Iv been left 6 yrs in pain by a lazy doctor who wouldn’t refer me to anyone, all she did was put me on strong pain killers, when seeing another doctor I told her my pain levels were high due to having my pain killers stopped, to discover that simple bloods could of given her a clue along with other symptoms that I had PMR, when other symptoms arose she said it’s all CRPS, I took the steroids2 was ago but became ill from them so stopped, I’m concerned that due to this not being treated for 6yrs what damage could be done, I also have a 5 month wait to receive any help from a rheumatologist also trying to pack a house to move, my biggest grip is I had to give my job as a care assistant up which might of been prevented if picked up at the start, sorry for the moan but feel so let down but I’m trying to stay positive but proving hard, hope you all have a pleasant evening
Disappointed : Iv been left 6 yrs in pain by a lazy... - PMRGCAuk
Disappointed
Welcome to the forum Nettie. You sound as if you’ve had a rough time.
Was it the other doctor who diagnosed? What dose did he start you on? How long did you take them? What were the adverse effects that you could not tolerate?
Thank you and thank you for reply 😁 it has been a very rough time.
Yes it was the other Doctor who diagnosed me and only after 3 visits plus blood test, I was started on 20mg daily, I had mouth ulcers in my mouth after 4 days, my headaches got more violent plus I’m already fighting severe depression and anxiety and it’s only been a few months since my suicidal thoughts have lowered, I’m so scared of having to fight something that I’m already struggling with as the NHS mental health can’t help me as they don’t offer their therapy I need, on top of that upset tummy, I joined here to try and convince myself I need to do this but my fear is so much worse as I did try to take my life last year, I need to look at pros an cons then chat with GP I think
I would like to add the GP who didn’t do a thing has been my GP for almost 20yrs so knows me very well as I live in a small town so makes it worse and I believed her and trusted her 😢
Where do you live in the country? Perhaps someone can recommend a Dr.
I have a new Doctor now which is how I got the diagnosis 2 wks ago, she is brilliant, I’m angry that my other Doctor didn’t look into it as I was told it could be fibro but she still didn’t listen and neither did my pain consultant, let down an understatement
Ensure your new doc is fully aware of your suicidal thoughts please 👍🏼
I will do but when I told my last doctor what I had done one very bad day she said oh dear an that was it 😢 she’s dumped now for the support of a new one
Well you’ve already identified doc number one as useless, and I’m sorry you were treated like that. Doc number two needs to know if she’s to help you balance your MH needs with your PMR needs.
Partner a good listener?
Do you have Samaritan type phone numbers to hand if you have another ‘very bad day’?
Doc number two has listened and acted so far, let’s keep faith that you’ll be listened to over other issues.
How do you feel today? A wee bit brighter with forum support?
Remember there’s the messaging system here if you want to privately message anything that you don’t want to put on the open forum.
Oh I get this! My GP that I've been going to for over 30 years completely missed my diagnosis, despite me being in her office crying as I could not use my arms and barely walking!! I totally sympathise with you about taking the Pred if you are worried about depression. You may well find if you can move better you will feel better in yourself. I hated going on it, but I literally could not move and in agony like all of us here. Stay in touch here, you will get the best support from everyone.
Are you aware that PMR and depression go hand in hand? Whether the PMR inflammation causes it, or we get depressed because we feel so poorly, who knows? And you’ve had 6 years of it with an unsympathetic GP.
Anyway, you’re not alone now, you’re part of the PMR gang. So draw up a chair, grab a cuppa, and read the forum for ideas and inspiration. Ask questions, air worries, there’ll always be someone around the world listening 24/7. Then hopefully you’ll glean some good info to chew over with your new doc (dump the unobservant one! 😂)
I’ll be back tomorrow to see how you’re getting on, please excuse me for now, my bed is calling (loudly!)
I am aware now but put my depression down to giving up a job I loved and my son leaving home to go to university which strangely enough is when my symptoms started, thank u, iv been taking a look around and have found some very good info, I hope you sleep well and thank u very much again, goodnight
You have been given good advice by others. I think when our children leave home it is traumatic. My two daughters have gone to Australia ( with my 4 grandchildren). My remaining son goes to Edinburgh University to do his Masters in September. For the first time, they will all be gone and I know that I will feel like a rudderless ship and the black crow of depression will sit on my shoulder.
I experienced depression with undiagnosed PMR, Prednisalone improved my mood instantly. I am 3 years + into this disease and suspect that I went undiagnosed for a long time. In your place, I would give the dreaded steroids another shot. They really gave me my life back and I am prepared to pay the price of side effects like weight gain etc.
My son leaving then having to give my career of 15yrs all within a few months was hell, I felt like I was worthless, even though I have an amazing partner I went down hill fast, how do u cope with them being so far away, I know FaceTime an that is great but gosh Australia, my Doctor knew if I wasn’t able to work I get depression, I have a history of depression and mental health and my parents was bad, my pain consultant told me my depression was causing my pain and told me take paracetamol which doesn’t touch it, I’m thinking about starting again but need to do my own research first then speak to my Doctor again, I wish it was so easy for me to take the steroids but there are many concerns I have and a lot are based around my mental health, the reason I joined here was so I can get more info to help make that choice, it’s full of info I had no clue about and thanks for any trying to help with info it’s appreciated greatly 😁
I can totally relate to everything you say Nettie. Do your research. Nothing touched the pain and disability for me until I was prescribed 20 mgs of Prednisalone. I totally understand the fear of anything that has depression, anxiety and mood swings in its side effects. I can honestly say that I haven’t experienced anything as bad mentally, as produced by chronic pain and stiffness and feeling suddenly so old and finished. Discuss this with a trusted doctor. Stick with us this is an amazingly informed and supportive website.
As for how I cope with my loved ones so far away, well, like everything one day at a time and a lot of on-line shopping winging its way to Australia. I am planning hats and scarves and big jumpers to wrap round my son in Edinburgh. Virtual hugs!
Thank u for ur support it means a lot, ur very brave coping with family so far away but I expect Royal Mail love it lol, my mental health is bad so research has to be a must, but I feel blessed finding here. So much support , virtual hugs back
Oh the ‘empty nest’ and loss of job will undoubtedly have compounded the issues. It’s a type of grief, loss of identity as ‘Mum’, loss of a job you enjoyed, loss of independence, physical and financial, Oh the list is endless..... And the isolation that comes with PMR and reduced social contact in your work is something we understand. But you’ve made the great first step of un-isolating (I make up words as I go along!) yourself by participating in the forum. Loving partners are great, but they don’t quite ‘get it’ like fellow sufferers. How could they?
My youngest boy left for uni before my PMR. I wept! All the way up the motorway home; and was in the doldrums for a while. He came home 3 years later with his degree. I’ll be honest, he got in the way, disordered mealtimes, created washing +++, was generally messy. But as mums we love them to bits. I had PMR then and the extra work was a pain and I told him so! He left again last year, back to uni, it was somewhat of a relief. But I was aware that I would ‘feel it’ and made a note in my PMR diary to that effect. He’s happy, has a lovely partner (also a nurse so we compare notes 😉) and he knows exactly where I am if the going gets tough, which it does. I’m still mum, but we’ve adapted.
I’m lucky that my older boy lives in a flat connected to my house. His partner has become a daughter in all senses of the word. So I consider myself lucky.
Plus I now take language students, (unable to return to ‘real’ work) The young vibe is back in the house, silly laughter and youthful conversation is back 😁 And I get to mother them for a short while (without too much laundry!)
We move on, adapt, find new ways, it’s all part of ‘Life’s Rich Tapestry’.
U got it in one, empty nest syndrome, lost my identity as a mum and a carer, felt I’d lost everything the hardest thing iv had to deal with and 6 yrs on still struggle but a lot of that is due to my own childhood which was horrific so that don’t help, but he is now buying a home with his girlfriend he met in his first yr of uni, hence the move so he can help me more and it will be a fresh start, having a nurse in the family must be great as like u say he knows how u are: I love my boy being home and it breaks my heart when he goes, I also have a daughter who is amazing and is of great support but lives in another part of the country as well, I have found the adapting side not so good but am getting there snails pace lol, thank u for ur support 😁
Hi Nettie, in what way did you become ill? If it was uncoated pred it's common to get stomach problems. Switching to gastric resistant can remove acid reflux from the equation. If you can cope with steroids as you are worried regarding mental health perhaps ask to start on a lower dose. The usual dose is 15mg up to 20ish. I would discuss starting at 10mg with your gp. Get coated then you can see if that helps and creep.up a but to control inflammation. Perhaps seek help for depression at the same time. It would be of benefit to you to get the inflammation under control. It looks like 20mg was too high for you at the moment.
It was more than stomach pains and was told I could take something to help to but I have bigger concerns as posted above, I have antidepressants and have tried to get help but the NHS don’t offer the service I need so have to go private but on limited income as partner is my career it’s not something I have spare cash for, u don’t get spare cash on benefits but have found somewhere that can do a reduced payment but thank u for ur advice
Yes. Benefits don't leave any spare income. 🌻
There are a few others on the forum who have had mental health problems in the past and who still manage well with pred. One was too scared to try it and has tried another drug instead. However - most mental health problems with pred can be managed well when you have good doctors. And as has been said - maybe the depression is due to the years of pain and disability while not diagnosed and will improve once you are no longer in so much pain. I also had 5 years of PMR with no management and it certainly had an impact on me.
I’m hoping to be offered another drug but was told there isn’t any other drug that can help hence starting my own research, I’m still having mental health problems very bad and to scared to make it worse as it’s a massive battle everyday, just need to make sure I’m doing what’s right for me, backed into a corner at the moment but I’m sure things will improve once I can get my head around the drug,
No advice for you, but certainly empathy. I've searched for medical help for help for other medical problem until recent gca diagnosis. I have multiple serious medical conditions but finally found an NP that's been around the block; and I think, is going to be my life saver (and sight saver). What a wonderful place this forum is to get latest info & support. Best of luck to you.
Thank u I wish u so much luck to u as well, this is a great place for help an support, everyone is so nice
You sound as if you feel very alone and upset, and depression is so acutely painful. I’m picking up on the good doctor you now have and who is listening to you. Pred has side effects but you don’t get them all. I agree with the others that it would be worth giving Pred another chance with the guidance of your doctor. Easing your physical pain may well help reduce some of your mental pain too. My son has lived in New York for thirteen years. We chat most weeks on FaceTime, and of course there is Skype. It’s meant he has his own life but I can still share it, such a bonus! I am so glad you have a great partner and are loved. Sending you much warmth 🤗 You are going to be okay.
I have felt very alone and feel very let down by the NHS in many ways, I try natural products but I have food problems as well 😐 my past makes my relationship with my kids leaving home so much worse and hard to get my head around but they still have their own life, we do talk every week on FaceTime but it’s still a struggle, my partner is amazing and treats me like a queen but I want my life back, warmth to u too and thank u
You have so many losses in your life and that means bereavement and all that that brings. Add to that chronic pain and no wonder you feel low. As others have said you have a few positives;- a doctor who now understands, a diagnosis of what is going on without fobbing you off, a loving partner, and the fact that you have had the courage to post on here and be able to verbalise all your worries. As others have said, perhaps give the steroids another go, perhaps at a lower dose. You can’t lose anything by trying for a period of time and keep us informed how you’re getting on. This is a fantastic support group and you are not on your own. Xx
Thank u Jackoh, when ur look at it like that yes I can see it, I didn’t look at it like a bereavement but it’s how I feel, my life has changed so much and I miss it, am going to have another chat with Doctor I just need to know what to ask an air my concerns x
You could just list all your concerns and then put them into priority order so if you didn’t have time to cover everything at least you will have covered your main points. Perhaps try and book a double appointment and you could take someone along with you who you trust to give you moral support and also be another listening ear. My memory is so bad nowadays that I have to write a list and then make notes as they are answered as sometimes I can’t remember the full answer.I think when you are stressed, anxious , depressed or in pain it is very difficult to communicate and take in what is said. If the list isn’t too long you could type it out and have a copy for yourself and one for the doctor to read as you go through stuff- whatever you feel comfortable with. I would say reading your comments they make utter sense and you have verbalised them well so I’m sure you won’t have trouble communicating them to your GP. Also nothing is unimportant as sometimes, I feel, we can think our concerns are unimportant or not significant . I don’t know if you would feel that, if so, please don’t.
Hi nettie66, I have had depression for a lot of years after my dad died suddenly. Add in a husband who broke his back in the fire service and the depression continued. I have taken antidepressants for over 15 years and I can honestly say that since starting pred I have had no changes that affect my mental health. You are not guaranteed to get every side effect of pred and many people dont get any!!(lucky them). Do your research but dont be afraid to take pred as it's made out to be the bad guy but in actual fact gives most of us our lives back albeit in a different format.
If you are feeling suicidal please reach out to your new gp and explain your feelings. It may just need a tweak of meds to help you cope better.
Please keep us up to date on your journey, good or bad.xx
Hi Nettie, I have suffered anxiety and depression for many years on and off so whilst I don't know what your particular situation is like I know that dark desperate hole. I am really glad you have reached out to us here as it shows you do want to feel better. If you feel suicidal or just at a really low ebb the Samaritans are there and you can to someone who is just there to listen with no strings or judgement. I have reached out to them few times when feelings overwhelmed me. On one occasion they kindly just sat on the phone and we barely talked but it was helpful.
You have had 6 years waiting to understand what the physical problems were down to and now you almost know for certain. As someone said, PMR can significantly contribute to depression. I have been on an anti-depressant for years, recently changed to another drug for neuropathy. But I can say the pred did not impact in my mental health as much as PMR did. But you need to just get your head around it all as you say. Try and talk to your good doctor if you can and just be as honest as you can. Please keep.in touch. 🌻
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