Good morning all! How is everyone? I’ve been reading over everyone’s post these past few months. I haven’t commented much but I have been around. I have a lot of reading to do!
September (2017) will be the one year anniversary since I got shingles and my PsA went into remission. I have been pain free for almost a whole year. No medications, nothing. Just exercising every other day and evening walks.
The pain has returned. Honestly I have noticed some discomfort for the past 2 months, very gradual though. Yesterday was the first day I admitted to myself that the pain in my knees and feet is back and took some pain medication. I felt defeated. I have been so happy these past 10 months. The pain, fatigue, and worry was gone. I was free to be myself and enjoy life. I still had to use the spoon theory but it was a major improvement over the pervious years. My rheumy did warn me of this, he did, and inside I laughed at him. Well, I guess he was right. I won’t tell him that though! I have an appointment with my rheumy in 3 weeks. It is a 6 month check up. I will request new blood work and x-rays.
Some days I question the PsA diagnosis. I don’t have swelling, ever. The pain is mainly in my knees, feet (arches, not soles), and back. Sometimes shoulders and wrists. I have very flat feet. The pain is worse when I forget to wear my insoles. Is the pain in my legs due to flat feet and a deformity? Why is there no damage on xrays? Nothing in the blood work? Some days I feel like I am driving to crazy town when I think about all this.
I hope everyone is having a great day! See you around town more often.
I’m sorry that your vacation is over.
I do much better when I wear my orthotics, as I have flat feet and increasingly more deformities in my feet. No damage on your x-rays is a good thing. That means that your disease is mild and/or that your treatment has slowed joint damage. My blood work is negative also, but I don’t worry about that. There is a certain percentage of people who will be sero-negative. That goes for other autoimmune diseases, including lupus.
In terms of not having swelling, does your doctor agree with that? Just because you don’t see it doesn’t mean that it can’t be felt.
My rheumy does agree that some people with PsA DO NOT have swelling. He explained the gene/chromosome factor to me and I understood. I guess what I really want is some PROOF!! Just something. I have had lots of medical issues all my life and I have never once had some proof. Childhood joint pains, childhood skin problems (both of which I now know are/were arthritis or psoriasis), early term pregnancies, failed pregnancies, psoriasis, and now PsA. All were things that many doctors said “I don’t know why”. It would be nice or reassuring to have some proof. Even a small amount.
I am throwing a temper tantrum because I do not want to start a biologic again.
Arthritis meds are less treatment and more PREVENTATIVE. Waiting for “proof” can be a huge mistake It’s sort of lake taking the measles shot AFTER you have the measles. Restarting is not failure. Pain is a symptom not the result of disease process. It’s your body trying to tell you something. Taking the meds is not giving into your fear ( we all have it) it’s giving it the middle finger.
I frankly can’t fathom the strength you ladies have. I can’t process the idea of a medication Holiday. that terrifies me. Long ago I realized this thing isn’t going away but rather is just going to surprise me with what it does next!
Hi amielynn, and sorry.
There’s a lot in your post but for now the one main thing that strikes me is that you have had this wonderful phase. It could happen again.
Lately I’m re-thinking some of my assumptions about having PsA. I know it affects the whole body but there again it is possible to feel quite healthy in some respects, even though usually that does require drugs. The very fact that it can be diminished to varying degrees by the drugs is encouraging. And also that suggests to me that the body is very resilient despite PsA, it retains some (possibly a lot of) potential for good health and well-being. In short, I’m less inclined to think of myself as ‘diseased’ overall.
What has happened to you suggests that you have terrific potential for feeling and perhaps being well. I am being extremely unscientific but in your shoes I’d be truly hacked off that the disease would seem to have raised its ugly head again but also very hopeful for what the future may hold.
tntlamb, I like that you said “Restarting is not failure” and it got me thinking. Maybe this isn’t a few steps back but just moving forward. I shouldn’t view this as a battle lost but just a battle. A medication holiday!, I like the sound of that. It sounds way better then it feels. I like to know that things are working, doing their job, and there is no way to know unless you step back and take a break. Feel the pain. Then you know the medication is really working. You might find you need less medication then what you currently took. Or if you take pain medication, that it wasn’t needed anymore. I like to know where the line is.
Sybil, Thanks. I didn’t think about that “It could happen again”. I guess is very well could! Yes, “hacked off” is the correct term. I am very mad at my body right now. Just this once I would like to be free of something. I hate this pain, I really do. It makes me a snappy, bitter person. I have had lots of fun being the old Amie these past 10 months. I don’t want to loose her again.
Will I take a biologic again, yes. Will I do what needs to be done, of course. Will I kick and scream all the way, absolutely!
If you can get ultrasound imaging of the joints, it will shoe the inflammation and more importantly enthesis activity in the joints. I think those that don’t get much swelling are primarily getting enthesis, and possibly bone inflammation.
Unfortunatly the Rheumatology society are stuck in the 70’s, they are still wanting to Dx something primarily tissue involvement using x-rays, just plain stupid. US is a cheap alternative to MRI, but my new Rheumy will not even read the US reports, saying they are not standardized, well I could care less, she has eyes, and hopefully a brain…
Jon, Hello! I am sorry you are having a time with your Rheumy. Have you thought about switching to someone else who understands you and is willing to work with you? I have been with my Rheumy for almost 10 years! He is my biggest advocate. He listens and does tests that I request, even if he thinks they aren’t necessary. Sometimes just doing the test and seeing nothing can relive the worry. He is also straight forward and puts me in my place when I need it. And I do need that in a doctor. My dermatologist is also the same way. I need these types of people on my side, I need a team to help me along. I am not willing to stay with a doctor that does not take the time to listen to me and help me. I know they know more then me, but I am the one who lives with this.
I hope you find someone who stands on your side, someone who will fight for you.
I think the next step after xrays is MRI. I have brought it up before but wanted to wait. If I find nothing on the MRI we will go from there.
Thats funny, this is the replacement!
I am on my 5th Rheumy, I am running out…
The frist was sympathetic, but not willing to even test me, then got fed up and retired, the second was great, but never kept notes, and made stuff up, the third was a real 0, the 4th, dumped me, and now I am with this one, so I was hoping to stay a while…
Amie, I can so relate to this part of your comments above: “I am very mad at my body right now. Just this once I would like to be free of something. I hate this pain, I really do. It makes me a snappy, bitter person. I have had lots of fun being the old Amie these past 10 months. I don’t want to loose her again.”
My hope for you is that the meds will help bring back the old Amie! I have had way too much feedback at my job this year about my personality and I feel so frustrated that I don’t think they really understand what chronic pain can do to a person’s character. I have been snappy and bitter also. It is so disheartening because that is not “who I am”. When I am faced with stress, continued or increasing pain, and chronic sinus infections I just can’t handle it! I loose composure, niceness and tact.
Sorry bout the rant. What I do know is that I need to take the medicine to stop the joint damage to stop having more pain. My mood would only get worse if I let this disease advance without meds. Hang in there! My new mantra.
Cheryl, Thank you. I like your mantra! Mine seems to be “another cup of tea might help”. Haha! Something about a nice cuppa tea makes everything better.