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A Tentative Diagnosis, Symptoms, and a 2 Month Wait for the Rheumy

Quick background for the situation. Please bear with me. This post will be a little long due to my history. My name is Mary. I am a 31 year old female that started experiencing periods of joint pain, redness, heat and swelling when I was 24 years old. I also started having severe fatigue that has not improved since that time. After the issue did not resolve itself, I saw a physician. He prescribed oral pred and sent me to a rheumatologist. By the time I saw the rheumatologist, the meds had drastically reduced the swelling. She performed all the usual bloodwork and had radiographs of my hands taken, but everything came back normal (no positive ANA, RF, Sed rate no joint damage on radiographs). Despite the results, she diagnosed me "tentative RA" and told me to call if I had another bad flare. After a few more very light flares (not enough to return for testing) over the next year or so, I stopped having any severe issues (other than unrelenting fatigue) for many years (occasional joint discomfort/swelling that would resolve itself quickly). That same year (2011) I was diagnosed and treated for nodular lymphocyte predominant Hodgkin's lymphoma at MD Anderson Cancer Center (radiation only). I have been in full remission since that time. I have quite a few lymph nodes that remain enlarged, but biopsy shows them to be most likely reactive to some kind of inflammation. Starting approximately 2 years ago, I started having flares again. For the first year, they were the widely space, light flares that I experienced before; however, over the last 6 months, the frequency and severity of the flares has increased massively. They affect all of the joints in my hands, wrists, elbows, feet, ankles, and knees. Occasionally, I get discomfort in my shoulders as well. The everyday fatigue is now so severe that I have problems getting ANYTHING done. I saw a GP during one of these flares, and he performed the usual bloodwork. My ANA was positive (1:320) my H.S. CRP was 6.4, and various other things were off (vitamin D, iron storage, etc.). They referred me to a rheumatologist, but I can't get in until February 28th! Last week, I had the worst flare up of my life. The pain became unbearable. I could barely walk (had to walk on my heals), and using my hands was out of the question. I just wrapped my joints in heating pads and tried (unsuccessfully due to the pain) to sleep it off. I waited 3 days after it started before showing up in urgent care first thing on a Saturday morning. They immediately gave me a steroid injection in office, oral steroids, and Celebrex. She diagnosed me with "Probable RA", and instructed me to find a rheumatologist sooner than February 28th. After the last few flares, a couple of joints in my hands and feet have not returned to a normal size. They remain constantly tender. I'm hoping this isn't permanent damage. As far as familial history, 3 of my Dad's close family members were diagnosed with RA, so it definitely runs in the family.
I'm sorry for the long explanation, but I have a few questions for people that have gone through this process/dealt with the symptoms, and I felt like my background would help get answers.
1. When you are experiencing a flare, how long does it take from when it begins to when it becomes problematic? The majority of mine do this in a very short period of time. I'll feel a burning/stabbing (so hard to describe) feeling, and within an hour or so, the swelling, heat, redness, etc. is obvious. They continue to get worse, but they seem to hit SO FAST.
2. Do you get redness and swelling AROUND the joints as well as joint swelling (looks like sausage fingers/toes)?
3. Do you ever experience what feels like swelling and pain in your lower spine during a flare?
4. Were you or anyone you know diagnosed with bloodwork results like mine? (Negative RA factor, Negative ESR)
5. How do you deal with the unbearable fatigue?
6. What were your symptoms? (especially any that aren't commonly associated with RA)

I would very much like to hear your stories about fighting for a diagnosis, how to talk to the rheumatologist, pain management, etc. I'll admit, I'm scared, I'm hurting again now that I'm done with the steroids, and I'm tired of dragging my family down by discussing health issues. First they dealt with the cancer, now this? I'm hoping you'll have some words of wisdom or at least words of encouragement. If I used this forum incorrectly or went on for too long, I apologize. I'm new to using forums. Thanks.

  1. Hi MaryM30. First, I'm sorry you have been through so much. I'm glad you are in remission. Your medical history may be a challenge in getting your RA treated aggressively. I would like to encourage you to seek out a University hospital with a decent Rheumatology department because they will be willing to work with more difficult cases, which you likely are. If you have RA, which for the purpose of this conversation we will assume you do, the typical treatment is to suppress your immune system. Every med I can remember taking like that has a warning on it that says cancer is more likely among people who take these types of meds. That is a rough statement to hear, it is rough for us to face, but for someone like you, well, you need to be armed with the truth so you can ask intelligent questions when you meet with the doctor. The stakes are higher.

    Let's see if I can answer some of your questions. Flares, for me they happen fast and furious. No warning. Joint swelling and redness: I don't get this, well, a little swelling in hands. This is why it took FOREVER to get a diagnosis. My joints were never hot or red. My hands and ankles just looked like I was retaining water. Lower Spine: Yes. My Rheumatologist took X-Rays of my lower spine because I think he said you could get rheumatoids on your spine that are very painful. Turns out, I just have premature osteoarthritis. Negative bloodwork: Yes, my bloodwork was negative for many years. They actually biopsied knots on two joints and found they were rheumatoids. A week later, my bloodwork turned positive. Fatigue: It never goes away, but it gets better when you get put on the right meds. A key to this is realizing that you cannot keep the pace you had before you were sick. If you try, you will make yourself sicker. Rest often and learn what is really important and what is clutter. My symptoms? I had my whole world crash at once. I had lupus, Hashimoto's Thyroiditis, pernicious anemia, gastroparesis, Positional Orthostasis with Tachycardia Syndrome, Neurocardiogenic Syncope, Dysautonomia, Adrenal insufficiency, and RA, so I don't know what went with what. They sorted through this mess for years. In fact, I just got a Sjogren's diagnosis today.

    Yes, you used this forum correctly. Sometimes we can't be summed up in 20 words or less. About your family, I bet they want to be there for you and are just relieved that it isn't a recurrence of the cancer. They will be concerned about how the meds will effect the possibility of a recurrence of the cancer, so be patient with them. They are worried. In most people's minds, having a chronic illness doesn't really register. They think, it isn't cancer, how bad can it really be. They may be that way with you.

    It is a long, hard road for a diagnosis, and even longer to find the right med combo, and then they can suddenly stop working. When you finally get to smooth sailing, the insurance company can change the rules. Having said that, research is being done and they are learning more every day. Slowing the progression of the disease is the goal until there is a cure. The longer you live with this, the better you get at making good choices and spending your energy wisely. You also get more comfortable with the risks because you realize where you would be without these medications.

    I hope I didn't scare you. If you can, try to stay off prednisone until after you see the Rheumatologist. He needs to see you in a big flare if your bloodwork is negative. I know it is painful. Fixing the problem before seeing the doctor delayed a lot of my diagnosis.

    Let me know if I can help with anything.


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