I keep reading on this site about flares. My question is, does anyone have constant chronic stiffness and soreness? My issue is constant. It never goes away. I have very bad stiffness and soreness in my low back/tailbone, my hips, pelvic area (inner and outer thighs), my knees, ankles and my feet and my neck. I do get, once in a great while, a spot that might swell up (ankle, wrist and finger)…… but for the most part I am in a chronic state of stiffness in all these body parts.
I just started Humira (my 2nd injection today) and took Methotrexate for over 3 months before this (which did nothing for me.)
Mich54, I have the same issue. I have been on Embrel for 9 weeks. I thought I was feeling better about week 4, but now fatigue has set in. I have never been one to just lay in the bed or take naps. I have been needing a nap the last several days. It’s 10:36am and I just don’t have the drive to get up. I just want to roll over and stay in the bed.
I see my Dr on the 24th. Hopefully, this is temporary. Also like you, I have constant pain in my feet, hands, fingers and shoulders. I wonder if this is a flare? Or has embrel caused what now appears to be chronic fatigue.
Hi @mich54 and @mjk2011, this is a great point. When Doctors talk about flares, they usually mean a period of time where symptoms are worse or more severe. That certainly doesn’t mean that the rest of the time symptoms are manageable, unfortunately, it just means that flares are when you’ve moved from your baseline. Does that make a little more sense? You may want to check out this thread too:
MJk2011 and VickiN……. Ok so my thing is I feel I am constantly in a flair then. I guess, basically, everyone is different. I read the articles on it. I guess I am questioning if others have stiffness/soreness all the time? That is my issue. I have it all the time. It never goes away. I have had some times when something will flair….ie, my wrist swelled, my finger, my ankle…. or just times when one part might hurt extra for some days at a time. But as for the day to day living, It never goes away. I wake up very stiff…. I can move a little easier after a while, but if I sit for a while, I am definitely more stiff. Or if I overexert myself (shopping, cleaning, etc.) I feel more stiff and more fatigued. I am constantly fatigued anyway. I have to pace myself and traveling is hard because it just takes so much out of me and you can’t pace yourself so well when you travel. I just started Humira (actually yesterday was my 2nd injection). I feel no difference yet and I am depressed thinking nothing is ever going to help me. I have been dealing with this for 30 years, with it continually getting worse and worse. (I didn’t get a true diagnosis until just maybe 6/8 months ago…..I have gone all these years with no one seeming to put the puzzle together, until I finally did it myself.) I even had pushed for parathyroid surgery in 2010 thinking that could be my problem. Crazy….. all these years, and no one helped me. I think I even ended up with a heart blockage in 2007 because of this. I am just feeling depressed that maybe this isn’t going to help me either.
Hello @mich54! I had that same question for a looooong time. I wasn’t sure what my “new” life with PsA was or what the “best” I could expect was. Everyone talked about “flares” but never really said exactly what it was. Which is guess is part of the problem. There isn’t really a clear cut answer or definition of a flare. Sure we can look at blood work and see elevated levels of CRP and stuff like that, but that isn’t definitive either. You could look at swelling, but that isn’t ALWAYS an indicator either. The list goes on and on of “possible” signs of a flare. But the truth of the matter (in my experience) is that it isn’t a clear “flare” vs. “not flare” life.
I’ve come to compare it with like a dimmer switch on a light. There are some days when the light (aka inflammation) is turned all the way up. Fatigue runs high, joint pain and stiffness doesn’t ease at all no matter what I do. When the light is dimmed, my symptoms are easier to manage and I can go about my day with extreme fatigue or pain. Then there are all sorts of ranges in the middle.
Medicine works a funny way with the dimmer switch. The way I’ve decided if it is “helping” is that the majority of my days the inflammation dimmer is turned low. Sure there are some higher days that sneak in there, but the majority is bearable. It has taken me 5 different medicines to find one that give me more low inflammation days than high. Because of that, I am quite certain that I was pretty much in a flare (of one level or another) for years before diagnosis and during my initial treatments.
Unfortunately, (to answer you questions about waking up stiff and day to day life) I’m still stiff in the morning, I’m still stiff at night, and occassionaly throughout the day. However, (and my Dr uses this for an indicator as well) I know meds are working based on how long it takes for the stiffness to ease. Is it under a half hour? Then it is probably good. Does it take over an hour? Not so good.
Does that make any sense at all? Again, this is just my experience and how I’ve come to understand and live with it everyday. I’m wishing you many low dimmer days and feeling hopeful that Humira will bring you some relief! Please hang in there the best you can and know that being a big depressed living with this is totally normal and don’t be afraid to talk to your dr about it. Apparently many anti-depressants also carry pain relieving properties (which I never knew about until I spoke with my dr) even at very small doses.
Please let me know how you are doing these days!
-Leanne, Community Moderator
Hi Leeanne – thanks for responding. I like where you said…….. ‘Because of that, I am quite certain that I was pretty much in a flare (of one level or another) for years before diagnosis and during my initial treatments.’
That is how I feel. I am never without the chronic soreness and stiffness….yes the first steps out of bed are the worst — but as the day goes on it never goes away. It’s always there 24/7….. when I do more in the day….say clean/shop, etc…. I get worse and feel worse. And as the years have gone by, it has gotten worse and worse, progressively.
What medications have you tried and what medication are you on now? I was only recently “diagnosed” (kind of had to figure it out myself…. went for years with no answers…… 30 really.) But I have had this stiffness and soreness for years, and no doctor ever helped me. I finally figured it out when I was going to a dermatologist for some alopecia areata and at the same time I suddenly had psoriasis on my scalp and behind my ears. I kind of put the pieces together myself after that, by looking it up on the internet. I also had psoriasis on my scalp when I was little, but I never thought to mention this to anyone (doctors.) I had a bad ankle swell around Labor Day last year and went to Urgent Care. So after this I brought all this info to my primary doc and told him I think i have psoriatic arthritis. Now mind you, he had me going to a rheumatologist for quite a few years and he never came up with any answers. And I also had a finger that swelled up twice and my wrist once. You think they would have put the pieces together?? I have been going to this PCP for probably 20 years and all these years telling him I am stiff and sore. I am now going to a new rheumatologist – which he should have switched me to years ago. Instead, they just act like….hmmmm I don’t know. I also had a heart blockage at 53 and I wonder now if it was due to being undiagnosed for all those years. I SO badly want this Humira to start making me feel better.
I can relate to the figuring it out yourself! I was diagnosed wrong as a child and delt with that as diagnosed.. if wasn’t until about 6 months ago I finally go referred to a good Rheumatologist and I am finally on a treatment plan for what I actually need treating.
my feet hurt AL the time and I hate to sit down or lay down. I know when I get up, I will pay for it. Don be too hard on yourself. All of us get depressed and frustrated. I’m just glad that you all are finally getting some real help.
Take care and stay on these blogs/chats. There is strength in numbers. Not to mention, it helps to know your not alone.
Hi Mjk — What medication are you using? Is it helping you? My feet are bad too. They throb when I am on them too long. If I have a busy day of cleaning, etc….. they bother me a lot afterwards. And yes, it does help to talk to others who are sharing the same experiences. You get so used to feeling like this, that you don’t really know how “normal” people feel. You start to wonder if maybe this is just the norm.
I also feel like I am in a constant state or flare up. I’ve been on enbrel for three months and so far I have only had two days that I felt slightly better. I’m constantly stiff and swollen, random spasms everywhere and extreme exhaustion all the time no matter how much sleep I get. anyone else out there that didn’t respond to enbrel? where did you go from there?
I haven’t done Enbrel. But I have done methetrexate and that didn’t work. I am now doing Humira. It’s been 2 months and I am having no response to that either. I am hoping after I have been on it for 3 months, they will try something else.
Yes it is frightening. I’m starting to wonder if going so many years undiagnosed / has damaged these areas and now maybe the meds won’t help the damage that already is done?? I went for over 30 years without any doctor figuring this out.
yup same for me, except I’m at about 17 years until it was diagnosed. I had no skin symptoms until just a few years ago. i was told it was lymes or depression. It has been a long miserable battle with still no relief in sight.
I hear ya. Same here. No one ever came up with any answers for me. I am actually going to start a 6 week run of prednisone, and I am kind of excited about it. Have you ever done any prednisone? I am imagine it will help a lot, but then it’s something you don’t want to be on forever. I am going on a trip on June 14th and the doctor told me that if I am not feeling any better from Humira by then, they could prescribe a 14 day prednisone. But now, they decided to give me some sooner….. And then when my trip is done I have an appt with them for my 3 month visit and we will discuss then, what to do next. And yes…. it just keeps getting worse and worse.
no my rheumatologist won’t give me prednisone. she said it does work but after you take it your symptoms come back with a vengeance. not sure how correct that is, maybe someone who has taken it can weigh in. yeah they kept telling me a was depressed and I always said “well I don’t feel depressed” until I finally begged my doc to send me to a rheumatologist. my first appointment with her she confirmed it was psa. I’m interested to know how the prednisone run will work for you so do keep me informed. I see my rheumatologist in a week, I’m hoping she will put me on humira or something new. enbrel isn’t working and I feel dreadful, and the weather here in pa isn’t helping. dreary, rainy, and cold blah
Yeah I’m pretty sure you will feel pretty crappy again when you stop the prednisone. Why wouldn’t you? It doesn’t cure anything really. Just relieves inflammation. But I really wanted to do it for the trip. And then when he offered it now – after 30 years of dealing with this – I really want to see how I will feel with taking it. It’s like a present. Lol. It’s like yeah let me have a little break. I will come back and let you know how it’s going. I took first ones today.
Yeah let’s hope we both can find something that will work for us. 😏
I know exactly what you mean. when my first package of enbrel arrived I was really excited for the chance to feel a little better, but sadly that didn’t work out. I realize there is no silver bullet treatment or cure but I would be happy to have a day or two a week to feel somewhat normal. here’s hoping we both find that. good luck, I hope the prednisone works wonders for you, at least for a little while because it sounds like we both feel even a few days of relief would be a gift from god lol
Hi again. What is your name? Mine is Michelle.
Yes… I felt the same way. First he started me on methotrexate and I had hopes for that. Didn’t work. Then I was like — Ok now maybe the Humira will work. Well…. no…not yet anyway. We have such high hopes and then they are dashed. I actually cried a little the first couple times when I woke in the morning after the shots, and felt no better. It is so disappointing when you are so hoping for some help.
I have to say… it is my second day of prednisone and I think I can feel some things are a little better already…..😊 IF only we could live on this stuff, but we can’t. It’s not good for us, I guess, for long term – And it also makes you gain weight and I struggle with losing and maintaining all the time. And in talking to someone on one of the PsA FB pages (are you on Fb?) she says that her doc gives her even higher doses of prednisone than mine gave me. And he gives her a prescription all the time for flare ups – to have on hand.
But I guess my doctor probably figures start me lower and then see if I need it stronger or not. Better to keep it low if it will do the trick.
If you want to email me you can at ********. Or if you are on fb…let me know and we can friend. Or message.
It’s fantastic to read so much support here, Mike and Michelle! I just wanted to let you both know your email addresses have been masked to protect your privacy (per our community rules.) To stay in touch, there’s a checkbox under the comment text box you can check to be notified via email of replies. I hope this helps. -Eileen, Psoriatic-Arthritis.com Team
my name is mike and i ditched facebook but feel free to email anytime **********.
I’m so glad to hear you are getting some relief from the prednisone. I was also on methotrexate awhile and all it did was make me feel more exhausted than normal. been on enbrel about two and a half months with no improvement. after my second shot I felt pretty good for a few days but never worked after that. could have been placebo or maybe my body built up antibodies to enbrel (not sure if it’s possible to that fast) are you still on mtx along with your humira? I’ve heard that people like us sometimes have success with both if just the biologic doesn’t work but the potential side effects from just taking one alone scares me enough. I have even tried cbd gummies for awhile, and while they were quite expensive, they didn’t help me at all. glad to hear you are starting to feel better maybe I can talk my Dr into giving me some for when the pain is unbearable. good luck with it and enjoy your trip!
No I am not on MTX. He told me to stop that when he started the humira, because he said it’s not doing anything. I know I have read people are on both. But my liver function was up a little…not bad…but maybe because of that he thought, why bother ??? Who knows. Different doctors have different beliefs. That’s another thing that makes it hard. We might hear of something someone else is doing, but yet our doctor doesn’t want to do that. And you can’t make them! Just like yours not wanting to do prednisone. I get it. He thinks it isn’t a lasting fix, but it’s nice for people I think who have flareups. Which Im not even sure what that means. I am bad all the time in so many spots, that I don’t really know what flareups mean. Maybe like when you get a swelled up joint ?? But we really need to find something that will help the pain long term. And it’s so frustrating trying different ones and then having to wait months to “SEE” if maybe it will start working. Today I took my third day of prednisone. I can see I am better, but of course not totally better. But maybe that will happen as I get more and more in me. I still have the same spots that are bad — but they are a little less. I mean… really it’s only been 2 days…so….