I am very new to this forum, and I'm not certain I'm in the right place, though I am enjoying reading the discussions and feeling the great sense of caring and community. :) I would very much appreciate some feedback about my 'symptoms' since my Rheum is reluctant to diagnose me 'officially.'
About a year or so ago I woke up one morning with swollen stiff hands. It seemed very odd, and when it didn't let up the next morning, I attributed it to a new med that my Neuro put me on (sustained a TBI in a car accident in 2010). He didn't think it was the meds, but took me off them anyhow. Nothing changed, and within a month I was waking in the morning with stiff and swollen hands AND feet. My feet feel bruised on my heels and the sides in the morning until I stumble around for about an hour. So my GP referred me to a Rheum who did lots of lab work and eventually put me on Diclofenac which seemed to help, though everything seems to be steadily worsening. Then the meds started to negatively affect my kidneys, so she took me off the Diclofenac and now has me on Plaquenil. I do have psoriasis, but nothing like many of you seem to suffer from, only a small patch occasionally on an arm or leg... So my questions are these: 1. Do these symptoms sound like PsA to you? If so, why would my doc be reluctant to diagnose it? And lastly, now that I'm on the Plaquenil I feel worse (she said it could take 3-6 months to work), and now I'm having a lot of back pain in addition to the hands and feet. Can back pain cause incontinence? Because I've had two episodes of urinary incont. in this past week.
I appreciate the benefit of the group's collective experience and wisdom. Thank you in advance.
Back pain does not cause incontinence. Does your Neuro know your new symptoms? Rheums frequently take a while to diagnose. A couple of visits is the norm before a diagnosis. I have been a nurse for 38 years and have had PsA symptoms for 20+ years, perhaps since birth as I had some muscular skeletal deformities at birth. After discussing it for a number of years with my Gp who didn't know what it was but didn't think it was PsA. I took myself to a Rheumy in 2006. Rheumy didn't think it was PsA either. A very stressful year in 2007 then saw her again in 2008 and she said, "of course that is PsA why haven't you started a biologic yet". Ah yes. I would let your Neuro know your new symptoms, it sounds more in the sphere then in Reumy's sphere. Good luck to you in your quest. It can take a while to get a name on some of these things.
All this must be confusing and often frightening. You certainly have something going on. The swelling and stiffness in your hands and feet, and the pain in your heels do sound like they could be PsA, but could also be symptoms of something else. Since it sounds like you have the skin manifestation of psoriasis, PsA would be a natural thing to try to rule out. I'm sure you know that a percentage of people with the PsA rash develop joint problems. I've never heard of PsA causing incontinence.
This has been going on for a year, and you say that it is getting worse, and that your back is now involved. If I were you, I would get your GP to refer you to another Rheumatologist for a second opinion. If you have PsA, the sooner that aggressive, helpful treatment is begun, the better off you are likely to be in the future, so you need to get a definite diagnosis. If you have something else, you need to find out what that is. Another possibility is that you have two entirely separate things going on at the same time, and you need to find out what's going on.
I'm sure that the last thing you want to do is "break in" another physician, but it could make a huge difference in the quality of your life in the future if you can get a definite diagnosis and an effective treatment going. If there is a teaching hospital somewhere near you - even one that would require a day's drive, a night in a motel, and another day's drive home to get to - I'd try to get a referral there. I'm not saying to rheumatologists in regular practices are not bright and helpful - many of them are. But doctors at a teaching hospital see such a variety of problems that they might be more likely to help you sort out what's going on with you. I'd be AGGRESSIVE about getting a second opinion.
Everyone's experiences are different, but I'm very glad that I "fired" my first rheumatologist and got someone who would answer the kinds of questions you are asking here. Your rheumatologist should be giving you the attention and information that you're looking for here. I'm glad you've popped in, and I think this is a good place to ask questions and get support, and I very much hope that you'll let us know how things are going, but to me it seems ridiculous that so many of us have to turn to Internet forums for answers that our doctors should be giving us.
Hi write2rdn, There are many types of arthritis. It will is a process to rule out what you do not have. I have been diagnosed with PsA about a year and a half ago. There is no exact test for PsA.. I have been diagnosed early with minimal knee joint damage. I have pain in feet which is looking more and more like Gout Arthritis. I am finding some balance of medicine that has me functioning to about 85% of what normal was. Your pain sounds very similar to mine. I have problems with knees, hands and feet. I have a good Rhuemy and I get as much information from him as I can. I have stopped all medicine except for Remicade. I am waiting for next infusion in two weeks. Started in Nov 2012 and it seems to be working. Did take awhile and am not at 100% but am thankful for what I can do. You have come to the right place. It will take some time but you will better one day.
Welcome to the group! That is interesting, that your doctor is hesitant to give your a formal diagnosis. You mentioned that you only have a bit of psoriasis. While some people here have a lot of skin involvement, there are quite a few with only a little bit. As an example, my skin involvement at its worst is my elbows and knees. Usually it's just one knee, 2 small patches.
What you're describing certainly sounds like inflammatory arthritis, and with the back involvement it could easily be PsA. You mentioned that you've had urinary incontinence. . . .If this is new, I would definitely get it checked out. With your back pain, this could mean that there is nerve involvement.
In terms of plaquenil and feeling worse, it may be that the disease is progressing rapidly, and the plaquenil does take time to work. I would definitely report the back pain and incontinence to your rheumy, and discuss the same thing with your neuro, since you already have one who is familiar with you.
Michael- While back PAIN won't cause incontinence, pressure on the nerves in the back can. Been there, done that. I had a herniated disk in my 20's, and that was one of the warning signs to immediately contact my doctor about. When I developed parasthesia in the groin, they did surgery almost immediately to relieve the pressure on the nerve.
michael in vermont said:
Back pain does not cause incontinence. Does your Neuro know your new symptoms? Rheums frequently take a while to diagnose. A couple of visits is the norm before a diagnosis. I have been a nurse for 38 years and have had PsA symptoms for 20+ years, perhaps since birth as I had some muscular skeletal deformities at birth. After discussing it for a number of years with my Gp who didn't know what it was but didn't think it was PsA. I took myself to a Rheumy in 2006. Rheumy didn't think it was PsA either. A very stressful year in 2007 then saw her again in 2008 and she said, "of course that is PsA why haven't you started a biologic yet". Ah yes. I would let your Neuro know your new symptoms, it sounds more in the sphere then in Reumy's sphere. Good luck to you in your quest. It can take a while to get a name on some of these things.
It does sound like an inflammatory arthritis, as someone has already mentioned. Please, please, please get a second opinion. I was scheduled to start on Remicade (after failing on Humira that was rx’d by my derm) after my FIRST visit with my new Rheumatologist. NSAIDs aren’t going to help a whole lot on their own, and if you have a doc who is reluctant to find the cause of these symptoms, its time to move on. One can definitely have PsA with little or no symptoms of psoriasis.
It is also possible for inflammatory arthritis to cause or exacerbate all sorts of nerve entrapment, so it’s great that you already have a neuro who seems to listen to you. When you follow up about the incontinence, ask if he KNOWS a good Rheumatologist.
Welcome to our group! I am sorry that you need us, but you have come to a good place!