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Very complicated, need neutral advice

Ok, this is an insanely long post, but I don't know what else to do.

In 2006, shortly after giving birth to my son, I started having excruciating pain and swelling in my right middle finger. After months of bouncing from hand surgeon to hand surgeon, I had no answers. I got to an internal medicine doctor who took one look at my finger and got me an emergency appointment with a general orthopedist. That doc said he thought I had a terrible infection, and got me in to see his practices hand surgeon asap. That hand surgeon said he thought he felt something wierd in my knuckle and referred me to have an MRI. The MRI showed a growth of some kind in my knuckle. The hand surgeon decided to try a Cortisone shot to reduce the swelling. After less than half a cc of the injection, he aborted due to the extreme pain (and screaming) it was causing. He scheduled surgery to debried the joint and remove the growth.

The first week of January 2008, this surgery happened. He sent the growth to the lab for analysis. The verdict came back: granular tissue consistent with Psoriatic Arthritis. (I was diagnosed with psoriasis at age 14).

He referred me to a rheumatologist who started me on Humira.

I then moved from CO to SD.

The rheumatologist in SD simply tried adding Methotrexate and an NSAID to the Humira, which was not doing anything for my pain.

After a few months of worsening pain, the SD doc replaced Humira with Enbrel in addition to the Methotrexate and Mobic.

When I was still in an incredible amount of pain, he tried 2 other NSAIDs that I ended up being allergic to. At that point, he put me on low dose Prednisone (2.5 mg/day).

After 3 months or so, I got what I thought was a really bad flare up of eczema on my cheeks. I went to my PCP.

My PCP started basically yelling at me for not disclosing my Lupus diagnosis with him. After I got him to calm down, he realized that I didn't have a Lupus diagnosis. He prescribed a Medrol dose pack  and referred me back to my Rheumatologist for Lupus testing.

That blood test came back negative.

I began doing my own research and found that Drug Induced Lupus was a thing, and a known (if extremely rare) side effect of Enbrel.

I brought this research to the attention of my Rheumatologists PA, who basically said "Fine, quit taking the Enbrel. That's not a real thing, though."

At this point, I changed rheumatology offices.
My new rheumatologist didn't think I had Psoriatic arthritis at all. After a year of trying to treat me unsuccessfully, she referred me to the Mayo Clinic for a second opinion.

Summary: inconclusive. New rheumatologist kept trying different treatments. Diagnosed me with Fibromyalgia. Sent me to Pain Management who confirmed Fibromyalgia.

In the intermediate years, I had dozens of surgeries. My foot had a bunion and bunionette removal and reconstruction of the outer bone (recently discovered to be severely poorly healed and likely in need of secondary surgery to fix) as well as 3 cyst removals and 8 or 9 tynosynovitis clean outs of tendons in my hands, 3 tendon removals from my hands, carpal tunnel surgery on both hands, sesamoidectomy on my right hand, and cyst/growth removal from my right hand.

Finally, my rheumatologist tried me on a cocktail of DMARD medications: Cymbalta, Ozempic, and Leflunomide. This combo gave me the most relief I have ever had.

But she also had been making charting/medical record inaccuracies for years. Literal. Years. SO MANY THINGS she charted as diagnosed with no supporting evidence or even telling me.

Then she made several errors in ordering lab work for me. I had to go have blood drawn 3 times in 2 weeks for the things she said she wanted to look at...AFTER I called 6 times trying to straighten it all out.

I asked my new PCP to refer me to one of the new Rheumatologists that came to the city (up until 3 months before the blood work incident, my rheumatologist was part of the ONLY rheumatology office in a 150+ mile radius). In order for insurance to cover it, I needed a reason. I stated 2nd opinion, as I didn't think insurance would cover "my rheumatologist can't keep records straight or order the right blood work".

New rheumatologist promises to get to the bottom of things. He says he doesn't think i have Psoriatic Arthritis because I've never had dactylitis (sausage fingers). But he can't do anything until I've been off my DMARD medications for at least 3 months.

So, I go off my meds for him. Aftern 3 months, I'm in serious pain. My back hurts SO bad. He orders an MRI of my pelvis, looking specifically at my SI joints.

Insurance denies the request. So starts the appeals process.

2 months later I start having electric shocks from my back muscles into/through my spine. I tell my rheumatologist, who referred me to my PCP, as that is not a rheumatological symptom.

I go to my PCP, who puts me on a Medrol Dose pack because he has no idea what would be causing it.

1 day before the end of my dose pack, insurance finally approves my MRI. My rheumatologist says I need to be 2 weeks from finishing the dose pack before I can have my MRI. So, MRI is scheduled for 2 weeks out.

I had my MRI a week ago. The verdict? Some minor osteoarthritis in my SI joints to add to the degenerative disk disease I've previously been diagnosed with in my L4-L5 vertebrae (really? I was never told that, good to know!!). Minor tendinitis seen in my hips and upper thighs. No need for DMARD medications, follow up in 1 year.

He promised to help me figure out what's going on with me. Instead, he took me off of a treatment that was working, did one scan, and declared me just fine.

I AM NOT FINE.

So, my question for you dear Redditors is this: what causes tenosynovitis and tendinitis in every joint in someone's body that responds well to DMARD medications designed to treat Psoriatic Arthritis? What could possibly be causing all of my issues without causing dactylitis?

Other diagnosis include:

* diabetes-had a lot of neuropathy in my feet/toes until I stopped my DMARD medications. A1C jumped from 7.1 to 9.3 after stopping DMARD treatment, but neuropathy almost disappeared.

* bursitis in both hips-I've been treated for this in the past

* degenerative disk disease in L4-L5: apparently had this diagnosis for 5 years. Old rheumatologist never mentioned it.

* mild Bi-polar (type 2 i think?) - I was apparently diagnosed with this in the past. Diagnosis confirmed by psychiatrist when visiting Pain Management. They wanted to put me on Lyrica for Fibromyalgia, but due to the terribly bad mental health reaction to Gabapentin in the past, was told i should never take Lyrica as it would severely exacerbate my bi-polar symptoms. Was given Cymbalta instead.

* Fibromyalgia

* IBS

* Reynauds Syndrome

* Excessive fatigue-I HAVE to nap at least 2 hours during daytime no matter how much or little sleep i get at night.

* Obstructive Sleep Apnea-I have an Auto Cpap machine i use every night.

So what the **** is wrong with me? How do I get rid of this overwhelming pain? What do I need to tell my docs to get the proper treatment?

How do I become a semi functional human being?

Family history: Dad died of esophageal cancer 11 years ago. Had a diagnosis of Reiters Syndrome arthritis.

Mother died of breast cancer 1 year ago. She also had diabetes, and was diagnosed with Psoriatic arthritis.

Full blood sister has Multiple Sclerosis and a few dozen food intolerances.
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Avatar universal
You clearly have too many things diagnosed for any of us laypersons to know anymore than you do what's going on because like you to me this all sounds a bit insane.  I guess the one thing I would say is, okay, the rheumatologist was an organizational mess, but you were apparently given by her the only treatment that sounds like it actually helped, although it was a 3 drug cocktail and I always wonder why a doc wouldn't try one drug at a time to see if only one helped rather than three when all of these drugs have a lot of potential side effects.  It's possible the electrical shock thing, although this would usually be felt from the brain, was due to withdrawal from stopping the Cymbalta too quickly.  This class of meds is one of the hardest to stop taking and must be done as slowly as you need to.  Your bipolar diagnosis isn't really bipolar in the sense you're probably thinking of it.  It's a way depression manifests itself, not the psychosis form of bipolar, and can refer to almost any range of human behavior for a depressed person who experiences different emotional things.  For example, it could mean you're angry sometimes and sometimes you're not.  It could be you're irritable sometimes and sometimes you're not.  It could mean you have more energy sometimes and sometimes you don't.  It's a pretty squishy diagnosis that is more for the prescribing of antipsychotics for depressed people than it is any real description of anything that most depressed people don't feel from time to time.  Or not depressed people.  I have no idea why you had a bad reaction to neurontin, but any drug that affects brain neurotransmitters can be a problem for some people.  Lyrica was theoretically supposed to be better on this front, but probably isn't as it was only developed when neurontin lost its patent protection.  The eczema was pretty predictable, as that's what often happens when you're put on corticosteroids.  They adversely affect the immune system, and so you get something else that takes advantage of this.  Same happens with antibiotics.  Doesn't always happen, but is pretty common, so that again probably explains that.  I think the advice to to to the Mayo Clinic was the one to follow.  When you have a problem your docs can't find, and especially if you live in a place that doesn't have the greatest health care but really any place, you have to go elsewhere to find better docs.  The Mayo Clinic and Johns Hopkins and the Cleveland Clinic are examples of places that made their bones by getting the best docs and working in teams so you're not just getting one person's view of things.  Another option is, you've pretty much used up what allopathic medicine has to offer and it's left you wanting, so you might consider alternative medicine.  The focus there will be on how you can live a healthier lifestyle and get stronger rather than trying to attack whatever it is that's wrong with you.  If you found the right practitioner, it might work.  Eating an organic diet, cutting out all suspected food culprits of inflammation such as dairy and wheat and GMOs and the like and focusing heavily on the cleansing and antioxidant rich foods and supplements might just work, who knows?  God knows it looks like you've tried everything else.  And you probably won't find that person where you live unless you find a Native American practitioner.  A doc who practices integrated medicine, which is one who not only learns allopathic medicine but also natural medicine might help.  What I'm seeing from a distance is, you have something going on that appears to be systemic, but you're getting tons of contrary diagnoses and a lot of what sounds like odd medicine.  A ton of surgeries and drugs, which are all very invasive and hard to handle and recover from, which is very common for those who are diagnosed with things like fibromyalgia and the like.  They are amorphous diagnoses and therefore allow docs to go to town on you.  It happened to my wife's sister.  Maybe time for a different approach.  Wish I could offer more than this speculation, and I hope you find some relief.  Peace.
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