I woke up today screaming. Literally. I have never had pain like that and I have gone through 3 natural, drug-free labors. Every time I moved my leg, pain just seared through my knee and then the rest of my leg. I couldn’t walk or bear weight. It was one of the scariest things I have ever experienced. I actually had to take a sick day. I did try though. I made it down to my home office with my husband practically carrying me and shaking his head the whole way. I got the computer turned on, and tried to start, but after he heard my crying, he made me stop and stole my cables.
The doc got me on prednisone and for once, I did not argue. I have a stash, so I didn’t even need to leave the house for it. My husband has doted on me all day.
I am here because I am terrified. I haven’t heard from Hopkins yet, but the doc says he called them Wednesday and they said they would call. He suggested that I start calling too. I might get a nurse friend to call on my behalf as well, as my advocate. I keep getting platitudes from my family that the doctors will figure it out and that I’m on the wrong medications. Once I can get treated it will get better. But I am so scared that I will never get better. I have always had such faith in science. It is real and tangible, but I feel let down. After 18 months, I have such doubt. I feel like I am back where I was when this hit; wondering constantly if I have the strength to fight every day of my life. It’s exhausting.
Oh Grumpy I am so sorry you are having such troubles. I too have had days that left me wondering about the future so I feel your pain. Though during my one delivery I had 2 pain shots and 2 epidurals and still screamed all the way through it!
The last time I could not walk for a day I could pin point an activity I had done the day before that may have caused it. I was able to figure out later that I had hurt a ligament or tendon and caused bursitis. It did resolve eventually. I have been working with a physical therapist to figure out what worked for me and what doesn't. There has been a lot of trial and error but deepening the stretch not reps works for me. I have been working at home to figure out ways to do my chores and hobbies in ways that don't leave me liming or unable to use a hand. I have also changed my biologic a couple of times and my mtx dose in trying to find what makes me as mobile as possible for as long as possible.
I am not saying what works for me will work for you. But I do know this disease is nothing if not surprising. The commonality we all seem to share is amount of time and energy we have to use to constantly re-asses what works and what doesn't. I am no longer a ballerina but I have to be a mental ballerina now to deal with PsA!
I will keep you in my thoughts and prayers. Take a deep cleansing breath and accept all the help offered and sick days. You will figure this out and the seas will smooth out again eventually. <3
Sorry to hear Grumpycat :-( Sending you strength and healing thoughts. You're strong and you will fight though this. I agree with your family, if you are still having pain like this....then the treatment is not working. I can relate and it is scary.
Take what you need to get through this pain. I use to fight it but after many days with flares that left me hardly functioning( pain to the point I was ready to pass out) I started treating my disease because I had no choice, I was afraid and was in more pain and having more flares then ever and I was exhausted, it was out of control.
It's more manageable with the current treatment however I'm still having daily pain and a lot of flares....the last flare I had was almost as brutal as post meds. I've taken prednisone in the past, had steroid injections and used pain relievers.
I also keep some things around in case I flare, due to living on a small Island and no medical facilities from Friday to Monday. Flares like that absolutely add fear.....keep strong, fight the fight and keep the faith.
I hope you find some relief and wishing you brighter days ahead (((Hugs)))
The more pain I'm in the quieter I get. Should have seen how thrilled labor nurses were to have me when having my two kids. They were so happy no one was yelling at them. My husband knows that if I'm not talking I've turned completely inward and something is horribly wrong.
I'll be your sister in prednisone for the next few weeks. I hope it helps for you, and you have minimal side effects.
I’m a little short in the faith department, some of y’all know my religion, or lack there of. I always appreciate your prayers, because I know that you are thinking of me. I have strong faith in science, but it know that there are things that we just don’t know enough about. The science isn’t there yet. Someday it will be, an hopefully, that will be before the next generation has to go through this mess.
I’m a so sorry to be such a Debbie Downer right now. I hate laying this sort of stuff on you, but no one understands this fear like you guys do. I will find my strength, and my joy, and my faith again. Yesterday, just rocked me in a way that I was definitely not expecting. It changes the way you think, actually, Im pretty sure it takes away my ability to think and turns me into someone completely different.
Believe me Grumpycat I can relate. I'm seriously rethinking my whole treatment plan and the way things are going. Just had a heart to heart with my family and this is totally impacting them too.
As far as religion...I'm more spiritual then religious...however I do care and I can understand. I'm not in a happy place at this moment, positive is not even possible right now...faith...well the only thing I have is fight....and will...the will to be strong and to be here for my family the best I can and if not for them...I'm not sure what I'd have so I will keep strong and deal because this disease is not only impacting me but them too.
The pain is real and you're right...there is no cure and we can only try and do what we can to manage.. To do that we need a team of doctors who will listen and understand...I believe I have that to an extent, but my location is impacting my treatment so I will do what I need...to function...to get back to work...and to continue to do what I can to contribute for as long as I can.. My only hope is like you...there is something that will help our younger generation.
I think I am more spiritual than religious also. I do pray and I believe in a higher power. I believe the higher power can be many things to many people; even science. I came to a turning point in my dealing with this disease when I learned to accept it. You may have all ready experienced this Grumpy but it may be news for some. I have been fiercely independent and a fighter all my life, a long story for another time. But when I was able to wake up every day and say, "ok I am going to have pain every day and immobility issues every day. Let's see what I can and want to do." And yes sometimes it is go back to bed but not as often as you would think. I have tried many med combinations and am ok with the thought I will never be where I was before. But how do I embrace the new abilities. I can still dance, in warm water at the pool when no one is looking. I can still clean, cook and be creative in 20 minute increments. I take my meds and do my PT every day. But it is changing and I have had to learn to deal with that change not fight it.
I am so sorry to hear you are so frightened and in such intense pain. It is such a challenge to try to stay brave for our own self esteem( depression battles) and spouses when we feel like we are dying inside and are so frightened. Science is real and tangible but like all else that is real it has it's own set of issues. Science is slow and back pedaling feels wrong somehow. But have faith that it happens in every person who suffers a disease that causes such intense bouts of pain.
You are a fighter - you proved it by being in the ring for eighteen months and not giving up your fight! Hope this day finds sunshine in your part of the world :) and you feeling better in many ways.
Jeesh Grumpy--that totally sucks. I'm so sorry you've been in such terrible pain. I'm glad you have a husband who uses his judgment in situations where you have none. My GF does the same thing for me. When I'm in pain she gets to take over and tell me what to do because my brain stops being able to fully process. The teenie tiny alligator brain that takes over when I'm in pain does not do very well with higher order emotional or cognitive functions.
I hope that by now your prednisone dose is lending a hand and getting your swelling and pain to a more tolerable level. Like Michael expressed furhter up the thread it is often hard to figure out what you did so you can avoid doing it again. I don't think figuring it out matters all that much in the end as there's always some BS thing that this disease seems to be able to do to make all your precautions useless. I don't think he's G-d but to me Neil DeGrasse Tyson might well be a saint so maybe you and I are of a similar denomination. Wishing you better living through chemistry,
Oh Grumpy, I’m so sorry you’re going through such a tough time. Never apologise to us for saying how you feel, this is why we are a community…to be there for each other. We all recognise the fear cos we’ve all been there, whether its the fear that grabs you in the throat in the middle of the night, or the long slow descent into the fear that sits in your gut and makes you feel sick. You will get through it, you will come out fighting cos its what you do. Its not fair and its not easy but we do it step by step everyday, we have to.
Thinking of you, you will find the strength x
I have to add, and it may make you smile, I woke up at 3 this morning shouting “Diapodesis” ??? Was discussing with a student, a couple of days ago, the process whereby WBC move from the circulation to the site of injury or infection…but do you think I could find the name of the whole process in my brain fogged mind, No of course not. But my mind found it at 3am !! Frightened the life out of my partner lol x
Hey GrumpyCat. I hope you are doing better this morning. I had the mind numbing pain you are experiencing. It happened before being diagnosed with PsA. I was walking when I heard and felt a pop in the lower spine and then I wasn't walking. I was screaming in pain on the sidewalk, by myself, in front of my house. I managed to get myself back in the house. To make this long story short, the Doc did an MRI. L4 and L5 were touching the nerve bundle at the base of my spine. I then had Prednisone therapy and no doing anything but sitting and walking for 3 months. That was the first time my children became my arms and legs. It was also the first time they had Hamburger Helper. :) Tai Chi for me tomorrow. I will send out a beam of healing light to you and to everyone else.
love NdGT… One of my faves… Thanks for putting a smile on my face.
janeatiu said:
Jeesh Grumpy–that totally sucks. I’m so sorry you’ve been in such terrible pain. I’m glad you have a husband who uses his judgment in situations where you have none. My GF does the same thing for me. When I’m in pain she gets to take over and tell me what to do because my brain stops being able to fully process. The teenie tiny alligator brain that takes over when I’m in pain does not do very well with higher order emotional or cognitive functions.
I hope that by now your prednisone dose is lending a hand and getting your swelling and pain to a more tolerable level. Like Michael expressed furhter up the thread it is often hard to figure out what you did so you can avoid doing it again. I don’t think figuring it out matters all that much in the end as there’s always some BS thing that this disease seems to be able to do to make all your precautions useless. I don’t think he’s G-d but to me Neil DeGrasse Tyson might well be a saint so maybe you and I are of a similar denomination. Wishing you better living through chemistry,
I was supposed to stop the prednisone today, but when I woke up I realized that that was absolutely not going to work. I buckled and took another 20 mg today. I'll try 10 tomorrow and see what happens. I guess it's time for another phone call to the rheumatologist. It's so tempting just to keep taking it because it makes me feel so normal, but I know how bad it is for me and have already started to have G.I. side effects.
I'm in the same boat right now. I'm still on 20 mg, and need to go down, but when I go to 15 I can't move my hands. My doc still thinks 20 mgs is low for my flare, but I really hate taking pred. at any level.
I'm still waiting on my new meds (Stelara) to work its way through my insurance. I'm NOT looking fwd. to going on the pred. right around the holidays / bad weather (two things that make me feel awful anyway).
GrumpyCat said:
I was supposed to stop the prednisone today, but when I woke up I realized that that was absolutely not going to work. I buckled and took another 20 mg today. I'll try 10 tomorrow and see what happens. I guess it's time for another phone call to the rheumatologist. It's so tempting just to keep taking it because it makes me feel so normal, but I know how bad it is for me and have already started to have G.I. side effects.
Why is it just when you think you have a handle on it, you start to flare out of control? I was so hoping to do the holidays with out issues but my entire right side is on fire and I can barely use my fingers. No chance of Prednisone for immediate relief because I already have a load of Kenolog in my system. I can't see the reumy until next month so the GP called in a Naproxin for me to start today.. Look out liver here it comes.( I am thankful for my new, truly understanding GP)
Not liking the look of the weather either.. No sunshine in the immediate future to help naturally so I guess I'll have to call the Derm in the next few and tell him the red spots are here! OH BOY, two days a week for light treatments. fun, fun, fun.
Sorry, guess I have a case of the steroid crankies today. I did here from social security and they have scheduled my last hearing before final determination on my disability. I hate that I am a cripple now but I have worked for forty years and I don't know what I'm supposed to do with me now. Does any one else have days when you feel like your normal self for a little while and then all of a sudden your back here in PsA land?
Hope you all are feeling less down than me today--- didn't mean to bring it, it just sort of slipped out.:(
Grumpy, I am so sorry to hear of your pain. I learned many years ago to take it one day at a time. Right now you all you can see is a mountain. But do not focus on the mountain. You will get over it but only if you do it in small baby steps. Each one of us are here to support you. If you take it in baby steps, you will soon see you have reached the top of that mountain. In the meantime if you need an ear, I am here for you & I will be praying for you. Many hugs (((( ))))) coming your way.
love NdGT… One of my faves… Thanks for putting a smile on my face. 