Some days my pain is so severeall I do is cry!

Wow. You're a medical textbook on legs, aren't you! Congratulations on finally getting the RA diagnosis - it's a relief, yet throws you for a loop. It's good to finally know, but boy, you don't want to have it. And don't worry about the length of your post, some stories require length. I've had RA for 40 years and my medical files are bigger than War and Peace (if you want to read some of mine, just click on my name to see my profile)..

It appears to be fairly common to use Enbrel and Humira with methotrexate, at least in the US. I'm Canadian and had never heard of it until I started writing for HealthCentral. Sometimes, the biologics need a bit of a booster and although you may not get any benefit from meth on its own, it could increase the effectiveness of the TNF blocker. And by the way, look forward to starting Enbrel or Humira. They have been miracle drugs for me and for many others, so it's quite likely that your husband might end up having to trouble keeping up with you once they kick in!

In terms of the burning pain... it sounds familiar in a couple ways. On the one hand, it sounds an awful lot like fibromyalgia pain, although if it were, you would likely have it in your upper body, as well. Are you still taken Lyrica? If not, you might want to try for a few days and see if that helps. On the other hand, pain that concentrates below the waist often comes from the back, so maybe that has something to do with it, as well - although the burning quality can describe fibromyalgia pain, in my experience, it can also describe sciatica, which tends to start in the buttocks and blew down in the back and/or size of the thighs and calves. The connection with the treatment starting may be a coincidence or maybe not. When I've taken some of these types of drugs, one of the side effects I've experienced as muscle pain, although the fact that the pain is only below the waist seems to me to indicate that it is a coincidence and probably has more to do with e.g., sciatica. However, I'd recommend that you speak to your doctor about it.

I'm really a head case these days!  When I read and re-read my post before hitting POST COMMENT I never saw that one!  Probably because I live in Pennsylvania and only a true born and bred Pennsylvanian would call their home state "PA"-  (PeeAY) 

Thanks Lene fpr your reply post!  At first I. too, thought it might be another way that my sciatica could present itself.  I did have L-5 S-1 spinal fusion in 2002 because of an injury to my back.  At that time I had sciatica that bad that I was prescribed Duragesic (fentanyl) patches!  I wondered if this was the right side going now but this pain is so odd and very hard to describe-  it's not as deep as bone or muscle pain.  If it makes any sense at all it feels like a searing, burning pain that is just below my skin!  It is widespread below the waist only.  Another odd possibility is that it could be a result of CRPS or RSD that I have following the celluiitis attack after my lymph node resection.  I thought I knew all kinds of pain prior to being diagnosed with CRPS/RSD but I can truthfully say the pain of CRPS/RSD is unlike anything I have ever felt.  It is not a deep bone-penetrating pain like RA or sciatica is;  it feels like a layer of something just below my skin is on fire.  That is much like the way my upper arm feels during an acute bout of pain.

I guess the one thing that continues to baffle me is this:  I take 80 mg of oxycontin three times a day as well as 400mg of gabapentin (neurontin)and I STILL have this crazy pain.  I tried Lyrica twice and I have had a really bad reaction to it. 

What will it take to stop this recent pain??  A coma?  The reason I take the narcotic pain meds is to alleviate the pain caused by that syndrome and yet there is now another pain type I experience that is not even touched by strong narcotics!  I am totally baffled by this.

I am so glad tp have finally found this forum because I have been searching for some answers as well as people with RA like mine.  It's funny you should say it could be firbro, too, because that is exactly what my rheum. doctor says...  I might have severe RA as well as sever fibro-  as if ONE is not good enough!

Like I said,  finding all of you seems like my only hope!

~Holly~

Holly, I have RA & Fibro. I know EXACTLY how you feel with the burning pain. It is different than the joint pain of RA. And the way you describe it, I can relate to that too. My Fibromyalgia pain is under the skin like you said but not a deep joint pain. I often describe it like someone has punched you & you have a tender, sore, bruise....and most of the time I get swollen lumps in the painful areas of muscle or skin. I often get the intense searing burning pain in my muscles now too. I notice I can be walking or going up stairs & it starts in my legs. It sears through the entire muscle & I have to stop the movement & sometimes sit down to get the searing to stop. It does stop but I have to stop what I'm doing at that very instant to get it to quit. It passes and I move on. If it happens again I just have to keep stopping. I don't have a clue as to whether this is the RA or Fibro.  I tend to think it has to do with the Fibro because it is in the muscles itself. If yours doesn't go away with stopping the motion, then I'm not sure. Definitely talk to the Rheumy about this. 

I do know that chronic pain syndrome, RA, Fibro can all have similar symptoms thats why it is hard to get a final diagnosis. I think it takes the Dr. time to see your patterns, especially if there is no surefire test for things like Fibro or Chronic Pain. And I also went quite awhile telling my Dr. about my symptoms, then onto a Rheumatologist, Neurologist, and tests for my muscles, nerves, and such. Then after all that I finally get the RA diagnosis. I didn't test positive for the bloodwork & initially my PCP said I didn't have it. It wasn't until time went on & me persisting about my symptoms that after a bit over a year, he FINALLY referred me to a Rheumatologist. Then the Rheumy said I had RA & that he had many patients who didn't test positive on blood work but all their patterns fit for RA. So, talk about being angry at my PCP for delaying & the runaround for over a year, not to mention the pain I had to endure....including that hopeless feeling and bouts of not knowing what to do & crying! But I atleast had an answer. 

As far as the pain your going thru, I also know what it feels like to have pain that doesn't respond to the medication. I also think this comes from the Fibro with me. Plus the fact that they don't know that much about Fibro even still & the best way to treat it. There are days where nothing I do helps. I guess you just learn to accept the things you can't change, do what you can to help yourself & stay educated about what you have. It's a matter of adjusting not only your life but your daily life, depending on your symptoms at any given point. You don't have to give up what you love but you do have to be flexible with changes, this includes your hubby. Just know that you may not be able to go boating today but tomorrow you may have a better day & can do it. My hubby & I love to travel. It's EXTREMELY hard on me now. I have to alter how I travel, how long I travel, and adjust to be as comfortable as I can. But I still get to do what I love, it just takes more effort & planning. I can't do a 6 hr. flight now, but I can break it up with stops so I can walk around or sit in a more comfortable seat. Breaking it up allows me to not get stiff or inflammation & then pain afterwards. If we're driving, I stop every 2 hrs. Yes that makes the trip  long but it's the only way I can do a driving trip. We usually only do a max 6 hr. drive then spend the night & do the rest of the driving the next day if it's a long trip.

Everything is about adjustments. We like to do cruises too. Walking from 1 end of the ship to the other or using the steps, KILLS my hips, knees, ankles,  & feet. So my hubby pestered me to try a wheelchair on our last cruise. I felt that was the ultimate humiliating thing to do but wanted to do something that would make it easier so he could still enjoy a cruise with me. Well, it was the best thing & I told him during & after the cruise that he was right. It made such a difference for me. I used it whenever we were going to dinner or for longer treks across the ship. I also used it on the shore excursions so I wouldn't have to walk as much. It enabled me to do more stuff not only on the ship but also the excursions off the ship. The cruise prior, I wound up hurting so much & so swollen, I spent almost everyday in the cabin while my hubby & daughter did stuff. We only did 2 excursions during that week. One of them, by the time I got off the ship, got to where we were doing the activity, went thru the training, got my suit on, got into the water....I was exhausted & in pain & had to tell the instructor I couldn't do it. It was awful. I cried & felt it was such a waste. Then spent the next 2 days in the cabin, sore, swollen, in pain, & so fatigued I had to sleep alot. I couldn't go to dinner because I didn't have the energy to even put on my formal clothes. A couple of nights my hubby had to bring me dinner. But, using that wheelchair made a world of difference so I HIGHLY recommend that when you need to travel. It makes going thru the airport easier, especially if there are delays or your in line for a long time. 

You will be able to still do what you love, with adjustments. I hope this helps you and sorry this reply was so long. I figured you really needed to hear from someone else who had similar symptoms. Your not alone....many of us on here have the same experiences & can relate. You come on here when you need a shoulder to lean on!