I am so happy for you Grumpy! <3
I also went on Remicade about a month ago after being on Humira for months.
How are you feeling?
Chris
I just went on Remicade and am catching every cold in the book! n I think those little green guys from the Mucinex commercial found me and moved right in!
I was on a z-pak a coupla weeks ago and it did nothing... My cold was pretty bad... massive headache... congested beyond belief... blech...
So I called my primary (of 14 years or so) and left a message for him. He called me back at night and said "What are you whining about now". No kiddin'... just like that.
My rheumie is also very quiet and impersonal. I had an infusion two weeks ago and was walking down the corridor on my way out and she was standing in the hallway. I had to walk right by her. She looked at me quickly and didn't even acknowlege that she knew me!
I'm an easy going, fun lovin' guy... I just don't know how to go about finding the right team... i guess I'm thinking " the devils I know".
ugh... how do I go about searching for new docs?
Good Days,
Chris
Hey, Lamb. I was thinking about this comment today. I was wondering if I was hurting more than the typical person, or if the docs were just throwing drugs at me.i always though I had a good tolerance for pain, the only thing that has ever knocked me out is sciatica, but I had it when I was a kid (15-16 years) and when my hips changed when I was pregnant I managed it without drugs. Not that there was another choice with pregnancy. I just wanted to be able to function on a basic level ie., bathe, help the kids with their daily stuff, get out of bed. I don’t know if I could have done it without the opiates, but I wonder why. The rheum told me today the same thing that you did in this post. I sort of felt like he was blaming me, but I thought that the opana would be better than popping Vicodin all day hoping to achieve relief. Also, at that time, my rheum was on maternity leave, so I had no guidance from their office. I guess I am trying to determine why I was given this drug when my rheum (and the new rheum) seem to think that it is evil. I was unable to function at even the most basic level before I started taking it, it did its job so I could achieve basic to average function, now I’m getting better and am working with the prescribing doc to taper down. I guess I’m just confused, and I wonder if you have any insight? I guess my biggest concern is why my pain was so severe? I had a lot of trouble even walking, could not bathe alone, or do any ADLs. I lost 20 pounds because I couldn’t prepare food for myself. It was kind of bad. Does no one else have pain like that?
tntlamb said:
In the midst of your Rheumys inappropriate rant there were some kernels of truth. I got lost in the acronyms. Do you have a primary care doc that you trust? If so ask him to manage your care and start over. The words "ibuprofen, Cymablta, Vicodin and opana ER for pain control" all in one sentence is scary. It is amazing that with all of those you have a gut OR pain control response at all. It is hard to tell with all of those what the remicade is doing and chronic pain syndrome is certainly a possibility. She should have been incensed at the pain management docs not you. They seem to be more of a pill mill than pain management specialists.
I feel for you and the spot you are in. You WILL be able to get this done. keep us posted. This is a painful disease, but it should NEVER be so out of control that its Opana painful NOT EVER. Someone needs a trip to the woodshed (not you)
Left my Rheumy appointment last week in tears also!! I drove an hour and a half- WAITED an hour and a half to see her. Oh- plus the 6 months in between our appointments ;) Anyway she was behind, but that did not bother me. However a ways into OUR appointment her nurse barged in- said "how can I help you make this appointment move along" cut our appointment short and she ACTUALLY started changing the paper on the bed with me sitting there with the specialist.I was appalled and devastated. I had a list of questions AND symptoms from me AND my Family Dr. that they/I needed to go over with her.
I feel like a ping pong ball sometimes- one Dr. says- nope these symptoms don't have anything to do with me- ask your specialist- must be the meds. So go to specialist they say- nope nothing to do with PSA or your meds- go back and see your Dr. Grrrr. That's another point for another post ;)
All this to say- sorry you had a terrible appointment. Nothing is more devastating than not being "heard" or treated with respect OR an action plan in your case. In the end- it's US that have to live with our disease NOT them. So if you have to find a new Dr. and/or a new specialist then you go girl. Unfortunately we have to be our own advocates sometimes :(
I TOTALLy get the 'we look normal". Flip
Hi Cocoloco, I'm so sorry you had a terrible appointment. I've learned to fire doctors, quickly and swiftly. I pay for health insurance and my co-pays, They work for me and I've learned not to accept incompetent or uncaring medical care. This has worked well for me - I finally found a rheumy, I like and his staff and how they treat me. I'd still be barely walking if I hadn't taken this approach. I saw 8 docs over 18 months, was bedridden for 2 weeks because I couldn't walk, until I finally was correctly diagnosed with PsA.
Cocoloco53 said:
Left my Rheumy appointment last week in tears also!! I drove an hour and a half- WAITED an hour and a half to see her. Oh- plus the 6 months in between our appointments ;) Anyway she was behind, but that did not bother me. However a ways into OUR appointment her nurse barged in- said "how can I help you make this appointment move along" cut our appointment short and she ACTUALLY started changing the paper on the bed with me sitting there with the specialist.I was appalled and devastated. I had a list of questions AND symptoms from me AND my Family Dr. that they/I needed to go over with her.
I feel like a ping pong ball sometimes- one Dr. says- nope these symptoms don't have anything to do with me- ask your specialist- must be the meds. So go to specialist they say- nope nothing to do with PSA or your meds- go back and see your Dr. Grrrr. That's another point for another post ;)
All this to say- sorry you had a terrible appointment. Nothing is more devastating than not being "heard" or treated with respect OR an action plan in your case. In the end- it's US that have to live with our disease NOT them. So if you have to find a new Dr. and/or a new specialist then you go girl. Unfortunately we have to be our own advocates sometimes :(
I TOTALLy get the 'we look normal". Flip