Off Prednisone but still feeling new type of pain

@pmrnew thank you. Before PMR I was a gym rat. Now I do some 3 lb hand weights-in my house. Really sucks. I don’t expect to get back to heavy lifting but it is so frustrating at every level. As I said, I get the 5 mile walk in almost everyday but I have to push myself most days. You take care as well. Thanks for reaching out. 😊

I was on Pred for 3.5 years because I tapered 4 times. Not saying you should do that. I believe the earlier tapering pains were not PMR and doctors could not help verify. My inflammation markers were not there either. I believe I should have just stopped the Pred much earlier. I always suspected that the steroids were doing damage and this was the cause of much of the later odd pain. So in the end I decided to chance it and get off Pred with help of everything I could get my hands on. vibration plate. Red light mat. NAD. Hydroxychloroquine. Naltrexone. New mattress. Deep tissue massages - this really helped allow me to exercise more. I did lose significant
muscle. Now it’s coming back.
The most frustrating to me was the lack of clear medical advice. So I had to take it into my own hands.

You sound similar to me. You will get there.

@cyndip
Yes, nocioplastic of the three “N’s”. 🙂
I love this forum and don’t make use of it as much as I should due to a fairly active life. I love sharing and what we learn from one another. Thank you for replying and your book recommendation. I shall endevour to purchase it. There is another book but it’s a bit outdated. I understand the author is in the process of a 3rd edition. Dr Kate Gilbert (a sufferer of PMR herself ) wrote PMR and GCA, a survival guide. I do not see the 3rd edition out yet. Since she wrote it, there is a better understanding of PMR and newer drugs. Also, Covid was a driver of many autoimmune maladies including PMR which at one time was poorly understood and not thought of as autoimmune, but isn’t everything down to the immune system.
Despite LDN not working after trialing for 3 months, I have started a weight training program twice weekly and yoga weekly. I have found better health despite the chronic pain and have pushed through it in a positive manner. The body keeps score!
I wish you well and look forward to reading the book.
Cheers from Ireland. 🙂

@abbeyc
I agree with you entirely. I look back and also feel prednisone was not the way forward. Perhaps 3 months but not 18. My rheumy questioned why I wanted an ACTH test. I believe no stone should be left unturned in understanding what is happening in the body and hold the key to why we might be feeling as we do.
I weight train now and this will be a lifelong endeavour. I feel empowered as my body heals in other ways we cannot fathom through exercise, t’ai chi, yoga and the like. We are the greatest support and encouragement to each other.
Warmly.

I was just diagnosed with PMR so I don’t have any answers, but I am on here reading trying to get some information from people that are experiencing the same symptoms

@diandrea
This is a great site. Very informative. Everybody here has been through it or is going through it and can help. Hang in there just be tough.

@mezack25
Thank u for your response
It’s good to know there are others going thru the same thing. Not that I would wish this on anybody.

People that never had this type of disease or disorder just don’t understand because you look normal, but you feel like you’re gonna die : (

I applaud those continuing their workouts and 5 mile walks a day. I see some is at the cost of additional pain the next day. I had the same issues and pushed myself not wanting to lose muscle. Then I hurt my back and I could do nothing for a while. I was afraid of hurting myself or doing more damage. I spoke with my rheumatologist regarding his advice on workouts. He said movement is important as well as stretching and mild exercise. Emphasis on mild. I think some of us try to do what we did before PMR. My doctor stressed not to overdo it and be more gentle with your body until you get through this. Maybe for some less is more. I no longer push myself and it has worked for me. I am doing better and less sore after exercising.

mezack25
Hi,
I’m having the same problem on 3 mg. of prednisone. I’m impressed that you can do a 5 mile walk. I cannot do that at all. Walking is much too painful, especially outside. I do better in the house. I also have pain in my back and neck. I can use a recumbant bike. Getting up from a sitting position is difficult and painful. I wish I had advice for you, but you are way ahead of me. Good luck with everying.

@tivogliobene
Hi there. Trust me. Some days it’s not easy doing the 5 miles. The start of the walks are tough but gets easier by mile 2. I have neck and back pain as well. I’m seeing a new rheumatologist in Dec I will be down to 1 mg by then. We shall see what she says. You take care and keep on that bike! Every little bit helps.