Saw the Rheumy today - Update

[KittyKat23_78]

I have really mixed feelings today. I was really hopeful that I'd have some answers after my pm doc got me in with this Rheumy for "tests" that wasn't taking new patients. So I filled out the 7 page medical history, went in, talked to him, and he did what in my opinion was a very quick physical exam. He looked at my hands, legs and back for maybe 10 minutes. No X-rays, no blood-work. Nothing.

He told me to get dressed and came back in and told me that he saw no evidence of arthritis and thinks I have Fibro. OK. I have a few of the pressure points that are required for a diagnosis, but only on the left side where my shoulder comes in and out of the joint all the time. I asked him why I had to have a cervical fusion at age 20 (torn disc...no accident) and why my shoulder is all torn up for no apperent reason and he said he didn't know. I asked him why my fingers get stuck and unresponsive during procedures at work and he said that maybe I'm having spasms in my hands. I asked him why I can pop my back by just bending backwards and why it sounds like potato chips 20x a day when I use my back roller and he said he didn't know. He said I "was on all the right medications" and told me to try acupuncture.

That was it.

So....I'm glad I "don't seem to have arthritis", but I'm still not sold on that. I have Ulcerative colitis, and I had Pre-eclampsia, both are auto-immune disorders. I really really think that there is some sort of auto-immune process going on in my body that is causing my joints/discs to damage more easily then they should and it's very frusterating to me that I can't seem to find a doctor who is willing to look into this further. My PM was pretty curious about these things and that's why he sent me to this guy. But I think that as soon as docs read "PTSD and Depression" on my medical history and then read widespread pain, it's just to easy to call it Fibro and tell me to have a nice day. Even the Orthopedic doctor that recently saw me for my shoulder asked me if I had had Lupus and RA tests and when I told her that I had and that they were negative said I shouldn't give up on looking into that because "there are a lot of auto-immune processes out there that we don't understand yet." I just wish I had the money to keep going to doctors, unfortunately I'm tapped out for now. :(

I DID ask him for his opinion on the Suboxone treatment option that the PM doc told me to consider. He was very suprised about that. He asked me how many Vicodin I was taking a day and I told him 2 7.5mg's to which he replied, "that's nothing." I said, "I KNOW!" Now, that's not really taking care of my pain all of the time and I would like to have better pain coverage, but I don't really think I need much more then that. He agreed with me that it would be quite a jump in medication to go to the Suboxone at this point. I've been researching it a lot and have yet to find anyone that has gone to this sort of tx for pm with the small amount of opiates I am currently taking. He did ask me that our conversation be "off the record", as he respects my pm and didn't want him to know he was going against his recommendation. I can respect that and thanked him for his opinion. I assured him that my pm doc asked me to research it and that this was only a part of my research. It was nice to get a medical opinion on it.

Anyhow, thanks again for such a wonderful place to vent. I don't at all mean to undermind Fibromyalgia and know that there are some that suffer from it greatly. I just wonder how often people are misdiagnosed with it because docs don't want to dig deeper. For now I will go with it and keep doing my homework. :)

[Tuckamore]

I am sorry that I am late to this discussion. I understand your frustration with the brief appointment with rheumatologist.

I had forgotten that you have UC. My youngest son has ulcerative colitis and asthma. He is treated by the department head of gastroenterology in a large university teaching hospital. (a mouth full) This top-notch physician checks him every year for involvement of his disease into his joints and other body structures. Ankylosing spondylitis a condition that can be induced by ulcerative colitis. It is a long-term disease that causes inflammation of the joints between the spinal bones, and the joints between the spine and pelvis. Have you been evaluated for AS or at the very least the possibility that UC is affecting your joints?  

I agreed with the rheumatologist. Suboxone seems to be a rather extreme treatment for someone how is currently taking two 7.5mgs of hydrocodone. In my opinion this is the last drug I would agree to take. That's a personal opinion and I do not mean to say that you should not take it. We all have to make our own decisions. I encourage you to continue to research. Once I had made my decision I would print out all the supporting articles/information used in my decision making process and provide them to my PMP. I would then ask him to tell me, why, or why not I had not made a wise decision in his opinion.

In my opinion there are better options than Suboxone for pain management.

I do think your rheumatologist looked at all the information available to him before he made what he thought was a correct diagnosis. Rather he is right or not remains to be seen. I would not discount consulting my gastroenterologist for his opinion.

I am sorry that you are feeling disappointed. I would feel the same. Don't give up. We know our bodies better than anyone else. PTSD should not cause joint issues nor make you less believable. I had PTSD following my MVA. I guess once you have it you always have it. I no longer have SX (symptoms) unless I am under extreme traumatic stress such as when my dad passed in my arms.That did not mean my SIJ Dysfunction and extreme failing mesh related pain is not real. It should mean the same for you.  

My heart goes out to you. You have so many medical issues and you deserve some answers and good pain management. You know you can vent here anytime. That's why we are here...support! :) Take care our friend and lean us one when you are in need.

~Tuck

[MamaAng]

That sounds so very frustrating!  My Rheumo. did the full gamete of lab work on me and nothing has come up positive, except mycoplasma and I have high IgM immunoglobulin antibodies.  I haven't been able to get him to give me a follow-up or the MRI of my sacroiliac joints yet either.  That is where my frustration lies.  I was on 10/500mg of vicodin for 18mths (5/500 for 6 mths before that) and when my l5/s1 herniated all the way they put me on 15mg oxycodone 4/day, said that was the standard bump-up.  

Oh, and my Rheumo gave me Indocin SR for my joint pain, it has helped quite a bit.  

[designgyrl]

Kat,

Any news, have you decided to do anything else.  I'm also wondering why your doctor was wanting you to take Suboxone.  Isn't that medication to help get you off high doses of pain medication?  Or am I wrong.  I know Tuck may know a lot more of that since she does have a medical background, but I just find it's sad.  So, your Rheumy didn't up any medication and you're just having to deal with the very little medication.  Had you ever talked to your doctor before about taking too much vicodin, or were you taking a lot at one time?  I'm just curious to why the Suboxone?  Hope your pain is doing ok.

[flower12345]

Oh boy. I wish that he would've done some tests on you. I know that it's hard to go to so many doctors. I wonder if you could find another rheumy that would be more thorough and would really investigate your symptoms.

I'm so sorry that you're dealing with all of this.

Hugs,

Flower

[designgyrl]

Kat,

Oh my, I'm so sorry that you've been passed around like this. I just don't know how you will be able to stay comfortable on that very little dose of medication.  Have you thought about researching for a different pain doctor?  I don't know, I just feel that maybe your treatment may be a little rough, but I congratulate you on trying to make this work.  Hang in there!

Karen