I’m officially adding yellow and blue to my purple ribbon. For those of you I’ve left hanging since my last post, I have been diagnosed with Psoriatic Arthritis. My diagnosis of Fibromyalgia stays as well. What took me so long to find out? An uncomfortable follup up call from the first doctor I saw that lead me into wanting a second opinion. I am now back with a rheumatologist who I feel will be open, honest and lead me in the right direction now that I’m fighting a brand new battle. It was a harsh reminder of how much we as chronic pain patients have to advocate for ourselves.
To be as open and honest as possible, I’m really struggling with this daignosis. After 8+ year s of Fibromyalgia I felt like I was finally figuring out how to balance the symtpoms and knew what I had to do to manage them. I feel like I’m starting over and it’s completely disheartening. The pain is different. My body is different. The possible outcomes of PA are different. I’m having to learn my body and how to manage my life all over again. It took me 8 years to figure out fibro. I hope PA doesn’t take another 8.
Not familiar with PA? Neither was I…here is a defintion from Mayoclinic.org to help out:
“Psoriatic arthritis is a form of arthritis that affects some people who have psoriasis — a condition that features red patches of skin topped with silvery scales. Most people develop psoriasis first and are later diagnosed with psoriatic arthritis, but the joint problems can sometimes begin before skin lesions appear.
Joint pain, stiffness and swelling are the main symptoms of psoriatic arthritis. They can affect any part of your body, including your fingertips and spine, and can range from relatively mild to severe. In both psoriasis and psoriatic arthritis, disease flares may alternate with periods of remission.
No cure for psoriatic arthritis exists, so the focus is on controlling symptoms and preventing damage to your joints. Without treatment, psoriatic arthritis may be disabling.”
I’m already struggling with one aspect of this diagnosis. Almost everyone I’ve told says, “You have Psoriasis?” I look at this in two ways….
The positive outlook on this question? My rashes are hidden better than I thought. Let’s face it. Psoriasis isn’t cute and I’m glad it doesn’t show as much as I thought.
The negative? When people ask a question to something you thought was obvious it makes me question the diagnosis…not because I don’t think it’s accurate but because years of having an invisible illness have scarred me. I finally have something showing on the “outside” to prove my diagnosis and it isn’t showing as much as I thought.
As winter comes and my rashes get worse, I’m sure I’ll be more than happy to embrace the positive outlook.
My biggest struggle right now? I don’t want to take the medicine. I have been prescribed weekly methotrexate injections. Here is a list of possible side effects from the medicine….
- Black, tarry stools
- blood in the urine or stools
- bloody vomit
- joint pain
- reddening of the skin
- sores in the mouth or lips
- stomach pain
- swelling of the feet or lower legs
- Back pain
- bleeding, blistering, burning, coldness, discoloration of the skin, feeling of pressure, hives, infection, inflammation, itching, lumps, numbness, pain, rash, redness, scarring, soreness, stinging, swelling, tenderness, tingling, or warmth at the injection site
- blurred vision
- convulsions (seizures)
- cough or hoarseness
- dark urine
- fever or chills
- lower back or side pain
- painful or difficult urination
- pinpoint red spots on the skin
- shortness of breath
- unusual bleeding or bruising
- unusual tiredness or weakness
- yellow eyes or skin
Sounds like a blast! I’m dreading it. I actually decided to break down and cry instead of take the shot like I should have last night. I’m scared of feeling sick for days. I’m scared of not feeling well enough to spend time with baby A. I’m scared I’ll lose my hair.
At the same time, I’m afraid of what might happen if I DON”T take it. I’m terrified of what may happen to my hands and feet. Will my hands look like this…?
Will I get what they call, “sausage toes”, like this…?
These are my feet today, I’m already seeing changes and I’m terrified.
All I can do is trust my doctor at this point and know if the methotrexate doesn’t work for me he will work to find me other options. What I really want is for someone with psoriatic arthritis to tell me I’m doing the right thing.
So again, I’m back to the beginning. I’m going to reach out to people with PA just like I did with Fibro. I’m going to do my research just like I have with Fibro. I’m going to continue exercising because I know without it the pain will take over.
I can do this…
I can do this….
I can do this…..