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Overall Body Pain and Weakness: Help with doctors NOVA

This isn’t exactly riding related, but I know many riders have dealt with issues like this so I’m hoping someone on here can help. I’m desperate at this point.

My mom (60’s) has been dealing with body pain and weakness for a year now. It started in her hands and has progressed to her whole body. The pain is debilitating and no one seems to care. It’s is now in her back, shoulders, arms, legs, etc. Sometimes she can’t get out of the car unassisted because the body weakness is so bad. She cannot open a bottle, even a pill bottle. This is a woman who used to go hiking with me. She would walk around the arena 3million times with small kids on their ponies. She can’t walk around the arena once now. She also has the butterfly rash on her face.

At first doctors thought maybe arthritis in her hands, so they x-rayed and the radiographs were extremely clean. They still offered to inject the thumb joint, which was done. There was some relief in the thumb from this.
When the pain started beginning in other places, she went to a rheumatologist. They did testing for autoimmune disease but everything was negative. The rheumatologist did not feel it was anything autoimmune related and prescribed meloxicam.
The pain kept getting worse, so her normal doctor took her off of the statin she was on (apparently sometimes statins cause pain) She’s been off of it for four months with no change.
Approximately two months ago, she developed a dry cough so she went into the doctor. They gave her a steroid for it.
It was like night and day. She woke up the next day feeling like her old self. Even the rash went away. She did a 7 day course of steroids.
When she came off the steroids she still felt better than before for about a month. There was still pain, but she didn’t have as much weakness.
Not long after, the cough came back so they did a full cardiology workup. Her heart was healthy, no issues. However, there was some mild emphysema in her lungs. They gave her a 30 day course of medication for it, which seems to have worked at this point. (No more cough).

After the steroid treatment, we went back to the rheumatologist. She still doesn’t believe it could be anything autoimmune, and despite already trying meloxicam told her to try it again. Well, that was two weeks ago and it has done nothing.

She’s basically given up on doctors at this point, and I can’t blame her. The responses have been not great. Main doctor has said its age and shes being a wimp. Joint doc said ‘sounds autoimmune’ but isn’t a doctor for that. Rheumatologist says it’s not autoimmune, and basically she needs to learn to live with the pain. I find that unacceptable.

I’m in northern virginia. We are willing to travel if it will get us answers. Thoughts, advice, doctor recs, etc, would be appreciated.

Edited to add:
She’s been tested for lyme twice and had testing for vitamin and mineral deficiency.

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Jingles for your Mom. Can she see a different rheumatologist for a second opinion?

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Yes, She has an appointment for another but it’s not for a while. It’s surprisingly hard to get in to doctors around here.

Wow, butterfly rash and feeling better with steroids just screams “Lupus!” I hope she can see another rheumatologist soon. I know you can have seronegative RA; I wonder if that’s true for lupus as well?

Best of luck and jingles to your mom. Unfortunately, I know how she feels with the overwhelming pain. It’s a sucky way to live, especially for someone who had been so active.



Good that she has another appointment with someone different. I have RA and or Psoriatic Arthritis, getting any diagnosis was difficult as I tested negative on all the tests for years, by the time I found a rheumatologist who would listen, I had a lot of joint damage.
Can she get on a cancellation list maybe? That might get her in quicker.


Will she let you go in with her during her appointment? Sometimes that “extra” voice is the one that gets heard.


I have been going with her to all appointments, I have some pre-med (I always say, enough to be dangerous and not enough to be helpful LOL) she isn’t great about advocating for herself with doctors.
There’s an emergency RA doctor I’m going to see about tomorrow. They say they take walk ins.

@RMJacobs I Feel the same way. Seems to scream lupus to me. But the AMA is negative. It can be a negative and the person still have lupus, but it’s rare.


I wonder whether there are any alternative therapies that may help your mother? I’m a big fan of Ayurveda, the medical system that’s been used in India for several thousand years. There was a clinic in Washington, D.C. that I used to go to, with a Johns Hopkins educated doctor, Nancy Lonsdorf. Nice blending of traditional and alternative medicine.

I, too, had given up on doctors; I believed that Ayurveda saved my life.

There are other things, like Reiki, energy healing, acupuncture, etc.

By the way, my insurance covered all of the Ayurveda.

ETA: yoga is a part of Ayurveda, although it’s generally seen as a separate entity these days.


The thing with lupus or rheumatoid arthritis, which are likely culprits here, only disease modifying meds will prevent joint and organ damage. Alternative therapies may help her feel better in the interim, but the ultimate goal needs to be to get her on appropriate meds if it’s one of the crippling autoimmune diseases.



I’m so sorry she is going through this. Even though she has tested negative twice for Lyme, see if any doc will agree to put her on doxycycline or minocycline for a couple of weeks. I have several neighbors who apparently had a different tick borne disease that didn’t test, but was treated with doxy. Their symptoms were quite similar to your mom’s (whole body pain and weakness). Best if luck.


I am very sorry to hear about your mom’s pain. Chronic pain is horrible.
Has anyone mentioned fibromyalgia? Has she been able to see a pain-management specialist doctor?
Jingling for her!


Who has she seen in NoVA?
The most well respected rheumatologist I know in No VA is Dr. Paul Rochmis. I think he is retired now, but if you can get in touch with him he migh be able to recommend someone.


A long time friend/ ex roommate has had chronic fatigue along with many other things and she experiences many of the issues your mom is suffering with.

Just something else to check if they haven’t already.


First, she need a new doctor, and she needs to make an official complaint against the one who called her a wimp. Not acceptable.

Something similar happened to me, a Dr told me “at my age” it was hormones and I was just depressed and gave me a scrip for Prozac.
Seriously? This is not 1952 . Yes I filed a complaint.
I found a really good rheumatologist and ended up being diagnosed with lupus and fibromyalgia.
The problem with lupus is that unless she’s in an active flare the things they treat for don’t show up in the blood.
There is also a type of lupus that is not autoimmune.
As far as the statin, yes it can cause issues but if you take COQ10 at the same time it helps a lot of that.


Yes. CoQ10 helps me with pain caused by statins. So did changing statins. I went from atorvastatin to rosuvastatin. Then added CoQ10.


@frugalannie I pushed for this originally but the doctors wouldn’t do it.

@Rackonteur No doctors have brought it up but I have. So far no luck. She’s hoping for treatment instead of pain management, but maybe that’s the next step. As far as acupuncture… there’s absolutely no way I’m getting her to willingly allow someone to put needles in her :laughing:

@Janet I’m trying to find her card but don’t seem to have it. She’s under one of those larger businesses with multiple doctors. I’ll post it here once I find it. (Dr. Mary R. Romanic)

@Annie10 yeah I was not happy with that doctor. I don’t think it’s the statin because she has been on it for years before, and since stopping it the pain hasn’t relieved at all.

Thank you to everyone who answered. We are still trying to get a sooner appointment time. It’s amazing how far out these doctors are booked.


The pain often will remain because statins can cause permanent muscle damage by inhibiting the COQ10. That’s why they say take them together… might be worth checking out

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I went undiagnosed for several years until I basically had a mental break in the doctors office and maybe yelled a little bit while sobbing uncontrollably - I was active and otherwise looked healthy, but I was in so much pain and I was so tired. I got a definitive diagnosis following a synovial fluid test.

Covid really wrecked my body. It put me in a really bad place for a long time. It’s been nearly three years now and I feel like I’m just starting to level out again. All the luck to her. I hope you get answers and solutions.


Interesting, it doesn’t hurt to try it. I’ll order some.

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I’m on statins and take CoQ10 just not at the same time. CoQ10 in the AM and statin at night. If you take them at the same time, the station depletes the Coq10 supplement.

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