Thursday, July 18, 2019
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Dana’s Fight Like a Girl Story (Rheumatoid Arthritis)

Dana's Story (RA)I think it’s important to go over the entire medical history of my struggle to find the right diagnoses. Many people are going through the same thing everyday. It’s a terrible thing to go through. It takes forever…lots of pain and suffering before the right medications are prescribed. It’s a hard life to live with a chronic pain illness anyway, but getting to the diagnosis is half the battle.

I have Psoriatic Arthritis, Sjogren’s, fibromyalgia, CFS, Hypermobility EDS, Osteonecrosis, Osteopenia, Avascular Necrosis, Osteoarthritis, Pseudotumor Cerebri, Endometriosis, and so much more. I was always a sickly child. I didn’t walk until I was over a year old. I couldn’t flush the toilet or turn the door knob until I was 5 years old. I was a dancer starting at a very young age, 2, because my mom thought it would help build up my muscles and strength. I’ve always had aches and pains, but doctors always thought it was because I danced. Also, the doctors said that my immune system was not fully developed, therefore, I would get sick a lot.  So I had to be extra careful around others. A few of my diseases are Auto-Immune diseases, the others are not.

I was always sick. In second grade, I missed 32 days of school. I would get strep throat every single time I returned to school. Then, I ended up with chicken pox that same school year so bad that it was in the corners of my eyes, my ears, the bottoms of my feet, etc. My body was covered!

In High School, I had Mono from the Epstein Barr Virus, and was very sick from it. I had no energy at all. I had heard about Mono before, but never knew how drained you really felt. It took me 6 months to feel human again.

In College, I had Mono again. It was even worse. I slept through an entire semester. I was so sick. I didn’t eat. I lost weight. It was awful. I would continue to get Mono, seven more times at least, each time being worse than before.

One year I had Mono and Shingles at the same time. I felt like a truck hit me and put it in reverse to back up over me a second time. Then, that same year, I got Shingles again. That is when my joints began really hurting me again. I thought it was still from the Mono, but it just wouldn’t go away. I was told that I had Chronic Fatigue Syndrome, but the doctor said that most medical people don’t believe in it, so I would have a hard time getting treated. I was also diagnosed with hypertension in 1997. I had a hypertensive storm. My blood pressure was severely high–280/120. They told me that it was primary hypertension with no underlying cause.

I got married in 2000, and my hubby knew all about my illnesses, but he married me anyway. I began having pain in all my joints. The doctors said there was nothing wrong with me.  No one would  x-ray my knees or hips or did any tests on my legs at all. Instead, they did a brain scan to search for lesions to rule out MS. When that was negative, they no longer searched for anything physical. They assumed it was psychological. I was put on antidepressants for depression. I was told depression could cause pain. I had horrible reactions to the antidepressants.

We moved to KY in 2002. I didn’t have any doctors yet and I ran out of meds. I went to see a psychiatrist who said that I wasn’t depressed and shouldn’t be on antidepressants. Then I couldn’t walk up our back steps. The PCP sent me to an orthopaedic surgeon who did an x-ray. He found nothing. But he told me that he had an idea what it was. He sent me for an MRI. He told me then that my diagnosis was steonecrosis or avascular necrosis of both hips. Two months later it showed up on an x-ray. It was stage 3. One month later, I had core decompression on both hips. The right hip took; the left did not. I was in a wheelchair the following year and remained there for six months. I had a total hip replacement of the left hip in Dec. 2003. I was 29 years old. I went from the wheelchair, to a walker, to a cane. I used the cane for quite a while until I switched arms and used the cane for the other hip.

I didn’t understand why all my joints and muscles hurt so much though if I had AVN/ON in only my hips. I soon found out that I had AVN/ON in my knees and shoulders as well, and the shoulders were as bad as the hips. Then a rheumatologist said that I had to have some type of connective tissue disease if I had all of these joints involved in AVN/ON. Already
AVN/ON is so rare to begin with, but to have 6 joints with idiopathic involvement almost never occurs.

I was diagnosed with sero-negative rheumatoid arthritis in 2003. Then it was changed to sero-negative spondyloarthropathy involvement. Then I was also diagnosed with Sjogren’s that same year when I found out I had no tear production, and my cornea’s had sores on them. I also had blocked salivary glands because no saliva was being produced. I was put on anti-inflammatories, Oxycontin, artificial tears, Restasis, pilocarpine, and an anti-malaria medication (Plaquenil) for arthritis.

We moved to RI in 2006, where I was finally diagnosed with fibromyalgia, after having excruciating muscle pain for all those years with no relief. The doctor started me on an antidepressant, hoping for no crazy side-effects like before, and also a muscle relaxer. It was a good start.

RI was a great place for me to live for a short 9 months. I was finally diagnosed with psoriatic arthritis when I broke out with psoriasis from head to toe, and I also had a sausage digit indicative of psoriatic arthritis. I found out later that I had psoriasis when I was a child, so that would have helped with an earlier diagnosis. I also had my medication changed from plaquenil to methotrexate (a chemotherapy medication). My fibromyalgia medication remained the same for the time being.

We moved to GA in 2007. My rheumy there decided that he didn’t care what my medical records said. He took me off all my medications to see for himself if my joints would swell. I couldn’t even believe this was a real Atlanta doctor. He was even voted Atlanta’s Best Docs. In the meantime, I tried to get into another local rheumy that I heard was a great doctor. While I waited those 5 months however, I could hardly move. I was also waiting to get into a pain doctor for the AVN/ON and fibromyalgia treatment, which also took several months. I had pain where I didn’t even know you could have pain. I had sensations in my body that I never felt before. I literally prayed to God that I would just die!

One week before my appt with my new rheumy, my elbow swelled up to the size of a softball. I went to the ER just so someone had record of it for my new rheumy. They wanted to know at the hospital if I wanted something for the pain or any treatment. All I wanted was an X-ray or MRI and a written record of proof that my elbow was indeed swollen from fluid on the joint, that I indeed had synovitis.

I had already gotten in to see my pain doctor by then and was given Oxycontin, as well as a medication for pain caused by  fibromyalgia that works on the central nervous system called Zonegran. {I actually had been on it before in 2002, when my optic nerve had pressure on it. I had pseudotumor cerebri. No one knew why, but I had severe headaches with nausea and other visual disturbances daily. I had also lost some of my sight. The Zonegran decreased the pressure behind my eye, causing the pain to go away and my vision returned to normal. I was taken off the medication in 2003 because I was told with pseudotumor cerebri, after 6 months of treatment, if it goes away, it won’t come back. Well, I noticed that I wasn’t really watching TV anymore, just listening. Then when driving, I could no longer see the street signs, and then I couldn’t tell which way the cars were facing on one-way streets to know which streets to turn down. Then I could see nothing, and the headaches returned. The pseudotumor cerebri came back with a vengence. No one understood why, but I was put on a different medication than Zonegran in 2004. It was called Topamax. It is used a lot with migraines, but it also relieves the pressure. I was just on an extremely high dose, and I lost a whole lot of weight with it.} So when I went to see the pain doctor and he put me on Zonegran for the fibromyalgia, I already knew how I would do on it because I had been on it before.

Then I went back to that pain clinic and my pain doctor had left the practice rather suddenly, so I was placed with another doctor in the group who wasn’t with my insurance. Of course they didn’t check on that. I ended up paying a ton of money out of pocket for an out of network provider. Then he said I probably needed to up my Oxycontin after so many years of being on the same dose of 10 mg long acting twice a day. He said that your body gets used to it. I agreed although I wasn’t quite sure I agreed with his decision. He wrote a script for oxycodone 15mg twice daily. The problem was that this script was not a generic for the long acting; it was a short-acting medication. The doctor didn’t even know what the heck he was prescribing me. I called the pharmacist because I thought it was odd that it wasn’t Oxycontin, and that it didn’t say XR or SR or something like that after it. The pharmacist said it was indeed short-acting. So I contacted the nurse with my concern. He really thought it was a new dose for Oxycontin long-acting. He apologized and gave me my original script. He said he could write me a new script for 20 mg twice a day for the long acting. I said ”no” firmly because I didn’t think I wanted to go up in dose anyway. That same doctor also said he was going to give me an injection in my shoulder. I waited with my arm out of my sleeve, and he never returned to the patient room. The nurse came in with my fee slip and my script and told me to come back in a month. He just totally forgot. So I asked to please give me a competent doctor that was at least in my network. Finally they gave me the head doctor for the group as my new doctor. One day all patients on narcotics were ordered to take a urine test to make sure they were actually taking the drugs prescribed for them. No problem. I voided in a cup, set it on the counter, and left.

A month later, I came back. The doctor came in and said that my test came back positive for cocaine and negative for Oxycontin. I was shocked. Obviously, either one of the nursing staff switched it on purpose or accidentally or it happened at the lab, but the doctor didn’t believe my story because he had the results from the lab. I told him I was going to get a lawyer and everything because they didn’t even test it correctly. Drug testing needs to be sealed in front of the patient, etc. That was not done. I have no idea what they sent as my urine. It was finally straightened out when I came in a week later and tested again with no sign of cocaine and normal levels of Oxycontin. It was obvious that the other urine wasn’t mine. They have changed the way they test for drugs now, etc. The problem is that the first test is already part of my record. He had to type a letter and put it in my chart stating his belief that it wasn’t my urine. It was a horrible ordeal.

My new rheumy meanwhile started me back on all my anti-inflammatories, methotrexate, and Remicade (an IV infusion for arthritis), as well as Flexeril and Skelaxin (muscle relaxers for fibromyalgia). He also gave me pilocarpine for saliva, the supplements that would be depleted by methotrexate, and pain patches, non-narcotic). He tested my vitamin b-12 and D levels. They were next to nothing, so he put me on extremely high doses of those. He did a bone density test as well, which still showed
osteopenia–not quite osteoporosis. He wanted to put me on calcium, but my bones do not absorb calcium supplements. {Back in 2004, a metabolic bone doctor tested me for all kinds of things. He said that I had a lot of calcium deposits outside of the bone, I also had kidney stones that were calcium oxalate. He told me that I should cut calcium out of my diet. Because I had such a low vitamin D, he told me to take vitamin D supplements instead.} Obviously, the amount of vitamin D that I had been taking was not enough. Then, when I increased my dose to 2000 IU per day, my calcium in my blood decreased. It had been incredibly high. Also, I no longer have the calcium deposits and haven’t had any kidney stones either.

What I didn’t mention was that I also had severe problems with plantar fasciitis, achilles tendonitis, tenosynovitis in my wrists, tendonitis in my elbows, bursitis in my shoulders, problems with my ACL’s, my SI joint, and my neck.  I was told that my pelvis looked like it was crushed in an auto accident.

I’ve been skin tested four times for allergies, and all my allergists have said the same thing. They have never seen reactions like mine. I am allergic to everything and with a huge reaction. I carry two epi-pens and albuterol. I also have asthma. I have a severe shellfish allergy and latex allergy–they both cause anaphylaxis. I have many food allergies. I react to changes in temperatures with hives. The sun gives me hives. I need tinted windows on my car. I have so many sensitivities.

I also have endometriosis. I had two laparoscopies. I was in menopause for six years. I had a fertility doctor test my levels in 2002 before I started the Nuva-Ring, and she said I was at the level of a pre-pubescent 5 year old. I’m not even sure what that means. I had periods for years up to age 21. Then they stopped. The Nuva-Ring is when I finally began having periods 4 times a year. I kept it in an extra week so that I only have 4 periods a year on purpose. Then, I began to stop even those periods. I stopped the Nuva-Ring to see if I could have a period without the hormones. I had a period for about eight months and the periods stopped.

My right shoulder collapsed the day before Halloween Oct., 2009 I had to wait until March 29th to finally have it replaced. I worked very hard to rehab it. At the same time, I was in PT for my back and neck, PT/OT for my hands and wrists because of hypermobility EDS, and also using a TENS unit and aqua therapy. I’m doing very well.

I was having difficulty with my fingers and had to get refitted for my finger splints. I have hypermobility EDS in my fingers with hardly any connective tissue left. I also began to have severe pain, lack of mobility and stiffness in my neck, lower spine and SI joints. I was diagnosed with severe arthritis in my cervical spine, a bulging disk in my lumbar spine and a small amount of arthritis in my SI joints. I was scheduled to have epidural injections in my neck and lower back. I cancelled my appointment. I decided that I did not want to risk injecting steroids into my spine. I already have AVN in 6 joints and did not want to risk long term effects of steroids to my spine. I can’t even imagine having AVN in my spine. It would be on top of possible AS, or what is being called Psoriatic Spondylitis.

I just had my right hip replaced May 10th, 2012. It collapsed almost completely, around the holidays. I didn’t give up at all though. I continued to belly dance. I even danced in the 4th Anniversary Show in two different dances. I am so glad I did. It kept my spirits high. It kept my muscles strong, and it protected the area around the joint until the hip was replaced four days after our belly dance show.

My husband and I adopted our first son nine months after my shoulder was replaced as well in Dec. 2010. It has been a long road for me, and it will continue to be. I anticipate that I will continue to need more surgeries and that new procedures, treatments, medications, and possibly even diagnoses are in my future. The reason I wanted to share this with you is that we all have such incredible medical histories. Many times we are told that nothing is connected, and that we have all these different diagnoses. How can one person who never drank or smoked or did drugs have so many things wrong with them? I was premature. I was born two months early, weighing 4 lbs 11 oz. They found nothing wrong with me at birth. I believe that I always had something wrong with my immune system that affected my immune response to allergens, and has attacked itself in many ways causing many autoimmune arthritis diseases. I think that they will figure out that a lot more of my diseases will end up being autoimmune or auto-immune related. So what about your story? Do you you think there is a connection? Can you connect the dots?

Dana
Georgia
Submitted 6-28-2013

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

This article is intended to convey general educational information and should not be relied upon as a substitute for professional healthcare advice.

3 comments

  1. Have you ever had a Western Blot to check you for Lyme disease? I have Lyme and went through almost everything you did. I have all of the symptoms you have. I went from doctor to doctor being diagnosed with MS, Parkinson’s, ALS and RA. Many doctors said I need psychiatric help or saying to me basically it was all in my head. If you ever consider ruling Lyme out there is only one lab that does a very thorough job with their testing. The only negative thing is it is not covered by insurance. You can possibly submit it to your insurance. You can go to their website and order the sample vials and lab order. On the form you need to select two test, 188 & 189. I hope I don’t seem too pushy but I read your entire story and cried. It’s such a miserable disease. I am very sick still after being on months of oral and IV antibiotics. I can hardly walk so I use a walker and wheelchair. But the one thing I still have in me is fight! I am so very sorry for all that you have lived with. I can actually say, “I understand”. The website for the lab is http://www.igenex.com. One more thing, if you have a way to watch a video that streams through your computer, I highly recommend the documentary UNDER OUR SKIN. I’ve seen it on Netflix, Hulu Plus, Amazon and Redbox. Good luck!

  2. Dana, i am so very sorry for all that you have experienced. I am looking for a new r hematologist in Atlanta and was wondering if you mind sharing your mds name. Melissa

  3. Know what you mean if you have one autoimmune condition others seem to appear you have to keep your sense of balance and go with the flow the hardest thing is dealing with shifting pain

    most people don’t understand you as you have good days or have acquired enough coping mechanisms to appear normal with modern medicine most people ass use that aside from cancer doctors can fix everything you know better as a good day or week can be as simple as joints not swelled Excema not flaking badly and I can open a jar by myself

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