Hi - I am getting increasingly dreoressed. I was pretty depressed before diagnosis - due to the extreme pain and worry and my emotions have been pretty up and down since being on Pred - however I am getting increasingly depressed and I hate to admit this but quite suicidal. I have had a family fall out which has not helped either. I just want to cry (and do) all the time and more and more see no point to anything.
I was wondering if anyone knows what the 'physiology' of cortisone / depression is and what I could do to help myself. I can go through days of 'coping' and then it just overwhelms me again for days / weeks.
I'm sorry to sound so dramatic but I am getting more and more worried about my state of mind.
Thank you.
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Slosh
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You have, I trust, been to your doctor? Because if you haven't that is where you need to stop off first of all. And not next week - tomorrow. Don't hide anything. I know mental health care in the NHS is struggling but getting the right sort of help is still possible. Even talking about it to someone is a very good start - and you have done it here so you can tell a doctor to their face.
There is a link between inflammation and autoimmune disorders and depression - that has been established recently. Depressive mood is actually one of the listed symptoms of PMR/GCA - and then you add n long term chronic pain and disability it is hardly surprising.
I do appreciate the effect of family fall-outs - so do try to ignore them. Drawing a line under a large part of my family relationships was one of the best things I have ever done - and removing the poison from your life is a big help in achieving healing.
Thank you. I can't go tomorrow. I am a live in Carer and so cannot just leave my client. I do have a Rheumatologist appointment next week Friday.
I'm afraid it's a very close member of family (child) and so I cannot just cut them off - it has broken my heart. I'm afraid immigrating, working endless hours, days and weeks as a live in carer,getting PMR and my family situation has really knocked me off my perch. I am usually pretty tough and stoic - having been through much adversity in my life.
There eventually comes a point where it all becomes too much and you crumble. But with regard to the client - if YOU become ill, the client will have no support - so a short appointment now may be better than a future collapse. And you are already concerned about your concentration abilities.
Having had major problems with one daughter in the past myself which led to me suffering burnout syndrome - taking some space from them may well lead to a better relationship later. It lurks there in the background afterwards if you become really ill so dealing with it as quickly as possible is essential.
I wouldn't say my relationship with my daughter was perfect now - but a lot of that is because of her probable attention deficit syndrome which has only been identified now in her late 30s. But SHE sees my side now - which she didn't. Things CAN get better.
Thanks PMRpro for sharing that. We were always so close and him so supportive of me. Anyway I am giving it distance but it breaks my heart. Both as a person and culturally family is of utmost importance - I cannot even believe it's come to this. Anyway as you say it will improve with time - but I fear it will never be the same again.
I have to work - I am a new immigrant and already did not work got seven months before and after being diagnosed. Thankfully this client is a darling and so easy to care for.
I will see someone soon. I have to phone my GP regarding blood tests and will mention it to him as well. Thank you again - I would be drowning and lost without this group and people like you.
I'm so sorry to hear that you're feeling so 'down'. You're a great contributor here for others, and I'm certain that our trusted friends on the forum will be along VERY soon to give you some emotional support through this tough bit for you.
From what I know, yes, Depression can be and often is a by-product of the physiological and psychological 'battering' that you get both from PMR and the steroids to manage the symptoms of it. It really is a Catch-22.. I've been there and got the T-shirt (despite my often witty ramblings here).
All I can say is: don't feel bad about feeling bad. It sounds like your family / emotional stresses have at least in part contributed to how you feel right now: and of course, Stress is the enemy of PMR (!). No wonder you feel so rotten at the moment!
If it helps: try to hang-on in there and allow yourself to REST mentally and physically, Switch-off - for tonight at least. The Mind can play strange tricks on us when we're feeling frazzled at the end of the day, and a new day (and energy) can bring a fresh perspective on things.
Keep Hope and Faith in yourself, 'This, too, will pass'.
Yep Slosh, Stress really doesn't help in these things!
Take a deep breath, let time - and sleep - do their important work, and I'm sure you'll face the day 'fresh' (or at least less frazzled) tomorrow. We're all here to keep an eye on you in the meantime - promise to keep us posted?
You have had a couple of great, practical replies here ~ not much I can add other than to say, whatever you are feeling there will be others here, on this forum, that can understand and empathise with you.
Depression seems to go hand in hand, the condition, change of life style, discomfort all add to this. With the addition of a family fall out ~ well most probably for all of us would be the last straw.
Sometimes we need to leave situations and people alone ~ its hard enough trying to find our way through this maze of a condition, and we don't have the strength for anything more.
Please as PMRpro said make sure your GP is aware and can support you.
This forum is a wealth of support when we most need it.
I am very sorry to read about your distress. In the early stages of PMR one really doesn't know what has hit you. But it does get easier and most of us can relate to your problems. Rest as much as you are able to especially in the early weeks of this condition. Ask for advice from this forum and you will get very good advice.
As regards the problems with family, may I suggest if it is suitable for you, to go on the PMRGCAUK/ northeast website.They have a small booklet and also a DVD in the shop section of the website which gives information about these conditions and are useful to give to family and friends. I ordered copies which I think my family found useful in understanding this condition and my 'ups and downs' in the early days.
š no I'm exaggerating - all the more common one I suppose - memory, swelling (lymphodeama) itching, weight redristribution, chipmunk cheeks, depression, major early morning sweating, sleeplessness, bruising, ligaments affected. But the great thing is I don't have that terrible pain from the PMR! š
Ah yes - but a lot of those can also be attributed to PMR, especially when it is untreated! So the pred side effects are starting from a contributory baseline!!!!!
I do empathathise many of us have felt like you at times but there is light at the end of this tunnel of pmr even if it is only a bit of a wobbly glimmer at times. With all good wishes that you will soon be feeling at least a little better.
Hello Slosh, I am really sorry that you are feeling increasingly depressed and even suicidal. I know how awful that feels having been there myself before diagnosis. I fear it more than any other symptom. You must go straight to your GP and be completely open about how bad you are feeling. He or she will be able to suggest either medication or some form of talking therapy. I am ultra sensitive to stressors in common with many others with our disease. A family fall out is just about the worst. I can end up feeling utterly worthless with all the details going round and round in my head. I am guessing that this is what has tipped you over the edge. It is the absolute pits!!!
I think I can recognise moods caused by PMR - my depression lifted when I felt affirmed by the diagnosis and I think steroid treatment gave me a lift. I have had angry moods and peculiar moods over the course of my treatment with Prednisalone. I think I can separate them off from "real me" and kind of acknowledge them and nod them through. One solution for me is putting myself to bed as a sleep often helps. I keep banging on about my step counter and my walks around the leafy streets of Sheffield. This has really helped everything. The step counter makes me go out to meet my daily goal. I know you can't be bothered but try to have a little walk and a sleep each day. Have you got someone to talk this through with ( apart from your crew here I mean). That helps to get things into perspective. Does your family member know that you are ill? They should cut you some slack!!!! People have stress in their lives that has nothing to do with us but with family we can become the target for venting it, I certainly am and it is hard!
Sending you love and care and a great big hug.
This too will pass I promise.š¹šŗšš·
PS. Try replacing the awful, snarky voice in your head that tells you negative things with a kind voice that tells you how deep down lovely you are!
Hi Sheffieldjane - thank you for your thoughts and advice. With all the emotions I sometimes feel like Im nuts! I've never been an angry person - but boy have I had angry emotions.
As indicated in the replies you have had so far many of us can relate to the depressive aspects of this illness. But it sounds like you have enough going on that even without it you would have lots of challenges - and more than your fair share !! Many of us will also understand all too well how bad things can feel when family members not only aren't as supportive as they might be - but actually add to the difficulties and emotional strain you might be feeling. It feels really hard to be so disappointed by some people's attitudes/behaviour - I have been there myself - but things can and will change - even if 'by themselves' as time passes and other things change - so try not to despair - change WILL come - that is the nature of life itself.
The impact of this illness is also enough on its own to cultivate depression and with Pred I have also experienced quite a range of sometimes surprising emotional 'ups and downs' - it can feel roller-coasterish and I have often found myself teary and anxious over stuff that I'd normally have coped with quite easily. Add to all of this the fact you are a 'live in carer' for someone else WHILE you really NEED some serious support and care yourself - then it is not surprising you have felt so 'low'. It seems to me your responses are far from 'dramatic' but quite understandable.
As others have suggested you really do need some support - we can't do everything alone - and speaking to first your doctor about how you have been feeling and then maybe someone else with the right professional skills - would be a good first step. Don't procrastinate about this - you could do with that invaluable support right now.
This forum is such an excellent resource as well - so many great people here who are clearly very concerned about you and feel some true 'responsibility' to make sure you get the assistance you really need at this time. So do this for YOURSELF - we are all behind you wanting the best possible outcomes for you in the future. Stay in touch and do let us know how you are doing.
Timmy - thank you! I am do touched by your reply. Yes this group is just amazing - Im not sure what I would have done without all the expert advice from the 'older' and consequently wiser PMR/GCA sufferers (meaning those who have had it longer and have more experience) and then those who are also so kind and supportive. Thank you!
No problems Slosh - 'Rimmy' is anyway just a nickname - after our canary aka: 'Rimsky-Korsakov' - our last canary was 'Pavarotti' and both have been amazing singers - and for me music is always a great distraction ...
Slosh I care. The best advice has already been given. All I will add Is I have had this twice over the last 15 years and know that you will get through PMR and feel wonderful again. Be grateful for tiny things until then.
Your journal idea is great! Just put in all the happy moments, so that when you feel bleak you can realise that not everything is bad. Thinking about you a lot slosh and routing for you in your struggle.
My husband quotes a bit of Brecht to me when I feel bad.
" the water that was once poured into the wine cannot be poured off again, but you can make a change with your final breath."
Slosh, family fall outs, especially with your children, cut so deep and are so hurtful because they are the people we rely on to be 'with us' and it is shocking when their anger turns on us with all the accompanying blame and savage language. It feels like a physical assault when it comes out of the blue, and we have few defences to marshal. I so agree with SheffieldJane that it makes you feel utterly worthless and it's the pits, worse when they give you no chance of a riposte or even a voice at the time. So up go the preds, the sleep goes haywire, your inner voice replays/replies/pleads silently and because all this is emotional there is no rational solution, you can tell yourself just get on with it, but all the while it's chugging away in the depths with your responses swinging wildly from utter sadness to boiling anger .. doesn't PMR just love this ... lots of us, I'm sure, have been through it, and as people have said here, it's essential to go and talk to your doctor and/or a good friend, the simple act of sharing is cathartic. Truisms, but it doesn't make it less true... Do you feel a little better after reading replies here, the sense that this unseen 'family' are concerned for you and are sharing things they probably would never admit to normally? I hope so.
All been said really but just to assure you again that you are being listened to on here and many understand where you're coming from and have experienced similar. You made the first step of admitting how you feel on here which is a big step towards recovery. If,as you say, you do feel suicidal then I really would advise you, like others have, to go to your GP, sooner rather than later and explain exactly how you feel. There is no shame or weakness in that, it's due to loads of circumstances - again many of us have been there and medication can really help along with many other strategies but until you feel more on an even keel it is very difficult to think straight and move forward. Do let us know how you get on and know that encouragement and support will be given here. Best wishes Jackie x
Slosh, I'm so sorry you are having such a hard time. Reading the replies makes me realise again what a wonderfully supportive forum this is, so please keep posting.The only thing I'd suggest is something that helped me when I was in a very bad place for a long time. It was the mantra 'one day at a time'.
Basically, when you wake up, think about what you have to do / achieve TODAY. Just today. Not tomorrow, not next week, not next month, ignore them completely. Don't let your mind even consider them.
Get through the day one step at a time, and when you go to bed you'll realise you've achieved something genuine, you've got through the day and you've succeeded.
Repeat tomorrow and the next day and keep doing only that until you feel stronger, strong enough to look a bit further ahead and a bit wider horizons. It will happen.
Years ago, the World Health Organization sent out a survey to the physicisns in the U.S. They were looking to see where pharma money needed to go. The results were Major Depressive Disorder was the 4th most common illness in our country. Realizing that they worded the questionaire wrong,(gerd and other easily maintained illness topped the list), they sent it out again, but asking what was the most disabling illness. Major Depressive Disorder came in at #1. Yes, #1. More disbling than stroke, MS, heart disease, etc. Having suffered this disorder, I can agree. It's H*LL. Some things that helped me: mental health professionals that I saw regularly. They made me sign a contract that I would not harm myself, that i would get up, shower, and leave the house everyday, i would journal, i would get plenty of rest, live as much in the moment and not ruminate about the future (which I was doing) and to reach out to supportive friends and family and not isolate myself. My rheumatologist spoke to me about the possibility of becoming depressed. I think that whenever one's life has been disrupted in a major way as ours have been, there's a strong chance of depression. We must recognise it, not be afraid --or ashamed--to ask for help. Just because people cannot see depression, like they can see a broken arm, doesn't mean it's less real. (My brother in law told me to 'just get over it'. Idiot! As if I wanted to live in that Hell.). You've taken courage by mentioning it here. Please take the next step and discuss with your physician. From someone that told her Psychiatrist that he would not be able to get her/me whole again as I was the sickest person he would ever treat (how narsistic is that?), you can feel hopeful and happy again. My prayers are with you.
Oh thank insight329 for your story and encouraging me. It's because we see mental illness as all just 'in the head' we don't realise that it's chemicals (amino acids) - someone wouldn't tell a diabetic to pull themself together,
It's not all 'just in the head' though. PMR/GCA symptoms and Pred side effects will really get you down but, given half a chance, we gather our resources together and 'combat' them the best we can. That struggle can bring out the best in us. But being rejected by other people, especially our own family and our kids most of all, is the most undermining thing that can happen - and we often aren't able to talk about it - which makes it 10 times worse. I'm glad you were able to talk about it here, and that so many others have identified with what you said and have been supportive. From your replies, it seems to have helped a bit. I do hope it has helped enough to make a difference, and that you are able to move forward. As someone said - one step at a time and then one day at a time. My thoughts also are with you.
Thanks BonnyQuine - everyone has been so kind and it makes me feel better and that perhaps Im not going nuts (as I often feel I am) with emotions that are so foreign to me an all over the place.
Where abouts are you? If you are in England I might be able to access some self referral info for support with depression / anxiety under NHS. I am quite a proactive person and, recognising early signs of depression including a shorter fuse for coping with every day frustrations, I have just self referred. Having completed and sent the online form, within days they contacted me to complete an initial telephone assessment. By the end of the conversation they offered me appropriate support package which will be six X half hour phone calls, as I don't qualify (currently mild depression and anxiety) for face to face. They have different packages at different levels that suit your needs and lifestyle.
I used them ten years ago for Cognitive Behaviour Therapy when things got tough and this support, over six weeks, was very effective and has seen me through till now. Let me know if you are in the UK and I will send you info.
Please note that a self referral is not a substitute for GP advice, and I agree that you should prioritise your own needs for an urgent appointment. However a self referral might help psychologically. It certainly helped me to feel that I was taking a bit of control back by being proactive.
This group rocks - you are all so very kind and supportive and to a total stranger.
I have always been so tough, been through a lot of very tough stuff in my life but have just got one with it - sometimes just hanging on by the skin of my teeth - but coped nonetheless - however at the moment I'm more than a little week - pretty broken actually.
Hi Slosh. I have specific contact details for Essex. So, since I don't know your precise location have been on to net to see quickest route for you to access this service in your area.
The service is IAPT NHS. (IAPT stands for Improving Access to Psychological Therapies) If you type this into google adding SELF REFERRAL and your LOCAL AREA this should then take you to the relevant web page for your locality. So Google...........
IAPT NHS self referral (town, city)
If you don't get any joy get back to me with town, city and I will try to get specific contact details for you.
Slosh I have no sage advice for you as so many here have already provided lots of great information for you but I can give you virtual hugs and love ššš the only other thing I could impart is to please take care of yourself first. Like the message the flight attendants give on a plane before departing. The one about putting an oxygen mask on yourself before helping your child. You have to be ok if you're going to help others and it's so easy to lose yourself when pain is unrelenting and constant.
People here are wonderful and amazing. You're not alone. You're never alone. And thanks to the worldwide nature of the internet and time zones, it seems there is always someone here to talk to.
Slosh, get down is not going to help. I know how you feel, been there. I think that most of us have been. I has down after my flare, had been on 7 mg had to go to 30 mg to get any relief. It was so back my wife had to roll me in a wheelchair for a doctor appointment. I started walking very slowly with a cane a little, then take a rest and walk a little more. Improving each day, starting to realize that I am on a journey and put a smile on my face, happy to be PMR pain free, looking forward to skiing in the mountains again this winter. Think ahead, think positive, try and put a smile on your face. I think it helps! š
Thank you - yes I also couldn't walk without help six months ago or turn in bed unaided and so I am very grateful for the fact that I don't have that extreme pain and weakness. I was depressed then because of the disease / pain etc but this is something different - the emotions are so extreme - but you're right - I will get there.
I think part of it is the Predinisone, but think how bad it would be without it. Think ahead, set a goal, I do for each day and long range, ski this winter. Short range get out there and get a number of steps in. Which I going to do now. A good walk in the sun with a smile on my; I think it helps! š
I'm sorry to hear that you are having such a rough time, I can't say for certain and it might be a coincidence but my depression started to lift after I took vitamin D, if you are not taking it already it might help.
Thank you - yes I've had years of if - kept down and bottled up - keep going and all that.
I am feeling somewhat better. Gone off wheat and sugar and for the most of it have felt a little better all round - today a bit of a wobbly - but it will pass. Thank you for you kind message.
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