Having a hard time emotionally & with pain. My husband doesn’t relate to my sadness and keeps telling me to stay positive. I think am slipping into the angry part of grieving. So sick of people minimizing my pain/discomfort!
Sometimes it's like you want to wear a sign that says "I'm sick" because this disease doesn't show. So many people think that if you look alright, you are alright.
One time I went to my doctor and told him that I thought I was depressed....he gave me prednisone instead, which stopped the pain, and I did feel better, and not depressed. This doesn't work for everybody. Depression sounds like it is common with this disease. Your life changes sometimes in so many ways, anyone would be depressed, and for good reason! But it is only temporary, try to do something about it if possible.
I understand how you feel. My family doesn't see any change outwardly but I know that I'm in pain most of the time. So I find myself pretending I'm well just so I don't get the looks of (I think your a hypo ) look. This group has been a god sent to me. I have learned so much about PsA that I had no way of knowing. Even my Doctors didn't tell me much about what to look for or how I would feel. How much pain I would be In. So stay with us on the group and learn what you can and be encouraged by everyone here. In my Prayers
Pigeonfury said:
Having a hard time emotionally & with pain. My husband doesn't relate to my sadness and keeps telling me to stay positive. I think am slipping into the angry part of grieving. So sick of people minimizing my pain/discomfort!
I hear both of you! This disease really sucks!
Pain is one of the hardest things to cope with because 1) it is hard to quantify (those silly Likert scales from 1-10 they give you at the hospital is the medical community's attempt at doing so), and 2) it is subjective, which means it is so very individual that it is impossible to describe in a way that is completely understood collectively. The closest any person in the medical community came to "getting" it was my old doctor (who was a Physician's Assistant). At one point I went to see him because my lower back was hurting so badly that I couldn't stand up straight, couldn't walk, couldn't even stand for more than a few minutes. His said, "Kelly, this really concerns me because you have such a high pain tolerance that if YOU say something hurts, it means that the rest of the world, including me, would be writhing on the floor crying for their mama if they experienced even a fraction of the pain that you are feeling." He sent me to get an MRI, and then when he got the results, he told me he wasn't touching that, and that I needed to go to a back specialist immediately. As it turns out, I had 3 herniated lumbar discs with peripheral permanent nerve damage that was exacerbated by the PsA. At the time, I hadn't yet been diagnosed with PsA, and this event was what led to my being seen by a Rheumy on the advice of that PA and was diagnosed. My PA's wife also has an autoimmune disorder, and he was the most compassionate and understand of all the doctors I've ever seen. I only wish I could have convinced him to pull up stakes and move to Oklahoma with me!
I gotta know Kelly, your screen name. Are you a wolf lover or related in someway to the old 329th Timberwolves (104th Infantry division) What an incredible history.................
The wolf is my totem, or spirit guide, or whatever you want to call it. Its a LONG story, best told over a glass of wine around a crackling campfire. :)
Okay there is a story about what I was doing last night about dark on the "brain" thread. don't read it okay??? My number 4 son is Athabaskan and married into a traditional family so I understand a bit about totem.
Pigeonfury, boy do I get what you are feeling. I went through some very similar symptoms (still am, actually), and it is really really really hard to explain to a doctor that one day something hurts, and by the next day or week or month 30 other things are hurting to a point where you cannot live the life you have always lived before. PsA is such a tricky little monster! It migrates. It rears its ugly little head every time you turn around. It is possible that all of the issues you mentioned are connected, in that you are walking differently (limping) than usual, so the rest is responding to this new way of moving. Then again, it is entirely possible that your PsA has decided that leg/foot seems like a great place to roost for awhile. There really isn't any way to know for sure. It doesn't actually matter which it is because the point is you are hurting, and it sucks. Lots of good suggestions here. Prednisone is always a standby for flares because it reduces inflammation much better than NSAIDS, etc. But...there are side effects to Pred also, so just make sure you are aware of them before you start taking it. If you have visible swelling in a joint and can get to a position where that joint is submersed in warm to hot water, add a large amount of epsom salts to the water and soak it as long as you can. I know it sounds hinky - like one of those old wives tales you hear so much about - but it really does work. My pops taught in the medical school at Ohio State University in the Physiology department for 30 years. He is my go-to guy for any medical issues/questions that pop up. He gave me a very long complicated explanation for why soaking an inflammed joint in hot water infused with epsom salts works, and if I could remember it all I'd impress everyone with my great knowledge, but truth is...I can't remember 90% of what he told me, and understood even less than that. All I know is it really does work. Somehow the salt pulls the excess liquid through the skin and helps to relieve the inflammation. Once the inflammation is under control, much of the pain goes away also. Unfortunately, I'm old and creaky, and my knees don't work as well as they used to, so I can't actually get in the bathtub anymore. Well...I could get in, but I'd be trapped because I can't get back out. How embarrassing - can you imagine calling the fire department to get you out of the tub!?! NOT gonna happen to THIS gal! My wonderfully understanding hubby offered to help me get out if I want to soak for a while (that used to be my favorite way to relieve stress...nice hot bath, glass of wine, soft dreamy music, good book), but I'd feel really bad if he blew his back out or gave himself a hernia getting me out of the tub, so I declined his generous offer. But I digress...
NSAIDs (Non Steroidal Anti Inflammatory Drug), hot water/epsom salts, alternating cold packs/heating pad, and rest are probably your best bet. There are lots of people on here who have talked at length about gentle yoga as being their life-saver. I'm not only old and creaky, but also really ungraceful, so I have opted to forgo Yoga and/or Tai Chi for the time being :) but if you search through old posts, you will find it mentioned a lot. The best news is, you are in the right place to ask questions and to find out real honest - to - goodness solutions to most PsA related problems. Not only that, but not a single one of us will ever tell you your being a hypochondriac, because we've been there (and most of us are still there). <hugs>
TaraLynn, Sorry to have written a mini-novel on your thread. I'm so sorry you are hurting so badly, and I wish there was a magic wand somewhere that we could wave to make it all just disappear. Try the soaking in epsom salts infused hot water on your foot and see if that helps with the inflammation. It certainly won't hurt to try, and it might just make this flare more tolerable. I use this method every time one of my peripheral joints gets bad. Doesn't work so well on abdominal inflammation (IBS is SUCH a joy - NOT), but it seems to help on ankles, feet, toes, wrists, hands, and fingers.
You KNOW I'm gonna go search that out, right? :) Inquiring minds and all...
tntlamb said:
Okay there is a story about what I was doing last night about dark on the "brain" thread. don't read it okay??? My number 4 son is Athabaskan and married into a traditional family so I understand a bit about totem.
I went to a podiatrist. It was helpful. Shots in the joint and muscle insertion point. Also new orthotics. You’re whole foot looks swollen tho. Hope the oral steroids help you!
So tmbrwolf329,, you don't say, but how do you soak your leg or foot when you don't use the tub? I don't have one, for the very reason you mention....can't get out of the damn thing. I looked for you did that, but didn't see it.
tmbrwolf329 said:
Pigeonfury, boy do I get what you are feeling. I went through some very similar symptoms (still am, actually), and it is really really really hard to explain to a doctor that one day something hurts, and by the next day or week or month 30 other things are hurting to a point where you cannot live the life you have always lived before. PsA is such a tricky little monster! It migrates. It rears its ugly little head every time you turn around. It is possible that all of the issues you mentioned are connected, in that you are walking differently (limping) than usual, so the rest is responding to this new way of moving. Then again, it is entirely possible that your PsA has decided that leg/foot seems like a great place to roost for awhile. There really isn't any way to know for sure. It doesn't actually matter which it is because the point is you are hurting, and it sucks. Lots of good suggestions here. Prednisone is always a standby for flares because it reduces inflammation much better than NSAIDS, etc. But...there are side effects to Pred also, so just make sure you are aware of them before you start taking it. If you have visible swelling in a joint and can get to a position where that joint is submersed in warm to hot water, add a large amount of epsom salts to the water and soak it as long as you can. I know it sounds hinky - like one of those old wives tales you hear so much about - but it really does work. My pops taught in the medical school at Ohio State University in the Physiology department for 30 years. He is my go-to guy for any medical issues/questions that pop up. He gave me a very long complicated explanation for why soaking an inflammed joint in hot water infused with epsom salts works, and if I could remember it all I'd impress everyone with my great knowledge, but truth is...I can't remember 90% of what he told me, and understood even less than that. All I know is it really does work. Somehow the salt pulls the excess liquid through the skin and helps to relieve the inflammation. Once the inflammation is under control, much of the pain goes away also. Unfortunately, I'm old and creaky, and my knees don't work as well as they used to, so I can't actually get in the bathtub anymore. Well...I could get in, but I'd be trapped because I can't get back out. How embarrassing - can you imagine calling the fire department to get you out of the tub!?! NOT gonna happen to THIS gal! My wonderfully understanding hubby offered to help me get out if I want to soak for a while (that used to be my favorite way to relieve stress...nice hot bath, glass of wine, soft dreamy music, good book), but I'd feel really bad if he blew his back out or gave himself a hernia getting me out of the tub, so I declined his generous offer. But I digress...
NSAIDs (Non Steroidal Anti Inflammatory Drug), hot water/epsom salts, alternating cold packs/heating pad, and rest are probably your best bet. There are lots of people on here who have talked at length about gentle yoga as being their life-saver. I'm not only old and creaky, but also really ungraceful, so I have opted to forgo Yoga and/or Tai Chi for the time being :) but if you search through old posts, you will find it mentioned a lot. The best news is, you are in the right place to ask questions and to find out real honest - to - goodness solutions to most PsA related problems. Not only that, but not a single one of us will ever tell you your being a hypochondriac, because we've been there (and most of us are still there). <hugs>
I soak my foot by getting my husband to fill a big pan or the dish bucket I use when we used to go camping with really hot water, and stick it in. That is how I soak my hands also. This way I can sit in a comfortable chair and watch tv while soaking. My left knee has been swollen to over 4x its normal size for about 4 years now, but I haven't figured out a way to soak it yet. I keep hoping we'll win the publisher's clearinghouse sweepstakes so I can buy a disabled-friendly hot tub...but I guess I should start entering if I want to win it :)
Thank you and good luck on that sweepstakes!
I SO greatful for all of you wonderful people. Thank you for taking the time to listen, share, and explain.
Hi, I’m 35 & just diagnosed last year. Been on Nabumetone 3x/day, my symptoms have been well controlled with that for a while but now my Left Elbow is hurting so bad again & this is the same one that has been treated as Tendinitis before I even got Dx with PsA. Can’t remember how many Cortisone shots I have had on this elbow! And my Left leg from Knee to tip of my toes hurt! They do not swell but it hurts so bad especially in the early mornings! I have seen my Rheumy but she said, “I do not see any swelling.” She does see the swelling on my Elbow but not my leg so she’s not associating it with my PsA. I guess my main question is, is there ALWAYS swelling when your joints hurt to associate it with PsA? What are your thoughts on this? Any info would be so helpful right now! Getting desperate here but getting “brushed off” again! 
I hate feeling like I am perceived as a hypochondriac, but this is real.----Pigeonfury
I know exactly how you feel when I am perceived as a Hypochondriac as well…but my pain is real that I can’t sleep coz I can’t find a comfortable position–or moving hurts! I wish people would understand how our pain is real rather than be judgemental about it!
I have pain and no swelling with PsA, but seem to have swelling with tendonitis. My doctor sees swelling I don't though. I think my answer to your question is no. Others will say something different, I am sure.
I am certain that most of us have been made to feel like the DR just doesn't get what we are saying. Have you always appeared to DR as someone in control, if so try acting the way you truly feel. Scream, shout and throw the DR about. Make he/she really "hear" you AND if that doesn't help think seriously about changing doctors.
jennyb said:
I have pain and no swelling with PsA, but seem to have swelling with tendonitis. My doctor sees swelling I don't though. I think my answer to your question is no. Others will say something different, I am sure.