Frustrated

Hello everyone! Love this site. Just got back from my RA doctor and am feeling very discouraged. My RA started in my feet. I had a knot come up on the side of my foot below my toe. Very painful. Had blood work and found out my RA levels were as high as they could go. Taking methotrexate but was not helping. Then went on methotrexate and Embril. But had one pupil enlarge so was taken off Embril and continued with methotrexate only. Went to my RA today and she says the pain and swelling in my feet and hands are not from RA. RA doesn't effect the joints that are hurting me. She also sent me for X-rays of my feet because my second toe is turning out toward my other toes. But I won't see her for three months and she says we will discuss the results then. She says now she is not willing to try any others meds and wrote a prescription for pain meds. When I wake up in the mornings my feet feel like I am walking on my bones. I have knots on the joints at the top joints of my fingers. Which she also says is not RA related. My hips are now starting to hurt when I sleep . She says RA does not effect these areas. So now what? My am I taking meds for RA?

16 Replies

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  • Have you tried a different rheumatologist? Has this doctor discussed MS or Lupus? I just read that a lot of symptoms for Lupus and RA are the same. Sounds like you need to find more info on your symptoms. I use a great site, RheumatoidArthritis.net, try reading the symptoms and ask questions, this site has doctors that will answer your questions. Hope this helps, gentle hugs

  • I strongly suggest you find a new rheumatologist for a second opinion

  • Wow, really, and this is a Rheumatoligist??? I second Kattat7 and CherylDV, get a second opinion and yes, remove the first Doctor, time for a new one, and the sooner the better. I happen to be taking both Methotrexate and Enbrel right now and am doing very well, Amen to that. Keep Looking Up my friend, there is hope and there really are some really good Doctors out there, you happen to just need to find one and you will, keep on, and remember side effects can and do go away, but please only under Doctors supervision. Pray and may our Lord send you a good one!!! Blessings

  • Please find a new doctor. I have RA and have been on 11 different treatments. It is like finding a needle in a haystack to find what works for you. There is a doctor out there that will listen to your symptoms and try like hell to make you feel better. Good luck. Praying for you!

  • Have you got a second opinion? I would

  • This Ra crap is a gamble trial and error when l stop taking all the Ra meds and have take anti biotics I have found out they do work a little more than I thought.

  • Wow, I'm not sure what to say except I am so sorry. I wondering if you should see a different RA Doctor. Get a second opinion. My RA started in my feet & now my hip is really bad. To the point where I really limp from the pain at times. My doctor said it was the RA. The joint in my toes flare & really hurt but the aren't turning. I'm on methotrexate, leflunomide & will be starting Humira soon. I pray you find answers & help.

  • You should find another RA because I have the same issue and my Rheumy said that this was damage from RA

  • I fell for you, because I am having similar problems with my RA. Why will they only see us every 3 months when we are not stable. I am so frustrated. I went to my primary care cause I was not getting anywhere. I have CRPS (complex regional pain syndrome II), RA, Sjorgens, Reynauds, Degenerative Disk disease, Spinal Stenosis, a Buffalo hump on my neck close to my head from steroids, Swollen parotid saliva glands on both sides of my face and my jaw line. I am on Imuran for RA. Tried Enbrel, Humira and now Actemra biologic. I keep getting thrush in my mouth. Why can't we find a Rheumatologist to help us. Mine is very nice and she was the first to find it, but I am still so suffering just like you.

  • I think it's time for a different RA Doctor. I have the same issues without the nodules and twisting. I take Humria and that's it. Embrel gave me headaches. Also you might possibly have Noropathy but need to be tested. But not a doctor can diagnose that. Good luck!

  • I am so sorry that you are having so much pain. I found out that I had RA in July of 2013, at that time I had no idea what was going on with me. I couldn't hardly walk, or use my hands or fingers for anything. Tried several medicnes, but they didn't work for me and my right hand started drifting real bad, then started Orienca by infusion in May 2014, and no more damage has been done that I can see. Now on my organs, I don't know. But have heard that the infusions help for at least 3 years. I am hoping it does for a lot longer, cuz don't know what comes next. My doctor told me that it was the most aggressive out there right now. I also take Hydroxychlor 200 MG twice daily to help with inflammation. Have found nothing to help with pain, stress, anxiety, or help staying asleep. I am praying for you and all of us that we keep moving and that a cure is just around the corner.

  • FIND A NEW DR. ASAP. RA AFFECTS YOUR WHOLE BODY. INCLUDING INTERNAL ORGANS AND EYES.

  • I have RA and my hips , feet , hands , wrist , etc hurt ... Never heard a dr say that's not RA .... That's weird to me ... Anyone else ever heard this from a dr ?!?! I'm so sorry you're struggling , hang in there !!!!

  • Did they check a uric acid level? It seems gout goes hand in hand with the RA. It is VERY painful and almost always starts as you described. I would also suggest finding a new Dr. I am new to this affliction but mine explained to my husband that this affects ALL joints. It also affects all of your organs so you need a Dr. that is going to help you, not say weird stuff like that. Good luck!

  • Georgiasparks, are you sing a rheumatologist? Mine says the pain and swelling is from RA. I have swollen fingers and sometimes can't close my hand. I've notice a nodule near my elbow which my rheumatologist says looks like a bone spur. You may want to get a second opinion. I've taken Aleve and ibuprofen and they do very little for the pain.

  • Hi Georgia...I'm a little confused. Your seeing an RA doctor and she claims pain in feet, hips and hands are not related to RA? I've had RA for over 50 years (diagnosed at 10) my metacarpal joints in both hands were replaced in 86&87. Both hands had swollen nodules on top. This is caused by inflammation surrounding your tendons and definitely part of the RA. If your feet are inflamed and painful you can get braces and support to prevent or delay deformity. I have been tested for RA factor in blood and never received positive results. The sedimentation rate testing is the important one. I would consider getting a second opinion or seeing a different doctor.