I was diagnosed with PSA about a year ago. after dealing with pain for years! Of course I have a long story like everyone else, but for now I just want some better understanding of flares. I have pain every day in my back, neck and shoulders. Mornings are like the roll of the dice wondering what new will hurt for the day ... it could be my knee, ankle, elbow, wrist and so on. I take Meloxicam and Gabapentin every day. The past week though I have barely been able to get out of bed with unusually extreme lower back and hip pain. Yesterday really scared me though. I woke up at 6:30 that morning and literally could not move due to severe pain in my left hip ... the joint area at the top of my upper thigh and hip. I was in tears trying to move at all. I had not injured it, nor had I over worked it. There was no explanation for the pain. I had my husband get me my meds. and start massaging and helping me move my leg, which was extremely painful! I finally got to the point where I could move and even stand hours later. I'm still limping when I walk, as it feels like a truck ran into my hip. Is this a flare or something else? I'm waiting on a call from my doctor. He told me initially as my symptoms were mild that we would stay the course with my meds. I'm scared since I don't know much about this disease. Is my disease progressing or is this just a flare? Anyone have any advice? Thank you in advance for any thoughts.
Hi Edward, PsA is a progressive disease. It is quite possible you are progressing.
Hi edwards1992! Sounds like a righteous flare to me. Sorry for all your pain. It's like Wheel of Fortune in the morning, isn't it? Spin the wheel, what will it be?
I have experienced really bizarre flares, too, and am always left wondering what on earth I had done to cause it (spoiler alert: the answer is nothing!). There are all kinds of things that can be going on, including rampant inflammation and even enthesitis
My last flare made it impossible to walk--I couldn't get out of my chair at work and it scared me to no end. After a shot in each hip bursa from my rheumatologist life got a lot better. Unfortunately these are the joys you just have to roll with.
What works best for me is heat (heating pad) and wet heat (bath, hot tub). Some people use ice--but I think they must be masochistic! Hang in there. Glad your partner was able to help you out.
I'm confused why are you not taking any drugs to treat your PsA. Gabapentin won't do a thing for your disease and most certainly does not treat inflammation. I''m not saying you don't have Neuralgia, but nothing you are taking at present will stop the progression of your PsA. I think its time for your doc to realize you can not treat PsA with Anti-convulsant drugs and very mild NSAIDS.
Myself I'd be asking why when the standard of care is early aggressive treatment for PsA why he is sitting on his hands while at the same time start looking for a younger board certified Rheumatologist whop will start taking care of you.. In the meantime unless you have documented Neuralgia or convulsions I'd be wanting off that Gabapentin. Its addictive, dangerous, expensive and obviously not working.
BTW welcome to the boards. I'm glad you found us. I'm famous fro keeping my thoughts to myself and never saying what I think.
As far as your hip, is possible you are a side sleeper? The pain you are describing is classic PsA Enthesitis but also happen when you have some minor inflammation around your SI's and sleep on your side. Alternating heat and Ice on it and stretching it out will help a lot. One of the best stretches is a good swift kick to your docs butt to get him moving in taking care of you.
At minimum you need to be on an NSAID and DMARD.
I was told by my doctor any increase in pain is considered a flare. It's very possible the disease is progressing and it's important to work with your doctor and a rheumatologist to manage your disease.
I was also told my disease was mild, however it seems to be progressing fairly rapidly. I have been on MTX since April of this year and we have now added Sulfasalazine to my treatment. I'm still having overall pain and flares with swelling so it seems this mix is not working. The journey to find the right treatment can be long however I was told there will be something that will work to help get back to a more functioning life.
Good luck and I hope you find some relief and a treatment that works for you soon!
My road to diagnosis discovery started several years ago when out of the clear blue my knee started swelling tremendously with horrific pain and fever from it. My Ortho. ordered x-rays, mri, bloodwork, etc, but still no answers other than a high SED rate. He finally sent me to my first Rheumatologist. By then I was feeling like a freak, but was in horrific pain and could not use that knee! They ruled out Gout, RA, Lupus, etc. Finally put me on an antibiotic and anti-inflam. without a diagnosis for fear of losing my knee. That combo. worked at solving the problem. My Rheumy ordered more bloodwork and did more of a history work up on me. She informed me I tested positive for HLA-B27 and ordered an mri of my back since I informed her I had lived with back pain for years! The mri showed disc degeneration, but nothing conclusive for ankylosing spondylitis. She felt an inflammatory disease was in the works, but had not specifically revealed itself. She wanted to put me on Methotexate then, but I was leary of taking such a strong med. when I didn't even have a diagnosis! So that's how I ended up on Meloxicam. It has helped to keep me moving. Before then I felt like an 80 year and I was only 40! I ended up with a new Rheumy who put together the psoriasis on my scalp and hands, along with all my other symptoms and such ... that's when the PSA diagnosis was determined though I still had my doubts. Anyway, the Gabapentin was prescribed due to nerve damage from a fractured neck in 2005 (auto accident), where I had to be fused. We had another bad auto accident back in Feb. of this year, which re-injured my neck. So it's been hard for me to know which pain is PSA and which is from the auto accident. I do know the difference in joint pain though. My hips and lower back have been bothering my terribly lately. I have other joint pain, but no inflammation to speak of. I'm so new to all of this ... I don't even know what NSAID and DMARD are? One thing I do know though ... I can't live with this pain and loss of mobility. I have a 17 year old, 15 year old and a 3 year old!
Hi there, Edwards! It sounds like a flare to me, but don’t dignify it with the word “just”. Inflammation is never a good thing, and I hope, as Lamb says, you get action from your doctor asap.
Speaking of your doctor, are you under the care of a rheumatologist? I wonder because you aren’t on a DMARD of any kind. Most rheumies, I think, would have started you on something in the hopes of limiting the damage that this disease can wreak.
Please don’t underestimate PsA: it can do some pretty nasty things to you when it gets going. I’ll spare everyone my story, but you can read it on my profile.
Thank you! I'm doing the research now while I wait for my doctor to call.
janeatiu said:
Hi edwards1992! Sounds like a righteous flare to me. Sorry for all your pain. It's like Wheel of Fortune in the morning, isn't it? Spin the wheel, what will it be?
I have experienced really bizarre flares, too, and am always left wondering what on earth I had done to cause it (spoiler alert: the answer is nothing!). There are all kinds of things that can be going on, including rampant inflammation and even enthesitis
My last flare made it impossible to walk--I couldn't get out of my chair at work and it scared me to no end. After a shot in each hip bursa from my rheumatologist life got a lot better. Unfortunately these are the joys you just have to roll with.
What works best for me is heat (heating pad) and wet heat (bath, hot tub). Some people use ice--but I think they must be masochistic! Hang in there. Glad your partner was able to help you out.
Thank you! The better I become enlightened the more I realize that my doubts of diagnosis and taking this disease lightly could possibly hurt me. I'm so worried about seeming to be a hypochondriac. I'm always hurting and hate complaining. I think it's time for me to come to the reality that I have got to be pro-active with my treatment and go ahead with whatever the doctor suggests. :-(
Seenie said:
Hi there, Edwards! It sounds like a flare to me, but don't dignify it with the word "just". Inflammation is never a good thing, and I hope, as Lamb says, you get action from your doctor asap.
Speaking of your doctor, are you under the care of a rheumatologist? I wonder because you aren't on a DMARD of any kind. Most rheumies, I think, would have started you on something in the hopes of limiting the damage that this disease can wreak.
Please don't underestimate PsA: it can do some pretty nasty things to you when it gets going. I'll spare everyone my story, but you can read it on my profile.
Thank you! I am a side sleeper, but not on that side. Does that make a difference?
tntlamb said:
I'm confused why are you not taking any drugs to treat your PsA. Gabapentin won't do a thing for your disease and most certainly does not treat inflammation. I''m not saying you don't have Neuralgia, but nothing you are taking at present will stop the progression of your PsA. I think its time for your doc to realize you can not treat PsA with Anti-convulsant drugs and very mild NSAIDS.
Myself I'd be asking why when the standard of care is early aggressive treatment for PsA why he is sitting on his hands while at the same time start looking for a younger board certified Rheumatologist whop will start taking care of you.. In the meantime unless you have documented Neuralgia or convulsions I'd be wanting off that Gabapentin. Its addictive, dangerous, expensive and obviously not working.
BTW welcome to the boards. I'm glad you found us. I'm famous fro keeping my thoughts to myself and never saying what I think.
As far as your hip, is possible you are a side sleeper? The pain you are describing is classic PsA Enthesitis but also happen when you have some minor inflammation around your SI's and sleep on your side. Alternating heat and Ice on it and stretching it out will help a lot. One of the best stretches is a good swift kick to your docs butt to get him moving in taking care of you.
At minimum you need to be on an NSAID and DMARD.
Its actually the opposite side that can be the worst effected especially if you have a wrinkle in your mattress pad or night clothes under it.
I'm glad there was an explanation for the Gapapentin. Sadly its been given as a "hypochondriac drug" far too many times.
I had a long reply that I accidentally deleted, but apparently others did a good job. This is very serious stuff. Just don't believe everything you read on the internet about the drugs. Its mostly Hype, lawyer Talk and Drama queens and frankly I suspect by people who don't actually have the disease but managed to get treatnment for it anyway. I would fight hard anyone who attempted to take away my MTX and frankly they would have to pry my cold dead fingers from my Enbrel. Fear the disease NOT the treatment. FWIW I was once in a chair dependent on Narco's to get me through the day. I'm in my sixties and back packed 60 miles with my Grand kids this summer through Glacier Park (didn't say I didn't hurt like hell at night) I have PsA and AS with some cervical fusion.
Is MTX Methotrexate?
tntlamb said:
Its actually the opposite side that can be the worst effected especially if you have a wrinkle in your mattress pad or night clothes under it.
I'm glad there was an explanation for the Gapapentin. Sadly its been given as a "hypochondriac drug" far too many times.
I had a long reply that I accidentally deleted, but apparently others did a good job. This is very serious stuff. Just don't believe everything you read on the internet about the drugs. Its mostly Hype, lawyer Talk and Drama queens and frankly I suspect by people who don't actually have the disease but managed to get treatnment for it anyway. I would fight hard anyone who attempted to take away my MTX and frankly they would have to pry my cold dead fingers from my Enbrel. Fear the disease NOT the treatment. FWIW I was once in a chair dependent on Narco's to get me through the day. I'm in my sixties and back packed 60 miles with my Grand kids this summer through Glacier Park (didn't say I didn't hurt like hell at night) I have PsA and AS with some cervical fusion.
Yes, MTX is short for methotrexate.
It’s easy to feel like a hypochondriac with this disease: the ache is here, the pain is there it goes away then it’s something else. You’re tired, but hey, if you’d slow down/lose weight/exercise more/eat better blah blah blah It’s no wonder you’re exhausted. They do an x-ray and it shows nothing, so you must be really exaggerating. Blood work? Sorry, no problem there … if you were truly unwell, it would show in your blood, wouldn’t it? Pain you say? LOL … suck it up and take tylenol.
Yes, I felt like a complaining hypochondriac too. So I sucked it up. Kept going. Pushed myself. My guess is that I had “it” for about 20 years. And I’ve got the damage to prove it.
Early and aggressive treatment is what I should have had. But better late than never.
It sounds like you're familiar with pain. As I told you, I got a shot in each hip bursa. As soon as I got the injections the pain vanished (because of the anesthetic) and immediately my knees felt terrible. It made me realize that my knees had been hurting all along but my hips were _so_ bad that I forgot about other body parts.
Don't worry about sounding bad for complaining about pain here or with your doctor. You absolutely MUST specify all the things that hurt, how much they hurt, what kind of pain, what makes it better or worse and so forth. You will not be taken seriously if you mask your symptoms for fear of sounding whiny. This is a SERIOUS and PROGRESSIVE disease. And if you underplay your symptoms you run the risk of letting the disease get the upper hand.
You've come to the right place for wise counsel and sympathy in equal measure. Listen to the moderators. They know their sh+t! Good luck!
I talked to my Dr. this evening. I start MTX tomorrow, along with folic acid. He said to remain on the Mobic as well. I'm nervous, yet hopeful. He said no alcohol while on MTX. I won't deny I love a good glass of wine or mixed drink, but I want my life back! I'm so tired of missing out on life due to the pain. I pray this is the answer I've needed! Thank you all for your help today!!!
Yay! The MTX can be a godsend for some. The folic can help with nausea. If you feel a bit wiped out the day after your MTX dose, that’s normal, too. Whatever you’re going through, let us know.
Oh, and I love a good G&T, or bourbon, or wine. And I was VERY good while on MTX and avoided them all. As you know it’s a pretty strong drug so don’t mess around with it or your liver might get feisty.
Seems like you have a responsive physician. That’s a really good sign.
Don’t be discouraged if it takes a week or 2 to notice a difference with the mtx. I’ve been on it 8 weeks now and I’m not 100% better I do feel better then befor I started. I too have felt I have complained about pain for years. I’ve most likely had this since my teens. But only diagnosed last December.
I did forget to mention that my Dr. is also calling in a 12 day round of steroids to help with relief in the meantime. He did mention that it would take some time to notice any improvement with the MTX, so hopefully the steroid will help.
I ended up on 20mg prednisone for eight months. Not the greatest option but it helped me and especially early on I felt like WonderWoman after months of feeling like a snail. I have no doubt that the steroids will be very helpful to you. Just remember, if they make you feel hungry, you’re NOT hungry. That’s the steroids talking to you 