Chronic joint pain...UPDATE pg 5: A diagnosis!

[Jennasis]

I'm just casting a broad net here. My sister has been experiencing chronic, daily, excruciating pain in pretty much all of her joints. She's young (just turned 30) and in good health otherwise. It's been many months now and she is really suffering. She's been to a lot of doctors (GP, Neurologist, Endocrinologist, Rheumatologist etc) and undergone a lot of tests, but so far they've turned up nothing. She's been tested for Lyme's, MS, and a bunch of others that escape me at the moment. Has anyone else experienced anything like this?? I feel so helpless for her. She's got another round of doctor's appointments today...more tests. She's hoping they'll order an MRI. She's worried she's going to wind up with the DX of Fibromyalgia...the catchall.

The only other thing I was able to suggest to her was seeing an Allergist and that maybe she was allergic to something (wheat? gluten??).

 

[Southernmiss]

Has her vitamin d level been checked? Low vit d can cause severe body aches and is an easy fix.

 

[Jennasis]

Has her vitamin d level been checked? Low vit d can cause severe body aches and is an easy fix.

Will add this to the list. Thanks!

 

[yoopermom]

Does she live in a tick infested area? Up here we not only see tons of Lymes Disease in dogs and humans, we see blastomycosis in both as well. We have two dogs that suffer from it, and my good friend's mom died of complications from it.

Some of the Lyme's tests are very iffy. I would research it, and then have her retested.

Terri

 

[Jennasis]

Does she live in a tick infested area? Up here we not only see tons of Lymes Disease in dogs and humans, we see blastomycosis in both as well. We have two dogs that suffer from it, and my good friend's mom died of complications from it.

Some of the Lyme's tests are very iffy. I would research it, and then have her retested.

Terri

Yeah, she lives on Long Island. Plenty of ticks there. Her Lyme's came back negative. They retested yesterday but the doctor did test for some other tick-thing...possibly the blastomycosis?? He put her on the drug/antibiotic treatment for it just in case. I will check with her and see if that was what they tested her for.

 

[Jennasis]

She just told me she is Vitamin D deficient. They've been treating her for that for a month now. 50,000mg/day. They also tested for babesia and erlichiosis.

 

[paintnolish]

I'm going through something similar. Yes, my vitamin d level was really low. I am taking vit d and it is helping with bone pain. I've had a bone scan, and that was fine. Have they checked for rheumatoid arthritis and lupus? I'm an otherwise healthy 36 year old. It's really frustrating and scary. They don't seem to be taking me seriously! Anyway, feel free to pm with questions, otherwise, please keep me posted. I'd like to her why happens!

 

[Southernmiss]

She just told me she is Vitamin D deficient. They've been treating her for that for a month now. 50,000mg/day. They also tested for babesia and erlichiosis.

Vitamin d supplementing takes a little while before symptoms improve. I was there and took the 50000 prescription for a few months. My levels improved some, but I now take 8000 ius daily. My aches have almost gone away. I still have aches when I am exhausted but they are no longer chronic or as severe. I get in the sun when I am really achy . This helps too

 

[Jennasis]

I'm going through something similar. Yes, my vitamin d level was really low. I am taking vit d and it is helping with bone pain. I've had a bone scan, and that was fine. Have they checked for rheumatoid arthritis and lupus? I'm an otherwise healthy 36 year old. It's really frustrating and scary. They don't seem to be taking me seriously! Anyway, feel free to pm with questions, otherwise, please keep me posted. I'd like to her why happens!

YES! My poor sister had to go to a new doctor when her regular doc poo-poo'd her and didn't take her seriously at all! She has been tested for Lupus. She see's the rheumatologist today but I think they did test for RA already, and ton a ton of X-rays too. Checked for Arthritis.

 

[threeboysmom]

I wouldn't even bother with the wheat/gluten allergy test.

Have her eliminate gluten from her diet for 10 days and see how she feels after.

My joint pain went COMPLETELY away after I eliminated wheat (which I did to lose a few lbs. - had NO IDEA gluten was connected with my pain).

I am truly amazed how pain-free I am just from changing my diet.

 

[Jennasis]

I wouldn't even bother with the wheat/gluten allergy test.

Have her eliminate gluten from her diet for 10 days and see how she feels after.

My joint pain went COMPLETELY away after I eliminated wheat (which I did to lose a few lbs. - had NO IDEA gluten was connected with my pain).

I am truly amazed how pain-free I am just from changing my diet.

Passing this on to her. Honestly with all the things she's been tested for, the allergy thing was all I could come up with. Certainly worth a shot!

 

[Poohforyou]

YES! My poor sister had to go to a new doctor when her regular doc poo-poo'd her and didn't take her seriously at all! She has been tested for Lupus. She see's the rheumatologist today but I think they did test for RA already, and ton a ton of X-rays too. Checked for Arthritis.

I'm glad she's seeing a rheumatologist. Lupus isn't something that can be tested for. There are blood indicators that could mean Lupus but they aren't definitive. It's a clinical diagnosis and a rheumatologist is the best at doing that. I wish her the best. Rheumatoid arthritis is another possibility.

I've been dealing with an illness for over 3 years that hasn't yet been diagnosed. It comes and goes and the symptoms are all over the place. Doctors are leaning towards auto-immune at this point.

 

[HM]

She should probably try to eat gluten-free. My parents said doing so really helped with their joints and arthritis, and very quickly. Even if it's not a cure, it might bring some relief.

Also, my mother gets bad joint pain if she overdoes it with Grapefruit, so if she's eating a lot of citrus, she might want to curtail that too.

 

[paintnolish]

I'm glad she's seeing a rheumatologist. Lupus isn't something that can be tested for. There are blood indicators that could mean Lupus but they aren't definitive. It's a clinical diagnosis and a rheumatologist is the best at doing that. I wish her the best. Rheumatoid arthritis is another possibility.

I've been dealing with an illness for over 3 years that hasn't yet been diagnosed. It comes and goes and the symptoms are all over the place. Doctors are leaning towards auto-immune at this point.

My dr. said lupus is a difficult diagnosis to make. My rheumatologist said they'd do another blood test in 3 months and see if the levels which are consistent with lupus have gone up.
My primary care dr. really wants to give me meds for the symptoms. I just want to know the cause. Every symptom I have she says can be caused by an autoimmune disease. I feel like I get the brush off! I am seeing a new rheumatologist in June. I also have an irregular heartbeat that I have to see a cardiologist for soon, which, once again, my dr. said could be related.
Anyway, good luck Pooh and good luck to the op's sister.

 

[Feralpeg]

DD has chronic joint pain. She also has endometriosis, IBS, irregular heartbeats, low-grade fever, urological inflammation and an unexplained rash. She also has some indication of Raynard's disease. Her finger and toenails turn blue on a regular basis. She has seen an endocrinologist, cardiologist, urologist and rheumatologist.

Her ANA is higher than normal, but not off the scale. So far, they are all saying she has some type of auto immune problem, but not definitive enough to call it Lupus. They are currently calling it fibromyalgia and watching her closely.

She underwent a number of allergy tests and tried eliminating gluten and other products from her diet with no improvement of her symptoms.

It is very frustrating to not be able to put an exact label on her issues. However, even if they do come up with a better diagnosis, there is no magic bullet cure. They just have to treat the symptoms.

OP, have her ask the doctor about her ANA level. If it is repeatedly over 180, it could be an indication of Lupus.

 

[disfan07]

DD has chronic joint pain. She also has endometriosis, IBS, irregular heartbeats, low-grade fever, urological inflammation and an unexplained rash. She also has some indication of Raynard's disease. Her finger and toenails turn blue on a regular basis. She has seen an endocrinologist, cardiologist, urologist and rheumatologist.

Her ANA is higher than normal, but not off the scale. So far, they are all saying she has some type of auto immune problem, but not definitive enough to call it Lupus. They are currently calling it fibromyalgia and watching her closely.

She underwent a number of allergy tests and tried eliminating gluten and other products from her diet with no improvement of her symptoms.

It is very frustrating to not be able to put an exact label on her issues. However, even if they do come up with a better diagnosis, there is no magic bullet cure. They just have to treat the symptoms.

OP, have her ask the doctor about her ANA level. If it is repeatedly over 180, it could be an indication of

 

[seven dwarfs]

Lymes with co infections. She needs to go to a lyme literate dr. Do research on lyme. (ILADS-good place to start) I have two children that have almost died. One has a positive ana and many issues you have mentioned and is only 10! Blood test are not always accurate. Good luck to you both!

 

[luvwinnie]

Seeing ONE rheum may not be enough. I had to see three before finding someone who actually helped me. My initial dx was undifferentiated connective tissue disease. Then I went on to develop psoriasis and psoriatic arthritis. At first prednisone helped me immediately. Since she is on LI, I'll suggest my dr if she is interested. Dr Gary Solomon at NYU. Love him I wish her luck. I know how frustrating it is.

 

[LiveYourLife]

Jennasis, this is going to be a strange question but what is your Sister's stress level at? Not specifically related to her health issues, but is she, in general, a tightly wound person?

 

[WDWBarb]

My DD's illness started with joint pain. It then moved to extreme fatigue, hair loss, headaches and dizziness. Her ANA would alternate between a + & -. Very low Vit D. All bloodwork came back normal. She got sicker and sicker until a very good doctor finally tested for and diagnosed Hashimoto's. It's an autoimmune disease that attacks the thyroid. Many doctors missed it because her thyroid levels were normal, but that's not uncommon.

There is a reason and it needs to be accurately diagnosed. She needs to keep pushing until they know. My DD is almost all better now thanks to one small pill per day. I just wish they hadn't dismissed her joint pain when she had it because it could have prevented her from suffering so long.