Monthly Archives: May 2013

Brain Fog Related to Rheumatoid Arthritis

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Brain Fog. What an odd little term. I’d never heard of it as a diagnosis before as a nurse. In fact, had a patient told me they were having “brain fog” I must admit I would have probably cocked one eye brow and looked at them questionably begging for further explanation because that is not an approved medical term or diagnosis.  But before you get angry with me over my seemingly superior dismissal of “brain fog” as a symptom, let me tell you that  I can attest that brain fog is quite real because I’ve experienced it myself. The phenomenon begs further study by the medical community as it is a patient driven description of a set of common symptoms effecting cognition. Brain fog effects a larger number of people than one might think and it’s not isolated to RA. Many chronic illness patients experience brain fog.

As far as brain fog  relates to RA, it is a cloudy feeling in your head as if a literally “fog” has settled over your brain causing you to feel like your mental function has slowed.  You can think of it in terms of how much data is being processed by your computer at one time and how the number of processes active at one time can slow down the speed of the computer or even cause it to crash. When I am experiencing brain fog, it feels like the symptoms of rheumatoid disease: the pain, stiffness, mobility impairment, and swelling are all taking up the processing speed that my brain would normally use for data processing. Phone numbers that would normally be on the tip on my tongue are lost the in the fog. I forget what I was going to say in mid-sentence as if there were a glitch in my software. I often cant’ find the right word choice and in my struggle to communicate people fill in the words for me. I also have trouble accepting new information and will look at someone talking to me blankly as they give instruction or are expecting me to follow along with a story they are telling me. It’s quite disturbing for me and those around me. “Huh?” is a common response when the synapses catch and I realize I’ve just missed a part of the information my fogged brain is trying to process. Some might be dismissive and say everyone has a little forgetfulness as they age, but I assure you that the feeling one has with brain fog is different from those sensations. I’m 46 years old and I know that I have normal forgetfulness regarding where I last laid down my keys. This is quite different. When having an episode of brain fog I am quite aware of what is  happening, but I can’t fix it.

Brain fog coupled with declining mobility was the reason I left my hospital career as a oncology nurse. I could no longer walk the halls and physically meet the demands of patient care, but I also was having difficulty making quick decisions that nurses are called to make every day in this fast paced setting. I tried to accommodate my illness by changing to a nursing desk job as a case manager and found that although I was not as physically taxed, the brain fog definitely changed my job performance. I could no longer multitask, meaning that answering multiple phone calls, while trying to interact with a coworker at my desk, while retrieving information from the computer system became too overwhelming. I was frustrated and it showed in my voice, on my face, and was mistaken as inability to interact well with coworkers. I simply could not perform at this level while dealing with chronic pain, joint and mobility issues, and being stressed in this way. This was a marked difference in my ability to perform well in the workplace. Prior to being diagnosed with RA, I had many job performance reviews that touted I was a gifted with organizational qualities, that I was a team player, and well liked among my co-workers and held in high regard among my peers as a senior nurse.

Currently, it is not clearly understood by the medical community what causes brain fog in patients with autoimmune diseases such as RA. Never assume that brain fog is just part of symptoms that go with RA because sudden onset of cognitive symptoms could signal a medical emergency. You should always communicate clearly with your physician the symptoms you are having rather than using the term “brain fog” to describe a set of symptoms because the symptoms I associate with brain fog may not be the symptoms you associate with brain fog and key diagnostic information could be missed by your healthcare provider. Impaired cognitive ability could be a side effect of medication, a vitamin or mineral deficiency, or characteristic of other disease processes. Unless your doctor says that the set of cognitive symptoms you are having are related to your autoimmune disorder diagnosis, never make the assumption you are having brain fog . (See: http://rawarrior.com/brain-fog-testing-cognitive-dysfunction-with-rheumatoid-arthritis-disease/)

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Chronic Pain Secondary to Rheumatoid Arthritis

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Someone I care about asked me once what it was like to be in chronic pain and I remember giving them this descriptive explanation that was almost on the verge of being theatrical because I wanted to convey in the most explicit way that it was truly awful, but mostly I wanted them to believe me. As my sero-negative RA advanced, I was experiencing pain like I’d never had before in my life.  As a nurse, I couldn’t believe that people endured pain levels that were ranked at a 7 or 8 on the 0-10 pain scale with 0 being no pain and 10 being the worse pain you’ve ever experienced without treatment.  Because pain is not a primary symptom of RA I was unprepared for the tenacity of the pain and I felt isolated. I quickly learned through online communities of RA patients that I was not alone in my suffering. I felt validated, then I was outraged because physicians seem to dismiss pain as a primary symptom of rheumatoid arthritis. I couldn’t understand how this could happen because after pain had robbed me night after night of restful sleep, I was so miserable that I just wanted to close my eyes and not wake up. I wasn’t suicidal by any means, but I just didn’t want to live with pain anymore. When I initially addressed this with my rheumatologist, he said, “I don’t treat pain. You will need to see  your primary care physician or a pain management specialist”.  As I turned back to the online community I found that many patients were reporting that their rheumatologist would not address their pain and as a result, the patient felt that they should just “suck it up and deal with it”. As a nurse, I couldn’t believe this was happening. As a patient, it was unacceptable. I was astounded by the misconception that this type of pain was being dismissed as  “just arthritis”.

In recent years there have been an increase in reported cases of prescription drug abuse. This problem is what is driving more and more physicians from prescribing narcotic pain relievers. We live in a era where malpractice law suits are common. Physicians are reluctant to prescribe narcotics for patients due to the potential for drug overdose or addiction. As a result pain is being under-treated by healthcare providers. Physicians would rather ignore treatment of chronic pain associated with a illness like RA than have to adhere to the guidelines for dispensing narcotics and to bear responsibility for any prescription drug diversion or abuse.  In fact, it has been recommended that the FDA restrict narcotic prescriptions t0 90 days for non-cancer pain. (See:  http://articles.latimes.com/2013/mar/26/local/la-me-rx-label-20130327)

Chronic pain is a medical diagnosis sometimes called CPS (Chronic Pain Syndrome) and is defined as pain that is constant in nature that has lasted more than three to six months. (See:  http://emedicine.medscape.com/article/310834-overview)  As rheumatoid arthritis advances to the moderate to severe stage, chronic pain is a reality. As I began treatment with biological agents to slow the progression of RA, I had false hope that biological agents would take the pain away. In retrospect had I obtained good pain management, I may have had a more realistic view of what the biological agent could do for me. For 2 years my focus was treating my pain and doing whatever was needed to make the pain go away; however, this was not the rheumatologists goal. His primary goal was to put the disease in remission. Please let this be a lesson to anyone who is dealing with pain as a chief complaint with RA.  Make sure your doctor hears you and treats the pain so you can spend 6-8 months waiting for a biological agent to show signs of improving your condition.

I was three years into my diagnosis when my rheumatologist finally listened to me. I remember sitting in his office and crying to the point I could not stop as I told him how sleep deprived I was and that when I did sleep my brain tried to comprehend the pain with vivid nightmares of being in a car accident so severe, the car was crushed around me. During the time this rheumatologist treated me I had gone through 4 biological agents and 3 DMARD treatments. No longer able to work, I had to file disability and was grieving the loss of career and financial security. I felt like a shell of my former self. It was only then, that this doctor relinquished and told me about a narcotic pain patch that could be worn on the skin for 7 days at a time, that would be a source of continual pain management; however, he would not prescribe it. This rheumatologist and I have parted ways, but my general practitioner did prescribe the medication. Now that my pain is managed, I am better able to cope with the debilitation of RA. Occasionally I have acute pain that breaks through the coverage of the pain patch, such as when I go into a flare, but I have medication that covers that now. My life made a 180 degree turn once I got the pain under control. I suffered needlessly for three years, delaying my treatment plan and perhaps overlooking some treatments that may have been a choice because my goals were not congruent with my rheumatologists treatment plan. I find myself starting over now with a new rheumatologist and looking realistically at treatment now that I’m not looking through the lens of pain.

What Is In a Name?

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“You have sero-negative rheumatoid arthritis,” was not what I wanted to hear from a giddy doctor who was practically doing back flips because he was so excited to see that I had some extra floating bones in my hands and feet per the x-ray images. “Sero?” I asked. That was the first time as a nurse I’d ever heard that terminology applied to RA. I knew what arthritis was and I thought rheumatoid arthritis was just a more severe form of the disease, but arthritis is only a symptom of a much more severe condition.

Per the Arthritis Foundation: “Rheumatoid arthritis, or RA, is a form of inflammatory arthritis and an autoimmune disease. For reasons no one fully understands, in rheumatoid arthritis, the immune system – which is designed to protect our health by attacking foreign cells such as viruses and bacteria – instead attacks the body’s own tissues, specifically the synovium, a thin membrane that lines the joints. As a result of the attack, fluid builds up in the joints, causing pain in the joints and inflammation that’s systemic – meaning it can occur throughout the body. Rheumatoid arthritis is a chronic disease, meaning it can’t be cured. Most people with RA experience intermittent bouts of intense disease activity, called flares.  In some people the disease is continuously active and gets worse over time. Others enjoy long periods of remission  – no disease activity or symptoms at all. Evidence shows that early diagnosis and aggressive treatment to put the disease into remission is the best means of avoiding joint destruction, organ damage and disability.” For more information see: http://www.arthritis.org/types-what-is-rheumatoid-arthritis.php

How could I not have known about this disease as a nurse and mistaken it for osteoarthrtis (OA) which is joint destruction caused by normal aging wear and tear on the joints or injury? I quickly found out I wasn’t alone. Most of my nursing colleagues thought the same thing! Given that skilled medical professional nurses thought that RA was just an advanced form of OA, no wonder I was having trouble explaining the seriousness of this disease to family and friends. I have even encountered physicians who do not know that rheumatoid arthritis is a systemic autoimmune disease.

Because there is such a lack of knowledge and understanding regarding rheumatoid arthritis a name change has been under scrutiny for several years. Many patients want to get away from the word “arthritis” to avoid confusing it with OA. The Rheumatoid Patient Foundation has recommended “rheumatoid disease” or RD and many patients have began referring to their illness with this nomenclature. It will be difficult to get away from “RA” because it is a simple, easy to remember abbreviation. The medical community likes their abbreviations! I personal think the disease should be renamed, “ruin your life with never ending pain and suffering disease”, but that might not be the most popular choice! Some patients have opted to call the disease “RAD” for rheumatoid autoimmune disease, but the “A” in the abbreviation once again brings up the old context of stating for “arthritis”. Regardless, the medical community has not fully embraced a name change, but the American College of Rheumatologists are finally backing the patient choice and are calling for an offical name change.

So, why the big deal about a name? I personally think it is because as human beings we need to be understood. The symptoms of RA are so intense and intrusive in your life it is hard for the general public to believe that a person in this day and age of medicine would have to suffer with the degree of pain associated with the disease. Because of this belief, there is a tendency for others to judge RA patients as exaggerating the effects of the disease. Most everyone has a grandparent that has arthritis, so it is deduced that it can’t be that bad, right? Wrong. It is so much worse than most patients would admit. It seems like the harder we patients try to convince our medical team, family, and friends how awful this disease is, the more desperate we seem and thus there is a tendency for others not to believe us, which is so hurtful.

To further compound the problem, there is a differentiation between RA and Sero-negative RA in the medical community in which physicians are taught that S-RA is a lesser version of RA simply because the patient’s blood doesn’t test positive for the Rheumatoid Factor and ANA (Anti-Nuclear Antibodies). The truth is that rather one is positive or negative, rheumatoid arthritis is a horrible disease and the fine lines that divide one classification from another do little to comfort me as a patient. In the three years since my diagnosis, my RA has advanced from mild to severe limits. My symptoms are comparable to that of someone who is sero-positive. If you would like to know more about sero-negativity and what the lab results mean, check out: http://chroniccurve.tumblr.com/post/15295991395/seronegativity-for-dummies-a-lesson-in-seronegative. Per this website, 30% of those diagnosed with RA are sero-negative.

As rheumatologists, patient foundations, and researchers continue to argue over the name of the disease, the fact is I’m still in pain and my disease worsens day by day. A name change is important if it is accurate, understood by the medical community and the general public, and lends validity to the patient’s symptomology because this facilitates acceptance and understanding.