This week’s Fibro Warrior is Allison, from Mount Laurel, NJ, which is about 20 miles east of Philadelphia. She started off with a Fibro diagnosis and has progressed to Rheumatoid Arthritis. Her various diagnosis shows just how much uncertaintanty and overlap there are between the many Spoonie diagnoses.
When were you diagnosed? How old were you at the time?
That is a complicated question. I received my first (incorrect) diagnosis at 19. My most recent (what I feel to be correct) diagnosis of RA came in August 2013, when I was 27.
What lead up to your diagnosis (symptoms, Dr. visits, etc)?
The journey to this diagnosis started in 2005, my second semester of college. I had just gotten over a particularly nasty bout with influenza, so at first I thought that I was just tired from having been ill. As the semester progressed, though, I wasn’t getting any better. I was exhausted all the time, sleeping 12-16 hours a day (or more). I had frequent headaches, both migraine and non-migraine, low grade fevers, bone and joint pain, and petechial rashes. I saw my GP when I came home and he did the usual bloodwork, all of which was normal. He attributed my symptoms to “depression“. I saw another doctor who, despite my having a negative Western for Lyme Disease, chose to treat me for over a year with Ceftin and Biaxin. The only thing this accomplished was to upset my stomach and lead to multiple yeast infections (from the depletion of natural flora from the heavy duty antibiotics). I finally got tired of feeling disgusting from taking my meds, so I stopped. Miraculously, my symptoms remitted. I thought I was better! I was wrong.
The journey to this diagnosis started in 2005, my second semester of college. I had just gotten over a particularly nasty bout with influenza, so at first I thought that I was just tired from having been ill. As the semester progressed, though, I wasn’t getting any better. I was exhausted all the time, sleeping 12-16 hours a day (or more). I had frequent headaches, both migraine and non-migraine, low grade fevers, bone and joint pain, and petechial rashes. I saw my GP when I came home and he did the usual bloodwork, all of which was normal. He attributed my symptoms to “depression“. I saw another doctor who, despite my having a negative Western for Lyme Disease, chose to treat me for over a year with Ceftin and Biaxin. The only thing this accomplished was to upset my stomach and lead to multiple yeast infections (from the depletion of natural flora from the heavy duty antibiotics). I finally got tired of feeling disgusting from taking my meds, so I stopped. Miraculously, my symptoms remitted. I thought I was better! I was wrong.
About a year later, my symptoms returned, especially the fatigue, headache, and joint pain. I saw a rheumatologist who did the usual bloodwork for autoimmune diseases; everything came back normal except for my ANA, which was borderline-high (1:160). She diagnosed me as having fibromyalgia, mainly because she didn’t know what else to diagnose me with, and put me on Elavil. I took that for a few months, but I couldn’t tell if it was helping and since I was on an SSRI for my depression/anxiety, being on a tricyclic wasn’t an ideal solution… so I stopped taking that. Once again, my symptoms seemed to go away. Of course, they returned, over and over again. I treated the symptoms with NSAIDs and narcotic pain killers when needed, was put on various antidepressants, and had my symptoms attributed to stress time and time again. I began to think that I was actually crazy and that there wasn’t nothing actually wrong with me.
Finally, I saw an allergist because I was rapidly acquiring new allergies and wanted to figure out what was going on. He ran a huge panel of bloodwork and everything came back normally, except my ANA was 1:320, I had Mycobacterium pneumonia(“walking pneumonia”), and extremely high IgE (the immunoglobulin responsible for allergic reactions). He referred me to another rheumatologist because he figured something was up with my immune system and strongly suspected autoimmunity. I had been having horrible joint pain, extreme fatigue, and lots of headaches. I also had skin rashes and low grade fevers. I started seeing a doctor at The University of Pennsylvania and he was wonderful. Even though none of my blood work specifically pointed to a particular autoimmune disease, he chose to treat me with Plaquenil, which is a pretty non-specific Disease Modifying Anti-Rheumatic Drug that actually is an anti-malarial drug (they have no idea why it works for autoimmune disease!).He also found out that I was ridiculously deficient in Vitamin D and Vitamin B12, so he started supplementing me with those. I also started taking a daily prescription NSAID (Mobic) that was easier on my stomach than the Aleve. After about 2 months on the Plaquenil, my symptoms were much better, and I was finally starting to feel like myself. However, I flared in July and my symptoms couldn’t be calmed with a 3 week course of Prednisone, so my doctor started me on oral Methotrexate. He officially diagnosed with me seronegative Rheumatoid Arthritis and we’ve been operating on that diagnosis since July. My methotrexate dosage has been increased because I was still having symptoms on the lower dose, and we’re not sure if I’ll be able to stay on that or if I will have to move to a biologic medication. To be continued…
Were you working at the time?
In 2005, I was working part-time but I was a full time student. Since then, I’ve been a full time student for most of the time, but now I work full time and I’m a part-time student.
What was your family life like (married? kids? etc?)
Originally, I was living with my mom and brother. Now, I’m married and live with my husband and our 2 cats. 🙂
How did your family initially handle your illness?
My mom has vacillated between being very supportive and also doubting that there was anything wrong with me besides “stress”. My dad largely just wants me to feel better, but doesn’t really understand how this happened or what is going on. Overall, the reaction has been confusion. It was very isolating. My husband is very supportive and takes great care of me when I’m feeling gross. For that, I’m very grateful!
How has your family/ work situation changed since Fibromyalgia (/RA) entered your life?
Well, it’s been a roller coaster! The lowest point with regards to work was when I was in college and working full time as a co-op student in biological research. I was sick all the time and while my boss was understanding, HR was not and I was terminated. I was accused of taking advantage of the system and made to feel like I was a horrible, defective person. Since then, things have been a lot better, mainly because I have been fortunate enough to encounter understanding professors and employers. I have to be a lot more judicious with my time and my energy, though (that whole spoon thing!) and sometimes, I only have enough “spoons” to go to work and that’s it. I have to be kinder to myself and realize that sometimes (often!), I can’t do it all!
Well, it’s been a roller coaster! The lowest point with regards to work was when I was in college and working full time as a co-op student in biological research. I was sick all the time and while my boss was understanding, HR was not and I was terminated. I was accused of taking advantage of the system and made to feel like I was a horrible, defective person. Since then, things have been a lot better, mainly because I have been fortunate enough to encounter understanding professors and employers. I have to be a lot more judicious with my time and my energy, though (that whole spoon thing!) and sometimes, I only have enough “spoons” to go to work and that’s it. I have to be kinder to myself and realize that sometimes (often!), I can’t do it all!
What do you feel is the most challenging aspect of Fibro/RA?
I constantly feel like I’m letting someone down. If I have to cancel plans with friends, or I can’t help my husband with the household chores, I feel so lousy. If I can’t give 100% at work or in class, I feel like people are judging me. Often, I feel like I can’t live 100% of my life, 100% of the time. It’s isolating and depressing.
[Tweet “I constantly feel like I’m letting people down… via @Simply_A_”]
I constantly feel like I’m letting someone down. If I have to cancel plans with friends, or I can’t help my husband with the household chores, I feel so lousy. If I can’t give 100% at work or in class, I feel like people are judging me. Often, I feel like I can’t live 100% of my life, 100% of the time. It’s isolating and depressing.
[Tweet “I constantly feel like I’m letting people down… via @Simply_A_”]
Do you have any other co-existing conditions? If so, what are they and how do they impact your Fibromyalgia/RA?
In 2005, I was diagnosed with endometriosis, and in 2011 I was diagnosed with PCOS. I also have migraines, anxiety, and depression. When my PCOS and endometriosis are uncontrolled, my RA symptoms are definitely worse, and when my RA flares, my migraines get worse, too. It’s a balancing act!
In 2005, I was diagnosed with endometriosis, and in 2011 I was diagnosed with PCOS. I also have migraines, anxiety, and depression. When my PCOS and endometriosis are uncontrolled, my RA symptoms are definitely worse, and when my RA flares, my migraines get worse, too. It’s a balancing act!
What (if anything) have you found/ done that has improved your symptoms?
Aside from pharmaceutical interventions, I have really embraced massage therapy as a way to feel better. I have tried acupuncture, but didn’t care for it, and I frequently use heat and ice to alleviate my pain.
Aside from pharmaceutical interventions, I have really embraced massage therapy as a way to feel better. I have tried acupuncture, but didn’t care for it, and I frequently use heat and ice to alleviate my pain.
How open are you with friends & family about your illness & symptoms?
On a scale of 1-10, I’d say I’m about a 7, with regards to openness. I’m more closed off with people at work or lesser-known acquaintances, but with close friends and family, I don’t mind telling them about any of it. I do try to minimize how much I talk about it though, mainly because I feel like I’m annoying sometimes.
Do you blog about your illness? If so, what inspired you to do so?
Not specifically, but I do talk about it on my blog. I want to educate people about chronic illness and autoimmune disease, and I’d like to help de-stigmatize it.
What is the best advice you’ve received regarding Fibromyalgia/RA?
It sounds stupid, but take care of yourself! I can’t control my immune system, but I can control how much sleep I get, how many activities I do, what I eat, etc. Also, tracking your symptoms can really help you talk with your doctor about the best course of care for you.
[Tweet “I can’t control my body but I can control what I choose to do. @Simply_A_”]
It sounds stupid, but take care of yourself! I can’t control my immune system, but I can control how much sleep I get, how many activities I do, what I eat, etc. Also, tracking your symptoms can really help you talk with your doctor about the best course of care for you.
[Tweet “I can’t control my body but I can control what I choose to do. @Simply_A_”]
What was the worst advice that you followed?
I think letting doctors tell me that “it was in my head” and trying to live like that was a big mistake. It took me a lot longer to get diagnosed than it would have had I pursued it more diligently from the start.
I think letting doctors tell me that “it was in my head” and trying to live like that was a big mistake. It took me a lot longer to get diagnosed than it would have had I pursued it more diligently from the start.
What is your favorite way to cope with your life as a spoonie?
Is sleep an acceptable answer? Haha, but seriously. I like to connect with other Spoonies to talk about life with a chronic illness because it makes me feel more normal! I also try to enjoy the little things and really take advantage of the days where I feel good.
What is one thing you’ve learned about yourself since your diagnosis?
Sometimes, you have to say no so you can say yes later, and that doesn’t make me a bad person.
Sometimes, you have to say no so you can say yes later, and that doesn’t make me a bad person.
[Tweet “Sometimes you have to say “No”, so you can say Yes later. via @Simply_A_”]
Now that you’ve gotten to know Alison a bit, be sure to connect with her on Twitter and Facebook, and be sure to check out her blog.
jennie says
I’m loving this blog it’s making me feel supported.. it’s so hard to be a Fibro Warrior, esp one with hormonal issues meh
Julie says
Glad to hear that the blog is helping. If you ever want to share your story just let me know.