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

[mickeymedic]

I battled joint pain for years. Issues would crop up in different joints - first my hands and wrists, then a knee, then the other knee, then back to my hands and wrists. Because of my age and my line of work (at the time), I was diagnosed with tendonitis and/or repetitive motion injuries. At the same time I had GI issues which my doctors and I never thought were related.

Then I started to have tingling in my toes that slowly worked its way all the way up both legs. That combined with extreme pain and fatigue like nothing I can even describe send me back to the doctor to insist on answers. My first doctor prescribed pain meds and muscle relaxers, patted me on the head and said that she had no idea what was causing my pain and numbness, but she was certain that it would be temporary and not to worry about it. In her defense, she did send me for blood work and other than a low vit D level (which she treated), everything came back normal.

I wasn't satisfied with a 6-month prescription for a very addictive pain medication. I wanted answers so that I could get back to my life. I finally reached a breaking point and found a new doctor. But, as with any new doctor's office, it was quite a while before I could get in for an initial appointment. By then I had lost my job and had been out of work for a few weeks. So by the time I saw my new doctor, my symptoms had gone into remission. I had mini flare-ups with joint pain and numbness here and there, but my blood work always came back negative. Finally after about 2 or 3 years, one of my knees became really swollen for no reason. I was referred to an orthopedic doctor to rule out injury. Then finally was referred to a Rheumatologist. Turns out I have had psoriatic arthritis (similar to rheumatoid arthritis) - probably since I was in my early 20's. It had never dawned on me to go see a dermatologist for my skin problems (which are directly related.) Now that I am on meds for the arthritis and amazingly enough, my GI issues have tapered off significantly.

I've been told that I very well might morph into Lupus at some point. I have a bunch of Lupus indicators, but my blood work comes back normal every time. I'm just happy to have answers. And for those who are asking about stress levels - you are actually on to something there. My symptoms do get worse with stress. It's not because stress is the root cause, but because it is an aggravating factor.

Getting diagnosed with an autoimmune disease is a long process. OP, I hope your sister gets some relief soon.

 

[John VN]

Yes, I am a male but I too can related to the listed issues by many on this thread because of thyroid issues and also parathyroid issues. I am posting this article because there is pertinent information that might not have been brought to the attention of many individuals, women and men. Please take a moment and read.

http://www.womentowomen.com/hypothyroidism/iodinedeficiency-thyroidhealth.aspx

If I have intruded on this thread to a negative degree, I am truly sorry but so much of what you all have written, I can relate too.

Best of luck to all and may your health improve.

 

[Poohforyou]

how do you find a lymes literate dr. I'd love to be tested. I"ve been dealing with severe back pain, joint paint and stomach problems. They can't figure out the problem. I'm self diagnosing which is clearly making myself worst.

Honestly, be very careful if you decide to see a doctor who claims to be a lyme specialist. There are some out there that are fine but others end up doing more harm than good. Putting patients on hardcore antibiotics for months at a time can end up doing more damage than good.

There are lots of symptoms that can be attributed to a multitude of illnesses including lyme. That being said, I went to a Lyme Specialist in Flemington who was pretty good and ran a ton of blood work. I didn't have lyme or any other tick borne illnesses.

 

[amyy]

I think you said your sister is in New York. One of the top lyme specialist in the country is there. My co-worker brings her daughter there. You can probably do an internet search. Send me a pm if you can't find the name and I will ask my co-worker.

Love the Woman to Woman post. Some of my coworkers go there too.

I would also see a naturopath. This is not the same as homeopathic medicine. My doctor prescribes me an antibiotic if I really need it. My husband was horribly ill 2 years ago (out of work, cardiologist,, ENT, pulmonologist, primary care, neurologist, etc). Finally his neurologist (who I worship) sent him to a naturopath. I recently started seeing one too. I still have a primary care who is find that I also see a naturopath. We both have had to pay out of pocket but it has been worth it because we both feel so much better.

I have also been impressed with this site and their recent book. They have a few other books so they aren't "new" but her story is amazing. It is an anti-inflammatory diet approach.
http://cleancuisineandmore.com/

 

[mommy2allgirls]

I would recommend an ILADS lyme doc. They aren't in it for the money and many of them have different treatment methods not all involving antibiotics. It just depends on the severity of the disease. Without all of the antibiotics I'm on currently it is likely I would have been dead by now. I nearly died during my last pregnancy and now things are starting to look up. It's amazing how docs will gladly do pro longed antibiotics for acne but not lyme which burrows into each organ muscle and tissue of the body. I do support in making sure you get an ILADS trained llmd and I'm positive your sister will get answers

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[disfan07]

You have 2 endocrinologists?

If there's no improvement after stopping gluten, dairy and soy, could it be because you actually don't have alleriges to them?

Mistyped....one endocrinologist. Meant to put rheumatologist.

And when I say no improvement, I mean no improvement from anything besides allergic reactions. I was pointing out that what people thik of as a typical diet for helping many diseases (eliminating the 3 big ones...gluten, dairy and soy) has not worked for me.

I am allergic to them. Confirmed by skin testing, lab tests, oral challenges and/or known reactions. Same things as my allergies to peanut, tree nuts, eggs, shellfish, oats, coconut, sesame, sunflower seeds, honey, ginger, bananas, cherries, and broccoli. I also have eosinophilic gastroenteritis which complicates the allergy issues a bit.

 

[North of Mouse]

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??).

I can really sympathize with your sister, but trust me, Fibromyalgia *is not* a catch all. I started having severe unexplained pains at 36 after a very difficult pregnancy/delivery.

If her pain is in the joints, it's definitely NOT Fibro, because it's in the muscles. Usually some type of arthritis is in the joints themselves. I was diagnosed finally after about 10 years, and it's a daily terrible disease and even with exercise, which is the best (but hardest to do) thing you can do for it, there is still constant pain. The 'good' news is, 'it's not fatal' I endure, and hide it well, and most people, except for family and close friends, are not aware I have it.

Determination goes a long way in dealing with it (if this is her problem) and just not 'giving in'. My best of wishes for her.

 

[AddictedtoDoleWhip]

Mistyped....one endocrinologist. Meant to put rheumatologist.

And when I say no improvement, I mean no improvement from anything besides allergic reactions. I was pointing out that what people thik of as a typical diet for helping many diseases (eliminating the 3 big ones...gluten, dairy and soy) has not worked for me.

I am allergic to them. Confirmed by skin testing, lab tests, oral challenges and/or known reactions. Same things as my allergies to peanut, tree nuts, eggs, shellfish, oats, coconut, sesame, sunflower seeds, honey, ginger, bananas, cherries, and broccoli. I also have eosinophilic gastroenteritis which complicates the allergy issues a bit.

Is there a reason why you have to post endlessly about your allergies and the doctors you supposedly have to see? I can't help but think you are exaggerating and or making up your issues to one up people.

 

[disfan07]

Is there a reason why you have to post endlessly about your allergies and the doctors you supposedly have to see? I can't help but think you are exaggerating and or making up your issues to one up people.

Your the one questioning it. I posted it originally because a PPs daughter has similar symptoms to me and I thought that maybe I was seeing a doctor that they had not seen yet to help with a diagnosis.

So sorry if you think I'm exaggerating. I WISH I was exaggerating but no....that's my life and what I deal with on a regular basis. So I appreciate the concern but you have absolutely no idea what I have been and what I'm going through.

I'm out of this thread. Continue to question if you would like but I hope you NEVER have to deal with what I deal with.

 

[Jennasis]

Is there a reason why you have to post endlessly about your allergies and the doctors you supposedly have to see? I can't help but think you are exaggerating and or making up your issues to one up people.

This is a medical thread. Perhaps she was hoping that by sharing her experiences (which is what I asked for in the OP) she could help.

What helpful thoughts would you like to contribute to my search for help for my sister?

 

[Jennasis]

Your the one questioning it. I posted it originally because a PPs daughter has similar symptoms to me and I thought that maybe I was seeing a doctor that they had not seen yet to help with a diagnosis.

So sorry if you think I'm exaggerating. I WISH I was exaggerating but no....that's my life and what I deal with on a regular basis. So I appreciate the concern but you have absolutely no idea what I have been and what I'm going through.

I'm out of this thread. Continue to question if you would like but I hope you NEVER have to deal with what I deal with.

Don't you worry about them. I appreciate you sharing.

 

[AddictedtoDoleWhip]

This is a medical thread. Perhaps she was hoping that by sharing her experiences (which is what I asked for in the OP) she could help.

What helpful thoughts would you like to contribute to my search for help for my sister?

Yes it's a medical thread but honestly half the things she says I feel like are a lie.

 

[njmom47]

Does she take any meds regularly? That is one side effect that I have encountered.

 

[ongomom2]

Your sister should really ask her Rhuematologist to check for Sjogren's Syndrome, RA and Lupus. It takes at least 2 to 8 months, with blood test every 2 months, to compare and rule out auto-immune diseases. I was finally diagnosed a year ago after suffering for at least 10 years. My other doctors would tell me that they couldn't find anything wrong or that my x-rays didn't show anything.

 

[Jennasis]

Yes it's a medical thread but honestly half the things she says I feel like are a lie.

So what? Add something constructive to the discourse or keep quiet.

Does she take any meds regularly? That is one side effect that I have encountered.

Not sure. I'll mention that to her. Thanks.

Your sister should really ask her Rhuematologist to check for Sjogren's Syndrome, RA and Lupus. It takes at least 2 to 8 months, with blood test every 2 months, to compare and rule out auto-immune diseases. I was finally diagnosed a year ago after suffering for at least 10 years. My other doctors would tell me that they couldn't find anything wrong or that my x-rays didn't show anything.

One of my clients was just diagnosed with Sjogren's. She's quite relieved to have a diagnosis for it. I think it was one of the possibilities my sister's doctors are looking into. I'd never even heard of it until my client mentioned it and now I seem to be hearing about it everywhere!

 

[WDWBarb]

One of my clients was just diagnosed with Sjogren's. She's quite relieved to have a diagnosis for it. I think it was one of the possibilities my sister's doctors are looking into. I'd never even heard of it until my client mentioned it and now I seem to be hearing about it everywhere!

This is one that my DD was diagnosed with (positive for the antibodies) and then later Undiagnosed with (different doctor said first tests were simply wrong). Similar symptoms to Hashimoto's but much more eye dryness, skin dryness, etc. DD has all of that, but when her thyroid levels are good, her symptoms mostly go away.

There are SO many autoimmune diseases and incidents are increasing at an alarming rate. There aren't enough doctors around that treat autoimmune (not just Rheumatologists - it depends on what area of the body the disease affects).

Best of luck to your sister. I hope she gets an accurate diagnosis quickly.

 

[LiveYourLife]

So what? Add something constructive to the discourse or keep quiet.!

Jennasis, that was just as harsh as the poster you quoted! I added something constructive to the discourse, so I guess I have full permission to share my thoughts now, per you, no?

I concur that the particular poster that Dole Whip is referencing seems to be a bit questionable with the truths surrounding their health issues. Do I think that the Poster has health issues? Yes. To the extent and mystery of what they say? No. I questioned it upthread as well. I think what raises a red flag for me, is that while this poster will contribute relatable information to a medical topic, it does come across as one-upping most of the time. There is a name for this type of Internet behavior.

I do feel that the Dole Whip addict ripped the proverbial band-aid off with his/her posts on this thread, but I can see where he/she is coming from.

Anyway, as I mentioned previously, I hope your Sister finds out what is going on with her health, and that she feels better soon.

 

[paintnolish]

One of the problems with these kinds of illnesses is that people often look just fine on the outside. Knock on wood, I've never had a serious health problem, rarely get sick save for a cold, etc. I look totally fine on the outside but have the weird pains. The rf factor shows that there is inflammation somewhere in my body, but we don't know why yet.
Anything can turn into a debate on the Dis!

 

[Jennasis]

One of the problems with these kinds of illnesses is that people often look just fine on the outside. Knock on wood, I've never had a serious health problem, rarely get sick save for a cold, etc. I look totally fine on the outside but have the weird pains. The rf factor shows that there is inflammation somewhere in my body, but we don't know why yet.
Anything can turn into a debate on the Dis!

There isn't any debate. I'm happy to hear any and all possibilities (regardless if the person suggesting them actually has the condition or is making it up). My sister looks just fine on the outside too. I think what this thread is confirming is that whatever she's got, she's got a long row to hoe before figuring out what it is. It sucks to be so far away from her while she's going through this. Makes me feel helpless, ya know?

 

[Aimeedyan]

For what it's worth, Crohns disease also causes joint pain. It's another auto immune disease to add to the list Seems to be common for auto immune diseases to show up in joints. That was actually my first symptom!

Good luck to your sister - the diagnosis process is so frustrating. I hope answers are found soon