PMR and Emotions and Family

Posted by mopo @mopo, Nov 17, 2021

Good morning! I'm so grateful for this forum. I've had PMR for 3 months now. I'm on an extended dose of 20 mg. of prednisone. I'm so thankful for that. I would like to address the emotional end of this journey and the part that our family plays. There are times that I just get tears and feel exhausted (malaise). I'm not sure if my family really have read up on PMR. I have given them the information. They are quite sympathetic but I would imagine that when they see me in the afternoon and I'm able to raise my arms to hug them that they wonder about it when I tell them that I can't move my arms in the morning. Maybe some of you will agree that you really don't think about the 'years' it might take to remission but day to day really try to keep a 'stiff upper lip' and push yourself through it. Keep smiling and do what you can. The tears/tiredness don't last a long period of time but I hadn't read in this forum anyone talk about it. I believe I need to be more honest and verbal about it when I'm normally taking care of everyone and pretending that things are just fine when they are not. Thank you and I hope you all reach remission very soon. Take care.

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) group.

I know what you are saying. I was diagnosed in June and it has been a rollercoaster. You feel so awful and it does bring you to tears. All you want is relief. This site helps a lot You aren’t alone 🌺

REPLY

Hi @mopo, Thanks for starting this discussion. I think this really goes along with any chronic illness. It's hard to share how bad you feel sometimes and let's face it, who wants to be a complainer. It can be hard to break down those barriers and have open discussions on the toll a condition like PMR, RA, Neuropathy and pretty much any condition that leaves you in chronic pain. I was fortunate to have a wife that was with me from the beginning of my journey with PMR and talking with the rheumatologist who explained it so well to us. He also helped me through my tapering process for which I am grateful for his suggestions and support. My PMR is currently in remission but it always looms out there and reminds me to live each day the best I can. Here's an article that I thought was really good for sharing with family.

My new normal: A patient's perspective on polymyalgia rheumatica: https://onlinelibrary.wiley.com/doi/full/10.1002/imed.1010

You might want to check out another discussion that is not specific for PMR but is on topic:
— Don't Want To Be a Complainer: https://connect.mayoclinic.org/discussion/dont-want-to-be-a-complainer/

Along with the discussion above, there is an upcoming webinar hosted by the Foundation for Peripheral Neuropathy that you and others might find helpful.

FPN Webinar: How to Talk to Anybody When You Have a Disability or Chronic Illness
Wed, Dec 8, 2021 2:00 PM – 3:00 PM CST
———————————————–
An EmBRACE It Workshop by Estela Lugo & Lainie Ishiba

Have you ever felt misunderstood because of your disability?

Has miscommunication ever interfered in your relationships?

We all know that communication is an essential part of our relationships and well being. Expressing ourselves and asking for what we need in general can be difficult for many people, but for those of us with disabilities, expressing our unique wants and needs, in a way that feels good for everyone, can be extra challenging.

In this interactive workshop, participants will learn techniques and tools for healthy and productive communication in everyday situations. Participants will leave this workshop with practical tools they can use to confidently talk about their condition and ask for help when they need it.

We hope you can join us live as this special workshop is being offered at no cost to FPN attendees and will not be recorded for future viewing.
——————————————-
Register for the webinar: https://register.gotowebinar.com/register/4559936822934676493

REPLY
@johnbishop

Hi @mopo, Thanks for starting this discussion. I think this really goes along with any chronic illness. It's hard to share how bad you feel sometimes and let's face it, who wants to be a complainer. It can be hard to break down those barriers and have open discussions on the toll a condition like PMR, RA, Neuropathy and pretty much any condition that leaves you in chronic pain. I was fortunate to have a wife that was with me from the beginning of my journey with PMR and talking with the rheumatologist who explained it so well to us. He also helped me through my tapering process for which I am grateful for his suggestions and support. My PMR is currently in remission but it always looms out there and reminds me to live each day the best I can. Here's an article that I thought was really good for sharing with family.

My new normal: A patient's perspective on polymyalgia rheumatica: https://onlinelibrary.wiley.com/doi/full/10.1002/imed.1010

You might want to check out another discussion that is not specific for PMR but is on topic:
— Don't Want To Be a Complainer: https://connect.mayoclinic.org/discussion/dont-want-to-be-a-complainer/

Along with the discussion above, there is an upcoming webinar hosted by the Foundation for Peripheral Neuropathy that you and others might find helpful.

FPN Webinar: How to Talk to Anybody When You Have a Disability or Chronic Illness
Wed, Dec 8, 2021 2:00 PM – 3:00 PM CST
———————————————–
An EmBRACE It Workshop by Estela Lugo & Lainie Ishiba

Have you ever felt misunderstood because of your disability?

Has miscommunication ever interfered in your relationships?

We all know that communication is an essential part of our relationships and well being. Expressing ourselves and asking for what we need in general can be difficult for many people, but for those of us with disabilities, expressing our unique wants and needs, in a way that feels good for everyone, can be extra challenging.

In this interactive workshop, participants will learn techniques and tools for healthy and productive communication in everyday situations. Participants will leave this workshop with practical tools they can use to confidently talk about their condition and ask for help when they need it.

We hope you can join us live as this special workshop is being offered at no cost to FPN attendees and will not be recorded for future viewing.
——————————————-
Register for the webinar: https://register.gotowebinar.com/register/4559936822934676493

Jump to this post

John,
I agree! Thank you for your thoughts and suggestions. I will definitely check them out. Take care!! Mopo

REPLY
@johnbishop

Hi @mopo, Thanks for starting this discussion. I think this really goes along with any chronic illness. It's hard to share how bad you feel sometimes and let's face it, who wants to be a complainer. It can be hard to break down those barriers and have open discussions on the toll a condition like PMR, RA, Neuropathy and pretty much any condition that leaves you in chronic pain. I was fortunate to have a wife that was with me from the beginning of my journey with PMR and talking with the rheumatologist who explained it so well to us. He also helped me through my tapering process for which I am grateful for his suggestions and support. My PMR is currently in remission but it always looms out there and reminds me to live each day the best I can. Here's an article that I thought was really good for sharing with family.

My new normal: A patient's perspective on polymyalgia rheumatica: https://onlinelibrary.wiley.com/doi/full/10.1002/imed.1010

You might want to check out another discussion that is not specific for PMR but is on topic:
— Don't Want To Be a Complainer: https://connect.mayoclinic.org/discussion/dont-want-to-be-a-complainer/

Along with the discussion above, there is an upcoming webinar hosted by the Foundation for Peripheral Neuropathy that you and others might find helpful.

FPN Webinar: How to Talk to Anybody When You Have a Disability or Chronic Illness
Wed, Dec 8, 2021 2:00 PM – 3:00 PM CST
———————————————–
An EmBRACE It Workshop by Estela Lugo & Lainie Ishiba

Have you ever felt misunderstood because of your disability?

Has miscommunication ever interfered in your relationships?

We all know that communication is an essential part of our relationships and well being. Expressing ourselves and asking for what we need in general can be difficult for many people, but for those of us with disabilities, expressing our unique wants and needs, in a way that feels good for everyone, can be extra challenging.

In this interactive workshop, participants will learn techniques and tools for healthy and productive communication in everyday situations. Participants will leave this workshop with practical tools they can use to confidently talk about their condition and ask for help when they need it.

We hope you can join us live as this special workshop is being offered at no cost to FPN attendees and will not be recorded for future viewing.
——————————————-
Register for the webinar: https://register.gotowebinar.com/register/4559936822934676493

Jump to this post

Thank you so much for the link to the “New Normal” journal. It captures exactly what I have been feeling after being diagnosed with PMR after 5 years of trying to figure out what was wrong with me. Only when my youngest daughter was diagnosed with lupus did I find a rheumatologist who would diagnose me. I always knew steroids helped. Each time I got a steroid shot in My arthritic knees I felt like a new person for a while. I once said I would like a steroid pump installed. I know all the dangers and if I didn’t everyone is quick to warn you, but I have two small granddaughters and I would love to be active with them. Since starting on 10 mg a month ago, I finally have a little bit of energy and hope.

REPLY

Hi @mopo thank you for starting this discussion. I'm wondering if you are in a caregiving role to family members where the expectations are that you do things for them. Do they see you in the morning when you can't move? Is that still the case, even on 20 mg of prednisone? I was not diagnosed for a year. The pain of my PMR never abated until very late at night, around 9:00 pm, and then only slightly. I mainly suffered in silence and pared chores down to the bare minimum. My husband has Alzheimer's. When I told him I was in pain, he didn't get it or forgot quickly. Along with the severe pain and malaise, depression and anorexia go hand in hand with PMR. I felt my life had gotten very small and was basically over, but I suffered in silence, "stiff upper lip" and all that. The correct diagnosis and treatment changed things. Prior to diagnosis, my PMR symptoms were gone, but I developed Giant Cell Arteritis.I think others often perceive that people with "invisible" or "hidden" disabilities are malingering, and other than being vocal and assertive about one's limitations, I'm not sure what can be done to counteract that misperception. More attempts at dialogue, maybe, or taking someone who can talk to the rest of the family to your next doctor's appointment to have her/him explain it? Also PMR has specific genetic markers. My maternal aunt had it. If your family members understand they could be at risk for PMR as they age, they might be more interested in what you are experiencing. I wish you the best.

REPLY
@johnbishop

Hi @mopo, Thanks for starting this discussion. I think this really goes along with any chronic illness. It's hard to share how bad you feel sometimes and let's face it, who wants to be a complainer. It can be hard to break down those barriers and have open discussions on the toll a condition like PMR, RA, Neuropathy and pretty much any condition that leaves you in chronic pain. I was fortunate to have a wife that was with me from the beginning of my journey with PMR and talking with the rheumatologist who explained it so well to us. He also helped me through my tapering process for which I am grateful for his suggestions and support. My PMR is currently in remission but it always looms out there and reminds me to live each day the best I can. Here's an article that I thought was really good for sharing with family.

My new normal: A patient's perspective on polymyalgia rheumatica: https://onlinelibrary.wiley.com/doi/full/10.1002/imed.1010

You might want to check out another discussion that is not specific for PMR but is on topic:
— Don't Want To Be a Complainer: https://connect.mayoclinic.org/discussion/dont-want-to-be-a-complainer/

Along with the discussion above, there is an upcoming webinar hosted by the Foundation for Peripheral Neuropathy that you and others might find helpful.

FPN Webinar: How to Talk to Anybody When You Have a Disability or Chronic Illness
Wed, Dec 8, 2021 2:00 PM – 3:00 PM CST
———————————————–
An EmBRACE It Workshop by Estela Lugo & Lainie Ishiba

Have you ever felt misunderstood because of your disability?

Has miscommunication ever interfered in your relationships?

We all know that communication is an essential part of our relationships and well being. Expressing ourselves and asking for what we need in general can be difficult for many people, but for those of us with disabilities, expressing our unique wants and needs, in a way that feels good for everyone, can be extra challenging.

In this interactive workshop, participants will learn techniques and tools for healthy and productive communication in everyday situations. Participants will leave this workshop with practical tools they can use to confidently talk about their condition and ask for help when they need it.

We hope you can join us live as this special workshop is being offered at no cost to FPN attendees and will not be recorded for future viewing.
——————————————-
Register for the webinar: https://register.gotowebinar.com/register/4559936822934676493

Jump to this post

@johnbishop thank you for those articles. They are helpful and informative!

REPLY

I’m just beginning my PMR journey – 2nd day with 15mg prednisone and the pain is significantly reduced. SO thankful! But I am just now beginning to own my limitations in regard to my usual doing-for-others (family and friends). It is taking conscious effort to stop requiring myself to fulfill my old over-functioning role and adopt a more balanced view of what others can do for themselves and what is comfortable for me. I’m also learning to accept that there may be a bit of natural pushback, and I’ll need to not be drawn back into pushing myself to fulfill expectations, even my own well-worn ones from the old ‘normal’ days. Thanks for starting this discussion — the emotional side is really quite important.

REPLY
@carol75

I know what you are saying. I was diagnosed in June and it has been a rollercoaster. You feel so awful and it does bring you to tears. All you want is relief. This site helps a lot You aren’t alone 🌺

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Hello @carol75
Thank you for this and YOU are not alone as well. One day at a time. You are important to this forum and I hope to chat again soon. Take care!

REPLY
@pokey

I’m just beginning my PMR journey – 2nd day with 15mg prednisone and the pain is significantly reduced. SO thankful! But I am just now beginning to own my limitations in regard to my usual doing-for-others (family and friends). It is taking conscious effort to stop requiring myself to fulfill my old over-functioning role and adopt a more balanced view of what others can do for themselves and what is comfortable for me. I’m also learning to accept that there may be a bit of natural pushback, and I’ll need to not be drawn back into pushing myself to fulfill expectations, even my own well-worn ones from the old ‘normal’ days. Thanks for starting this discussion — the emotional side is really quite important.

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This is well said. With Thanksgiving coming up, what is expected of me is not going to be what I’m able to do easily. It’s all going to be very interesting. Your post puts it in perspective. Thank you

REPLY
@pokey

I’m just beginning my PMR journey – 2nd day with 15mg prednisone and the pain is significantly reduced. SO thankful! But I am just now beginning to own my limitations in regard to my usual doing-for-others (family and friends). It is taking conscious effort to stop requiring myself to fulfill my old over-functioning role and adopt a more balanced view of what others can do for themselves and what is comfortable for me. I’m also learning to accept that there may be a bit of natural pushback, and I’ll need to not be drawn back into pushing myself to fulfill expectations, even my own well-worn ones from the old ‘normal’ days. Thanks for starting this discussion — the emotional side is really quite important.

Jump to this post

@pokey . Hello Pokey. My doctor years ago told me I had to learn to say the word "No". He was very strict about it and would always quiz me at our next appointment as to my success or failure. I was like you are – a rampant caregiver! With practice, plus your new limitations, you'll eventually be rewarded with feelng comfortable saying "No" more often! Good luck, and take good care of yourself. Laurie

REPLY
@artist01

@pokey . Hello Pokey. My doctor years ago told me I had to learn to say the word "No". He was very strict about it and would always quiz me at our next appointment as to my success or failure. I was like you are – a rampant caregiver! With practice, plus your new limitations, you'll eventually be rewarded with feelng comfortable saying "No" more often! Good luck, and take good care of yourself. Laurie

Jump to this post

Thanks artist01, for your encouragement. I have a therapist I see 2 a month who is working with me on recognizing my tendency to “over function”. Since it has always seemed “a given” to step in and do, it is taking time and conscious reflection to change. The knowledge that my old “givens”can actually NOT be helping others in the long run, is taking time to identify. To think there is actually a reward in the future for all this sifting and working toward change is a lovely thing to share — a small gem in my pocket. Thanks so much!
Pokey

REPLY

@pokey. You're on the right track with your doctor, Pokey! Keep practicing. Warmest regards, Laurie

REPLY
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