Where do I begin?

General
1

After months of working with an Infectious Disease MD, a biopsy was taken from my foot that provided me with the PsA diagnosis.

I started noticing vesicles on my hands and feet. I could not explain what was the cause of these random bumps. I am a RN in an ER so it takes a lot to make me excited. I would ask my PCP, who is a co-worker and friend, what are these fluid filled blisters. At the same time, I was having pain in my right wrist. I have never had Psoriasis in my life. I never complained of joint pain until about a year ago. I have always been relatively active and healthy.

By the end of June, I started to have clusters of vesicles on the bottoms of my bilateral feet. I had started to work out at the local gym. I contributed my “rash” to athletes foot. I treated the “rash” with anything and everything. I was convinced that it was just Athletes Foot and so was my PCP. We eventually formed a plan to treat topically which didn’t work. My PCP gave me an oral anti-fungal x 30 days, no improvement. In fact, I was worse. I was on my feet for 12 hr shifts. I was in tears several times a day and especially after work. The pain would wake me up out of a deep sleep at night with shooting pain. My feet were so dry, scaly, inflamed, and bleeding that I wanted to cry every night.

By Halloween, I was experiencing chills with a low grade fever, headaches, body aches, and the mysterious rash. I felt like the rash was something taking over my body and going systemically. My PCP switched hospitals so I was in limbo until he opened his office again. The holidays were coming and I was just lost in “the healthcare system” without a PCP. Once my PCP established his office, I was able to see him in January. By this time, my feet were vesicles, scaly, red, painful, inflamed, and even ulcerative in small amounts.

My PCP sent me to Infectious Disease ASAP. She began by ruling out what could be potentially killing me in the here and now. I forgot to mention that I was experiencing this type of fatigue that made me want to just stop whatever I was doing to catch myself. I have had Mono in my life, I could only compare this to that experience. In retrospect, the PsA did not even compare to Mono. Mono was bad but at least I could feel improvement and knew there was an end to it.

After lab work that only showed an ever increasing ESR rate that doubled with each month, a CT of my pelvis and abdomen, and a biopsy (only with correlating timing as my ID visit), I was given the diagnosis of PsA.

TODAY=> I want to know if my presentation of symptoms are the same as all of you have experienced? Were your symptoms as drastic? Did you wake up one day and feel like something was killing you but no one could save you? I truly believed this…

Please share with me anyone…l need to process this new diagnosis.

2

Onset of PsA can be sudden and severe, or gradual and building. Your symptoms don't sound that unusual.

I know it's hard to take in, because if anyone else could feel how awful this is, you'd think it would be a national emergency to treat these diseases. Instead, even though we are tired, and in pain, we take some meds and are just supposed to live with it.

You've found this group, which will help A LOT. Hang in there. We understand what you've going through.

3

My symptoms came on gradually, making me feel like a whiner. First it was my foot, then the other, then my neck and back, then hands. Screaming pain interspersed with dull constant aching of 4/10 pain scale. I stopped exercising completely in order to work and became less and less able to do the things I loved. It became apparent I could no longer work as an RN in the hospital doing 12 hour shifts. In the mean time, I tried shots, drugs, herbs, heat, ice, stretching, chiropractic, massage, and more. Nothing helped. I felt down and hopeless. No one knew what was wrong, making me feel like I was overexagerating. Finally, one morning I woke up and my fingers were warm, swollen, and painful. I saw my pcp that day and she diagnosed me. I've had psoriasis for 30+ years and severe plantar fasciitis for 3, plus nail damage, so the diagnosis wasn't too hard to come by for my dr. I am in a major flare right now, so not in a great place to encourage, but I don[t give up. I do lotions, potions, accupuncture, massage, you name it and I work. I do home health nursing now so I'm sitting most of the time. Good luck to you and I hope you find this site helpful. M

4

Synergy, everyone is so different. A PsA diagnosis can mean a lot of different things. Thankfully there's effective safe medicines for PsA. There's a powerful class of designer medicines (the biologics) characterized by high effectiveness and very low side effects. I've been on Enbrel/Humira for 20 months. I have no side effects and no symptoms. I someone asks me now assess my health, I say "excellent". If someone asked me 20 months ago to assess my health, I would have said, "I feel 85 years old and I really don't want to live like this."

Right now I live a very normal life if I can call my life in general "normal". I have to give myself a shot every two weeks. Big deal. I usually look forward to shot day because I feel like I'm doing something about my disease then. I don't feel like I've started my "years of tons of meds". The only other thing I do for my health is exercise. I biked 20 miles today. It would have been 30 but I got hungry a cut it short.

5

The one difference in your story and others, is how quickly you were diagnosed. Far too many suffer fo years. The more quickly you start treatment the better. One cool thing is that many people who have such an intense initisl flare, often go onto a period of remission pretty quickly too. (for awhile)

Stay with us. There is lots of support and exprrience here.

6

Synergy, stick with this group. As Lamb said, ther is a lot of support here. We all know what you are going through and,I have to tell you, the information you will find on this site is golden. I am sorry for your pain but you came to the right place. Welcome!

7

yes in hindsite i realize i have had psA for years. my fingers are mangled. i had severe trigger finger several years ago and in hindsite psA was probably an indirect contributing factor(direct factor was a massive amount of repetitive hand work at my place of employment). So get on the meds and dont wait till you are in my boat(facing surgery eventually for the second time) again. You know what they say about an ounce of prevention.

8

Are you seeing a Rheumatologist? I am asking because you didn't mention it, most of us do see a Rhuem and perhaps you need to discuss this with your PCP.

9

To all of your responses,
I am very grateful for all of your support and helping me understand. My initial flare up was very scary for me. Medically, I had the elevated ESR but negative for the ANA lab. I knew what I was feeling yet my co-workers, PCP, and ID were stumped.

I struggled through all of this on my own. I am not married. I do not have siblings. I do not have children. I did not even have my dog during this time period (I had to put her to rest after 14+ years together). My closest friends are also nurses, which means that they were working and unable to help me. I truly had to pick myself up and struggle to get to the PCP on my own.

Your responses are very important to me. I need support of others who understand. As I wait for my initial Rheumatologist appointment, I need to form an understanding of what I need to expect. I am at a place today that I now see that my symptoms are not that different yet everyone has different degrees of the disease.

I am grateful that my diagnosis came early in my life. I contribute this to my own medical knowledge, persistence, believing in my own gut feeling, and God for protecting me.

10

I usually keep a diary of how my day has been and the symptoms as I only get to see the rheumy every 4 to 6 months so sometimes forget things that I wanted to mention by the time I see him. Bet he hates seeing me as he doesn’t get out until he has answered all my questions. From my experience you have to be assertive if you don’t ask or myther you won’t get ( had to keep asking to get the MRI scan on my spine and sij joints) also sorry to mention it but read that you dog died was this just before all your symptoms only asking because I had a really stressful episode with my little boy and shortly after my Psa flared up really bad it locked my jaw and gave me endless months of pain and effected me really badly to the point where I could only eat soup and lost loads of weight being depressed and stressed only make Psa worse

11

Yes Catherine,
A few unfortunate life situations brought out my illness, this illness. I feel like a black cloud was over me. So yes, losing my dogger was the beginning of a cascade of several events in my life that were extreme stress. When we were attempting (mainly myself) to figure out what triggered this illness, I had sketched out a timeline of high stress which triggered symptoms.
I have contemplated a diary myself because of the exact reason you stated. Meeting with a Rheumatologist will not happen quickly and nor will a follow-up appointment. I just do not want to become consumed with the disease. I recognize that stress can trigger flares. I am trying to keep “balanced” right now. I am very conscious. I also recognize that a fine line of depression exists for me if I become obsessed with my disease.
Today I woke up and cried. I accepted the fact that I am like the rest of you. I now have a chronic disease. I will have to fight for the rest of my life to just live normal and keep myself healthy. I am now in the acceptance stage.

12

Hi

I can understand why you dont want to be consumed with this horrible illness and I suppose this is all new for you. Ive got to be honest i still have bad days where I cry and get really depressed but its horrible to say but you sort of get used to it. The diary entries get less and less as you learn more about the illness and by the time you have got answers to your questions . There are plenty of people on here who are in remission so anything is possible. I dont think about what psa will do to me i just take every day as it comes I find it easier to cope this way Good Luck with everything and I hope you find something that works well for you

13

Yes I am brand new… I have LOTS of thoughts and emotions. I have no doubt that I will cry. I have no doubt that I will be depressed at times. I need to start just taking one day at a time for now. You are completely right. Today I had a massage and the pain was relieved for this day. I am waiting now so I can do nothing more until I have a rheumatologist. Thank you for your words. I appreciate you.