PMR and Depression

Posted by thereselefever @thereselefever, Jan 26 11:40am

For almost three years I have been tapering off Prednisone. I am on a cocktail of medication, including pregabalin, tyeene, prednisone, and sometimes celebrex. And yet, the pain is there, always there. Sometimes debilitating, sometimes on a good day tweeks just to remind me it is there. I get up in the morning and go directly to the cocktail that is going to (in an hour or two) allow me to move around with limited pain. I then usually have a few hours in which I get to work and am able to do my job without thinking about PMR. Bur around afternoon and by dinner I am left wondering if I have it in me to make dinner and walk the dogs.

Then I get up and do the same the next day.

My doctor believes the pain is real but insists I should not go back up on my dose. She is, of course, right as I know the downfalls of being on a steroid for too long. I see what ill effects it has on the rest of my body. What is the lesser evil?

Most days my husband treats me like I am an 80 year old (I am 62). He can't help it. He sees the pain and doesn't want me to endure it. Pain is a terrible thing to have every day, and I am becoming depressed. I see a therapist and I am deeply spiritual with a tremendous support system.

Just curious if anyone else feels the same? And if this is addressed in any other forum?
Peace.
Therese

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

Profile picture for rocksology @rocksology

Therese, I'm so sorry you are going through this. I think all of us understand the despair you feel. I have lived with debilitating pain for decades with "Fibromyalgia" or "Chronic Pain Syndrome" as floating diagnoses. It took until last January to diagnose PMR which I believe came on 10 years ago. Now they have changed it to Seronegative RA and Carpal Tunnel. Who knows what they will throw at me or change it to when I actually get to see the Rheumatologist at the end of March.
Everyday pain, watching your life go by without you, and knowing we shouldn't feel 80 years old at our age (I'm 68) wears on us. I know my brain says "Yes I can" but my body quickly reminds me "No you can't." It is frustrating and demoralizing. I'm a rock cutter/polisher and a silversmith but haven't been able to engage since November. It has thrown me into a deep depression.
So, how do we get out of this. ? I have hung a bird feeder on my bedroom window so I can see the beautiful birds come feed. I stopped watching the news because that depresses me even more. I started using 3:1 CBD cream and oils (external only) which seems to help some (talk with doctor before using please). I use breathing exercises and (this will sound silly) I talk to my pain. I ask it what it needs, identify what color it is and follow it along the nerves to my brain. I try to practice not trying to get everything done on days I feel a little better. I need to recognize when I've done enough so I don't throw myself into a flare. I've also taken up Neurographic art therapy. It's interesting. My first "drawing" (and I can't draw a stick figure!) I couldn't make sense of, but then realized it was a person with disconnected arms, legs and head. It was me! I am completely discombobulated. Like me in a pain panic. It was enlightening.
I am grasping for anything to take my mind off the pain. I volunteer 2 hours once a week so I am thinking about others and get out of my head. I'm also doing CBT for pain management with my online therapist.
I truly hope you find some relief. It's so hard to live with pain instead of IN pain, but sometimes we just need to separate the brain from the body and take a different point of view. I hope one or two of my personal strategies will help you in some small way.
With love and understanding,
Terri

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@rocksology My morning coffee helps me a lot. And I took-up watercolor 2 years ago. 🙂. If I don’t feel like doing anything else, I just go paint. Takes my mind off it….

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Profile picture for tyl411 @tyl411

That is a really good, thought-provoking question. I have felt weepy as I get down to the lower doses of Prednisone. In a strange way it seems freeing to fell the weepiness, as I seem to be giving expression to the things that may have contributed to overload, which may have set up the PMR condition. I seem to be putting thoughts in slots, and the weepiness seems not only a good thing, but appropriate. In other words, I probably should have been crying before, but couldn’t. Great question, Thanks.

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@tyl411 , thanks for your input.

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Profile picture for kjoed53 @kjoed53

Maybe it's not the prednisone tapering but the PMR itself causing you to feel this way. The tapering is just a reminder of what you have gone through, and still are.

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@kjoed53 , I don’t have PMR. I follow this group because it’s the one I found the most information on from people who use prednisone long term. I have asthma and chronic sinusitis which required steroids and then unfortunately after each burst becoming more and more difficult to come off of, I develop secondary adrenal insufficiency. Now every time I get sick or have major stress from an injury, surgery etc. I have to stress dose which repeats the cycle of trying to start a new wean. I’m currently at 8 mg and this wean is going very slowly. I’ve never had depression or been emotionally labile prior to being on prednisone.

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Profile picture for susanpmr @susanpmr

I am struggling with depression, I’m now down to 2 1/2 mg of prednisone. I’m trying to be proactive: going outside, meeting with friends, eating good food and setting small goals. It helps until the evening when I crash.

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@susanpmr, I’m sorry you’re struggling! Thank you for your input. Wishing you better days a head.

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Profile picture for csimmonds @csimmonds

I have been experiencing this but I tapered to zero and not my pain is returning. Mornings are the worst. I don't know if I am weepy from chronic pain or being disappointed that the PMR is returning or was never gone. I don't want to go back on prednisone but the pain is getting hard to tolerate. Most days I improve by mid afternoon.

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@csimmonds , so sorry you’re going through this. I completely understand not wanting to go back in prednisone. It’s a miracle drug in some ways and poison in other ways. Thank you for your input.

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Profile picture for Justin McClanahan, Moderator @JustinMcClanahan

Hello @staylorrn2000,

I combined your discussion with an existing discussion titled:

"PMR and Depression"
- https://connect.mayoclinic.org/discussion/pmr-and-depression-1/

Here you can meet members talking about tapering off of prednisone and experiencing symptoms including depression among others.

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@JustinMcClanahan , thank you.

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