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First Visit with Rheumatologist

So I went my appt with the Rheumatologist yesterday, he does not know where my pain is coming from and sent me for bloodwork and X-rays. He is leaning toward RA but I will know more in 2 weeks at my follow up with results appt but I am pretty much in constant pain now with my ankles and wrists. I used to have lulls in between but now it is all the time and I just deal!! You know "chop wood, carry water" life continues to not care how I feel. He did tell me my blood pressure was elevated and I never had that before, maybe I am just getting OLD. My neck and shoulders although better than ever are still bothering me but I believe that is stress because my job is sooo super stressful right now. I had a nurse give me some fentanyl patches to see if it helps but I have never tried them and am a little freaked out by all the warnings all over the box. I dont know if my pain is as severe as the box seems to decribe I need to use the patches. Anyone on the patches. I actually bought a new car last week and it has all these new gadgets like a back up camera and blind spot detector and i find that helpful with my limited ROM. That is kinda cool! My nephew is graduating from bootcamp next week and I am so excited but the family day is a stand for 3 hrs and watch the field manuevers. I am not sure I can stand for 3 hrs and live to tell the tale>but again we deal! I will get through it just keep "swimmimg". I also have a concert next Sat. that I was hoping to get my groove on at, not really seeing that happening lol. I was pretty sure that after this surgery I was not thinking I would have all these unrelated issues...sucks! I still consider my ACDF a total success. I am a masterpiece in progress right? Well I wish you all a pain free day and will keep you posted on the results of the tests. Blessings Kim
3Level ACDF C4-C7 4/16/12
Kimberly Martin


  • Hi I don't feel right asking what pain meds you are on but online you can find conversation tables to see what size patch you would need. Over the years I have used them several times and just last Friday I had to return to a 50 of fentanyl and it has been agreat help for me. I may have to move up one more size but already stopped the tramadol and percoset. The patches do have issues of safety but with common sense they are worth it If you try them and have any questions please ask or PM me they might help you have a almost normal life.
  • Did your mri that was done before your surgery show any signs of arthritis in your neck?Just wondering because i also have wrist and ankle problems and knee and hip swelling. I've been to physio for my one ankle because it was so stiff and swollen no one could ever figure out what was wrong with it. The physio wanted me to see a rhuematologist but my doctor wouldn't send me. I've been back to my doctor a few times asking and she just keeps saying no. My joints burn and swell and mri showed a lot of arthritis in my spine from top to bottom. I just keep being told to take advils but they don't help. We had the same levels operated on and have problems in the same joints. I think thats a little strange.
  • Kim don't be surprised if you don't have a diagnosis when you go for your follow up appointment at the rhuematologist. Depending on test results and what they see on x-rays it could be a long process to get a diagnosis and can be a process of elimination. I went to one Rhuematologist for 2 years and even took a bunch of different medications, I had finger joint sweeling, wrist and elbow and knee pain. My feet hurt so bad at times I told him it felt like I was walking on broken bones.
    Sometimes the blood work doesn't show everything that is going on as there was no correlation with the swelling and pain.
    I had to have my right knee drained and cortisone injected so many times I stopped counting. Had 3 arthoscopic surgeries on the right knee to include removal of the synovium biopsy showed indications of an inflammatory process.
    1st rhuematologist would only diagnose non-specific inflamatory arthritis because my RF factor was negative. I had many visits to specialist and even an infectious disease dr where I had to give my whole life history including sexual history and a significant amount of blood for different testing only to come back with no medical diagnosis. After having an open synovectomy and a partial knee replacement I went to a different rhuematologist. After a year of testing and treatments she finally diagnosed sero-negative rhuematoid arthritis.
    So now I have a diagnosis, and working on finding a medication regimn that will work and waiting for approval to have the partial knee taken out and a full knee put in.

    Tam, If you feel you need to see a rhuematologist and your doctor won't authorize I'd be finding a new Primary care Dr. I found out from talking with the Nuero Surgeon that RA can have a dramatic impact on your spine and has implications when/if you need a fusion.
    Good luck to both of you.
    laminectomy c4/c5 2008, ACDF c4-c7 Jan 20 2014 sched
  • tammycttammyc Posts: 894
    edited 10/11/2012 - 1:05 PM
    thank you for letting me know that i had no idea about that. I've always suspected RA and saw a Rhuematologist a long time ago and he told me that it could take years for RA to show up in a blood test.I can say that i swam all summer long for exercise to keep my joints moving,my water was always on the cool side even in the hottest days because my pool is half in the shade. Once it got to cool for me to swim within a week of stopping i gained 6 pounds. I'm positive it was all inflammation.
  • Hi Kim, I just wanted to mention about your nephew's boot camp graduation, when my son graduated the ceremony and field maneuvers (this is actually quite a neat show) were done in a field but there were bleachers for us to sit in, so hopefully you wont have to stand for the entire time, but bring a pillow or something because bleachers aren't ever comfy. And tell him congratulations and thank him for his service for me.

    And best wished on getting your results and finding out whats wrong and good luck with the patches.
  • What a crappy jacked up life I have had since my last post. So I went to my Nephew's Graduation which was wondeful and many prideful moments but alot of standing and alot of walking. Needless to say my body was not happy....my feet swelled up and my neck and back were screaming but I dealed. I actually put on a Fentanyl patches when we came home from the graduation but I found that they did not help the pain, they just made me feel out of it so I did not realize I was in pain. I need to function so it is not for me.So I have been in so much pain just like Dave described like walking around on broken bones. I was excited about seeing the MD for results because I thought "great he will give me a plan of care" NOT EVEN CLOSE!! Just like dave had said and although I kind of knew it was possible it still blindsided me, this is what this MD said "all your tests and xrays look normal" no signs of arthiritis. I am like well the signs of arthrirtis would be my swollen ankles.I said as tears filled my eyes ( cause I was realizing my pain would not be addressed that day) What is wrong with me and this MD said your guess is as good as mine!! HUH I said my guess is not as good as yours because you are a doctor!!! ( is this real life) He said maybe you pulled a ligament we will get an MRI of the foot, well I said that is a great theory but what about the other ankle and both wrirts. I started to tell him a little more about my symptons and was crying out of frustration at this time and this guy says "Complaining to me is not going to help you, i will order the MRI please go to front desk" He shewed me out of his office while I am sobbing in pain!!! UNBELIEVABLE" He never said these tests are somtimes wrong or do not always show up nooooo he shewed me> Dimissed me and my feelings! I am not even going for the MRI, I am going for another opinion. I just do not know what to do, I have never had any thing show up regarding arthrirtis, I just had my ACDF and wham these pains came out of no where. I am also SO TIRED it does not matter how much sleep I get, I am exhausted all the time. I had left over NSAIDS from my neck that I started to take and it helps but very little. I just felt so disrespected by this MD and that will not go over well. I WORK for the same hospital he does and I am going to lodge a complaint. There was no compassion, it was almost as if he accused me of lying about my pain level. I had seen him after my nephews graduation so I was more inflammed , but he did not care. He asks me is it really a quality of life issue. I am limping around oh no!!! I am good>>what ever. I am looking at him like listen I just need a plan of care, I have pain meds, I need to get rid of it. I can not live or work on Percocet ...I did got to my concert and learned how to get your groove on from your seat LOL. ok just needed to vent. I am going to need to start over I guess fgo backk to PCP for another referral . I do not know how to make the blood work match my broken body! I will keep you posted. Thanks for your suppoprt. KIm
    3 Level ACDF C4-C7 4/16/12
    Kimberly Martin
  • davrunnerddavrunner Posts: 478
    edited 10/15/2012 - 8:49 AM
    You do need to seek a second opinion. By the time I went to the first rhuematologist I had already been dismissed by my Primary Care Dr on numerous occasions when I went in complaining of painful joints. There are lots of potential causes not all of them are arthritis related. Most rhuematologist won't just dismiss you but realize that blood work will only show signs when you are in a flare, and then not every time. It may take months or years of testing to get to the bottom of it.
    I always thought that to cause pain your arthritis had to be quite advanced, but that is not true, sometimes what will barely show up on an xray or mri will cause excrutiating pain, just depends on where it is and is it hitting a nerve.
    Understand your frustration, but some doctors don't deal well with emotions. They have the book knowledge but when it comes to showing compassion, it's not there.
    Have you kept a pain diary? This may help your primary dr or who ever he sends you to next. There are examples online, they can help isolate the problem.
    Praying that you get some answers that can lead to treatment and some relief.
    laminectomy c4/c5 2008, ACDF c4-c7 Jan 20 2014 sched
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