How more specific can you get than someone talking about RA who has RA?
First Signs of Symptoms
I was diagnosed with Rheumatoid Arthritis in 2009. At first, it started with aching fingers in the morning. I thought I was just sleeping with my hands clenched in fists. So I just took some ibuprofen in the morning.
Eventually, it got worse. My job as a secretary became difficult because I do a lot of typing. I called my PCP and made an appointment and met with the nurse practitioner. She couldn’t figure out what the problem was so she referred me to a hand and wrist specialist. When I met with her, at first she thought it was trigger finger because I told her the pain was mostly in my thumb to index finger but it sometimes spread to my other fingers and by that time it had started in my left hand also. Upon further examination, she no longer thought it was trigger finger but couldn’t find anything else wrong so she sent me for blood tests (for what she was thinking was wrong) and also put me on a 10-day prednisone taper. Being on the prednisone, I felt like Superwoman.
Sent to a Rheumatologist
I was called with the results of my blood test, but they didn’t tell me the outcome. The doctor’s office just made an appointment for me with a rheumatologist for May 2009. It was only March, so this appointment was not for another month and a half.
Once the prednisone wore off, my whole body was in pain: my jaw, my neck, shoulders, shoulder blades, hands, wrists, hips, knees, and most of all my feet. I was in so much pain and desperate for some pain relief.
I called the hand and wrist specialist’s office to ask for something for pain or at least the results of my blood work, but I was told because I had the appointment with the rheumatologist, they couldn’t do anything for me. In my eyes, it was “you’re no longer our problem, so buh-bye.” So for over a month, I was in excruciating pain with only ibuprofen as a pain reliever, which ibuprofen did not do anything. By the way, through all this, I still showed up for work! Yes, I work as a secretary. So a sedentary job typing all day long. My hands looked like catcher’s mitts.
Before my appointment with the rheumatologist, I had done some research about my symptoms to find out what possibly could be wrong with me. One of the possibilities was rheumatoid arthritis. When I found out that there was no cure and the disease only got worse, I became very depressed, especially since I was already feeling so awful. All I could think of was that this disease could only get worse. I couldn’t imagine going for the rest of my life feeling this horrible. No medication to take for pain relief, stiff and in excruciating pain, and not able to do anything without pain. I didn’t want to do anything because why bother? Everything I did was painful. Just sitting down on a toilet (and getting up for that matter) was so difficult. Once in the middle of the night, I had to go to the bathroom. So I went. It took me 15 minutes….just to pee….that’s it. No stomach bug or anything like that keeping me prisoner on the porcelain. It was the stupid possible disease that I had. When I finally got off the toilet and got back to bed, my husband asked me if I was ok. I said, “Yea, I just had a hard time getting off the toilet.”
May 2009, my appointment with the rheumatologist finally came!! Woohoo and giddyup!! I was going to receive my diagnosis of what I had which I kind of already knew what it was. It was definitely rheumatoid arthritis.
My rheumy put me on hydroxychloroquine, aka Plaquenil, which did nothing. It was like I wasn’t taking anything at all. Even more depressing considering I was finally on medication for rheumatoid arthritis, but I wasn’t feeling any better.
Still in So Much Pain
I started getting anxious about the future. How was I going to raise my daughter who was 11 at that time? I did not want her to have to lose her childhood helping her “crippled” mother. How was I going to live with this disease for the rest of my life? There’s no cure. All my hope was resting on medications.
After a miserable summer vacation with my daughter, stepdaughter, and husband, (miserable because of the disease), and at the urging of my husband (who was my boyfriend at the time), I contacted my rheumatologist to tell him that I was in a lot of pain.
My feet were so swollen that it felt like I was walking on painful balloons. My hands were like catchers mitts. Showering, dressing, making my bed, washing dishes, driving amongst other everyday activities that we take for granted were so very difficult. I couldn’t even pick up a pillow!
I conveyed all this to my rheumatologist, and he put me on prednisone. I was my old self again. In August 2009, it was my next follow up visit with my rheumatologist and he added sulfasalazine to my medication regimen. It was great! I felt like I didn’t even have RA. In February 2010 my rheumatologist took me off the prednisone. After that, I was only given prednisone as a taper if I went on vacation.
At that time, the med regimen was all I needed.
At some point, I found out that my half-sister on my father’s side (same father, different mother), had RA also. She had had it a few years. So now I know where I got it from. Thanks, dad!
I Got a Baker's Cyst
At the end of 2013, I started having swelling in my left leg and foot. I was going to just wait for my next visit with my rheumy, but friends urged me to call because it could be a blood clot. So I called my rheumy, but there was nothing available that day so he told me to get to urgent care. They put me on a prednisone taper and made an appointment for me to go back for an ultrasound to find out what was causing the swelling.
The result was a Baker’s cyst, which is common in runners and people with arthritis. When I went to my follow-up visit, my rheumy increased my sulfasalazine and said he was going to treat the cyst by increasing my meds instead of surgery. But my knee has never been the same—weak despite leg strengthening exercises. It will crack at any moment or swell up for no reason or give out at any given time. Another setback because of a disease.
I Had to Stop Taking the Hydroxychloroquine
I don’t remember when, but I started having a reaction to the hydroxychloroquine. It started by constant, what I thought were yeast infections, but it turned out to be inverse psoriasis which can be caused by anti-malarial drugs which hydroxychloroquine is. So my rheumy told me to stop taking it.
Allergic to Ibuprofen
In January 2019, my upper lip swelled up. I thought I was bitten by something. I went to urgent care and found out that I am now allergic to ibuprofen. I relied on it because I was down one medication. I was ok at first without the ibuprofen, but as the months went on, I noticed flares happening more and more especially if a stressful situation arose. This medication was a lifeline for me. But after being without it after six months, I asked my rheumatologist for something else.
On June 7, 2019, I had a follow-up with the rheumy. I told him that I needed something for pain. He gave me a prescription for a Medrol dose pack with re-fills. My feet were really bad that weekend, so I filled it and started taking it immediately.
On June 9, 2019, I started volunteering with a dog rescue by walking dogs on Sunday afternoons. I was only able to do this one Sunday. I must have walked 5 miles which is much too long for me, but I didn’t feel right bailing out.
My bad knee swelled up so I iced it when I got home. I stayed off of it and when I got up for work on Monday, it was fine. But it started swelling up as the morning went on and by the time I got back to work after lunch my knee got so swollen and so painful. I could not even walk on it. My boss had to go get my car for me and a co-worker had to help me to my car. I drove myself to urgent care and had to valet my car because I couldn’t walk. The valet had to get me a wheelchair and wheel me into the urgent care line. I remained in the wheelchair for the whole visit until I left.
The urgent care doctor (also the doctor who diagnosed my NSAID allergy) found the problem. It was a pulled muscle on the left side of my left knee (yes, the weak one that had the baker’s cyst). He was going to put me on a prednisone taper, but I told him that I had already started a Medrol dose pack. He gave me a note to stay out of work for two days. That is the only time that I took time off because of my RA. I have never taken time out of work because of my RA. I feel too guilty because I don’t look sick. There have been many days that I could have stayed home. I stayed out the 2 days. There really wasn’t much I could do except keep off the leg and ice the knee. I could take nothing for the pain. And I had to get around with a cane.
The whole month of June 2019 was like I was in a constant flare. I was not sleeping because I’d be up all night in pain. One night it would be bursitis in my shoulders (yes, I ended up with that too) Another night, would be some obscure pain in my leg. I still went to work even after not sleeping for a week. Even having the Medrol dose pack which didn’t really work. I finally asked my rheumy for Enbrel. I had a lesson to learn how to do the injection. Currently, I am still on the Enbrel, but it really hasn’t done much more than what the ibuprofen did. For such a strong drug (according to my rheumy), it does not do much for me.
When I met with my rheumy in November, he prescribed me Cymbalta. I started taking it right away and immediately experienced stomach upset. I was in bed for a whole day thinking it was a virus. It did not occur to me that it could be the medication. After taking it for a few days, I noticed a difference in the pain in my feet which was gone. But the stomach upset continued. The following weekend, I was in the bathroom all day with diarrhea. Meanwhile, I started taking the medication with Mylanta immediately after having dinner which helped the stomach upset. I still experienced diarrhea which I told my rheumy about, and he suggested instead of the Mylanta, to use Pepto. I didn’t stop taking the med with Mylanta but added Pepto. The diarrhea stopped after starting to use the Pepto, but the stomach upset was still persistent I went on vacation and lost two days because the medication upset my stomach so badly.
My next follow-up with my rheumy was on January 24, 2020, and I told him that I had to stop taking the medication because it was not worth it to me to keep taking a medication that was constantly upsetting my stomach. Also, contemplating taking the medication was not good for my anxiety issues because I kept getting nervous about the possible stomach upset through the night and the following day.
How It's Affected My Mental Health
Dealing with this life-changing non-ending no cure disease, I was also diagnosed with anxiety and panic disorder with depression. I made an appointment with my former PCP to talk to her about how I had been feeling. She sent me home with a homework assignment. I had to research what anxiety and panic disorder with depression is all about and any symptoms involved. While researching, I noticed that one of the side effects was depression. So I looked up symptoms of depression. And it seems that over the last decade or so, I have experienced most of those symptoms.
Anxiety, panic disorder, and depression also run on my mother’s side of the family. One aunt took Zoloft for depression. Another aunt takes Ativan for her anxiety. Also, rheumatoid arthritis runs in my family on my father’s side as my 2 half-sisters (same father, different mothers) had it. One sister died of complications from RA in June 2019. She actually was put on disability by her rheumatologist because of it.
My Condition Has Worsened
Over the last few years, my condition has worsened. It may not look that way on my bloodwork, but I can feel it physically. I have a sedentary job where I sit all day. However, I do get up often but I have noticed that I have to get up more often now because I get stiff sooner than when I was first diagnosed. If I am walking anywhere, I have to sit to rest more often and doing household chores I have to rest more often also. And the pain sets in sooner than in the past.
During the quarantine time, I worked at home for 2 months. My bosses would text, call, or email me work. About a month of me working for home, I realized how much better I felt: mentally, emotionally, and physically. I had time to exercise, cook healthy meals, time to catch up on basic household chores because I didn’t feel so “constricted.”
I didn’t realize how smothering anxiety and depression were, because I was on autopilot. I know that I had a responsibility to go to work every day no matter how bad I felt. I also work for a small two-employee (1 being me) law firm so they’re down one person if I call out. Get up, go to work, no matter how awful I felt. I very rarely called in sick because of my RA because I felt guilty because I don’t look sick so who would believe me that I was having a flare.
This disease will only continue to worsen. I’ve lived with this since before I was formally diagnosed and have never taken time out of work because of it, except for when I injured my knee which again, was due to this disease. I lost a sister last year because of it. Thankfully, she was already on disability and was able to enjoy a few years with her husband and family before she passed away.
May 2020: I am back to work full time in the office, and I already feel awful. Joints that used to hurt all the time: feet, hands, knees, didn’t hurt. Now that I am back to work, my feet were so swollen it felt like I was wearing sneakers 3 sizes too small. I live with butterflies in my stomach, the shortness of breath, sweats, and hot flashes because of the panic attacks.
I’m depressed because I’m 49 and have a disease that keeps me from going running with my husband, keeps me afraid of doing anything because I’m afraid I might hurt myself. My older sister died in 2019 at 55 because of this horrible disease of which there is no cure.
This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.