I'm fortunate - I don't have PsA really badly but I'm also young enough that I don't expect to be hobbling around every day. I can't remember the last time I had a pain free day. But I do remember sometime last year, when I was first on the NSAIDs before I had to come off them for upsetting my stomach, thinking something was different one morning and then realising that the difference was I wasn't limping out of bed and to the bathroom.
I've been off the methotrexate now for nearly 2 months and in my day to day health feel much better. But I'm moving house and I'm sure the stress has made things worse. This last week - 10 days I've had constant, severe pain in my right heel. It is also very swollen. My rheumatologist has agreed to try me on anti-TNF, probably adalimumab, provided I pass the criteria at the end of this month.
Nothing is especially bad or difficult at the moment. It's just I feel so tired and stressed that the full force of how debilitating constant pain can be has hit me. I have friends who seem to think I maybe make a fuss out of nothing. Last week they suspected I had recurrent glandular fever owing to my suppressed immune system and a friend joked 'Why don't you just go to the doctor more?' as though really I had little cause to go and was being rather indulgent.
I had to self rank my PsA on a scale of 1 (completely normal) to 5 (worst it could be). I gave myself a tentative 3 for these last few weeks and was surprised that the rheumatologist agreed. In many ways I'm lucky but if I'm honest I don't think I've appreciated, and certainly few others close to me have, just quite how resilient I've been up until now. Being in pain ALWAYS is a drain. Being 29 and limping everywhere and wondering when you'll next be struck and left to bed for days sucks. It's especially hard when you look ok, you look well and friends seem to treat you as though actually you could probably just get on with it.
I read this and see myself (currently typing with one hand from my bed since the right hand doesn't want to work this morning and my hips are too painful for me to move yet). I can't remember the last time I felt 'good'. I hobble around at work, I have to hold my pens weird to compensate for which fingers want to work when, I can't wear my cute summer sandals cause of my feet, haven't been able to style my hair properly in days. Hopefully the new medications my doc wants to put me on will help, currently on Humira, prednisone and meloxicam, going to be switching to Remicade.
It's hard being on the younger side and having this,(It's hard at all ages but you know what I mean) I'm 29 as well, my friends think I have some weird 'old person' disease but it's just hard for them to understand it. Usually when I wake up is the worst and it goes on for a few hours staying at that level and then certain joints will 'loosen' but not enough! lol. Yesterday was the first day in a week I didn't take a nap, I wanted to because I was exhausted but I had to get some other stuff done.
It's a struggle though, looking okay on the outside while a battle rages within. I hope you get some relief soon and can start feeling better. :)
While PsA is not life threatening, it IS “life changing” with new changes happening every day it seems. You know that with every step. I’m sorry you are having to deal with it… I’m sorry that, like you, some days I come here to people I don’t know but who understand what chronic pain and side effects from these meds feels like. (I’m thankful, but find it a bit odd.). You sound like you are coping fairly well, but could use some support from those around you. ( And a pain free day, as you also requested, would be pretty cool, too!!)
So, let me ask those with more experience than my 2 years, how do you all help friends and family understand? How do you communicate the daily frustration without seeming like complaining? What words have you found helpful to describe a rather unknown disease?
I have a dear friend who attends doctor’s appointments with me. ( I am on the younger end, too, but is such new info, my brain is frequently fogged with meds, and it’s quite a drive to the Clev Clinic.) It helps for one person to at very least HEAR the seriousness of it for those days when I need to talk about it. She reminds me of my faith, listens, and patiently slows her steps to match mine.
Hoping for a few pain reduced days for you as we wait for wise words…
I had a pain free day about 25 years ago. New physiatrist in town talked me into spinal injections. I shoulda been suspicious when he had "deaf speech" and two hearing aids. But figured if he made it through med school and residency with that kind of handicap, he MUST be good. He wasn't. He pierced the spinal sheath giving me a complete spinal. I was pain free for all of that day and into the next. (I had to stay in the hospital and was enjoying myself so much I didn't even sleep.)
I paid for it though. He left a big enough hole that it took three days and 6 blood patch spinal injections before it plugged and I was able to get rid of the spinal headache. It wasn't all bad though. The severe headache was intermittent. In between I had a caffeine drip in one arm (I like caffiene better than my large collection of single barrel and single malt scotch - I have a commercial espresso machine in my house and more blends/roasts than Starbucks) In the other I had a continuous morphine drip. along with one of those nifty machine that you push the button for an extra jolt. After my colleagues from the law school came to vist, I even had lattes deliverd every hour so.
Okay someone asked about wisdom from an old fart. You ain't going to like it, so if you are looking for affirmation you best stop reading now. You're right we don't get the sympathy we feel we deserve because we look okay..... Some of us don't and we get more sympathy and understanding. Suz said it. its not fatal it changing. I can name off the top of my head 2 dozen or more autoimmune diseases that are worse AND more painful. And can name a lot more that are worse and people CANE see. Everybody has the right (and should) to take a place on the pity pot in the begining and a few times along the way. But beyond that IT IS NOT HELPFUL. What IS helpful is being able to share how to fight this disease and keep moving. (if you don't move you rust) The fact is some of us (okay a lot of us who have had this for a while) hear some stories and what we'd really like to say is WOW, I remember when I was like that, i wish I could have a day like that...... You want less pain? MOVE. You want more pain don't move. You want less "depression" LIVE. You want more depression stay in bed waiting for the morning miracle that will get you going (I suggest the smoke alarm or a tornado siren) You want real help from a board? relish the success's of others and figure out how to add them in your life. We just had two return from an amazing vacation. Both weren't even sure if it could happen but sought out advice on how to do it. They weren't looking for a silver bullet for the disease, but packing, ironing, traveling etc. Despite their fears and concerns they made the changes and adapted to make it really turn out to be a GREAT experience/
Here (I don't know how it is in the UK) people are consistently in their own world called "ME" Its impossible to enter their world and rarley will they leave their to visit yours. Even if they do they will likely be lost. This is Grandpa talk..... None of us like to be judged, correct? Drives us nuts, sometime so much so that it diverts us from what we are doing. Heres the problem when we get concerned about it, we are doing the exact same thing. We are judging our friends family etc, It can't help the situation and likley will hurt. Suddenly we start to give in the the "pressure" and it really is like the "ugly duckling" trying to please the "mean girls" in High school. It will never happen. The ONLY solution is to tell them in a kind way "piss off" (I think is what they say in the UK) The second thing is - owe NOBODY an explanation. (immediate family, of course, is different) The third thing is to learn to say firmly with out guilt (or explanation) NO, I can't - today, I've got a flare going (whether you do or not)
The last thing is the toughest. Its your disease. Its an auto-immune disease which means NO ONE has quite what you do. You can drive your self crackers comparing symptoms and treatments...... You can get support, help advice, commiseration and joy for others - that is pretty good stuff. The other part of that is that you are in a new phase of life. I don't for the most part have the same friends I had 10 years ago. I doubt in 10 more years I'll have the same friends I do now. The constant with this disease is change, there is no way out of it. Despite those who say thats the constant in life, its not there is some wiggle room.
But, I cant help but feel a little "brocken" once and a while, especially when I'm looking for a job in a tough economy, or I see people having fun in the sun, or playing sports. I truly believe that we all feel down once and a while, and that for some it lasts longer than others. It all depends on your situation. Having people judge you or misunderstand you, or be indifferent is really not the issue, that's just an excuse. The issue is that we sometimes feel "brocken" and no use to anyone. Like I mentioned in my profile, please don't take the high moral ground, I know I'm luckier than so many others, but its just not the luck I was looking for. We have to stay strong, but we must once and a while be true to our selfishness, to the dark side of our human nature, and wish that we didn't have this disease.
I know this sound terrible, and we can never stay in that dark place for too long as it will destroy us, but in the slight crack of our strength, and our compassion for others, that place awaits. I believe this is why we are here on this site. We need each other on those bad days, and we help each other on our good days.
Thats right, but a kick in the ass to get out of that place from somebody who has been there is more helpful than your next door neighbor... It becomes easier in time truly it does.
I have bad PsA at the moment… Due to stopping meds . All the pain everwhere and toes on my feet been swelling up bad…has made it tuff to get around now. Need to get back on the meds sooner than later. Thought i could do without em but
i now know i need something to help with all this pain and back to life.
Good discussion! I have question, when 1 of your fingers “sausages” does it ever go back to normal? I woke one morning and there it was . It’s been 3 months now and I can’t make a fist! I’m new here and learning from all of you. I have seen a Derm for scalp psoriasis, but have a 6 month wait to see a Rhuemy!
Hi - TNT Lamb, I do love you :) But for me, I find that the occasional pity party is just a wonderful swim in lake "me", and quite necessary. Just releasing all that built up anger/fear/sadness in a wave of "poor me" does the trick. I can't get out of it - until I get into it really good for a day or so - and then it's gone on its own (without the kick in the pants).
Usually, I try to enjoy each day for what it brings. Which is a little different from fighting through the pain/etc, even though it looks the same outside. So if it's that rare energy-full, pain-free day, I take full pleasure in zipping around. If it's the usual run-down, owie day, there is a different experience in walking slowly to see the view or the store windows or the ants on the ground. If it's a pity party day, there's nothing like a good cry or thinking mean thoughts for a long while until you just feel silly about it.
I think this is what Michael66 just said, oops, he said it more eloquently.
Michelle- I had my first 'sausage' finger for a good 2 months, got some cortisone injections and it got better. I have to go get more injections Thursday because my index and thumb have swollen again but with the injections it seems to help. My toe has unfortunately never gone down. It's not solid bone damage but luckily it's one of my smaller toes and isn't painful or bothersome. As far as seeing the Rheum doc, call and see if you can talk to their nurse or assistant and tell them the trouble and amount of pain you are having. Mine was so severe to start with that I went from having an appointment 2 months away to getting one 3 weeks away. I had no other choice and luckily they made it work. I hope you get to feeling better :)
ps - to the question about how to tell friends about the ups-and-downs. One trick is to let yourself look not-so-hot on the days you feel not-so-hot. If I skip the makeup, my friends say, 'Oh, you look tired, what's wrong?' And on the days when I want everyone to say how well I'm doing, I put on my eyeshadow & someone notices.
Or - find a funny way of saying how you feel? I'll say - today is a pretty good day - my knee feels like it was bashed with just a rubber mallet, not a sledgehammer like yesterday, yahoo! (Sometimes I just can't be funny, sometimes all I can say is, "I'm sick & tired of being sick & tired." People seem to get that too. But maybe I am surrounded by very understanding people.)
tnt, I could not agree more! I would also like to add how much I appreciate your realistic attitude and positive outlook. I got stuck in a bit of an emotional rut when I first found out exactly what I was going to have to do by way of medication when I was first properly diagnosed. The thought of all those freaking chemicals in my body, ugh... but then I stepped outside myself and realized this is the hand I was dealt, and if it doesn't kill me it will make me stronger. So, like Forest Gump, I started running... something the orthopedic surgeon said I would never do... go ahead, tell me something else I can't do (I thought)
Everyday we wake up with choices, the pain we feel in our bodies does not have to take away the life we have in our hearts and minds.
tntlamb said:
What IS helpful is being able to share how to fight this disease and keep moving. (if you don't move you rust) The fact is some of us (okay a lot of us who have had this for a while) hear some stories and what we'd really like to say is WOW, I remember when I was like that, i wish I could have a day like that...... You want less pain? MOVE. You want more pain don't move. You want less "depression" LIVE. You want more depression stay in bed waiting for the morning miracle that will get you going
Couldn't agree more Lamb...Also Michael, I think we all have those days when we just can't pull out of the funk this stuff puts us in. Then I am reminded of someone who was truly in pain and the only way out was her passing onto a greater place Tues morning...My aunt was on thyroid meds for years that turned her bones so brittle she dealt with multiple spinal fractures; fractured both hips; fractured femur and all this was within the past year. As I tell my husband who has a really really bad heart, "if you overdo it, it can kill you...if I overdo it I just have more pain". To me that is ok, I can take a pain pill, he can't.
Please do not think that I am trying to make light of how you are feeliing. I have been there more times than I can count...but I also know that I have to make the best of each day that I am given and if God has decided that my days are to deal with pain then I guess He thinks I can handle it better than someone else would be able to. My strength comes from Him.
Michael I hope you are able to find the relief you so need and that comes in different ways for each of us. Continue to read the posts from here, there are some fantastic people on this forum and Lamb is just one of them. He is so insightful and full of knowledge! Also, don't ever get your feelings hurt by how people answer here, we are all in the same boat and all are striving for the same goal, just taking many different routes to get there.
Hiya , i think we all know EXACTLY how you feel :( ... i got diagnosed with my PA at 22 after the birth of my second baby . It was brought on by the stress of being a single parent and from that day my life changed! its been so hard over the last 12 years but you learn to cope ive found , last year i came of Methotrexate to try for a baby with my new husband and explained to him how bad my bones might get . We were expecting the worst but for the first year my bones were managable on sulfasalazine . I suffered 2 miscarriages the first in October 2011 at 7 weeks pregnant and the lst one in April 2012 at 17 weeks pregnant. My bones flared up like i could never imagine after the last miscarriage and have now been put on sulfasalazine , hydroxychloriquin and prednisolone as we're still hoping to try again once they settle down. These past few months have been absolutely dreadful. My poor hubby works full time then has to help me to do even the most mundane things. I still try to do as much as i can and im lucky that my older children (aged 12 and 13) help out lots while im ill. I saw the rheumatologist last week who added the hydroxychloriquin and told me to ring her back this week so im hoping she'll be able to help me control this last flare before we try again. Its very hard especially when youre younger but you just seem to find ways to cope :) hope you are feeling better soon
Hiya Michelle . My middle fingers on both hands have gone 'claw' lol and never returned although about 7 years ago they did plaster them to straighten them a little . They used to be stuck at a right angle and now they are justa little bent . This recent flare has started to bend both index fingers , both ring fingers and my little finger on my right hand .....the only thing im upset at is i cant get my wedding ring on now :( hoping when it settles down i can get them straightened out too x Michelle said:
Good discussion! I have question, when 1 of your fingers "sausages" does it ever go back to normal? I woke one morning and there it was . It's been 3 months now and I can't make a fist! I'm new here and learning from all of you. I have seen a Derm for scalp psoriasis, but have a 6 month wait to see a Rhuemy!
I never said I have never said that I haven't spent a day curled up in a ball in bed wandering why I should even bother getting up. The secret is to do it infrequently enough and convincingly enought that everyone around thinke you can't unroll.................
RB said:
Hi - TNT Lamb, I do love you :) But for me, I find that the occasional pity party is just a wonderful swim in lake "me", and quite necessary. Just releasing all that built up anger/fear/sadness in a wave of "poor me" does the trick. I can't get out of it - until I get into it really good for a day or so - and then it's gone on its own (without the kick in the pants).
Usually, I try to enjoy each day for what it brings. Which is a little different from fighting through the pain/etc, even though it looks the same outside. So if it's that rare energy-full, pain-free day, I take full pleasure in zipping around. If it's the usual run-down, owie day, there is a different experience in walking slowly to see the view or the store windows or the ants on the ground. If it's a pity party day, there's nothing like a good cry or thinking mean thoughts for a long while until you just feel silly about it.
I think this is what Michael66 just said, oops, he said it more eloquently.
wow, that was great. You explained it very well. Very good insight. I'm a newbie, just since November, but so far what you say has been true. Pitty party at the beginning, then time to move on and accept your new stage in life.
Joel
tntlamb said:
Here (I don't know how it is in the UK) people are consistently in their own world called "ME" Its impossible to enter their world and rarley will they leave their to visit yours. Even if they do they will likely be lost. This is Grandpa talk..... None of us like to be judged, correct? Drives us nuts, sometime so much so that it diverts us from what we are doing. Heres the problem when we get concerned about it, we are doing the exact same thing. We are judging our friends family etc, It can't help the situation and likley will hurt. Suddenly we start to give in the the "pressure" and it really is like the "ugly duckling" trying to please the "mean girls" in High school. It will never happen. The ONLY solution is to tell them in a kind way "piss off" (I think is what they say in the UK) The second thing is - owe NOBODY an explanation. (immediate family, of course, is different) The third thing is to learn to say firmly with out guilt (or explanation) NO, I can't - today, I've got a flare going (whether you do or not)
The last thing is the toughest. Its your disease. Its an auto-immune disease which means NO ONE has quite what you do. You can drive your self crackers comparing symptoms and treatments...... You can get support, help advice, commiseration and joy for others - that is pretty good stuff. The other part of that is that you are in a new phase of life. I don't for the most part have the same friends I had 10 years ago. I doubt in 10 more years I'll have the same friends I do now. The constant with this disease is change, there is no way out of it. Despite those who say thats the constant in life, its not there is some wiggle room.
Been there. There are definitely days when I have a wee little pity party. Most of the time I just move on with life. Not really much else I can say that hasn’t been said better by someone else already. Don’t lose hope; two months ago I couldn’t zip my pants without pain (some days I couldn’t at all). I rode my bike 7.5 miles to work today, I feel that much better. Keep your chin up, life will go on
