I had my first remicade infusion on Xmas eve. Apart from a migraine at the end of it which took a shorter period to go than normal I managed some hours later to go to the shops for 2 hours without back pain. My fingers which are usually very tight to bend were flexible and painfree :) Is that usualy I wonder? Course today back to old levels of pain and mobility. I rarely say anything at home about my pain but today I got a couple fo heat packs one for my back and one for my arm before settling to watch a movie with my family. My mother's comment to me was , you have pain, we build a bridge and deal with it and she laughed. Must be getting soft in my old age, either that or am soft due to pain am in, but her comment really hurt. :(
I had some relief for a very brief time after my first Remicade dose, as well. But it was fleeting. My infusion nurse said this is typical and ongoing relief takes several infusions. I hope you start to see some persistent relief soon!
We can’t pick our parents. Maybe she could build thebridge for you. Just remember you are not alone in your pain!
I must be thinking positive today - as I read your message, I thought your mom meant that they will build a bridge of support for you :)
Karen
So sorry you've been in pain. I've noticed with some people, that they don't know how to deal with other people's pain. I don't know your Mother and have absolutely no idea what she meant by that comment. Just thought I share what I've noticed in the people who know I have PsA. Some deal with directly, some ignore it and I think some just can't handle thinking of me in pain.
You know there are always people here that I understand your pain and will listen with caring ears.
You know, it’s a funny thing, how family members deal with their sadness from what we are all going thru. Case in point: I was diagnosed with PsA in 2011, and been thru many treatments, some of which had no effect, some which gave me HORRIBLE side affects, and some that were just plain frustrating. My pain has been such, that some days I am literally unable to get out of bed. This is an awful disease. My family has tried to be supportive, but used to tell people that the doctors still didn’t know what was wrong with me, I guess because they figured no one else had heard of this disease, either. Then I was diagnosed with MS this year. Despite the fact that the MS causes relatively few problems (in comparison to the PsA), they now say, almost proudly, that I have MS. Be careful what you wish for, I guess. In reality, I am blessed to have so much support, even tho it is for reasons I wish I didn’t have to deal with…I would love to be known for being a good person, fun, with a good heart. Instead, I am the daughter with MS. My point is, I think our families often don’t know HOW to deal with this, and do it their own way. At least we can come here, for support. We all know what this feels like. Hang in there, I’m glad you got some temporary relief, and hope that as time goes on, you will see more and more. Here’s to the New Year…A pain-free one!
I thought the same thing Karen.
Karen said:
I must be thinking positive today - as I read your message, I thought your mom meant that they will build a bridge of support for you :)
Karen
I was once told that the disease does not define who my daughter is.....I try everyday to keep that in mind. When she feels badly - it seems to define her for that day, or a few days. How can it not? When she feels well, it leaves for awhile and other things define her - that "spirit" is back. I want that PsA, or MS, or whatever it is that makes young people feel old and sick, to be out of the picture completely......I am praying to that end. My hope is that there have been so many advancements in therapy in the last 5 years, that the trend with continue until there is a cure.
4hooves4me said:
You know, it's a funny thing, how family members deal with their sadness from what we are all going thru. Case in point: I was diagnosed with PsA in 2011, and been thru many treatments, some of which had no effect, some which gave me HORRIBLE side affects, and some that were just plain frustrating. My pain has been such, that some days I am literally unable to get out of bed. This is an awful disease. My family has tried to be supportive, but used to tell people that the doctors still didn't know what was wrong with me, I guess because they figured no one else had heard of this disease, either. Then I was diagnosed with MS this year. Despite the fact that the MS causes relatively few problems (in comparison to the PsA), they now say, almost proudly, that I have MS. Be careful what you wish for, I guess. In reality, I am blessed to have so much support, even tho it is for reasons I wish I didn't have to deal with...I would love to be known for being a good person, fun, with a good heart. Instead, I am the daughter with MS. My point is, I think our families often don't know HOW to deal with this, and do it their own way. At least we can come here, for support. We all know what this feels like. Hang in there, I'm glad you got some temporary relief, and hope that as time goes on, you will see more and more. Here's to the New Year...A pain-free one!
Next infusion is 7th Jan - am hopeful that this will help. Thank you for replying and I hope you are doing good.
JDT said:
I had some relief for a very brief time after my first Remicade dose, as well. But it was fleeting. My infusion nurse said this is typical and ongoing relief takes several infusions. I hope you start to see some persistent relief soon!
Thank you.
walking slow said:
We can't pick our parents. Maybe she could build thebridge for you. Just remember you are not alone in your pain!
Hi Karen,
I do try hard to be as positive as I can and indeed I hide much of my pain, physical and mental, from those around me. On top of my PSA I have C-PTSD and have been working through the issues of negative parents who in their old age now live with me. Complicated as things always are for everyone. Think just once it would be nice to have that cuddle when am feeling low from unceasing pain but of course it never happens and it has gone beyond ever asking her for a hug.
Anyways on a brighter note, inspite of pain and further to come, I swam in the pool, played ball in the pool and entertained family and friends on Xmas day - it was fun and have some lovely memories captured on my camera - I love taking photos. I am grateful for that day.
I am also grateful for the support that you an dothers have shown me here - I don;t feel so alone with this when someone cares enough to reply. Am sure everyone knows how much that matters and is important. I am encouraged by your comments. Thank you
Karen said:
I must be thinking positive today - as I read your message, I thought your mom meant that they will build a bridge of support for you :)
Karen
Thank you Frances - your response makes a lot of sense.
Frances said:
So sorry you've been in pain. I've noticed with some people, that they don't know how to deal with other people's pain. I don't know your Mother and have absolutely no idea what she meant by that comment. Just thought I share what I've noticed in the people who know I have PsA. Some deal with directly, some ignore it and I think some just can't handle thinking of me in pain.
You know there are always people here that I understand your pain and will listen with caring ears.
Thank you. Am sorry to read you have had such difficulty with your family. I supose humans are such fallible creatures. We all deal with it in the best way that we can and unfortunately sometimes those differences in ways to hndle things hurt. I hope that you have some effective help and treatment for both the PSa and the MS.
Yes am glad I found this place - some really nice people here and am very grateful for that
4hooves4me said:
You know, it's a funny thing, how family members deal with their sadness from what we are all going thru. Case in point: I was diagnosed with PsA in 2011, and been thru many treatments, some of which had no effect, some which gave me HORRIBLE side affects, and some that were just plain frustrating. My pain has been such, that some days I am literally unable to get out of bed. This is an awful disease. My family has tried to be supportive, but used to tell people that the doctors still didn't know what was wrong with me, I guess because they figured no one else had heard of this disease, either. Then I was diagnosed with MS this year. Despite the fact that the MS causes relatively few problems (in comparison to the PsA), they now say, almost proudly, that I have MS. Be careful what you wish for, I guess. In reality, I am blessed to have so much support, even tho it is for reasons I wish I didn't have to deal with...I would love to be known for being a good person, fun, with a good heart. Instead, I am the daughter with MS. My point is, I think our families often don't know HOW to deal with this, and do it their own way. At least we can come here, for support. We all know what this feels like. Hang in there, I'm glad you got some temporary relief, and hope that as time goes on, you will see more and more. Here's to the New Year...A pain-free one!
Would be great to hear that there is a cure for sickness - I am right with you there Karen :)
Karen said:
I was once told that the disease does not define who my daughter is.....I try everyday to keep that in mind. When she feels badly - it seems to define her for that day, or a few days. How can it not? When she feels well, it leaves for awhile and other things define her - that "spirit" is back. I want that PsA, or MS, or whatever it is that makes young people feel old and sick, to be out of the picture completely......I am praying to that end. My hope is that there have been so many advancements in therapy in the last 5 years, that the trend with continue until there is a cure.
4hooves4me said:You know, it's a funny thing, how family members deal with their sadness from what we are all going thru. Case in point: I was diagnosed with PsA in 2011, and been thru many treatments, some of which had no effect, some which gave me HORRIBLE side affects, and some that were just plain frustrating. My pain has been such, that some days I am literally unable to get out of bed. This is an awful disease. My family has tried to be supportive, but used to tell people that the doctors still didn't know what was wrong with me, I guess because they figured no one else had heard of this disease, either. Then I was diagnosed with MS this year. Despite the fact that the MS causes relatively few problems (in comparison to the PsA), they now say, almost proudly, that I have MS. Be careful what you wish for, I guess. In reality, I am blessed to have so much support, even tho it is for reasons I wish I didn't have to deal with...I would love to be known for being a good person, fun, with a good heart. Instead, I am the daughter with MS. My point is, I think our families often don't know HOW to deal with this, and do it their own way. At least we can come here, for support. We all know what this feels like. Hang in there, I'm glad you got some temporary relief, and hope that as time goes on, you will see more and more. Here's to the New Year...A pain-free one!
About the migraine - did they give you Tylenol or anything like it before the infusion? If not, that might help next time.
Many people who don't have PsA don't know what to think about a PsA diagnosis when a loved one is diagnosed - and people who don't live with chronic pain, chronic exhaustion, and the limitations of this disease can not understand what it's like living with PsA. Nor can we expect them to. My husband has told me that his imagination just isn't that good, even after he whacked his finger with a hammer and was swearing up a storm and I said to him, "THAT!!!! That is what my pain is like ALL THE TIME." (I was off PsA meds and undergoing testing for something else at the time.) He looked at me once he regained his composure and said, "I just can't imagine that at all. How ... what ... how....?" Many people in my life assume I can pop a pain pill and feel better, when that's just not the case. So I no longer expect people to have a clue and just let their comments roll off of me. Those closest to me now, years after diagnosis, have learned to expect I'm feeling badly unless I tell them otherwise, as none of us want to concentrate on how badly I feel. :)
hello sorry about your pain I know there have been in times were I am in so much pain and if I am standing I try to to move certain ways to stretch and get a comment like what the heck you doing you look stupied this is from someone who knows what I have and cant deal with it refuses to understand yeah it hurts but I looked right at them and told them no they are the stupied one to even have asked that question.I know also there are people who don't know how to handle it it hurts to see love ones in pain so every now and then they say something like that to get you to smile I also know to that I have had comments thrown at me to get me to say I will show you that it is not going to kick my butt hope this makes sence good luck on your next infusing you have to familys always remember that your immediate one and this family here who truly understand we are blessed to have this sight take care and god bless
Hi nym, thanks for your reply. Yes they gave me something for headache before the infusion started along with something to reduce the chance of allergic reaction. It was about 3 hours in when the headache started - maybe it was the drug or maybe it was just going to happen anyways. I'll see what happens at the next one.
I have had shooting pains down my legs and arms since the infusion - again not sure if this is a side effect or whether that is because the cimzia has been ceased. I am taking lyrica and that helps am sure.
Thank you again for taking the time to reply - I appreciate it.
Happy New Year
nym said:
About the migraine - did they give you Tylenol or anything like it before the infusion? If not, that might help next time.
Many people who don't have PsA don't know what to think about a PsA diagnosis when a loved one is diagnosed - and people who don't live with chronic pain, chronic exhaustion, and the limitations of this disease can not understand what it's like living with PsA. Nor can we expect them to. My husband has told me that his imagination just isn't that good, even after he whacked his finger with a hammer and was swearing up a storm and I said to him, "THAT!!!! That is what my pain is like ALL THE TIME." (I was off PsA meds and undergoing testing for something else at the time.) He looked at me once he regained his composure and said, "I just can't imagine that at all. How ... what ... how....?" Many people in my life assume I can pop a pain pill and feel better, when that's just not the case. So I no longer expect people to have a clue and just let their comments roll off of me. Those closest to me now, years after diagnosis, have learned to expect I'm feeling badly unless I tell them otherwise, as none of us want to concentrate on how badly I feel. :)
Thanks Howdy. Seems like a good way forward.
howdydoodee said:
hello sorry about your pain I know there have been in times were I am in so much pain and if I am standing I try to to move certain ways to stretch and get a comment like what the heck you doing you look stupied this is from someone who knows what I have and cant deal with it refuses to understand yeah it hurts but I looked right at them and told them no they are the stupied one to even have asked that question.I know also there are people who don't know how to handle it it hurts to see love ones in pain so every now and then they say something like that to get you to smile I also know to that I have had comments thrown at me to get me to say I will show you that it is not going to kick my butt hope this makes sence good luck on your next infusing you have to familys always remember that your immediate one and this family here who truly understand we are blessed to have this sight take care and god bless