Hi I was diagnosed with Polymyalgia rheumatica November 2017., I am really struggling as I was very active before this.. I feel my mental health is taking a down Ward spiral no energy and feelings of suicide I feel so alone my family try their best but have no understanding of the day to day struggle., have joined the group for support and more understanding of this debilitating disease
Feeling isolated : Hi I was diagnosed with... - PMRGCAuk
Well done for putting pen to paper, and coming here to this super forum. I , as a PMR sufferer for some while, can assure you that you have come to the right place, and that you will, for sure, get lots of support and understanding.
You WILL get through this, even though you may not be able to see it at the moment.
Stand by for the replies which will coming to you shortly.
I am so sorry you are feeling so isolated and depressed. The first few months of any long term illness is very hard, especially when it is an invisible illness. Pmr And GCA can both cause depression too.
Please speak to your Dr about your feelings. You need some help and perhaps he can refer you for counselling. In the meantime please read through old messages on this forum and stay in touch. There is usually someone somewhere in tne world awake at 2am when the dark thoughts won't stop running through your head. Where are you in the world? There are several support groups in the UK. There are very supportive knowledgeable people on this forum and there are things on the pmrgcauk pages that might help your family understand.
Stay in touch🌻
Thank you for your kind msg and the information.. i am being treated for depression and seeing a councillor.. still feel so isolated.. I live in Scotland., really glad I have joined this site also o will check out pmrgcauk. Best wishes
Here's the Scottish arm.
You will start to feel better.
Thank you for the link much appreciated
Don't forget that the Samaritans are always at the end of a phone. I have used their services in the past when at the end of my tether.
Thank you again
Welcome to our community, Rudijodiebryce. Finding us - and I mean our Aunties and Uncles (experts) and the compassionte members of the community - will help you navigate the confusing symptoms of PMR. I truly believe those that don’t have it can never fully understand how we suffer. After all, we all ‘look so good’. So your family and friends may ‘get’ some of it, they won’t get it all. However, we do!
The only time that I had thoughts of suicide was just before getting diagnosed. ‘I don’t think I want to live if I have to live with this headache.” Since then, suicide is not on the table, but I do grieve my past life. I think everyone of us have had to go through that as all of our lives have had major changes due to these diseases. Please know that you can and will get through this. It’s not a death sentence. You will have a ‘new normal’, but you may find that once you accept this, you may find that there are blessings to be found, if you are open to seeing and finding them. But, yes, you’ll be challenged. And that’s where this community will help. And in a big way. So.... don’t be afraid to ask your questions. Join in on discussions. And know thst you are no longer alone in your journey.
Sorry to hear you are having a bad time.
If your family are willing to learn, let them have a read of this, it may help them understand your illness and its repercussions a little better - will help you as well hopefully.
If you also have a look at the pmrgca website you will find details of support groups, there may be one near you - if you can just chat to someone who knows what you are going through it does make life easier.
However in the meanwhile please contact us, there's always someone about no matter what time of day or night.
I have just read your very helpful and understanding tome which I have forwarded to my GP brother-in-law in Wales. He shows great interest in GCA and the dsns reduction method... hope for the Welsh then!!
Thank you, for your msg the tears run from my eyes .. mostly from the kindness and the relief that others understand .. best wishes
DorsetLady is one of the Aunties. Listen with great care to her responses. She won’t lead you wrong.
Understand the suffering you are going through I was diagnosed August 2013 could not move the pain in my whole body was horrendous within days of starting 25mgs my symptoms improved rapidly I have reduced to every other day1mgs so the next week or two I should be down to zero best wishes so there is hope fo fellow sufferers to get Over pmr.
Hey Caroline, welcome aboard the good ship Poly Support! We’d all rather be elsewhere, but seeing that we have no choice in our decisions to get PMR, it’s a really good place to be.
You’re early days, and it does take some time to get your head around. I think we’ve all railed against the ‘disease’, I know I did early on. I decided it was mind over matter at one point, and boy did I pay big time for that! I did a damn good impression of a destuffed rag doll for 3 days after that escapade.
Does it help to know that PMR and depression go hand in hand? It’s an oft overlooked symptom. It will ease, just be sure your GP knows about the suicidal thoughts (I guess he does as you’re having counselling) I believe it can be a side effect of steroids. But you’re going to be lowering your dose, so hopefully it will decrease soon.
As Insight329 pointed out, you’re no longer alone, and hopefully that in itself will help you through this long and winding path. It’s not all plain sailing, but having friends to compare notes with does help.
No energy is typical. For me it’s the most irritating thing. I can’t plan to do anything without also factoring in my pre and post rest periods. But it does allow me to do some things and socialise a bit. I only socialise with people who try to understand and accept my issues, I don’t have the energy to deal with what Sandy1947 recently described as ‘toxic’ friends.
Read lots of the old threads, they’re full of hints and tips, and join in, the first post is always the most difficult, and you’ve achieved that so well done. You may now rest for the remainder of the day
Thank you for your kindness., support and for sharing your experiences., I am overwhelmed by the kindness and caring words from everyone in the group !!! It definitely helps to talk to people who totally understand it’s such a relief as I feel am loosing my mind ..after all your replies I have decide to contact my doctor and tell him exactly how I am feeling. Thank you again so glad I have connected with such amazing kind people
Contacting your GP is absolutely the best thing to do. Have an honest and open conversation with him/her. If necessary bring on the tears, that’ll make them sit up and listen maybe write yourself some bullet points before-hand so you don’t forget anything.
People here are very kind, and each of us was in that quagmire of confusion and not knowing which way to turn. Having received solace from members during our troubled times, it’s nice to be able to do the same in return.
You already sound a little more upbeat and are developing a plan for your first steps forward. And may I predict that your next counselling session is going to be fantastic, constructive and you’ll be able to ‘let go’ a bit Do come back and tell us of your progress.
I hope things ease for you soon, and as others have said, keep in contact on this forum, we understand this awful disease, family and friends just don`t "get it!"....it`s a waste of precious energy trying to explain to them....don`t push yourself either for them, I know from experience...it makes you worse! Onwards and upwards...spring is coming...(or so they tell us!)
Changing GP and getting a diagnosis with immediate steroids stopped all dark thoughts for me - I felt like a dying beached whale and utterly helpless. I am no longer alone as I pore over this site and pick up all the information, books, articles and so much more. Hope you feel supported and no longer isolated.
Scotland has its own charity and they have a few support groups and a helpline - so do get in touch with them and see if you can get some company on your journey. The system in Scotland is slightly different from England so some of the things we say on the forum ay not apply. There are a few members here from Scotland and a few on the patient.info forum. Maybe someone lives close to you.
Hi Rudijodiebryce3, So sorry to hear that you are struggling. I believe, I understand how you feel (as I suspect most people on this site do, as well). You are not alone!
I too was diagnosed in November 2017 with both PMR and GCA. Before my diagnosis I worked, I volunteered at the local hospice, I had lots of friends who I socialised with... all that is gone. There is just no energy or stamina in me to do any of the things I did before PMR/GCA.
You're right, both of these diseases are cruel and hideous! It is bad enough they mess up our body, but the isolation and loneliness they cause is enough to bring us to our knees.... but don't despair. And PLEASE seek help if you feel you might possibly hurt yourself. It is a natural feeling to a seemingly "losing battle," but you are NOT losing and there are options.
We all have good days and bad days... and it's a balancing act of appreciating and treasuring the good days, and just getting through the bas days. You can do this.
I write a blog about being ill.. maybe you can try writing each day about your feelings towards the disease, your isolation, loneliness, etc.. I find writing helps gets all the "bad stuff," out of my head and I feel better. Here is a link to one of my more desperate ones... I felt much better after writing it!
If you need an ear or a shoulder, I am available. As I am sure anyone on this forum would be for you... but if things get bad, please seek professional help.
You are not alone!
Thank you for sharing with me and your kindness .. I used to work in mental health as a peer support worker i loved my job., going from being very active to hardly getting put off my bed finding it so hard to adjust!! I am soaking up and listening to you all which is definitely going to help me get through this.. thank you from the bottom of my heart
Ohhh that must make this even more difficult for you... I'm so sorry. I used to work as a Ward Administrator for the NHS at the hospital and as volunteer as an End of Life Companion and Chaplaincy Team Member at the local hospice... so we are both used to caring for others and helping people. Since I became ill, I try to make "head's or tails of this" and the only thing I can come with is that the Universe (God, The Divine, Gaia, Buddha, Muhammad, whomever) is trying to get "ME," to care for and look after, only "ME." So to do that, I have had to SLOW DOWN and become totally comfortable being with, relating to, listening to, honouring, and taking care of ME. Hardest lesson I have EVER had to learn and I fail about 80% of the time. It is just so much easier taking care of and giving to others!!!! But again, YOU can do this! Breath. Relax. Rest. Stop asking why. Let's just dance.
“The only way to make sense out of change is to plunge into it, move with it, and join the dance.” ~ Alan W. Watts
What a fabulous quote! I love reading your posts, always cheer me up.
Unfortunately my dancing isn't as "Saturday Night Fever" as it used to be, but in my head it is.
Hello Rudijodiebryce3 and a very warm welcome to you. Everybody on this site will understand the feelings you describe only too well. I am so glad you found us. Please tell us more about yourself.
If your suicidal feelings become overwhelming you must tell your GP. We are not ourselves right now and often need help.
We often talk about how our nearest and dearest do not understand “ but you look so well”! Etc.
It has been a rotten long winter. Let’s hope the coming of spring lifts us all.
Thank you for your kindness I am 52 and now feel about 70., I have. 3 grown children who are fantastic and mean the world to me.. they are understanding but do not fully understand I have a partner of 6 years who I do not live with he is supportive but like my kids do not fully understand.,
I just feel so lost at the moment I used to be so active and my work was supporting others., I am going away to be more open with my Docter., I really am overwhelmed by everyone’s kindness and support thank you
I have had PMR diagnosed for two years with plenty of time to reflect. My work has always been directed towards helping others too. In fact I would say that, that was my identity. Within my own family and amongst some of my friends too. So I can identify with feeling useless, pointless, directionless etc.
Can I gently suggest that it is your turn now. All that caring, loving attention is needed for you now. This disease needs careful care, from rest, to diet ,to appropriate exercise. It feels like a full time job. Stressful situations and vexatious people have to be avoided as much as possible. There is a lot of great information on this site about diet ( carbs and sugar bad) exercise ( walking on the flat, gentle yoga, Pilates, swimming, water aerobics). Rest before, in the middle of and after anything strenuous. Nap every afternoon. Avoid gloomy films and books - they just feed the depression. Actively seek out the funny and the cheerful. Notice nature, I mean really notice, it is so busy right now.
As for the vexatious people, ditch them, you know who they are.
You will soon be tapering down your steroids - this needs meticulous attention.
You will get better, this will pass and perhaps this all does have a point. 🌸
I was 56 when I started this malarkey and felt at least 90! So if you only feel 70 you’re doing OK!!!
Active and helping others is a theme that runs deep on this forum. Hidden is quite right, we have to reprioritise and put ourselves at the top. Learn to say “I don’t think that’s MY problem”. Hard one that when it’s our normal default position.
I have just returned from my first PMA support group meeting (details taken from PMA website) It's amazing how it helps, just talking to people with the same issues as yourself. Being offered help and advice and probably most of all myth busting. It was the group that recommended signing up for this site. Best wishes Jud
Thank you Jud you have all been so kind ., so glad to have joined up with such caring people
I'm reflecting on your remarks of our kindness. So many of us work/worked/or volunteered in a 'serving others' profession before we got these diseases. And then had to cut back or completely stop due to lack of energy, pain, etc. Being able to help someone again (even if via the internet), brings us joy and a sense of what we were/lost. It's a good thing that this is the internet. If you had asked us in person, we'd probably be elbowing each other out of the way to help you.
In all seriousness, don't ever be hesitant to ask questions. There are so many here that have dedicated themselves to helping us with these illnesses.
Just be wary of Uncle Mark (Benjamin). He sometimes is known for 'pulling a leg, or two."
A big welcome to this group, probably one of the best groups around for those looking for help and advice, if not THE best! You will no longer feel so alone now you have found us and you are probably already feeling much better having read all the lovely replies and messages you have already received. Those who haven't experienced what it is like at this stage of PMR and/or GCA can't possibly understand - we do! But you WILL get better believe me as one of the many who have come out the other side in one piece!
There is a very helpful book, Polymyalgia Rheumatica and Giant Cell Arteritis: a Survival Guide written by Kate Gilbert, ex-Chair of the Charity, PMRGCAuk, and a past sufferer of PMR. It is available either on Amazon or direct on the following website: pmrgcauk.com - you never know, perhaps your family will also read it and better understand what you are experiencing.
If you are anywhere near a PMR local support group where you live in Scotland, then do go along - you can be sure of a great welcome and a lovely chat with members who can help from their experience. Meanwhile, stay with us and any time you feel the need of some company, albeit virtual, there is always someone around. Stay positive, Caroline - it does get better.
Just to add - the NE support charity shop
sells a DVD about what PMR/GCA does to us. Maybe easier to get people to digest than Kate's book which DOES require reading. PMRGCA NE also has a much shorter booklet which is part of their joining pack. Some of this stuff is also available from the Scottish charity now.
Yes, of course, but didn't want to overload Caroline too much at this stage - she's already been pointed to loads of helpful info.
My point is that Kate's book is a read - it took me a few days and I usually get through a book that size in hours. Even with PMR and fog...
I think getting the DVD and having a ‘viewing party’ would be something I would think about if I had family that would be involved in my care. Questions could be written down and then asked here. I also think Kate’s book is a wonderful resource. I’ve referred back to it multiple times.
Oh, I'm surprised! When I read Kate's book, I found myself wishing that it had been around in my early days. A lot of people have said how very helpful they have found it and some have said they even resort back to parts of it from time to time.
Thank you so much for all the information and your kind words ., I am so touched by the suppprt and kindness overwhelmed with the kindness from so many people., so glad that I found this sight it will definitely make such a difference to share and learn for you all., I can’t thank you all enough
And just so you know, healthunlocked just did a survey that included all of their communities. (PMRGCAuk is just one of many.). They asked members what member helped most in their treatment/provided useful information. Out of the thousands of members in all of the communities, two of our members were recognized: DorsetLady and PMRpro. You (and we) are in very good hands here.
You have found the right place to be. Here you will find support and guidance. Practical tips and recommendations. Lots of laughter along the way too. It can be a bit a soap opera with various characters. We discover snippets about members lives. Trips away, and how they are negotiated. Children and how we manage to jiggle them. Animals and how we manage to juggle them. Yes it’s like an ever so bonkers extended family. We have spelling mistakes that cause giggles, a butler called Parker and a Dorset Lady. We are fortunate to have members around the world who will respond around the clock with wise words and warmth. Welcome 💐
So sorry you are struggling. The best advice I was given 9 months ago at diagnosis was to keep moving. That really helped psychologically. PMRPro told me to get out from under the covers after my afternoon rest and take a short walk. It helped. I find physical therapy, Tai Chi/Quigong, Zumba and weight training helped my body and mood. Gradual improvement lifts your confidence. Journaling, a one sentence mediation also helps. Message me if you want the sentence.
Yesterday my dog groomer said I look much better...less frail and exhausted! There is hope. Read uplifting quotes, watch comedies, take drugs, stay in pj’s and realize forum friends are there for you!
Hi and welcome to the group. It will help. I agree with Sandy. If you can move do so. I started an adult beginner tap dance class. It is VERY basic where were bang our heel and tap our toe . No hops or leaps. It has been good for my brain and hopefully my bones and my balance. Also here is a link to my relaxation which should give you some peace I hope. Keep contacting this group and any outside group you can find. And always call of help if you are feeling suicidal. Please! sites.google.com/a/apps.hop...
Hi Rudijodiebryce3, I have been on steroids since 18/3/16 for PMR. I have been up and down with flares but currently on 16mg a day following Auntie Dorset Lady's reduction plan which has enabled me to get from 30mg to 16mg with no further flares. I am no stranger to the "black dog" of depression. Steroids made my depression far worse. In fact my antidepressants have been doubled in the time I have been on Pred. The trick is to take the help offered and be gentle on yourself. Talk it over with your gp there may be some help they can give you to help manage this undesirable side effect. Personally I use a lightbox daily between Sep and Apr, take antidepressants, cbd oil and practice daily meditation and mindfulness. I am not superwoman so it is a struggle at times but knowing "this too will pass" really helps.
Welcome to our group where you will not feel alone and hope you are feeling a bit lighter soon xxx
Thank you for you kind words I have been on steroids since December along with pain killers and antidepressants the steroids have helped with some of the pain.. just feel that o have lost the plot been getting frustrated and so sad., but all the kindness you have all shown me has definitely touched me thankyou so much
All the best
Welcome to our group even though none of us want to be part of it! Please don't feel you are alone ,there is always someone here who will reply to you.You can ask anything,the PMR 'aunties' are so helpful and have lots of wisdom.
Family and friends do mean well but they don't get it.I have been known to say many times over the last 2 years ''I don't feel like me anymore''.They just say'' well you look well!'' arggghhhh.
Take lots of care of yourself
big hug Sandra x
Please cheer up I know excactly where your coming from I too was diagnosed in 2017 and have had a terrible time with same feelings has yourself but you need to stay positive and think of all the good things in life eaiser said than done I know. I have a young family around me and I want to see them all grow up and do well in life.
I also have to work that bit harder at work and push myself has I'm far to young to consider retirement.
I find it hard to do all the jobs I need to do around the house and I just love diy,I started a full bathroom refurbishment but have had to get some professional help to finish it off because of fatigue and lack of energy and strength to complete the job.
Just take each day has it comes and don't be afraid to ask for help or talk about it.
Hello Rudijodiebryce3. You’ve tapped into the most compassionate and knowledgeable forum. I am fairly new to this and filled with mixed emotions that can overwhelm too. You have all the human support you could hope to find right here! Don’t feel alone!.,
A big Hug for you Caroline !! What more can I add, the rest have said it for me, just to reassure you there will always be someone on this wonderful site to help you through your day. We need each other and we help each other, always remember that when you wake from a restless night feeling so overwhelmed with it all. Take care.....Maz x
Losing a previous lifestyle especially if you've been active and useful is really hard to accept. Its like a bereavement. No wonder we feel depressed to begin with. It took me quite a while to get over being angry and miserable before I learned to accept the situation. I still get fed up, especially when I have to cancel something I want to do!!
Can you remember how you felt when you helped other people? Now its pay back time. Give people the pleasure of helping you. You are still doing them a good turn by letting them feel good about it, just as you would have felt good helping them. I've had to learn to ask for help having been a very independent widow, living alone. I've had to realise that I'm not being a burden when I accept offers of help but that I'm actually doing the helpers a good turn instead.
Hope you soon feel less isolated. Lots of virtual hugs and encouragement,
Hi, I have been diagnosed recently with PMR and a very active person so it is hard to get ones head around this . Plenty of support available with this group.
Welcome... I have GCA and, from reading all the posts on this wonderful site, I feel humbled by the horrible effects pmr has on those who suffer it... you've certainly found the best place to read, learn, discuss and feel supported here..best wishes
Hi, I too was diagnosed with PMR on November and up until I retired last April was working full time as a nurse and very active. I find socializing draining and am learning to prioritize who I see and when. I can do a bit more now than before diagnosed and pace myself easy day. Please make sure you visit your GP for help. I am on the opposite side of the world and awake if you need to chat - 69 year old who some days feels 100 - Jan
I also am (was) a nurse. Was a busy mom and active physically as well as socially. Your comment regarding socialising taking energy reinforces my feelings exactly. It's odd how most conversations seem so "trite" to me now. I just listen and seldom voice an opinion. One comment that's hard to handle is "Do you still have that ?" (PMR) I'm not really anti-social but for now I budget my time and energy carefully because only I know how much I have to spend.😉
Please hang on in there!
Things will get better and in a few years (or less if you are lucky!) you will look back on all of this from a happier place! It is an incredibly annoying and debilitating illness- but you will eventually be cured. The steroids are a pain in the proverbial, too, but recent medical evidence suggests that the side-effects seem to be less common than doctors had once supposed.
The dreadful weather doesn't help, but the clocks go forward next weekend- and then it will be Spring!
Be gentle on yourself- I was determined to get off the steroids as soon as I could, but will power alone won't make this happen. It's best to try to go with the flow. I use to do Pilates and aerobics several times a week- but now it's gentle yoga! It will all come back eventually, I'm sure.
Family and friends don't understand- how could they? - so you need to spell it out for them.
The beauty of this forum is that the people here really do know how you feel. Some have been on the same road and have reached the end and are cured. That's going to be you (and me!) some day!
I think I will hold your hand, and we can journey this together..... I have been really struggling to adjust to this ... my job is a dog walker, and many many days I drag my sorry arse around fields or forests... sometimes I just cry whilst walking... I can't wait to get home to my safe little world... my friends of over 20 years do not understand, and have got annoyed and impatient with me.. it is a lonely place to be....
BUT, I tell myself to think not of what I can't do, but of the things I can do.... sometimes I have to say this over and over again...
I rely heavily on this site, I dip in, and know I am not alone..... hugs xx
Hi Caroline, here is a giant virtual hug. !!!🎊🎉💜💝
You are going to be fine...it just takes a bit of time.
I remember being in the same place where you find yourself,...the best advice I received was “to treat myself the way I would treat a dear friend who was experiencing these feelings”. You would extend a hand of acceptance and love to that person, and and tell her she is going to be fine”.
Giving ourselves permission to stop “doing everything”, and learn to let others take some of our burdens, is one way to ease the overwhelming feelings of this disorder.
It is true that prednisone and PMR can wreck havoc with your feelings and your sense of well-being. Please know you will survive this situation, and and you will come through this difficult time well.
For now, give yourself permission to feel crappy...sleep as much as you feel need to do... and dont criticize Caroline...for anything!!!
pamper yourself in your favorite ways.. chocolate, flowers, any treat you desire., you are perfect and special, we love you, and you deserve being supported and cared for, any way you desire.
We have your back .
Kind regards, Jerri
How are you feeling? Someone mentioned pampering yourself,even if it's staying in bed,doing your nails,reading,having tea and cake...I find it helps..or get into the sunshine if you have any up there!😄x
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