Now what?

July 5, 2014 3:59 PM

Rheumatologist threw up her hands. Now where do I go?

First, YANMD, TINMA, etc.

I saw a rheumatologist a couple of week ago because my PCP refuses to treat my fibromyalgia symptoms. She made no medication changes to what my last rheum (in Korea) prescribed before I left there last year. I have terrible joint pain in my toes, fingers, wrists, elbows and shoulders. I take Meloxicam (a NSAID) but it helps little. The pain and stiffness is worse in the morning.

She ran a RA antibody test, ANA and sed rate. The RA and ANA were negative. The sed rate was very high. My vitamin D was also low (28 where the low end of normal is 30) but that wasn't a surprise (it's been as low as 9). Although she didn't run one, my CRP was elevated in the past. It's my understanding that both sed rate and CRP are nonspecific indicators of an inflammatory process.

She told my the sed rate isn't rheumatolgically relevant and doesn't want me to take a D supplement (I'll be asking my psychiatrists opinion on that WRT depression).

I've probably had fibro for 20 years, but only diagnosed about 5 years ago. The joint pain started after a severe infection from a cat scratch, including a septic knee.

Where do I go from here? Is there another specialist I should be consulting? All my doctors are from University Hospitals. Should I seek out a second opinion with someone from the Cleveland Clinic? Both hospital systems are nationally recognized, so quality of care isn't an issue. But all my UH records have the fibro dx on there and I'm wondering if that isn't hampering my care. As in all the pain is getting attributed to fibro without regards for some other process. What I need is Dr. House to take my case.

In case it's relevant other symptoms include widespread muscle pain and spasms, depression, menstrual migrates (on continuous HBC), dry mouth/eyes/nose and trouble with concentration/memory/learning.

*Or do I just need to learn to live with the pain/stiffness/etc and do my best with medication management?*

posted by kathrynm to Health & Fitness (12 answers total)

My vitamin D was also low (28 where the low end of normal is 30) but that wasn't a surprise (it's been as low as 9).

She told my the sed rate isn't rheumatolgically relevant and doesn't want me to take a D supplement (I'll be asking my psychiatrists opinion on that WRT depression).

From wikipedia: "US labs generally report 25(OH)D levels as ng/mL. Other countries often use nmol/L." It seems possible that your measurement of 28 was in nmol/L while the measurement of 9 was in ng/mL, which would be equal to 22.5 nmol/L.

In any case, 30nmol/L or 12 ng/mL is not the low end of normal, it's the cut-off for deficiency, which is associated with a host of negative symptoms. The target range is between 50-125mol/L, or 20-50ng/mL. I would follow up on why the doc didn't want you to take a supplement.
posted by ludwig_van at 5:10 PM on July 5, 2014 [1 favorite]

Find another rheumatologist for a second opinion, especially on that vitamin D part. FWIW there's a very, very clear link between my vitamin D levels and manifestation of depression/anxiety, even at levels slightly higher than the low end of normal. Vitamin D deficiency also gave me dry eyes, dry skin, and brain fog.

But at the very least a good doctor should be helping you to manage your pain better, even if there isn't some root cause that can be cured outright. Just because a doctor works for a respected institution doesn't mean that doctor is going to do a good job in any specific case.
posted by Andrhia at 5:10 PM on July 5, 2014 [1 favorite]

IANAD, TINMA.

I've had fibromyalgia for 20 years, diagnosed 12 years ago. I have often prayed for Dr. House to show up and fix me. (In fact, one of my more recent symptoms - peripheral neuropathy - was fixed after I watched an episode of House where I learned that it can be caused by a vitamin B12 deficiency!)

You should definitely seek a second opinion. I don't know the UH system, but I know the Cleveland Clinic, and they are fan-freaking-tastic. If you can't get a second opinion from a rheumy, try to find a pain specialist to take your case. About a year ago, I declined treatment for my fibro from my PCP, because I had bad luck with meds for it in the past. A new recent condition has me under care from a neurologist, who put me on Gabapentin to treat this new thing. It's had a huge, dramatic effect on my fibro, as well as the new condition.

In the meantime: some things that have helped me over the years when I either haven't had health insurance, or haven't had time to visit doctors:

Exercise. Every other day at least. Nothing too strenuous, don't push too hard, but do exercise. Walking, pushups, crunches, dancing around your living room in your underwear, just get yourself moving.

An anti-inflammatory diet. Some of the worst inflammatory foods include sugar, trans fats, dairy, over-refined grains, and gluten. Go for fruits and veggies, low gluten, low sugar, lean meats.

OTC anti-inflammatory drugs like Tylenol and Advil. Low doses so you're not hurting your kidneys or liver.

Vitamin supplements like D, B-complex, Magnesium. I also take an herbal supplement called Rhodiola, which I find gives me more energy.

Feel free to MeMail me if you want to talk to someone who understands what you're going through.
posted by The Almighty Mommy Goddess at 5:32 PM on July 5, 2014 [2 favorites]

My condition is different to yours but I also see rheumatologists and have for almost 30 years. Based on what you've said, I would definitely seek a second opinion from a different rheumatologist. Good luck in finding a doctor with more interest in and ability to track down what's affecting you.
posted by immlass at 6:17 PM on July 5, 2014

try a doctor who does integrative medicine, or functional medicine...even a nutritionist to get you away from anti-inflammatory foods, as was suggested above. they will add supplements to help you out, too. i have tried this out and it has helped some of my problems, but not completely cured them.
posted by Jewel98 at 7:07 PM on July 5, 2014

I've been through the ringer at Clinic myself, they're good but they're not PERFECT. If you'd be open to it, I would highly recommend Anne of Cleveland Acupuncture. She's amazing, and she's gotten results for people the medical system have failed, myself included. She is also really, really good with diet adjusting, as suggested above. A lot of the infertility patients she treats get pregnant as soon as she helps them improve what they're eating! She is trained in traditional Chinese medicine, too, some of which has worked VERY well for my various problems over the years.

Disclosure: I'm her friend, but she's also been treating me for 10+ years and I would be going to her constantly for my current mysterious amped up migraines if she wasn't 40 min away and my schedule = nuts. Feel free to ask any specific questions in MeMail!
posted by bitter-girl.com at 11:23 PM on July 5, 2014

Response by poster: First let me say I'm not interested in anything based in magic. I don't have chakras that need aligned or the like. What I'm interested in is actual evidence based medicine, and I realize it might not be perfect.

Now that that's out of the way, here's the reference range the lab gives for the Vitamin D assay.

DEFICIENCY: less than 20 NG/ML
INSUFFICIENCY: 20-29 NG/ML
OPTIMUM LEVEL: 30-80 NG/ML
POSSIBLE TOXICITY: greater than 80 NG/ML

THIS ASSAY ACCURATELY QUANTIFIES THE SUM OF VITAMIN D3, 25-HYDROXY AND VIT D2,25-HYDROXY.

I guess 28 is close enough to 30 in her book. But I'll definitely be asking the pdoc about it too.

I am doing C25K about 3 days a week and walking another 2-3 days.

Changing my diet drastically isn't going to happen right now for Reasons.

I guess I'll see what the insurance company says about second opinions. I'm curious to know if I should go outside UH and not mention the fibro dx. It seems like any pain I have gets attributed to that, despite joint pain not being part of my symptom complex until after that infection.
posted by kathrynm at 8:02 AM on July 6, 2014

IANAD, etc. Definitely get a second opinion. I have Crohn's Disease, which is another chronic inflammatory disease. Mine has joint pain/arthritis associated with it. I begged for my Gastroenterologist to test my vitamin D levels; they were around as low as yours, and he didn't care. He said that diet and vitamin D have no bearing whatsoever on whether or not the Crohn's is flaring, and put me on two separate medications instead.

After changing doctors to one who didn't seem to want to make me cry every time I visited the office, I'm now supplementing D so that my levels are high normal, eating no wheat, and I'm not taking any medications at all. My Crohn's is in complete remission, with only a few mild arthritis days when the weather gets weird.
posted by themissy at 9:05 AM on July 6, 2014 [2 favorites]

I would try supplementing with flaxseed oil and/or ground flaxseeds. They're high in omega-3 fatty acids, which are known to have anti-inflammatory effects. I don't know much about fibromyalgia, but a quick Google search suggests that there are some people who say that their symptoms are improved by consuming omega-3s.
posted by alex1965 at 9:54 AM on July 6, 2014 [1 favorite]

Was the infection in the same knee you fell on back in 2010?

I ask because the swelling you experienced in your calf and thigh in the wake of that injury makes me think you popped the membranous sack around your knee joint (the bursa), and that the swelling was due to escaped synovial fluid.

Sometimes the bursa does not heal up terribly well and can leak a bit subsequently, and perhaps more significantly in your case, become more vulnerable to bacterial invasion.

When bacteria do get in there, they can hide out and become more resistant to eradication by the standard antibiotic therapies, and I think your arthritis could be due to a lingering infection in that knee which your immune system is successfully keeping in check now, but only at a cost of attacking joints in the rest of your body.

If I were you what I'd want, but might have difficulty getting a doctor to do, is another look at the synovial fluid in that knee, and some appropriate antibiotic instilled directly into the bursa.
posted by jamjam at 10:00 AM on July 6, 2014 [1 favorite]

Response by poster: It is actually the same knee, but that had totally cleared up with draining and antibiotics. It later got septic after I was scratched by my cat and ended up with pasturella in my blood (just about as close to septic as you can get without actually being septic) and it then seeded my knee. I had about 6 weeks of IV antibiotics and another 4-6 of oral. The ID doc I saw felt the infection was completely gone and it hasn't been a problem since.

So I guess I'll really push pdoc about the Vitamin D and arrange for a second opinion. I think I'll try to see someone at UH again but try to get them to look at me fresh. It'll be a while before I can get in. It took me about 2 months to get into see the first rheumatologist (I miss Korea where I could walk in to see any specialist in private practice and not worry about appointments).

In the mean time, I'll cope as best as I can. I'm really tired of fighting.
posted by kathrynm at 11:21 AM on July 6, 2014

I had about 6 weeks of IV antibiotics and another 4-6 of oral. The ID doc I saw felt the infection was completely gone and it hasn't been a problem since.

Six weeks of IV antibiotics and 4 more of oral would seem to imply an infection that you had great difficulty clearing; I still think there's a significant possibility of a remnant in that knee.
posted by jamjam at 12:16 PM on July 6, 2014 [3 favorites]