Looking for lay-opinions, please!
I am researched to death and could use some opinions! :) My history is long/detailed and I SO appreciate time and input/thoughts.
I've been struggling for a while now and I'm frustrated. To start, I am a 45 year old woman and in otherwise good health. When this all started I considered myself an athlete...now, not so much.
Four years ago I weighed nearly 300lbs and I went through a medical weight loss program. I lost 140lbs through diet control and exercise and I felt AWESOME! I signed up to run a half marathon (on 10-10-10, my first race ever!) and about 6 weeks before the race I started having pretty significant left hip pain. I went to my family doc and he said bursitis and I got a cortisone shot. That didn't help and two weeks later I went to a sports med doctor who put me on 20mg prednisone daily to get me through the race (2 weeks). I did the race and came of the prednisone but the hip pain was still present. A physician/runner friend of mine suggested I try a chiropractor who does Active Release Technique and I did. I saw the chiro for about 2 months and it helped but didn't get me back to 100%. In December 2010 I quit going to the chiro.
In January 2011, I started having significant pain in my wrists as well as loss of strength in my fingers - not painful but they felt very weak. I noticed after a few weeks that I'd started using a jar opener to avoid the grasp because it hurt my fingers. I was also having trouble with my thumbs - significant sharp pain that prevented me from using my "opposable thumb." Dr. Google made me suspect de Quervain Syndrome...and of course all this led me to possible RA. I have a family history of auto-immune issues (maternal aunt had debilitating RA, possibly a sister with mild RA, and my other sister had MS) so I went back to my family doctor. Without me voicing my suspicion he poked on me, pulled on me, and said I have RA and ordered testing for RF. He told me that it was very early and that he suspected it would come back negative. He gave me a script for Mobic and sent me on my way. The RF test came back negative and I didn't feel like the Mobic was helping. I went back to see my family doc to discuss the negative result and that the Mobic was not helping and he told me I don't have RA. :dizzy: My head was spinning this way and that...I have RA, I don't have RA...ACK!!! I was done trusting my family doc and I asked for a referral to a rheumatologist. He refused to give me one. I came home and promptly scheduled an appointment with THE ONLY rheumatologist in town who accepts patients without a physician referral - it was SIX MONTHS OUT.
February 2011: I started having right heel pain. I was running/walking 35-40 miles a week and figured plantar fasciitis so I did everything for that - stretching, ice, rest, etc.
End of March 2011: I messed up my left knee, the knee ortho said that the meniscus was badly frayed but not torn. He offered "wait it out" or surgery, I opted for "wait-it-out." I quit all exercise for the month of April (2011). During that time, the bum left knee put tremendous stress on my right foot/heel and the plantar fasciitis got really bad.
May 2011: Back to working out and the plantar fasciitis was awful - I was barely able to put weight on my right foot by the end of the day.
July 2011: I was preparing to do the half-marathon again and I went to a sports med doctor to resolve the foot pain. He was concerned about a stress fracture. We did an MRI and it ruled out a stress fracture but showed a good case of plantar fasciitis. I got a cortisone shot in my right foot and he put me in a cam-walker (removable boot) for ALL weight-bearing activity.
August/September 2011: Wearing the boot for ALL weight-bearing activity, it helped but not completely. I went back for a check in the end of August and had a NASTY case of bursitis in my left hip...got another cortisone shot (that's three so far if you are counting).
September 2011: Less than two weeks after cortisone in left hip, I had a flare of bursitis SO BAD that I was completely immobile and near tears - this one in my right shoulder. I got ANOTHER cortisone shot (shot #4, eleven days after the last in my hip) for my shoulder. Just like my hip, that gave me significant relief but again, didn't RESOLVE it. That was the first week of September. I saw an ankle-osteo guy in late September (the MRI showed bone lesions in my ankle, it's called OCD) for the bone lesions...go figure the treatment is - yep...cortisone shot. He didn't think it was prudent to do ANOTHER cortisone shot when I've had so many and I don't really think the OCD is causing my plantar fasciitis problem.
October 2011: ASTYM therapy for the plantar fasciitis. It is the "gold standard" treatment and resolves plantar fasciitis in 97% of cases - I am the 3% for whom it doesn't work. We moved on to ultrasound therapy and deep tissue massage therapy, nothing but limited success.
December 2011: Back at the sports med doctor and I went ahead with cortisone shot #5, this one in my ankle. It did help the plantar fasciitis for a few days but it went back to "usual." He also ordered ANA, CRP and sed rate, I got the following results:
ANA Panel: negative
CRP: 21 (<5) HIGH
ESR: 31 (0-20) HIGH
His letter to me said that the elevated labs were attributed to the plantar fasciitis and not a connective tissue/inflammatory disease. He said he was out of ideas/options and handed me off to the ankle-osteo.
January 2012: I saw ankle-guy last week and after talking, he ordered ANA, CRP, SED rate, Chem panel, Vit D. All normal with the following exceptions:
CRP: 26 (<5) HIGH
ESR: 56 (0-20) HIGH
Vit. D, 25-Hydroxy: 14.3 (30-100) LOW
ANA Panel: negative
RA Factor: negative / 10.5 (0-13.9)
Okay...with all that in mind, I expect I'll be talking to the ankle-osteo tomorrow. What should I expect? Should I expect a referral to a rheumatologist with these numbers? I know the CRP and ESR are inflammation markers, do they indicate severity of inflammation? If so, do these numbers indicate "slight" inflammation? "Average" inflammation? "A lot" of inflammation?
I have noticed that my pain is bilateral - both hips seems to have trochanteric bursitis, both shoulders have mild bursitis, after looking at the physiology of the ankle/heel, I think that my pain is from heel bursitis (although only ONE foot hurts). These joints hurt bilaterally BUT - one is usually worse than the other, sometimes/often times significantly worse.
In total, a recap of my history:
Left and right shoulder bursitis, right side severe and treated with cortisone
Left and right hip bursitis, left side moderate to sharp pain and treated with cortisone x 2
Right ankle Osteochondritis Dissecans, treated with cortisone
Right heel plantar fasciitis / bursitis (?), treated with cortisone
I know this is A LOT - I live it. I am 45 years old and I get around as if I were 75. I worked SO HARD to lose all that weight and now, with my limited ability for exercise, I am gaining it back. I am TOO YOUNG to feel like this.
If anyone is still with me, I'd appreciate ANY thoughts, comments, or direction. I am a firm believer in being my own expert on my condition - I know my body better than anyone! - and my confidence in the medical community is pretty low.
Re: Looking for lay-opinions, please!
HI Skoozey...I'm Jenny and one of those people who after years and years of OA, developed Ra and then Sjogrens. It was a prolonged period of "development" so I understand your frustration.
I don't think a single week goes by when I don't get asked about the Rheumatoid Factor test and obviously your primary doc doesn't understand it and I suspect your ankle doc doesn't either. So hang in there while I explain it.
There are tests for a disease that are "specific" and others that simply tests for the presence of inflammation, knowing that infection and all sorts of things can cause "inflammation". RF is an early "specific" test for RA(meaning it was developed a long time ago). BUT...and it's a huge BUT....5% of the general population will have a positive RF without any signs of the disease. Up to 25% of those with RA have a negative RF(including me). And in the elderly, up to 20% of the general population has a positive RF with no signs of it. Bottom line is, unless it is a very high positive, it is almost useless and a negative means NOTHING.
The ESR is one of those "non-specific" tests for inflammation but when it gets up to numbers like 56, it means you have a very strong inflammatory problem going on....a lot more than plantar fasciitis would ever cause. You can get numbers up to 30 with a bad cold or the flu and even severe stress but you won't get a 56 without a problem.
The CRP is an even stronger indication of inflammation and your number is rising. This is most definitely NOT from plantar fasciitis. I have RA and mine has never gone over 2 and my ESR has rarely gone over 55.
You need to see a rheumatologist. I take it you never saw the doc who was a 6 month wait. Let me tell you, that is not unusual. They are very busy docs and they take their time with a patient so appointments are few and far between. You should have made an appointment.
One of the realities of life is that there is no rule that you can't get osteoarthritis and plantar fasciitis and bursitis and all those other problems and still get Ra on top of it. I've had 14 knee surgeries and have chronic bursitis in my hips and knees and shoulders, battled plantar fasciitis and tendonitis everywhere(currently battling it in my quadriceps muscles of both knees) and I also have RA. I think that the very slow development of Ra can make you have all those types of inflammation of the soft tissues of the body. For me, they were almost like a precursor to the actual joint problems of RA. My rheumy agrees.
As I said, up to 25% of those with RA are what they call "sero-negative" in that none of the "specific" blood tests for Ra are positive. You need another test that is far more reliable for Ra called Anti-CCP. But again, a certain percentage are still negative, including me. But that does not mean all blood work is negative. Ra affects the entire body and so your blood work should start to show a disturbance in the general well being. I am anemic with a chronic low hemoglobin and hematocrit. My white blood cell count is always slightly high as if I had a slight infection. My ESR and CRP are always up even if at a very low level....but they never go back down which would happen after an illness like the flu.
A rheumatologist isn't just for illnesses like Ra...they can also manage OA and treat things like plantar fasciitis, burisits, tendonitis and other soft tissue things. The difference between a rheumy and an ortho is that they never operate and they know the medical treatment and the drugs involved, as experts.....orthos are NOT experts in medically treating joint problems and should not be used in place of a rheumy. Having done that for years myself, I can honestly tell you, orthos suck at managing OA and it's associated problems(tendonitis, bursitis, fasciitis etc)...they just want to operate. But when all hope is gone and you need surgery, they rheumy won't hesitate to send you to the best ortho on town.
So call that doc back and make an appointment for the medical management of you current problems with an eye to watching you for developing sero-negative RA. Or demand your primary give you a referral...tell him you'll go with or without a referral so he might as well give you one. My doc works out of a group practice called The Arthritis Treatment Center to underscore the nature of their practice....and on their logo is has Muscles, Joints, Bones....to let everyone know that is what they treat.....the skeleton and everything that holds it together. And on top of it, they are experts in auto-immune disorders, the most confusing field of medicine out there.
As of 1900, there were 2 forms of arthritis...OA and RA. By 2000, there were 100 kinds of arthritic disorders. By 2050, there will be 200 variations of arthritic disorders. Unless you are a rheumy, you have no idea. Your docs are back in 1950's in their thinking on Ra.
Re: Looking for lay-opinions, please!
I understand how you feel because unfortunately the medical field is still trained on this sort of thing based on old school. What they are not being taught is that most of these kind of problems stem from believe it not the brain. When we are young our bodies healed themselves as we age the neurotransmitters in our brains lose things or get scarred. There is, however, a way to reverse this. I sent you a friend request so we can talk privately if you'd like.
Re: Looking for lay-opinions, please!
Jenny, I can't thank you enough for your time and input. You validated my thoughts, that is exactly what I needed. I've ached for so long and it happened so gradually that I honestly think that I have no idea how bad I really feel. My whole life I have never been a person who goes to the doctor, in fact I suffered with gallstones for MANY years because I'd always give up before I got to a resolution. I've been close to giving up several times now and just "live" with it. I don't because it kills me to think just a year ago I was an athlete - in excellent condition - and now I can't get up from a chair without a pregnant pause as I stand to collect my joints in order to move. I lost 140 pounds, I should feel AWESOME and instead I feel HORRIBLE.
Thank you for helping me to stay on track. I'll get a referral to a rheumatologist - a good one - and I'll stick with this to a resolution.
Incidentally, I did go see that rheumatologist over the summer...the one I made an appointment with in January of last year. He poked me, pulled on my legs, asked me some questions, and told me I didn't have RA. No labs, nothing. That would explain why the ankle-ortho rolled his eyes and told me there was a reason he is the only rheumatologist in town who accepts patients without a referral. The rest of them won't even talk to me - my doctor's office has to call directly and make the appointment for me. I just hope I don't have another 6 month wait.
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