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Muscle pain that doesn’t seem to heal, possibly autoimmune?

I’m a 32-year-old white female, and I’ve developed an increasingly lengthy list of muscles with tendinitis/other issues over the past 10 years (e.g., plantar fasciitis in both feet, TMJ jaw pain, neck and shoulder pain, hip pain, pain in both forearms, and most recently carpal tunnel in both hands/wrists). All of these have a direct cause/injury, but I certainly seem more prone to getting injured and it just never healing despite much PT. I also have some odd autoimmune stuff (e.g., Raynaud’s, Cholinergic urticaria, and dry eyes). I’m starting to think maybe something more serious/global is wrong with me. I went to a rheumatologist a few years ago but blood work came back normal for any sort of thyroid condition or Lupus. I’d love any suggestions on where to go next, since this is increasingly impacting my quality of life and mental health.

Thanks so much in advance for any help you can provide!
Best Answer
1081992 tn?1389903637
"I’m starting to think maybe something more serious/global is wrong with me."
Hi, the short answer is that your thinking is very, very, very sound. Always think "inflammatory".

You can look variously into:
- types of inflammatory myopathy (including dermatomyositis and polymyositis)
- inflammatory arthritis
- others that are similar

...then you can note how many times you encounter reading that "the exact cause is not known"; but regardless, the treatment is very similar (immune suppression).

Unfortunately, it's a long road ahead of you. Yes, it's related to your dad. Yes, his causes are "not exactly known" either -- so the more you come to understand, the more you will help him and yourself.

I wouldn't stick with any doc who doesn't think it is all related. I wouldn't go back to that same rheumy, either - they seem to have just gone through the motions. Don't be surprised if/when docs wrongly tell you to see a shrink.

Do you know the results of your ESR and CRP tests?

3 Comments
This is incredibly helpful, and along the lines of what I was thinking when I first went to the rheumatologist. I will try to see another rheumatologist ASAP! I don’t see anything in my test results about those two specific tests, unless they go by a different name. I did have a “Rheumatoid Factor” assessment that came out normal, but that was back in early 2020.
Just to update, I saw the rheumatologist last week and got blood work done. The blood work came back yesterday and my sodium levels were very low and potassium levels were elevated. They made me redo the bloodwork to double check, and I should get those results back next week. Any thoughts on what that could mean? A quick Google search tells me it could be related to lupus.
If they follow up with you about that, I’d be interested to see what they say! If you check out my post I’m in a similar situation (ANA, antibody tests, Rheum factor, C-reactive protein all normal) but my sodium is low and potassium on the higher end of normal. I was told to eat more sodium and I was like…I physically could not have more sodium unless I dumped travel sized packets in my mouth haha! I have a lot of sodium in my diet already so that surprised me
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1081992 tn?1389903637
How did they rule out lupus?

Was it by negative ANA alone, or also negative anti-dsDNA?
Helpful - 0
1081992 tn?1389903637
Well, Kristin, let's see if we should be alarmed here or not. Do you have:

- dark urine
- foamy urine
- red urine (trace blood)
- swelling, especially feet/ankles
- you prbly would have mentioned if you have kidney pain
- low urine output, with resulting high blood pressure

If not having those, we can relax for now.

Nephritis, especially lupus nephritis, is generally a big thing. It can cause not enough secretion of potassium and not enough retention of sodium. Meanwhile, the kidney inflammation (neph = kidney) can possibly cause irreversible kidney damage. I don't usually talk in an alarming way, but this is different - esp since you've had something inflammatory for years. Also, there are other types of nephritis besides from lupus.

But there can be other causes for your mineral imbalance. Didn't they order creatinine/GFR testing? That can help distinguish from non-inflammatory causes.

Are you maybe dehydrated? Any severe estrogen effects?

I suppose I should say at the end here that you prbly don't have kidney damage, but it's a big enough thing that it should be kept in mind.

Helpful - 0
1081992 tn?1389903637
Let me know how your appt goes. The GP's reaction can be anything from being impressed to just brushing everything off.

Helpful - 0
1081992 tn?1389903637
Is Lyme common where you are?
Helpful - 0
1 Comments
It is somewhat - I live in Maryland now, but I grew up in NJ where it is even more common.
1081992 tn?1389903637
It's best to know as much as possible about your tests before your appt, so you don't waste precious time with the doc having to explain.

ESR (aka sed rate) and CRP are very common and inexpensive blood tests for inflammation. It's extremely unlikely you didn't have those tests. Look in your web portal.

There are more advanced tests for *chronic* inflammation, such as IL-1, IL-6 and TNF. You should want those.

You also almost certainly had the ANA test, that result is important.

You have "large joint" inflammation. But Rheumatoid Arthritis would normally be in "small joints", most especially fingers. Still, it's fairly mandatory to have run the RF test, to rule RA out. It's lucky you don't have RA, because that's very destructive.

"myo" = muscle, so myositis is inflammation of muscle

"poly" =  many (places)

"derma" = skin

I'd ask the new rheumy to try a small dose  of prednisone (a steroid), for a short period - just to see how much relief you get. You should not want high dose or long term at this point, because of a myriad of bad side effects.

Or try Plaquenil (hydroxychloroquine), which is pretty safe.

I'd say it's wrong for the previous rheumy to say "you don't have lupus or rheumatoid arthritis, so goodbye". Especially since you are progressing.

Do you have insomnia? And/or immense life stress?
Helpful - 0
1 Comments
I so appreciate this information!! I’ve written it all down for my general practitioner appointment today so I can make a case for a new rheumy.

I can’t locate any of those tests on my web portal, but I will certainly request them!

Ive had a few brief bouts of insomnia, but not for a few months now. I’ve had some anxiety my entire life but I wouldn’t say immense life stress. Definitely more stress lately with my increasing injuries, as it’s beginning to impact the things I love to do (hiking, biking).
Avatar universal
I should mention that I’m otherwise healthy and active - 5’6’’ and 115 lbs. There is a family history of autoimmune stuff (my father has chronic fatigue syndrome and fibromyalgia, cousin has celiac)
Helpful - 0

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