Has anyone suffered depression as a result of the chronic pain from the PMR, my mood changed significantly lower in February this year, I was diagnosed with PMR in September 2020, I am struggling to get out of bed every day due to the feelings of depression? Can anyone offer any advice please? Thanks Janet
Depression and PMR: Has anyone suffered depression... - PMRGCAuk
Depression and PMR
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Littlejan22
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Hi there. Sounds like the first job is to get a handle on the pain as it will affect every aspect of your life. At only 7 months in you previous doses have been pretty low. A few questions - What dose are you on now? On what dose were you last comfortable? What have you been doing with dosing since PMRPro suggested slowing right down? Who oversees you medically with this?
Hi I started on 15 mg and have tapered to 9mg now, however, although I was told to come down 1mg a month, which I have, however, following the advice, I paid privately initially in January for the diagnose at Little Aston Birmingham, however I have not had a rheumi since then, so you could say I am currently managing myself, probably not the way forward as I have had to give up work due the pain for the moment I have asked the GP to appoint an NHS rheumi thanks Janet
At what dose of Pred did the pain kick back in?
when I dropped from 10 to 9mg x
Did you sit at 15mg for some weeks first before reducing? It sounds like you need to get that pain under control with a higher dose but really you need a doc to be involved. If you are managing yourself, is the GP prescribing your Pred without any consultation?
Hi SnazzyD, yes I was at 15mg for the first 4 months then dropped 1 mg per month following this to perhaps a little too rapid?
Maybe for you but fine for some. I’m not getting maths though. If you were diagnosed about 7 months ago and stayed on 15mg for 4 months, that leaves 3 months to drop to 9mg which is 2mg per month. Is that right? It seems a useful rule is that a good 2 weeks on a new dose after withdrawal symptoms have gone helps to see if the pain is being properly controlled. It can take a while for the inflammation to build up so you can get past your ideal dose without realising it.
Apologies I was on 15 mg from September until November, then went down 1mg Dec, Jan, Feb, March, April think you are right I have dropped more than I should of done.
Yes I did, I am waiting to get it sorted now, thanks for the advice Janet
Hi Jan
Unfortunately Chronic Pain impacts not only on the body but the mind also.
If you get referred to a Pain Management Specialist part of the Treatment is often with an Antidepressant and/or Amitriptyline at night (an old established Antidepressant) that relaxes the muscles & aids a deeper more relaxing sleep.
I was referred to a PMS long before l had PMR but was able to apply the coping mechanism l learnt there.
I’d suggest you speak to your GP & explain how you feel, do you have other pain beside the PMR as that could be treated with Pain Meds making you more comfortable. An Antidepressant may be beneficial as the impact of PMR can be overwhelming & takes time to adjust to. If you can get the pain managed as well as possible your mood will lift but in the meantime a little help wouldn’t go amiss.
SnazzyD has asked you about your Pred Dose & it’s important that this is at the optimum to make you feel more comfortable.
Kind Regards
Best Wishes
MrsN
Thank you so much Janet
DorsetLadyPMRGCAuk volunteer
This is not specifically about PMR, but it does cover chronic pain and depression - with links to more details - versusarthritis.org/news/20...
Depression is very common, can be the illness can be the Pred, but there is plenty of help out there whether it be tablets or F2F with a therapist- so please discuss with GP.
Don’t suffer in silence at home.
My late hubby suffered from it during his days with chronic heart issues, and although he was sceptical he did find a fairly short course of CBT (Cognitive Behaviour Therapy) helpful.
He said it wasn’t rocket science, and lots if it he already knew, but hadn’t put into practice, and talking to someone who didn’t know him helped him think it through.
Thank you for this really useful link, really appreciate it, feeling like I can understand it better now, not sleeping must be linked to dealing with the chronic pain, thanks again Janet
Sleep deprivation is linked to chronic pain....I have noticed in the last few months my sleep is much better - following recovery of last of 3 joint replacements thank to OA....
Versusarthritis is a good site.....although obviously geared around arthritis, so much information/advice is applicable PMR and GCA.
Hope some of the advice helps
I've lived with chronic depressive illness since a teenager, but was all managable without medication (CBT, talking therapy, and the goodness of close friends) until PMR struck.
In my first year with PMR I learned that the inflammation that causes the stiffness, pain and fatique, also affects the brain and particulalry, the mood centre. Steroids have helped me with this by quelling some of the inflammation. If the pred dose is too low I find myself crying several times a day with suicidal thoughts. So being on a dose level of preds that stops that is important for my basic sanity. I'm tapering from 7.5mg to 7, and had several days of weepiness but now seem to have adjusted. Will stay on 7 for a while then start to taper to 6.5 following the ultra slow method.
Thank you for your reply, I never expected to have depression because of the PMR and this is a real struggle for me, I have lost most of the quality of my life (seems like it has all gone completely pear shaped since the illness of the PMR, I am so sorry to hear about your sadness and suicidal thoughts, fortunately I have not had them as yet, I have felt like I am a burden to my family, especially as the PMR is mainly on the one side and walking is becoming more and more difficult. I have never experienced chronic pain until I had PMR, Thank you again and I hope life gets better for you?
PMR is a life changing illness and it is important we realise this. Steroids are extremely good at helping the pain, but you must be on a high enough dose or they are a waste of time and sadly they do have side effects, including suicidal thoughts. As has been suggested, you may not have PMR at all, around 40% of people are misdiagnosed. Do other pain killers help? If so you could consider you may not have PMR. Your doctor should be able to help with the depression.
Hi I have had it diagnosed by a rhumi as PMR in January, not sure how long it will last
If it is PMR it lasts quite a long time such as 2 years + until it goes into remission and occasionally it can come back. Does any other pain killer help?
PMRproAmbassador
It must be questioned whether you are at the right dose of pred if you still have that much pain or even if it is PMR pain at all if it is so one-sided. But I can't find anything about your tapering and dose other than you were at 9mg and seemed to be struggling so can't comment on that.
Unfortunately depressed mood is often an aspect of autoimmune disease and definitely a feature of PMR. To add to that there is the bereavement of relatively sudden loss of your normal life that must be adjusted to. I gather you have a more complicated mental health status than most of us - have you discussed this with your GP? Pred doesn't do some MH conditions any good at all and you may well need some professional input.
Thanks yes I do have bipolar and have had it well maintained for over 25 years, indeed I feel this new condition of depression has come about only since the PMR I have asked to speak to my MH consultant as it is changing my whole life and is most deliberating (think thats the right word and context) as my lithium may be conteracting with the pred, appreciate your advice thank you Janet
Debilitating????
verywellmind.com/steroids-a...
And there is an interaction of steroids with lithium so I hope your doctor is checking your potassium levels?
ncbi.nlm.nih.gov/pmc/articl...
suggests to me that since pred can cause similar problems as an adverse effect, using it when you have bipolar must need some expert input. I'd want that chat asap.
My heart goes out to you as you work through this...and you will. It is the most normal reaction in the world to feel depression or sadness as you acknowledge the change in the quality of daily life. Added to that is the painfully slow process of working to balance the steroids and our pain level. For me...as I waded through the losses in my life I found it equally important to talk to a therapist as well. There is so much compassion and understanding on the forum but like many here I would urge you to seek out additional help. It is hard to lift oneself up when in pain. I wish you all the best. 💖
Thank you for the lovely advice and kind words Janet
Just knowing what you feel is normal is step #1 which will lead you to taking a proactive step....that is #2. 😉 You can certainly see you are not alone.
Hi. My depression is partially due to grieving loss of quality of life. Example.....can't walk very far, have little stamina for pleasurable activities like gardening, miss activities with friends who are off with kayaks for the weekend...... don't forget Covid... and...the list goes on.Oh...and the pain...spinal osteoarthritis, etc., hurts most of the time.
So between social isolation, chronic pain, rainy seasons, and sometimes boredom, I find myself with lots of time to wallow in self-pity.
Then I remember my mother, who posted a hand written note on her refrigerator...
"If it's to be...It's up to me".
So here we are...time to make choices...get up, get dressed, take myself to tea. If Covid allows, call a friend to meet me for tea.
Dig out my old hobby materials...and Do It! Don't like that hobby now..?
...do something else...
Make a list of the things for which I am grateful...there are many...
Call a friend...ask her how she's doing...then listen and care about what she says...
Ok, enough of my soapbox...I've walked many miles in the shoes of depression...they will always be close at hand, should I choose to wear them this day...just not this day....
Takeaway message...make a choice today...choose to do one thing you feel good doing... then let the good feeling soak in,,,
Remember,...This forum is for you and me...there is always someone here to share our journey...let us know what you choose to do today...we are listening...
Kind Regards, Jerri
Thank you for lifting my day with those words, especially those from the note off your mother on the fridge, I do not want to let this depression sink my world, I have the choices to make and from now on I will do so, having a warm bath gives me pleasure as it eases my pain in my shoulders and hips, I don't have a hobby, perhaps I should find one, talking on this forum helps as other like minded people are suffering with the same as me, and to be honest I didn't expect the depression, it crept up over me like a black cloud or a black dog as some people liken it too. I need to remember all the things I am grateful and feel happiness again in my brain, and I will thanks for these words of encouragement Janet
Small steps. But important steps
I have GCA and developed prednisone induced myopathy in November 2020. So that depresses me. I can hardly walk 100 feet before I have to sit. No energy. But I make myself walk a bit. When the pool is open, I swim. Play UKELELE. Make cookies. And I just started chair yoga. Ever Onward. Good luck.
Thank you for your kind advice.
Hi Littlejan22, Such very good advice...and empathy from this supportive 'forum family'.I can't begin to imagine how challenging it must be for you at times. I'm fortunate in that although I definitely have periods of feeling very down, they could in no way be classified as depression. To feel lost, alone or isolated in a field of pain and uncertainty is a place that nobody wants to find themselves, and the loss of one's normal way of life takes some time and a good few adjustments to get used to.
My experience of PMR over the past two years has been much less impactful on my life than yours, but nevertheless, I've lost my health, had to make changes to how I order my day, and I've just made the decision this week to give up my job after 2yrs sick leave after 2 unsuccessful attempts to return. A decision that's caused me enormous sadness and a huge sense of loss. Friends on this forum though have provided me with reassurance, support, advice and ideas for moving forward.
For me, accepting my 'new normal' has taken time but it makes my outlook on the future much less stressful as it removes all the pressure on me to meet unrealistic expectations. Ok....I can't do an hour of exercise at the gym every day anymore.....I can't be out late into an evening with friendsor family.......I can't work.....I can't over-exert myself, etc.....but I CAN go for a daily stroll and do some gentle yoga....I CAN go out for lunch rather than dinner.......when it's safer to do so, I CAN still go into school as a volunteer helper......and I now have time to pace myself so I CAN plant up my patio pots......but just not all in one day! 😃
I know you have so much more to deal with than me, and with pain in the mix, that really needs to be under control first.
Sometimes I think, 'Who am I now?' It's almost as if I've lost my identity. Am I still the same Heather? Well, I'm still Heather the wife, the mum, the early years expert, the ex nurse....the same person who loves her family, her garden, her birds, her books, her yoga. I'm realising that although at the moment I'm somewhat inhibited by the constraints of the condition, it's also pushing me to be more imaginative and creative in finding both new things to engage in and new ways to continue engaging in things I already enjoy.
Life definitely changes with this condition, but it doesn't all have to be bad news. There will always be darker days but there will always be better ones too. I think if you could just get your pain sorted you'd then feel much more able to deal with other things. Pain drags us down. So, I hope you find the help you need to get that pain under control and then hopefully everything else will come together and help you to feel more positive. Sending you a hug.
Beautiful kind words Heather thank you for giving me hope!
Great advice.
Good morning littlejan22,Sounds just like me!
Thank you for sharing this with us all.
R
I just read the wonderful words you wrote a year ago....again. I've printed them out so I can read them each day....I hope you are doing well and just wanted you to know how meaningful those words are. Such wise leading words. My thanks💕
Janet, good for you.... you have the tools to change how you experience your life. It truly is up to you ( and me) to take control of the direction of our lives. We do not have to be passive and let others control how we live our lives. It is easier to ask others " what should I do"... when we know full well what we really want.
It is an amazingly powerful experience, to stand up, and say...
I want...I want to do this my way... I want to go my own direction... I like this...
Many of us have been wives and mothers, and in those roles, we have rarely put ourselves first.
Well, my Friend,... it's time to put ourselves first.
Try it... it feels good...it's OK..it's our right.
Kind regards, Jerri
Ys, piodiclly I o, hoe I esistit as best I can. I gak o o park, si on h deck hin the irds, hink How forunate I am not to have hralth as poor as mny popl, much wore illnesses han mine. I wie poery and some essYS. iN OHER WOEDS i TRY TO KEP BUSY AND INTEESTED IN THE WOLD AROUND ME. hOPE OU FEEL BRIGHT AND SUNNY TO-DAY
I did not realise it at the time but now I am starting to feel better (and after some frank discussions with my husband) I now realise that I was probably suffering from low level depression for most of my time with pmr. Certainly in the early days the mornings were dreadful as I just did not want to face another day of pain. Things that helped me - yoga, warm baths, meditation, afternoon naps and keeping a daily journey. I noted down how I felt, what helped etc. So when I woke I could read the journal and be reassured that I would feel better later in the day - before the deadly fatigue kicked in ! - and that a nap was essential. Very best wishes
Thank you so much x
Hi Janet I posted about being through my boots last week and the lovely people here lifted me. So much good advice a support. I am just over twelve months since being diagnosed and identified with your discription of not wanting to get up and face another day of pain. Be kind to yourself, treat yourself as if you are someone worth caring for and appreciate the small things you you managed today. I am very good at writing this but have struggled to do this for myself I am a work in progress. Hope you feel better soon and get the pain under control.
Thank you so much x
Yes! When the symptoms get beyond a certain intensity it is very hard not to feel downhearted. Thank God for Pred. That is why I agree with PMRPro & wise ladies on the site who suggest upping the dose (when tapering too fast or from other causes which bring about a return of symptoms), in order to find the best, effective, minimum dose - which is often a moving target. Quality of Life is paramount. You are not alone.
Many thanks for these words x
Hi, pmr has completely ruined my life or rather the steroids have. They have triggered significant mental illness, for which I have been receiving treatment to no avail. Never had any problems before. I really feel they have effected my brain and have no quality of life now.
Thank you for these words of honesty, most grateful I am trying to not let the steroids affect my MH but it is so hard for me, I feel like I am another person, I have lost the bright bubbly little jan that I liked so much to be replaced slowly by this gloomy, moody in pain sad lady who I hardly recognise!!
I feel exactly the same and feel like I have lost the plot completely
Hi Jan I am no expert. I had PMR for a year. Historically I was fit out going stable and very confident. PMR changed all that I was in the worst state at around 8 mgs. I was lethargic weepy I had no motivation and became unable to face anything that was remotely challenging. I would become very anxious and avoid dealing with the issue. It was truely dreadful. I didn't have chronic pain all of this seems to have stemmed from the prednisolone. Basically I conclude it's a side effect. I just endured it I read books stayed in bed a lot and kept reducing the dose of pred. I only felt better when I got down to 1 mg. I have now stopped altogether. Based on my experience I just endured it it will get better try to stay positive there is light of the end of the tunnel. Good luck.
Littlejan22• in reply to
Thank you for this great advice, I was told by my rumi to reduce 1mg per month, initially I was on 15mg September 2020, I got to 9mg March but found the pain returned, I am worried if I tapper too quickly (although it may reduce the depression that started when I got to 9mg) I may have even more pain, I paid to have it diagnosed by a specialist in January and haven't had a rumi since, do you think I need to ask my GP to refer me to an NHS one as there was a wait in the pandemic of 13 months, basically I am self medicating and have no medical professional to advise me what to do?
Your GP can help manage you at present - often only patients who are atypical or have other problems are referred to a rheumy, it isn't essential by any means.
Yes, your rheumy said reduce 1mg per month at a time and that is good - but he forgot to tell you that is not a relentless reduction to zero, it is to look for the lowest dose that gives the same result as the starting dose did. It is a process known as titration of the dose. Usually it is done from low up to find the right dose - for BP meds or even mental health medication. That doesn't work with pred - you go from high to low. For the present that is probably 10mg since you say pain started to return at 9mg. It doesn't mean you won't get lower, just not yet.
And there is no point not taking enough pred - you need to balance the amount of inflammation with the dose to clear it out. If you aren't on enough then the left-over inflammation just builds up until there is enough to cause symptoms - like a dripping tap fills the bucket until it overflows. You need to go back to a dose that is enough or the pain won't improve. No ifs or buts - or your GP must refer you as an emergency because you are a complex patient relating to the mental health aspect.
Very true, I have spoken to them today and they are referring me to a consultant in the next 1 to 3 weeks, If they give me anti-depressants with my lithium and pred it could send me high which would be equally as disastrous appreciate the advice I didn't think of it as a dripping tap, but thats exactly what it is, I have pain in my shoulders my one hip and my buttocks I hardly sleep therefore something in my meds obviously isn't right, I won't give up and I need the doctors help, he said my case was complex.
Result - first step!
• in reply toLittlejan22
I have had access to a specialist who is a friend of my daughter's and Is currently on maternity leave. When you get pain at 9 mg go back to 10 mgs stay on the dose until you are pain free and then reduce again 1/2 mg my depression was worst around the 5 to 8 Mark listen to your body and if the pain gets too much increase the dose. Finally I am off prednisolone about 4 weeks now. However I am not pain free I seem to have aching fingers first thing in the morning but they get better by mid afternoon I think my adrenal glands are not fully up to speed. I endure a bit of pain but then I am 76 so unlikely to do a marathon any time soon. Good luck
Hi littlejan22
In addition to the advice already given, do check out your IAPT service, you can self refer for counselling or similar and they may also offer courses for living with and dealing with chronic conditions. I'm currently doing one and they are pretty good.
I also had/have depression and mood swings associated with PMR and pred. Not sure what caused what but I've noticed that as the pred is reducing I do feel better (now on 10). It's crucial to have the pain well managed though. I've also had some private counselling which helped enormously too.
Please seek some help, things will improve in time I'm certain. Nothing ever remains the same.
Thank you so much
Thank you for sharing your thoughts and feelings. I have found your comments and those of fellow sufferers so helpful abs encouraging!! I’m 3 years into the PMR and down to 7.5 mg of pred. I cannot imagine life without it but who knows?? I’m happy to manage these reductions and have learned that why I think I can do is not necessarily the best course. The forum helps to keep me balanced and positive. Thank you to you all. You are fabulous!!!!
Encouraging words thank you x
Yes, I have and still suffer from depression and mood changes. Sometimes, I think I’m just going nutty. So reading your question asking the community about it made me feel a little better knowing that I am not alone. Between my 6mg daily prednisone, my age 67, continued chronic pain, the pandemic, my divided family regards to the pandemic, I feel stressed most days. I’m trying to get outside more and do outdoor activities now, which is helping. I’m from Michigan, U.S.
Yes, I’m so thankful for this group too for those reasons.
I’m also from Michigan ☺️
Indiana! couldn't agree more....thank, heaven I found this group....I'd have gone mad PLUS I've met so many wonderful people. The people of this forum have 'saved' me from some of my doctors and their shared knowledge helped me be an informed patient.💖
PS If anyone from the states wants to sign up to donate a little each month to support PMRGCAuk.....just message me and I can send you in the right direction, just sayin'
Hi Indiana! Washington state here! We are enjoying a beautiful spring, and fortunately Covid is loosening bit in our region. Our vaccinated group of friends are able to get together for small gatherings , and it is remarkable how nice to see whole faces smile ( after a year of masks, in isolation)..
I hope Covid things are easing for you other folks.
..kind regards, Jerri
It is getting more relaxed here also...but I wear my mask still if I mix. I love those nice days where it is a pleasure to walk a bit. I think many have learned how to smile with their eyes!! Take care, Marilyn
If the smile doesn't show in a person's eyes - it's NOT a friendly one.
Thanks Grammy
Yes "nutty" would describe how I feel most days lately, thanks for this really appreciated. Janet
I'm bipolar and just started to reduce pred. From 15mls. to 13mls. the last 5 days. The mood swings and depression have begun. I really feel down and anxious. I've just read some of the information referred to above. I was unaware of the problems associated with steroid use and bipolar symptoms. This is a relief. I thought I was imagining it.
No clear ways to avoid except further reduction of pred., but what about pain returning? This is such a terrible side effect. Have been suffering with bipolar most of my life. I have managed recently with a new mood stabilizer, an ongoing (SARI) and a new psychiatrist.I will continue to absorb all the wonderful comments and continue to hope for any improvements that may occur. I will try to stay optimistic. I HATE PMR!!!
I live in Wisconsin, in the great USA. Thank God for the UK and this site. It has been my salvation.
At last a "fellow bipolar suffer" someone who has like suffered with that condition most of your life, having this chronic illness alone is enough, mine has been more on the high side than low, this is why I too thought I was imagining it when my mood swings came along 2 months ago, I have now being struggling to get out of bed because of depression which I believe has been triggered by yet another chronic pain disease PMR, I must admit I am not a fan of it at all. I am now down to 9mg but worry about reducing it too quickly (even it will take away the depression) as the pain can be awful. I am waiting to see an new psychiatrist and hoping she will prescribe a mood stablizer/enhancer to lift this depression, I just feel like I am just existing day by day. Thanks for your reply Janet
My medication is Lamotrigine. I started at 25mgs. for a month and now at 50mgs. per day. I consulted my neurolagist after prescribed by psychiatrist and given the OK. I since have found out that my son has taken it for the last 8 years. He is my older son and not bipolar like me and my younger son, as far as we know. He has had anxiety since age 6, now 38. This new bout with depression has ramped up since I decreased my pred. I will take one day at a time. As you know with bipolar that is all we can do, and of course a good psychiatrist's advise. I can only pray you can find one that can address your bipolar condition. As you know it can be very hard to diagnose and treat even without the addition of PMR and prednisone. I went undiagnosed for the better part of my life. It was so hard just to concentrate and achieve my life goals. I still consider myself to be a fairly intelligent individual but struggle everyday with the impulsivity and ramifications of having a mental illness. I can so understand and sympathize with what you are experiencing. May God keep you in his good graces.Please feel free to message me at any time. We are kindred spirits like many of us here.
P.S. I also take a reuptake inhibitor (SARI) for depression and to help me fall asleep. Maybe ask your new Dr. It took a lot of experimentation and many medications to finally find something that helps. The information posted about pred. and depression on this site confirms that the (SARI) can be helpful. Again, good luck.
Thank you everyone for all your helpful comments, advice and suggestions, I also think loneliness doesn't help, since the pandemic I have hardly seen anyone, this evening my granddaughters are visiting only 10 and 5 years old but feels so good to have company and someone to talk to, I have a husband but hes always working and the house feels alive again, I am going to start to look after myself more from tomorrow, more gentle walks, time outside, and above all self talking myself out of this feeling of depression, it just not nice. Appreciate all of your comments, this is a lovely forum so glad I found it. Goodnight all Janet
Hello Littlejan,It is a huge challenge to be bright and cheerful when you are coping with the pain of PMR. Once I was diagnosed and started prednisolone I felt able to cope with daily life, and making adjustments of taking things a little easier for my own well being.
I started on 25 mg in October 2019. I am now on 5 mg but have not been able to reduce any lower due to the pain and stiffness returning in my hip and upper thigh area. The down side is I have been diagnosed with Osteoporosis, a side effect of the medication.
It is very hard to get out of bed when you’re in pain, one little movement at a time, you will get through this.
Another thought, I went to a Chinese traditional acupuncturist, she would leave very tiny patches on points in my body to help with my physical and mental state.
Best of wishes in your healing.
🌈
Many thanks for your reply, very helpful Janet
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