Off-Topic Bewildered

primrosecat · 10-19-19, 08:15 PM

If this topic is not permitted, please delete. This is a health question. Recently I was diagnosed with polymyalgia rheumatica. I have never even heard of this. I was hoping that if anyone else has it, or knows someone who has it, they could enlighten me. I was put on steroids, but had to stop the treatment because of side effects. Now I'm just trying to cope.

bergame · 10-19-19, 10:44 PM

My husband has PMR, with his main symptoms being stiffness and aches through hips/back and shoulders, leaving him with greatly reduced range of motion. He was treated successfully with steroids, but after weaning off the steroids about a year ago, the symptoms returned. He is now seeing a rheumatologist (previous treatment plan was through his primary care doc) who sees a lot of cases of PMR and is better equipped to help him.

I’m sorry to hear that you’re dealing with this. Has your doctor suggested an alternative to steroids? Lots of stretching is one thing that my husband does pretty religiously to mitigate the stiffness. And he has continued with his running and weightlifting; despite the exercise challenges presented by PMR, he still feels better when he is active. I hope you find a path forward with the help of your doctor.

dianestjohn · 10-20-19, 07:45 AM

I know someone who has PMR, she woke up suddenly one morning and was in horrible pain, she was really frightened until she got a diagnosis. She has fully recovered I think but it took awhile. I know when she was first diagnosed she changed her diet radically to non-inflammatory food, I remember we went to lunch nd she only ate strawberries. Not sure if she was put on steroids and if so how much of the improvement was from steroids and how much from her food choices. I remember her doctor told her stress can trigger or exacerbate the symptoms - she had had several very stressful events - so part of the advice was to slow down, scale back, and, in the doctor’s word, “don’t think too much” 😀 Hope you feel better soon.

Laura S. · 10-20-19, 08:01 AM

I'm sorry you are dealing with this. I am not familiar with this condition at all but have had psoriatic arthritis for a very long time. Shortly after being diagnosed, I read something that gave me my two-step process for dealing with it:

1. Find a GOOD doctor, one that knows what they are doing.
2. Make your pain their problem.

I'd really encourage you to try to find a good doctor. It's not an easy thing sometimes. I've had good results getting referrals from other doctors.

Anyway, just some thoughts. Hang in there!

DawnP · 10-20-19, 01:33 PM

I'm sorry to hear about your news.

I highly recommend going to SmartPatients.com and creating an account for their online forums.

There are lots of folks and even nurses and a few doctors who post there who can provide you with lots of advice.

They've been a true life saver for me for the past 4 years.

I wish you all the best.

tamib · 10-20-19, 02:01 PM

My friend's mother has PMR, took her 6 months to get diagnosed, and has been on steroids about 6 months now. She is doing better but definitely not her old self, she has had to scale back a lot.

Tammy

primrosecat · 10-20-19, 03:03 PM

First of all let me thank every one of you. It helps knowing how other people deal with this, and your suggestions are things I can do. I feel for those who are dealing with this or other health issues you've mentioned. The website is definitely something I will look up, too. I appreciate your help.

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10-19-19, 08:15 PM
primrosecat Join Date: Sep 2008	Bewildered If this topic is not permitted, please delete. This is a health question. Recently I was diagnosed with polymyalgia rheumatica. I have never even heard of this. I was hoping that if anyone else has it, or knows someone who has it, they could enlighten me. I was put on steroids, but had to stop the treatment because of side effects. Now I'm just trying to cope.

10-19-19, 10:44 PM
bergame VF Supporter Join Date: Apr 2003	My husband has PMR, with his main symptoms being stiffness and aches through hips/back and shoulders, leaving him with greatly reduced range of motion. He was treated successfully with steroids, but after weaning off the steroids about a year ago, the symptoms returned. He is now seeing a rheumatologist (previous treatment plan was through his primary care doc) who sees a lot of cases of PMR and is better equipped to help him. I’m sorry to hear that you’re dealing with this. Has your doctor suggested an alternative to steroids? Lots of stretching is one thing that my husband does pretty religiously to mitigate the stiffness. And he has continued with his running and weightlifting; despite the exercise challenges presented by PMR, he still feels better when he is active. I hope you find a path forward with the help of your doctor.

10-20-19, 07:45 AM
dianestjohn Join Date: Jan 2006 Location: Orange County, CA	I know someone who has PMR, she woke up suddenly one morning and was in horrible pain, she was really frightened until she got a diagnosis. She has fully recovered I think but it took awhile. I know when she was first diagnosed she changed her diet radically to non-inflammatory food, I remember we went to lunch nd she only ate strawberries. Not sure if she was put on steroids and if so how much of the improvement was from steroids and how much from her food choices. I remember her doctor told her stress can trigger or exacerbate the symptoms - she had had several very stressful events - so part of the advice was to slow down, scale back, and, in the doctor’s word, “don’t think too much” 😀 Hope you feel better soon.

10-20-19, 08:01 AM
Laura S. VF Supporter Join Date: Aug 2002 Location: Raleigh, NC	I'm sorry you are dealing with this. I am not familiar with this condition at all but have had psoriatic arthritis for a very long time. Shortly after being diagnosed, I read something that gave me my two-step process for dealing with it: 1. Find a GOOD doctor, one that knows what they are doing. 2. Make your pain their problem. I'd really encourage you to try to find a good doctor. It's not an easy thing sometimes. I've had good results getting referrals from other doctors. Anyway, just some thoughts. Hang in there! __________________ Laura Laura's Workout Mantras: Something is better than nothing The best workout is the one you will DO

10-20-19, 01:33 PM
DawnP VF Supporter Join Date: Nov 2001 Location: California	Support from SmartPatients forums I'm sorry to hear about your news. I highly recommend going to SmartPatients.com and creating an account for their online forums. There are lots of folks and even nurses and a few doctors who post there who can provide you with lots of advice. They've been a true life saver for me for the past 4 years. I wish you all the best. __________________ Dawn P.

10-20-19, 02:01 PM
tamib Join Date: Nov 2001	My friend's mother has PMR, took her 6 months to get diagnosed, and has been on steroids about 6 months now. She is doing better but definitely not her old self, she has had to scale back a lot. Tammy

10-20-19, 03:03 PM
primrosecat Join Date: Sep 2008	First of all let me thank every one of you. It helps knowing how other people deal with this, and your suggestions are things I can do. I feel for those who are dealing with this or other health issues you've mentioned. The website is definitely something I will look up, too. I appreciate your help.