Hi there. I just joined tonight as a result of a search for "Psoriatic Arthritis Support Group". This is the first time I have looked for a support group. I have been in pain during my 24 years of life. I have gone through a few different medicines and many different herbs/supplements/lifestyle changes. I'm currently on Simponi & Celebrex with occasional Prednisone for flare ups. My next Rheumatologist appointment is June 27th. My first appointment with a Pain Management Specialist is June 28th. My boyfriend got sick a month ago, and I caught the viral infection he had. I'm mostly over it, but with some residual effects (like a minor sinus infection). I was supposed to take my next dose of Simponi 3 weeks ago, but refuse to because it's possible I still have an infection. I need to see my doctor to double check that everything is OK, but because of my financial situation, I'm unable to see my doctor until June 26th at the earliest. Because of this, I'm having a bad flare up (and have been for the past 3 weeks... though it keeps getting worse). I guess it's not really considered a flare up, then but "returning to BAU".
With the increasing pain, the problems sleeping are returning with a vengeance. I can't fall asleep, I can't stay asleep, I'm increasingly and consistently fatigued during the day, I'm having a harder time doing things... Tonight especially I was feeling very sad, lonely and frustrated.
I have to say: Simply finding this website and reading some of the posts has lifted my spirits significantly. It's amazing how much it helps just to know that other people are experiencing the same things that I am, and reacting the same way. I think I will be very happy here.
My name is Holly, and that was my little introduction. I would love to have friends with PsA or other similar diseases that I can reach out to and vice versa. I try my very best not to complain about how I'm feeling because I know it's annoying to hear a broken record unless you can fully understand it. I know that people can't understand it unless they've experienced it. My boyfriend convinced me to open up about it with him, and then one night when we had both been drinking we got into an argument - he brought up hearing me complain about how I'm feeling. In the same breath he said it's fine and he doesn't mind hearing about it, but for the past week please believe I haven't said a negative word about it. I don't blame him - everyone needs a break. And I had been bringing it up way too much recently. But that's a separate issue! :)
Each and everyone of us could have written most of this, of course it varies per person, but the very valid complaints, disappointments, anger, pain, frustration, arguments, med problems, money problems...
You have come to a very good place, we know like you know, and the guys, 'Ben and his friend's' know too, everyone is here for everyone else, it's great! We moan and graon to each other and it takes the pressure off the mate. They go through so much too, in some cases this disease can be a real relationship ender! Yours is still there, mine is still here, but they do get tired of it, but hey, SO DO WE!!
I'm going to send this now so you don't leave thinking no one is responding, so talk to me!
Really appreciate it, thank you. I'm very fortunate that my SO is very supportive. I brought up this subject with him relatively early on, and we have had a few very candid, very open discussions about it. My fears of him being the caretaker, the unfairness of that, my feeling that he deserves to have someone who is less medical maintenance (so to speak). I also told him very early on that I don't want sympathy, I mostly want understanding. I'm very thankful that we have our little routines -- I can hand him an unopened bottle or a disposable ketchup packet without saying a word while we're in a group and he opens it for me & hands it back, without making me interrupt the conversation to ask for help on such a "small thing" and feel awkward. It is 2am here -- if it is just as late where you are, I hope you are still awake because you choose to be, and not because of a flare up.
You just missed a gal, who along with her sister, have suffered this since childhood, I think 5 years was about her recollection as well. I look back and can see this coming, but not from childhood, but you know what they say about hind sight.
This is a great place to come to vent, to learn, to share with the only ones who really do 'get it'! So glad that you are talking, some do, some don't. Some just come on and read for days before saying much, some never say anything, and very, very few are loved ones or friends of those who suffer, I would say that the ones I am familiar with are 99.99%the ones who suffer!
Holly, none of us sleep well, or for long, it is usually pain, sometimes it is difficult to say just what it is. Hyper-exhaustion, hyper-mania? Not really sure what the name may be, you know?
I do not have the rash, but the pitted fingernails instead, not nearly as intimidating, but I have spinal stenosis, and a few other autoimmune diseases, so we all have something we want to fix, last year, 10 years ago, pre-conception because this is a hereditary disease.
My grandmother was hunched, hump-backed, gnarled hands and fingers and worked like people back then did, her mother, and her mother, and her mother all had this joint disease!
Bad news! But there are new meds in clinical trials all the time, most of us are on a biologic med, I am about 6 weeks in with Enbrel right now, not sure if it is helping or if it is climate change, but am a little better.
Oh wow. I would love to get in contact with those ladies. For privacy's sake, please feel free to send them a message for me letting them know they can contact me if they choose. Hopefully I'll stumble across their post! With that being said, about 99.99% of the people you're familiar with on this website being patients... I think I will encourage those I know to browse this site (and maybe even sign up). I have shared a short version of my story on Facebook recently -- during the "Psoriasis Awareness Week" in April or whenever it was. I may post a link to this site on FB & see if anyone responds.
I'm sorry to hear about your experience with PsA. Please know that you are not alone. Most of us have written several messages very much like yours. Is there something in particular on your mind tonight or are you just discovering the board?
SK introduced you to me and asked me to say hello. So hello! :-) Sorry you are having trouble sleeping tonight. That's not unusual for any of us. Between pain, discomfort and plain worrying about it all, it's really hard to get a good night's rest.
It does sound like your boyfriend is supportive, which is GREAT. But you also are correct that over-using our families as sounding boards can get old for them. That's when a board such as this becomes very useful. It lets us vent our problems and concerns with people who truly understand. And it gives our families and friends a much deserved break.
I get accused by my DH of talking about my illness "all the time," although I'm also quite sure that I don't do this. lol Who is right? Does it matter? Whatever the truth is, he is hearing too much. So I know I need to back off a bit.
Funny you'd mention a sinus infection and being off your meds. I have some kind of cold/flu right now, too. I was off my meds (Plaquenil and MTX) for a couple of weeks because of this, but I went back on them Friday. I was flaring so badly, I decided I'd rather take the chances of the cold lasting a bit longer. (Bummer, 'cuz it's a bad one!) You have to do what is best for YOU, with advice from your doc.
I was just reading through your profile and I find it to be quite interesting that you were diagnosed with hypermobile joints. I have this, too! In fact, you are probably the first person on any arthritis message board that I have met with this diagnosis. I actually have Ehlers Danlos Syndrome. Part of the EDS gift to me is hypermobility. Yes, it hurts...BIG time. I am so sorry to hear you are dealing with this in addition to the PsA.
I remember being told as a kid that I was suffering from "growing pains." BS! There's no such thing; it doesn't hurt to grow!! But constantly stretching joints past their normal range of motion hurts like heck--not to mention the constant damage it does to the joints and surrounding connective tissue.
I suppose you also have memories of being the only kid who could do this or that trick. Wish I had known when I was a kid that I probably was hurting myself with those movements. I empathized when I read about you talking with your friends and discovering everyone didn't have the same pain as you. When we grow up with it, it's natural to presume that everyone feels it, every day, all the time. And, it's a shock to find out that isn't the case. I recall, sadly, being told that I simply could not be feeling the pains I was describing. It does a number on a young head, to say the least. Oh well, past is past. Still, it's so intriguing to meet someone with the same (or very similar) memories.
Anyway, just wanted to touch base with you again and let you know how much your profile hit home with me. And to say "welcome" again!
Hi Holly! I have no idea how I missed this thread!!
We think I've had PsA all my life - I remember my ankles swelling for no reason in kindergarten - I was four. I got diagnosed last year at age 36, after years of being told it was growing pains, then it was all in my head.
My husband, to whom I've been married for 16 years, still has a difficult time understanding what it's like to live in a body that doesn't cooperate and is always in pain. It's difficult to find the balance with reminding the person you love of your pain and limitations while not complaining about it too much. I told my husband to assume I'm in pain, am having trouble moving, and am exhausted and I'll tell him if it's otherwise. It's a lot more fun to say, "My feet are doing so much better today!" one day, than "my feet are killing me" 32 days. I have PsA in just about every joint at this point, including my chest, so it's all fun and games here! :)
Byrd - I have a friend with EDS. Her daughter has it as well. I don't, but remember being shocked that people could straighten their legs all the way - I had chondromalacia patella, and finally got diagnosed and had surgery my junior/senior year of high school (both knees) and it made such a difference.
Nym, I'm sorry to hear of your friend and her daughter both having EDS. I'm sure you are an empathetic friend! There is a couple of wonderful support groups on Yahoo for EDS if your friend might be interested. They have an active message board and do lots of advocacy work. Also very sorry to hear of your experience with CP, but glad you found some relief through surgery. I guess we all have lots of diagnoses we never talk about, huh?
Wow! Very interesting that you also have hypermobile joints. I haven't found anyone else who has both conditions, either. Yes, I could do this trick or that trick. Stand on the sides of my feet/on my ankles either with my feet bent in or bent out, didn't matter. The first thing that I recognized early on was that if I would stop running too fast, my knees would bend backward and it would hurt very much.
Yes, I went through the whole "you're too young to hurt like that" or "you're too young to have arthritis". Looking back, I realize that some people may have meant that supportively (since they didn't know how to react). However, most or all of them sounded as if they didn't believe me. Part of that was tone of voice and facial expression when they told me that I was too young to know what pain was.
It is so nice to know there is at least one person out there who has had a very similar experience to mine!! Actually it seems many people on here have had similar experiences. That's a relief!
Thanks for touching base again :)
Byrd Feeder said:
Hi Holly,
I was just reading through your profile and I find it to be quite interesting that you were diagnosed with hypermobile joints. I have this, too! In fact, you are probably the first person on any arthritis message board that I have met with this diagnosis. I actually have Ehlers Danlos Syndrome. Part of the EDS gift to me is hypermobility. Yes, it hurts...BIG time. I am so sorry to hear you are dealing with this in addition to the PsA.
I remember being told as a kid that I was suffering from "growing pains." BS! There's no such thing; it doesn't hurt to grow!! But constantly stretching joints past their normal range of motion hurts like heck--not to mention the constant damage it does to the joints and surrounding connective tissue.
I suppose you also have memories of being the only kid who could do this or that trick. Wish I had known when I was a kid that I probably was hurting myself with those movements. I empathized when I read about you talking with your friends and discovering everyone didn't have the same pain as you. When we grow up with it, it's natural to presume that everyone feels it, every day, all the time. And, it's a shock to find out that isn't the case. I recall, sadly, being told that I simply could not be feeling the pains I was describing. It does a number on a young head, to say the least. Oh well, past is past. Still, it's so intriguing to meet someone with the same (or very similar) memories.
Anyway, just wanted to touch base with you again and let you know how much your profile hit home with me. And to say "welcome" again!
My boyfriend and I have tried the positive route - and I really do try to tell him if I'm feeling a little better one day. He says he always assumes I'm in pain. He also doesn't ask me how I'm doing, partly because I asked him not to. When asked, it's easy to focus on the negative instead of filtering it to say it in a positive way. Ohh, I can relate to pretty much every joint including chest :( Do you get those "stabbing" feelings between your ribs and toward the front of your chest as well? I've only developed those feelings in the past two years.
nym said:
Hi Holly! I have no idea how I missed this thread!!
We think I've had PsA all my life - I remember my ankles swelling for no reason in kindergarten - I was four. I got diagnosed last year at age 36, after years of being told it was growing pains, then it was all in my head.
My husband, to whom I've been married for 16 years, still has a difficult time understanding what it's like to live in a body that doesn't cooperate and is always in pain. It's difficult to find the balance with reminding the person you love of your pain and limitations while not complaining about it too much. I told my husband to assume I'm in pain, am having trouble moving, and am exhausted and I'll tell him if it's otherwise. It's a lot more fun to say, "My feet are doing so much better today!" one day, than "my feet are killing me" 32 days. I have PsA in just about every joint at this point, including my chest, so it's all fun and games here! :)
Byrd - I have a friend with EDS. Her daughter has it as well. I don't, but remember being shocked that people could straighten their legs all the way - I had chondromalacia patella, and finally got diagnosed and had surgery my junior/senior year of high school (both knees) and it made such a difference.
I actually had a stress test last year because of chest pains and shoulder pains. Heart and lungs were fine. Must be the ribs for me too. Never thought of that! Of course, last year the flare was not full blown, and I was yet to be diagnosed. I have hypermobile joints too. I'd always been more flexible than the avg person - still am 'cept the pain keeps the range of motion limited. Knees would pop out of place, hips would pop and freak people out.
Back in ancient times, when I was a Cheerleader, several girls on the squad were what was then termed 'double jointed', they were amazing! Even at that tender age, I had stiff SI joints, hardest thing for me was the flip, just did not have the flexiblilty there!
Now I hope I just remain flexible enough to walk around, even if it is a hobble, and reach my feet to cut my toenails! LOL!