PMR and Depression

Posted by thereselefever @thereselefever, 6 days ago

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.

My goodness. Your story sounds so much like mine that I just had to respond. I’ve had PMR for 4 years now and I am just 66. Before this, I was super active and felt so strong. The pain is really so debilitating and I hate the way others now see me-as old and frail. I have tried a couple of therapists- I am a psych therapist myself / but hasn’t really helped me. Keep
Hoping it will go away one day. Anyway, wanted you to know there are others out there!

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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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I am 71 and was diagnosed with PMR in May 2025. I am very very slowly tapering at .5mg every 30 days. I am now at 7.5.mg a day. When I was tapering by 1mg instead of .5, the pain returned and I had to go back up to the last dose I was taking that relieved my pain. My PA said that if you start to feel the bilateral pain from PMR when you are tapering, go back to that last dose that helped. So my point I guess is that tapering should be done very slowly if possible. If prednisone isn't helping with the pain, then maybe a slightly higher dose or see a Rheumatologist for a different medication or diagnosis. My PA said that after a period of time, if tapering isn't possible then there are other medications that are primarily used for RA that they have some success with treating PMR.
As far as depression goes, I started taking low dose (20mg a day) Cymbalta. It seems to be helping my depression and anxiety. Cymbalta is prescribed sometimes for Fibromyalgia and at higher doses helps with the pain and depression from that condition. It seems to be working for my depression at just 20mg. These are just my experiences and everyone is different so it's best to talk to your Dr. first.
Best wishes to you all. We will get through this!

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@rocksology Thank you so much for your reply. I don't know why there is comfort in knowing there is someone else going through the same process.
Breathing does help, and so does CBD Cream sometimes.
Also would like to recommend for all "Soundbaths" They offer them at my local yoga studio, and I do go away from them feeling better.

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I absolutely love soundbaths! Thank you for reminding me of that. I’ll look around my small town at Yoga studios for that.

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thereselefecver and all,
I’ve always been very optimistic with a positive mental attitude. Recently, I’ve discovered depression. It seems that PMR strikes healthy active people, people who actively, routinely exercise and focus on a healthy diet and lifestyle. Six months ago, as I was leaving my PVP office for my yearly check-up, he announced to his staff how incredibly healthy I was for a 68 year old man. (Maybe he jinxed me, haha.) But now, within two months, I’m on 7 new medications. Before PMR I only took Levothyroxin for my hypothyroid condition (20 years.)
Before being diagnosed with PMR, I wasn’t sure “enduring the pain” was something that I wanted to continue to do. Then, Prednisone made all pain go away. I felt like Superman, except I couldn’t sleep. Sleeping pills were prescribed, Now I take them nightly. In less than 6 weeks, I got a blood clot which required hospitalization. I think (I feel certain) the Prednisone triggered it. The doctors don’t seem to know enough to agree or disagree; a few do, most shrug their shoulders. My rheumatologist started me on Kevzara to get me off Prednisone sooner, but my hematologist’s (referred by hospital because of the blood clot) bloodwork showed that my White Blood Cells dropped to almost nothing the day after my first Kevzara injection. She told me to alert my rheumatologist, which I did, who in turn said to hold off giving myself my second (2week) Kevzara injection and wait one month until my follow-up appointment with her to see what my bloodwork looks like then; and she also prescribed 50,000IU Vitamin D3, tablets to be taken once per week because bloodwork also revealed that it was extreemly low also. Before the Kevzara, all of my bloodwork was in Normal ranges, for years. The day after taking the D3, I was extreemly fatigued and lethargic.
Depressed? Lack of sleep and prescription drugs that alter mood will cause it.
Additionally, for 5-6 years, I suffer from muscle cramps, often severe, which no doctor can figure out, day time and night time. Hands and feet during the day (20+ times) and legs at night.
After PMR, and I don’t know if it is related to PMR or not) my scalp is very tender and the palms of my hands and soles of my feet feel like I’m walking on broken glass. My right thumb has begun to feel like stabbed with an ice pick. Both hands are experiencing numbness. I’m dropping things when pick things up.
How much pain and mental fatigue becomes too much to bear? I’m not suffering a slow tortuous death in a POW camp or starving to death along with starving family members, or any of the more horrific ways humans suffer.
Depression? Yes. I admit it. It comes and goes. I’m aware of it. I fight it. I am doing my best to focus on how much less my pain is than others have experienced in their life journey.
I wish the very best for each and every one of you. I wish you free of depression induced pain.

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@stonewheel
Thank you for your story. It is very familiar. And yes, it is always good to keep the larger picture in mind as far as suffering goes. Peace to you, and let me know if you experience any breakthroughs in treatment.

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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 I too am 68 years old and was diagnosed with PMR in February 2025. I also have spinal stenosis which I thought was the main problem. Although prednisone and Actemra have been working extremely well for my PMR issues, the spinal stenosis/lumbar arthritis was causing crushing pain, probably exacerbated by the PMR. before I was able to see a rheumatologist, a general practitioner who wasn’t looking for PMR put me on Cymbalta for nerve pain. I started at 30 mg which wasn’t much of a help, but it was a low enough dose to help my brain get used to having the Cymbalta. After a few months, I went up to 60 mg which helped the nerve and muscular skeletal pain dramatically. during the past month and a half. I decided to start taping off of Cymbalta and I have to say that the nerve pain from the spinal stenosis is back but my PMR symptoms seem to be under control and make the spinal stenosis symptoms. Much more tolerable. Please talk with your doctor about starting on 30 mg of Cymbalta for a few weeks, which again, really didn’t help with the pain at all, but after a few weeks of being on 60 mg I found a huge relief. being that I am not a doctor myself I just went along with what the regular general practitioner was having me do last year. If you are on prednisone right now that should be helping if you are on a high enough dose, but I really feel that the prednisone with the Cymbalta truly kept me from going crazy. The pain was so excruciating. I too felt like I was at least 85 years old. My mother lived to be 94 and I would say to my family members that I feel older than my own mother, and this was at the age of 67. Good luck!

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I was diagnosed with PMR in 2024, but I had been having typical PMR pain for 4-5 years. I weaned off prednisone after one and a half years, but relapsed 3 months later. I’m currently on 2.5mg prednisone, and I can function on that dose, but all symptoms are not gone. It is depressing to not be able to do ALL of the things I used to do. I’m 70, and also a retired RN. I am very leery of medications and side effects. I see a rheumatologist, and a functional medical NP to help with prednisone side effects. I did a lot of research on LDN, and started taking it 10 weeks ago. I’m not quite up to the recommended dose of 4.5 mg, but already feel a difference. I have a sense of well being, am sleeping better, and am in less pain. Low dose naltrexone is not FDA approved, and needs to be physician ordered at a compounding pharmacy. It is not expensive, and has very few side effects. The FDA approved naltrexone for addiction treatment in 1984 in high doses (50mg).
I will be trying to wean off prednisone while taking LDN. For info you can search for: ldnresearchtrust.org

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Profile picture for mun68 @mun68

@rocksology I too am 68 years old and was diagnosed with PMR in February 2025. I also have spinal stenosis which I thought was the main problem. Although prednisone and Actemra have been working extremely well for my PMR issues, the spinal stenosis/lumbar arthritis was causing crushing pain, probably exacerbated by the PMR. before I was able to see a rheumatologist, a general practitioner who wasn’t looking for PMR put me on Cymbalta for nerve pain. I started at 30 mg which wasn’t much of a help, but it was a low enough dose to help my brain get used to having the Cymbalta. After a few months, I went up to 60 mg which helped the nerve and muscular skeletal pain dramatically. during the past month and a half. I decided to start taping off of Cymbalta and I have to say that the nerve pain from the spinal stenosis is back but my PMR symptoms seem to be under control and make the spinal stenosis symptoms. Much more tolerable. Please talk with your doctor about starting on 30 mg of Cymbalta for a few weeks, which again, really didn’t help with the pain at all, but after a few weeks of being on 60 mg I found a huge relief. being that I am not a doctor myself I just went along with what the regular general practitioner was having me do last year. If you are on prednisone right now that should be helping if you are on a high enough dose, but I really feel that the prednisone with the Cymbalta truly kept me from going crazy. The pain was so excruciating. I too felt like I was at least 85 years old. My mother lived to be 94 and I would say to my family members that I feel older than my own mother, and this was at the age of 67. Good luck!

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@mun68 thank you, I was on Cymbalta 20 years ago, switched me from Sertraline to help w/pain. Unfortunately, I ended up with 6 months of horrible debilitating diarrhea before they figured out it was the Cymbalta and put me back on Sertraline. I am super sensitive to many medications. I can’t take any Statins, gabapentin, tramodol, most older antidepressants, certain blood pressure meds etc. My first Rheumatologist refused to help me because I couldn’t take the drugs he wanted to give me.
That’s why it has taken so long to find Seronegative RA.

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