Hi everyone! I've been kind of disappointed in my body lately, and was thinking it would feel good to do some complaining and stop trying to pretend everything's alright.
I feel like I'm constantly pushing myself through and trying so hard to grin and bear it. I have to admit, my pain has been increasing slowly over time, and I've been feeling worn out lately--nowhere near as bad as I did before starting Enbrel, but for sure it's not as good as it was for awhile. I'm sort of convinced it's not PsA that's bothering me--it's more the damage from all those years of having it untreated that are causing me to be as slow as a snail most of the time and never experiencing even one moment a day without pain. Ok, it's just mostly my feet, which can hurt really bad, usually moreso in the evenings--and my lower back (SI and sciatic nerve--which really isn't severe, but it's always there a little and I worry it will go out again). Those little scattered aches and pains and stiffness in other places that come and go are annoying, too.
I know some of you have horrendous pain and fatigue--and damaged, disfigured joints. I'm lucky in that I have minimal disfigurement--only in a couple fingers and toes. I'm lucky, too, that, even though I'm sort of tired now, I'm not experiencing the crushing fatigue like I used to and how some of you continue to feel, despite being on meds. I'm lucky that the first biologic I took, Enbrel, has worked well for me and I have many options open to me in case Enbrel fails. I'm lucky my family seems to think I'm well and treats me as such--in a way it's a good thing because it forces me to set aside my troubles and focus on them instead (even though sometimes it would be nice to get a little sympathy from them!). And, lastly, I'm lucky I have people here who understand how I feel and are non-judgemental and are always ready to listen and encourage!
All right, here goes. The weather has been really hot and muggy, though thankfully not today. Even with my asthma under better control, it still means I’m inside unless necessary. Both of my thumbs are problematic with de quervain’s, and it’s making me a bit batty. I’m doing OT for that. Oh, and I’ve got a crazy foster kitten who just stole a whole pancake.
Stoney, asthma is the pits, too! I was diagnosed with it about 15 years ago or more, and high humidity really aggravated it. I rarely need my inhaler anymore, so that's not on my list of complaints. Sorry you have to stay inside because of it, although if you're like me, the heat and humidity exhausts you and that's not fun!
I'm pretty sure my pain gets worse when I'm stressed out, and I seem to be letting more things bother me lately. Or maybe things are bothering me more because my pain has increased.
I hate to say this, but I have a crazy kitten, I mean, 4-year old granddaughter, staying with us for a month who didn't steal my pancake but she does steal a !ot of my me time!
You have always bust a gut trying to keep going & live a full life, especially when it comes to being there for your family. And it's wonderful how much Enbrel helps you. But I completely agree that sometimes we need to just stop for a few moments and at least acknowledge that it's a struggle. For many of us that's a safety valve but it can be hard to find the words or the right frame of mind to do so.
I reckon stress lifts the lid on PsA. At the moment we're moving house which would probably be quite straightforward were it not for the professionals we're paying to 'help us' and my PsA is like a dodgy switch flicking on & off at random. We had a minor car accident too and after that I was fine some days, as usual, interspersed with some stonking PsA tantrums such as a lot more pain and not being able to walk at all for most of a day. Yet usually I can run, after a fashion! I suppose I'm now accepting that pretty much every joint in my body is affected to some extent 'cos most of them have had their say lately. I'm not too happy about that but there again that makes me realise how amazing it is that I, we, are usually so well & active.
Woe is me.....both hands wake me up in pain through the night and I'm always tired.....pain medications are too expensive so I try to use them sparingly. In the two years since diagnosis, Other than the pain---Ive had vision problems, dental problems---swallowing problems thinking problems---on and on they go--where it stops no one knows...... But, I can use my hands, still see, still have teeth and can still think--ok somewhat....and I can walk.....this morning when I woke up I was hearing a song go thru my head----and the exact words----Every little thing is gonna be all right-----and I know it will!
And I love the summer! Make today a good day---everyone! Namaste
Sybil, I don't envy you one iota about your moving! I couldn't do it! I hope your professional "help" is taking most of the burden off your hands! And a car accident to top it off! :-( No doubt your inability to walk for a day was a combo of all the above plus PsA!
I have a day here and there where my legs get really weak and I get scared I'll eventually be unable to walk--but, like you, it switches on and off and the next day it'll be better. Thank God--it gives me hope! I do wake up every morning moving very slowly and carefully, and I sit with an ice pack against my lower back for about 15 minutes before getting ready for the day. Ice is a godsend to me! I use it often.
Usually my days are good--but I'm nowhere near the active person I was 10 years ago, but you and I can be thankful this didn't slow us down when our kids were growing up--I had boundless energy back then. So now I feel guilty for complaining at all, for the people with PsA and other debilitating illness during their childhood or young adult life.....how hard it must be!
I dread the day we have to move--and this place with the big yard is getting more difficult to keep up every day. Dave would move tomorrow if I said ok--I just can't accept such a huge change.
Sybil said:
You have always bust a gut trying to keep going & live a full life, especially when it comes to being there for your family. And it's wonderful how much Enbrel helps you. But I completely agree that sometimes we need to just stop for a few moments and at least acknowledge that it's a struggle. For many of us that's a safety valve but it can be hard to find the words or the right frame of mind to do so.
I reckon stress lifts the lid on PsA. At the moment we're moving house which would probably be quite straightforward were it not for the professionals we're paying to 'help us' and my PsA is like a dodgy switch flicking on & off at random. We had a minor car accident too and after that I was fine some days, as usual, interspersed with some stonking PsA tantrums such as a lot more pain and not being able to walk at all for most of a day. Yet usually I can run, after a fashion! I suppose I'm now accepting that pretty much every joint in my body is affected to some extent 'cos most of them have had their say lately. I'm not too happy about that but there again that makes me realise how amazing it is that I, we, are usually so well & active.
Yes, Moxie, all of the above! Some of those problems--vision, dental, swallowing--probably all connected to PsA--but in my case age might have something to do with it, too, IDK. My doctor ordered a thyroid ultrasound for me but I decided not to go, just like all the other tests and visits she wants for me. My insurance is horrible and I can't afford all the doctor bills anymore. I'm just so appreciative of Enbrel Support! If it wasn't for that I'd have to give up Enbrel, too! I had an earache for weeks (it let up now) and I didn't want to pay for another doctor visit so just put up with it. My ears are ringing so bad but I know there's no hope for that, so why waste money going to ENT? Right now the psoriasis on my lower legs looks infected but I've been putting neosporin on it, hoping it'll clear up. I hate doctor appointments anyway, but it sure would be nice to not have to fork out a couple hundred $ to get some medical attention!
Anyway, yes, summer is wonderful and I won't be mad if ours here in central MN isn't horribly hot! Its been mellow so far, and great bicycling weather (need to find time for that as it is good exercise that isn't too strenuous).
Moxie said:
Woe is me.....both hands wake me up in pain through the night and I'm always tired.....pain medications are too expensive so I try to use them sparingly. In the two years since diagnosis, Other than the pain---Ive had vision problems, dental problems---swallowing problems thinking problems---on and on they go--where it stops no one knows...... But, I can use my hands, still see, still have teeth and can still think--ok somewhat....and I can walk.....this morning when I woke up I was hearing a song go thru my head----and the exact words----Every little thing is gonna be all right-----and I know it will!
And I love the summer! Make today a good day---everyone! Namaste
Oh, GrandmaJ Hugs, hugs, hugs. I have not been on here in months and months because all I ever do on here is complain. I was tired of hearing myself and I am quite sure y'all were tired of hearing me kvetch although most of you have been so very dear and supportive.
I have been through 5 biologics, methotrexate ( max dose, injectable, still taking) and I feel like I am back at square one. I had a knee replacement last September and I am finally at the point that I am not wanting my old knee back. That experience was tougher than spine surgery and birth without medication.
My old rheumy believed I have PsA based on nail changes and mild inverse psoriasis. My new rheumy is not convinced and cannot decide what the heck I have but wants me on methotrexate. I wish I could have a bilateral foot replacement. My feet are the worst! My achilles tendons are constantly inflamed and I rarely do anything that requires much walking because it's almost unbearable, even on pain meds. What good is a new knee when it hurts too much to walk around?
What can I do to make my doctor pay more attention to the hell that I am experiencing?
Should I go in and have a meltdown?
What other meds should I try? I have "flunked" Remicade, Stelara, Orencia and Humira and Plaquenil. At this point, I would say methotrexate is useless to me.
Oh, and how many of you who have been on biologics are now ANA positive?
Thanks for listening and I offer my deepest sympathies to all of you who are fighting every day <3
You don't "complain" any more than the rest of us. I think it helps to get the stuff off your chest to someone who cares. For me, it seems like nobody at home really cares or understands, so coming here is what I do and I feel other members can chose whether or not they want to read/respond to my discussions.
Sorry you're having such a hard time! What do you do when the various meds (biologics, etc.) don't work and your rheumy is stumped about if what you have is PsA. So, what does he think it is? Nail changes (lifting, pitting?), inverse, inflamed Achilles tendons, bad knees and feet--sounds like something serious and all the symptoms sure do resemble PsA troubles. Maybe a meltdown is the thing to do, IDK. Obviously you have above average pain tolerance if you handled childbirth with no medication. To me, that pain is some of the worst there is--I gauge all my pain against that! I think giving birth made me stronger and definitely gave me a higher pain tolerance.
I've gotten really accustomed to the pain I've had over the past two years since shortly after I started Enbrel. Enbrel relieved my PsA symptoms so well it was a day and night difference in how I felt. But less than 6 weeks after Enbrel my back went out--way worse than ever. Got that under control, but then my foot damage started. Seems like I've been dealing with my bad back and feet and various little pains that are so much different than what I had before I started Enbrel, but very annoying and challenging. Especially the day I wrote the discussion. I was having more than usual stress at work and with family and I think that just put me over the edge. I've been doing a lot better over the past several days--it's never perfect--I'd say my normal pain level ranges between a 3 to about 7 (on the 1 to 10 pain scale), and that day was 7+.
I hope you get some answers, mimiB!
mimiB said:
Oh, GrandmaJ Hugs, hugs, hugs. I have not been on here in months and months because all I ever do on here is complain. I was tired of hearing myself and I am quite sure y'all were tired of hearing me kvetch although most of you have been so very dear and supportive.
I have been through 5 biologics, methotrexate ( max dose, injectable, still taking) and I feel like I am back at square one. I had a knee replacement last September and I am finally at the point that I am not wanting my old knee back. That experience was tougher than spine surgery and birth without medication.
My old rheumy believed I have PsA based on nail changes and mild inverse psoriasis. My new rheumy is not convinced and cannot decide what the heck I have but wants me on methotrexate. I wish I could have a bilateral foot replacement. My feet are the worst! My achilles tendons are constantly inflamed and I rarely do anything that requires much walking because it's almost unbearable, even on pain meds. What good is a new knee when it hurts too much to walk around?
What can I do to make my doctor pay more attention to the hell that I am experiencing?
Should I go in and have a meltdown?
What other meds should I try? I have "flunked" Remicade, Stelara, Orencia and Humira and Plaquenil. At this point, I would say methotrexate is useless to me.
Oh, and how many of you who have been on biologics are now ANA positive?
Thanks for listening and I offer my deepest sympathies to all of you who are fighting every day <3
So you do like Enbrel pretty well? Maybe I will have a meltdown at the rheumy tomorrow and ask for it. She did mention it as the next step. Only I think my insurance will balk since she hasn't diagnosed me with RA or PsA. I know my new insurance insists on "step therapy". Oh, it's SO much fun :/
OMG I just noticed this--I had meant to say I chose Enbrel but I'm pretty sure I dozed off while writing that message and didn't realize I screwed up. Embarrassing! Anyway, mimiB, I hope Enbrel works well for you. ☺
Grandma J said:
I can't say enough good about Enbrel, mimiB. I was so afraid of biologics and it took a lot of coaxing for me to take one. I chosevenge
Hope you get approved and that it helps! I really feel like I can’t complain - my feet hurt but I’m doing too much - not willing to give in to it yet … The humira works a bit - don’t have constant flares anymore (thank god) but still have pain everyday - lately I wake at 2 very night with stiff and painful hands! Had an ultrasound on hands a couple of weeks ago to see if ganglions or something else - turns out to be arthritis close to tendons but overall I’m surviving - not getting worse and seeing rheumy clinic next week when I expect humira frequency to be increased
I was on Humira for awhile and it helped me some. I took it every two weeks. That waking up at night is the worst! We need our sleep. I hope taking the Humira more often will help.
Golfnut said:
Happy for you Mimib
Hope you get approved and that it helps! I really feel like I can't complain - my feet hurt but I'm doing too much - not willing to give in to it yet .... The humira works a bit - don't have constant flares anymore (thank god) but still have pain everyday - lately I wake at 2 very night with stiff and painful hands! Had an ultrasound on hands a couple of weeks ago to see if ganglions or something else - turns out to be arthritis close to tendons but overall I'm surviving - not getting worse and seeing rheumy clinic next week when I expect humira frequency to be increased
question…i am fighting the achilles tendon issues right now and was wondering if any of your doctors placed you in a walking boot to allow the food to calm down. i am on a steroid taper right now for the rheumy is switching me to Skyrinzi for he did not like how Humara was working for me. I currently was on Enbrel for 12 years and was switched to hand involvement and now switching again. curious what the doctor did to help you walk
I have put myself in a cam boot when needed and gone to see a podiatrist for temporary insoles to take the pressure off the Achilles tendon for a while. I wouldn’t have expected my rheumy to organise either for me though.
Ortho put me in a boot to give the foot some rest. Still will be using crutches to help with not straining the back and hip.
really hoping the new bio, once it is approved, with help.