I don't know if anyone else who has PsA has experienced just feeling weird and generally unwell. It's a hard feeling to put my finger on other than it's not pleasent.
Yes!!
Before I have a flare I feel sort of gross.... tired, irritable, vaguely nauseous, my bones ache a bit, sort of flu-like symptoms without the fever. Sometimes this lasts for a day, sometimes for up to 5 days. Then it either goes away and nothing else happens, or kaboom! my joints flare up and the feelings go away or are overwhelmed by the joint issues.
I'm feeling like that tonight... the cold front is shifting out of my area (Pacific NW) in a few days, and sometimes upcoming changes in weather trigger these flu-like feelings.
Interestingly, I visited with a friend with Lupus today, and it's interesting that we often feel out of sorts at the same time, or flare at the same time. We both felt bad this past week, and out of sorts today.
The similarities with you and your friend are interesting. My mother died at age 43 from I believe complications brought on by Lupus. I have outlived her now by nearly 2 yrs. But I too experience pain before a weather change. The pain can be so intense sometimes. It gets to where I can't funtion at all. But most of the time it's always there. I was "lucky" enough to have both parents with autoimmune diseases. I inherited my psoriasis from my dad. And I have done some reading that says studies have shown if a female child inherits psoriasis from her father, her prognosis is worse. I don't understand why this should be. And then to read those of us who have this disease have twice as much risk of developing other autoimmune diseases! Crazy!
That's fascinating! My dad had a tiny bit of psoriasis that he never even needed to treat. My mom didn't have it. My PsA has always been pretty severe (plus juvenile onset).
Raven said:
And I have done some reading that says studies have shown if a female child inherits psoriasis from her father, her prognosis is worse. I don't understand why this should be.
That's Psa for you. Even when the pain side is reasonably controlled this doesn't go away for me.
So true that is. Life can be a great hassle at times and I love how other people who don't experience what we feel everyday can be so cavalier about it and basically say you have to trudge through it no matter what! Yeah sure, easy for them to say isn't it? When they don't have pain day in day out and the fatigue and feeling unwell. I know we can't expect others to completely understand, but I do believe we deserve some compassion for pete's sake!
Allan said:
That's Psa for you. Even when the pain side is reasonably controlled this doesn't go away for me.
I can tolerate others peoples attitudes since taking the position of expecting most to behave that way because they haven't experienced it ( they know not what they do sort of thing) and being grateful when someone does show empathy and understanding. Bit like getting a Xmas present when you didn't expect one!
Merry Xmas
Raven said:
Allan has it. In regards to OTHER people attitudes, it has to be a non issue, or it will drive you nuts. Its all perspective I know so many who have chronic disease or great loss. I look at it this way, why should I feel worse than my friend with liver cancer, or or my son who lost his wife at 22 to melenoma, or my granddaughter who lost her mother at 3 mos old and then her dad at 6 and has to be raised by me (and my wife)? How about the person with chronic sinus infections who spends weeks of every year very sick on antibiotics? The one with migraines, the one who needs a second hip replacement before the age of 60, the one with breast cancer? I would not trade my problems for any of those of the people I mentioned. I'm NOT downplaying how seriousPsA can be; I haven't been able to turn my head fully in a decade. I spent 2 years in a "chair" and another detoxing from pain meds.
BUT would I trade that for cancer or loss or really bad headaches? I don't think I would. I have come to terms with my own issues. Everyone traveling down the road of life is carrying some really heavy baggage, you just don't know what it is OR more importantly their ability to carry it. I find that perspective helps. Once you take full ownership of YOUR disease, it becomes much easier. When you become fully empathetic towards others burdens and don't compare them to your own assuming theirs are worse FOR THEM your become lighter. On of the most serious cases and life changing PsA belongs to a meber here that is so busy taking care of not only her children but anybody's children that need care, she forgets her PsA until it puts her in the hospital (as it has many times.) Not from "pain" but a total inability to motate. She even finds time to help others with PsA
I know what you are saying, there is plenty of people suffering in the world. I too am greatful for what I can do, but at the same time I also have to recognize and come to terms with the limitations that have come up now because of this disease. I think the thing that gets me a bit upset is people who do not live with me day in or day out and are not really aware of how it truly effects me tend to judge a bit too quickly. Just because I can walk unaided at this point doesn't mean I am not in pain while doing it. Or they don't see me when I am having a really bad day and I'm laying in bed crying because the pain is so bad. All I'm saying is they should not be so quick to assume that there is nothing wrong with me. I know what you are saying about other diseases and circumstances in people's lives. I have experienced plenty myself that I would not wish on anyone. My mother died from Lupus when I was 9 yrs old so I know what it's like to have to grow up quickly. I feel bad for your grandchild but at the same time it's wonderful that you are there for them. My father was the sole provider and he worked hard to see we had a home, food and clothes. He passed on a little over a year ago now and that has been the biggest heartbreak in my life to date. Taking care of your granchild is something that I admire greatly. Family should be there for each other and not to be overly judgemental when illness occurs. God bless you for doing good and necessary things.
Hi Raven! It's not uncommon for me to feel as though I'm getting ill. I frequently am running a low fever, and have an all-over ache type feeling. Sometimes it progresses into actually being sick, but sometimes it progresses into increased pain. For example, a few weeks ago, I had that feeling of fighting something. A week later, I got sick. But at the same time, I also had increased pain and inflammation, as well as some new and exciting ones.
More often that feeling of general malaise just lasts for a few days, and there may not be a major flare coming. I definitely agree with the not pleasant feeling.
I am new to the site & I am not sure if it is proper etiquette that my first post be a reply & not an introduction.
Finding this thread is helping me deal with my last flare up.
I feel the same at times as well, just weird. I really feel weird the day after my Humaria injection.
My flare up last week started with such bad nausea & I was sick for hours,the stiffness & soreness came right after.
The unwell feeling seems to come right before a flare up then last even weeks after. Then I feel great and it starts over again.
I am so glad I ran across this thread "accidentally." I was beginning to think there was something other than the PsA causing me to feel this way. (Or that I was losing my mind.) I didn't realize that the disease causes general malaise. It's worse for a few days after I take my methotrexate, but I've felt this way for most of the past two weeks. I'll take my first injection of Enbrel tomorrow, and am hoping that it will do SOMETHING -- Sulfasalazine did nothing, and Methotrexate alone isn't cutting it. I'm hoping I'm not in the 30% who don't respond to any of the medications. I wish my rheumatologist had been more forthcoming when I received my diagnosis last February. I would have appreciated knowing that what I was feeling is "normal" with this disease.
One comment to my doctor was “something is wrong with me”.
You know when you just don’ t feel right.
Fortunately my doctor “listened” and didn’t try to minimize.
What exactly does everybody mean when they say "flare"? I am kind of confused because my joints hurt 24/7. There has not been a day without me being in pain. Do you guys have days when they don't hurt?
Marietta said:
Yes!!
Before I have a flare I feel sort of gross.... tired, irritable, vaguely nauseous, my bones ache a bit, sort of flu-like symptoms without the fever. Sometimes this lasts for a day, sometimes for up to 5 days. Then it either goes away and nothing else happens, or kaboom! my joints flare up and the feelings go away or are overwhelmed by the joint issues.
I'm feeling like that tonight... the cold front is shifting out of my area (Pacific NW) in a few days, and sometimes upcoming changes in weather trigger these flu-like feelings.
Interestingly, I visited with a friend with Lupus today, and it's interesting that we often feel out of sorts at the same time, or flare at the same time. We both felt bad this past week, and out of sorts today.
Hi kiki.
When I was first diagnosed I too had trouble understanding what a flare was too. I think by the time I sought treatment I was in a long never ending flare. Now that I have had some relief I realize what a flare feels like in my body: I don't know if yours will be similar. I start noticing I have more pain with little activity and areas that had been relatively pain free start hurting again. For me it is one of my thoracic vertebrae and the middle knuckle of my middle finger of my right hand. They both begin to feel very unstable to me like if I bump them or move wrong they are going to become dislocated. I also start having increased pain in the joints that hurt most all the time such as my right hip, low back, right elbow and my feet and hands. I also start to notice chills, feeling unwell like I am coming down with something, mild head ache and loss of appetite but no true nausea. And fatigue! Fatigue like nothing i have ever felt before like I am about to be swallowed up by it!
Then as I started to get some relief from bios and mtx and started to be more active again I found new symptoms. These seem to be the symptoms for me of being overly active. I get swelling and mild pain in the tendon insertions. For me they are hard but still squishy places and they ache but it is milder than a flare. There are no systemic symptoms but I really want to and need to rest the area with the pain. These for me are the symptoms of being over active.
I hope this helps you to realize what might be causing your discomfort but do remember each body and person is different.
The last time I was pain free was when given morphine just over a year ago because of kidney stones, Bliss! at the time, but hard to have to get back on the pain wagon again. But a flare for me is when I start feeling really “off”, fatigue creeps up on me slowly and surely and I get more and more bad days as apposed to the good ones. The usual trouble spots feel worse and I have less movement on those areas. New areas start chiming in, my new ones this flare are my DIP joints on both hands, higher on my back ( above T6 I think) outsides of both wrists, and the top of my right foot feels like I’ve dropped a brick on it… Like its bruised, but its not. I’ve not often felt the feverishness others experience. You will become used to your own body and how its flares feel like. Hope you get some relief soon
kiki1 said:
What exactly does everybody mean when they say "flare"? I am kind of confused because my joints hurt 24/7. There has not been a day without me being in pain. Do you guys have days when they don't hurt?
I never have a day I don't hurt. But I do have many days, when on meds that work, where I have energy, less pain, little fatigue, and in general can do more. A flare is any time my disease is more active, resulting in more pain, more fatigue, less energy, etc.
I use the term flare to mean two things... either a short term period of increasingly active symptoms, such as from the weather, stress, or some other trigger. Typically lasting a day to a week.
I also use the term flare for long term, a month or more, of out of control disease, that necessitates changing medication to find something that works.
I've never heard of this! I got the psoriasis from my dad and his side of the family up the line. There is also some autoimmune disease on his side of the family, including one of the men (my great grandfather maybe?) having what sounds like severe PsA. Apparently he was completely debilitated by his mid 40's and used a wheelchair at that point in time. A big deal for a farmer.
Raven said:
I inherited my psoriasis from my dad. And I have done some reading that says studies have shown if a female child inherits psoriasis from her father, her prognosis is worse. I don't understand why this should be.