Sitting here and ready to ring the doctor for visit! Ready to ring and decided to put phone away 😳It’s like what will I say to her 🤔🤔 reality is I feel crap 😟 gone down to 12 mg now and I feel everything is effecting me, my neck my head and the mood swings is dreadful, I had a melt down at the weekend (really 😡 angry and I exploded and started to shake) is this normal ?. Also the fatigue is dreadful nearly a year on can’t see an end to it🤧 I don’t mind if I know this will pass ? Maybe it’s not the doctor I need as they will probably lock me up 😳😳 my question is really is this Normal with my condition? Struggling struggling next person that tells me I look 👀 well. Really I am afraid o f how I will react 😇😇 please tell me this anger will leave me🙏 Thanks
Doctor or Not 🤔: Sitting here and ready to ring... - PMRGCAuk
Doctor or Not 🤔
Hi lucylooloo
You will get better in time, but it does sound as if you need help at the moment...and probably more than we can offer.
Get your thoughts together - make a few notes if necessary and then pick up the phone!
Good luck.
Just rang the doctor thanks, she is so busy I might not get appointment till next week😒 but sure I get on with it. I was always going so much before this, that is probably annoying me. Just wondering would it be my Adrenal kicking in ?
Not at 12mg, that won’t happen until you get below the “normal” level of cortisol your body naturally produces which is approx 7.5mg.
I was very interested in what you had to say about the "normal" level of cortisol your body naturally produces. Can you expound a little more on this please?
Hi,
Hope this helps explain -
Cortisol is a steroid hormone produced by the adrenal glands. Whenever you experience something your body perceives as a threat, like a large dog barking at you, a chemical known as adrenocorticotropic hormone (ACTH) is released in your brain. This triggers your adrenal glands to release cortisol and adrenaline.
Cortisol is the main hormone involved in stress and the fight-or-flight response. This is a natural and protective response to a perceived threat or danger. Increased levels of cortisol result in a burst of new energy and strength.
In the fight-or-flight response, cortisol suppresses any functions that are unnecessary or detrimental to that response. During a fight-or-flight response, you can have:
* a rapid heart rate
* dry mouth
* stomach upset
* diarrhea
* panic
Cortisol release also:
* suppresses your growth processes
* suppresses your digestive system
* suppresses your reproductive system
* changes how your immune system responds
When you have been taking steroids for some time (over 3 weeks) your adrenal glands no longer produce cortisol, the natural corticisteroid hormone, produced by the body to fight illness and cope with stress. This explains the inability to respond to acute physical stress. In certain cases, like an operation or other stressful events, an increase in steroid intake may be needed. So, you are living with a body that's relying on a drug to get enough cortisol to function properly.
At 7.5 mg. prednisone (this is an average, it could differ from 5 - 10 mg. for different people) the adrenal glands should get activated and produce their own cortisol again. Eventually the adrenals will take over again, but this needs time.
Thank you very much - that is very interesting.
Hi Lucy it will pass! You will feel better! I have had poly for just over two years now.
Been through the anxiety and depression. I also found the extreme fatigue the worst...but I am down to 6mgs now and feeling so much better.
The lovely ladies on here are so knowledgeable and will help you through as they have done for me.
Hang in there it does get better👍
Thanks for your support 💕
Xanthe im sure you helped Lucy. You definitely helped me. You got through it. So very happy xxxxx
Hello. It’s unbearable when one can’t see an end. Major illness or disability not only challenges the mind and body but it also can hold a magnifying glass to the issues we’ve packed away over the years and that comes out to play too. For that reason with every major health issue I’ve had, I’ve made sure I’ve been to talk to someone whether I think I’ve got a problem or not at the beginning. This time around I am convinced my past issues have had some part to play in my illness now; it’s been quite a revelation as to how I lead my life as I did and burned myself out.
Professional advice is a sound investment of your effort, even charitable mental health support helps prevent the volcano effect and decent into guilt and misery. Just being heard has a profound effect. Don’t feel you need locking up; all those people going about looking ok can be screaming inside colluding with society’s assumed requirement to pretend everything is ok.
This is so true as I am out of work now 4yrs at start it was all stress related ended up in cardiac unit for week that was 04. Then this GCA, I lost my home, etc etc, think it all came to focus But I am angry with people I found ones that let me down. Believe me but how this has effected my health over last few days, I am trying to get back to resting as I was starting to go again as nearly every day to do something. Now think it’s back to me and my 🐶 dog can’t help other people when I am ill myself. Meditation is something I will look into thanks a million 💕
Me again. When I had cancer I got very upset because those who I assumed would be supportive were not. However, help came from others I would not have expected. I’ve heard the same from other ill people. This time round with GCA exactly the same happened, but this time I didn’t get upset because I knew what was coming. I think sometimes people who are close can’t cope but those with a little more distance can. Then there are those who are just too self absorbed but we all know about those.
~SnazzyD - just felt my need to make a comment here because it struck a cord.
I am almost 4 years with PMR & its subsequent extra acquired medical issues along the way.....
I was terribly sorry to read about your cancer issue which brings its own pain & challenges in a myriad of ways.
Your comment re "those you assumed would be supportive & weren't" echoes my situation when my husband was diagnosed 2 years ago with a rare aggressive cancer (face) & 3 invasive surgeries since + lengthy radiotherapy. He is not out of the woods, yet those closest to us, plus friends that I thought would have been supportive are too caught up living their own lives (I've decided) so I just quietly get on with it & at times grit my teeth or weep or better still take to my bed the odd time for solace & comfort.
Thinking of you + Lucylooloo & Daisychain12 - I've accepted its an unpredictable journey & I just take one day at a time.
May abundant blessings surround you all .
So true! And and those major issues do come up that have been there for years.....and you thought you had already worked through them! At a time when you have no energy to deal with them! I’m in that situation right now with major family issues.
Talking to a counselor does help you make it through though.
Don’t be afraid to make the call! I hope you get help and support Lucy Loo. 🍻
As I often say - not normal but usual. Happened to me for a long time - but it has improved a lot though I can still flip out given half a chance...
No, not your adrenals kicking in - you are still on too high a dose of pred for that, wait until well under 8mg.
"I was always going so much before this" - you haven't come to terms with your "new normal" and that was what helped me adjust more than anything else. The fatigue is something different from the pred and you have to be proactive there as well as in how to handle the gorilla:
healthunlocked.com/pmrgcauk......
And I really can't add anything to Snazzy's post - there are many ways of achieving the "coming to terms" I mentioned (oh how I hate that phrase but it says it all) and you need to identify what YOU need. Living with chronic illness is not easy - not like recovering from an op or the flu. There are too many bends in our tunnel to be able to see the light clearly. But it is there - others have come out the other side and found it. You will too - just not yet.
Thank you so much, it’s great to hear this advice as the mind is a very dangerous thing 🧐🧐 taught I was going lula and then family would look like your crazy 😳 I know they don’t understand it and I find no point in battling for them to get in to tiring. Anyway relaxing now and won’t do anything for today just chill watch a film. Maybe my headache will ease. 💕
Oh my gosh. Did I write this or did you? I’m so sorry you feel like this. Please reach out for help. I am going to. Xxx
Thanks 💕going to do not a thing today, 💕
hallo Lucylooloo, good you are sharing how you feel. It is not easy to show the world one is not doing too well. This forum is not the world, but a save place. For what it is worth, I 'll tell you part of my story, if it is only one tiny thing you can pick up / or reject, hoping it helps. in PMR two years. now on 4,5 mg, going steadily downwards. ( the pred, not me ) the first months everything seamed easy, felt a bit euphoric. then I realised this is a long way, not weeks, but years. I had to sit up at night, shoulders hurted, not sleepy. Was tired and sad all the time. My friend leaving cause he could not cope did not contribute lifting my mood. But instead of asking for help from friends or family, I just went on, feeling like walking in the cold northern wind without enough protection. And sometimes I wondered if life is still something to appreciate. What helped then, was taking my pmr as my responsibility, argued with gp about treatment, and stopped blaming myself about the way I acted and reacted. Looking back I am feeling much better now, accepting restrictions like needing more rest then before and experience the progress in my body and mind. So try to be good for yourself, do what feels good, and please do not judge yourself. a virtual hug for you.
Thanks Would you believe I am beginning to think all this was happening over last couple of weeks, I was keeping it all in, as when I was in company with family/friends, they would never ask how I was? They don’t see that sometimes when I come down the stairs I might struggle to get back up, on top of all that. I ve been constantly refused disability/invalidity as they are saying I can work at something 😳😳 I would not hire myself ... crazy world Think I have to take charge is right my personality is to soft.
Hi there, sorry this is late only just seen it. If you are having problems with getting any sort of benefit and you are in the U.K. please try the Citizen's Advice Bureau. They helped me with mine after I had been refused. It is worth a try. Sending gentle hugs, Jannie.
Ah thank you so much 💕💕
Taking charge of your health care can make you feel empowered, but talking to someone can also help deal with those bottled up feelings, and it sounds like you have accumulated quite a few. When you see your GP, can you ask to be referred to a mental health professional? I'm in the US and don't know how your system works. I feel for you. What you are going through is familiar. As you can see, there is always a lot of wisdom and support on this forum as well!! All best wishes.
I just wanted to add a hug to the great advice and support that you are getting. I really do recognise those awful feelings but it’s a snap shot in time, it doesn’t feel like that all the time, thankfully. Don’t put up with it unnecessarily though, take a leaf out of Linda’s book ( Daisychain). Seek medical help.
I have appointment on Saturday as doctor is so busy she is coming in to catch up with things . I feel a lot better with all the advice from everyone they are great 💕💕 thanks 🙏
Sorry to hear of your situation and challenges. Mood swings and feelings of depression were more present in the 5 months before I was diagnosed with PMR. Just the fear of not knowing made my thoughts run overtime as I tended to see my situation as a catastrophe. I did not share these dark thoughts and isolated myself. Not good!
Then with my diagnosis and pred came anger over my situation and mood swings. This time I shared my struggles with my husband, my closest friend, therapist and on those on this forum. Much better!
I put in place some strategies to deal with my changing moods, mainly agreeing to take time and space (and allow that option for others around me) as to try and maintain much needed supportive relationships with others. This way, when I’m feeling frustrated and on the verge of “losing it”, I hopefully don’t explode and take it out on others, followed by feelings of guilt. At times my moods changed so much I didn’t recognize myself.
Your true core of who you are is still there. You are trying to cope with chronic illness, no easy task. Utilize your resources as best you can and consider additional mental health supports if need be. Allow yourself to feel what you feel.....trying to stuff those feelings away, or pretend that you aren’t struggling, will likely not serve you well in the long run. It’s hard to be genuine and authentic when our thoughts, moods and behaviors seem foreign, but I always feel better accepting them as opposed to living a “pretend normal” life.
Things get better, I promise. These challenges are passing, and lowering my pred dose has helped.
Often we judge ourselves harshly, be kind and compassionate to yourself.
I had a long reply done but I ve just lost it lol. So basically I will say thanks to all on this site you all have helped me so much and I feel so much better. I am not beating myself up as you said, “we judge ourselves harshly” and no one does such a great job on it as myself. This site helps so many people you all are Earth 😇 Angel’s 💕💕💕
Beautiful post. This is me exactly. I can't cut myself some slack. I an reaching out to a mental health clinician to find someone who can help me accept my limitations without feeling like a failure. My journey has been too long to count years. Emotional and physical pain feed on each other, and makes things worse. Hang in there everyone. Hugs Lucy.
Hi,
I wrote an answer to Daisychain earlier that may also be of help, some pointers of where to find extra help, and techniques to find a way to get through.
The mental fatigue of long term illness whether drug induced or from the impact of being ill on body or soul take its toll on us all.
We have all found it hard to breath because we feel so bad , and hard to talk to the docs just when we need to most.
I keep saying there is nothing that makes you feel more ill than trying to get better.
But you know you have support here from all the brilliant friends on this site.
We all know it will pass , we will get through it in time , that we have plateaus in pain and fatigue that we find hard to pass , all made more frustrating by the invisible nature of the illness . But some days we also need to be allowed to feel down right angry .
And although all of our friends and family believe they are hopefully making up feel better , and being supportive by saying how much better we look , they are trying their best and at least they care, it doesn't stop us wanting to push their face in a pie when they say it , because we may have a steroid glow but inside feel like deep heated stilton.
The anger , the frustration and low mood is understandable and sometimes cathartic in the short term but if it does not stop , it is time for that extra help.
Good luck and take care, and if you take the chance to look at my response to Daisychain I hope it helps. Each country obviously has different systems and services available. But there will be something out there for you to help.
Morning Lucylooloo,
Know exactly what you are saying have had the same, and what you say about the fatigue is so very true I've been through the mill twice,And only just feeling to be a bit myself after 3yrs.
It's a long journey but even though it sounds selfish you need to think about putting yourself first for a change I know this can be difficult at times but you just need to ask for when needed and let certain other things take care of themselves.
Take care
Jura1959
Thanks so much have taken last few days to try to get my peace of mind back 😏 nice walk etc. doctors tomorrow so hopefully she will support me. 🙏🙏💕
Ohhhhh Lucylooloo, Your post made my heart ache... I (we) know al too well that feeling of insanity and desperation. Not to sound trite or condescending, but this too will pass, I'm sure it will. We are all here for you and have your back... Yes, make that call (if you haven't already) regardless the outcome, get your concerns off your chest!!!!! xxx
Yes appointment in the morning the doctor was so busy she has to go in on Saturday to catch up on patients. Thanks I needed to hear that it would pass. Took last couple of days to come back down, to get my mind, Head a bit clearer. I was starting to loose the run off myself 😳😳so nice slow walks , time on my own it definitely helps 👌💕💕x
Ohhhh good, let us know how it goes! xxx
I have been in a similar situation as you this week but glad I bit the bullet and called my rhumy help line as my GCA CRP levels had raised. I too battled with myself should I or shouldn't I. At the end of the day you are the one suffering and I all too cleRly realised that I am the only one who knows how crappy I really feel even if people think I look well or should be getting better Arghhhhh. Feeling crap is my middle name. Downside is he has increased my steroids but I get to keep my sight. I am going to try a new regime. I feel like Akice in wonderland. All the rules have changed and I need to go with the flow. At least you haven't killed anybody yet even if they deserved it lol.
Like you I get tired of being told how well I look when I am feeling tired and don't feel it. All you can do is keep plodding but it is not easy.
Just sending more good wishes to what's already been said. We've all experienced where you are at some point, take heart it will improve but do seek medical help - even if it's to offload and be reassured you are doing everything you can for yourself at the moment, the low mood will pass. Take care x
Yes, the anger will leave you. I found I had days of dark mood, anger and short temper, usually in the early stages of a taper. Some days I would warn my husband: " It's one on 'those' days Hon, don't take anything I say personally." I'd resist throwing things or screaming for a few days.
While I'm only at 9.5 mg I've also had some concerns about the on-going fatigue I have with reductions. As Dorset Lady mentioned in her great explanation, the normal physiological level is 7.5, but it can vary. I saw an endocrinologist yesterday to discuss the possibility of secondary adrenal fatigue and the bioavailabilty of prednisone. After discussing my history with reductions, including a brief flare a couple of weeks ago as I attempted to drop to 9 mg, he said I shouldn't concern my self with adrenal fatigue at this point and to keep doing what I'm doing. He encouraged me to go as slow as I need with the reductions. He also emphasized the importance of not taking any medications or injections to stimulate the adrenals. It will happen, it has to happen naturally.
I decided to bathe in the validation on my pattern of reduction, ignore the question of adrenal fatigue and make a followup appointment in six months. The main reason for doing so is that I'm also being investigated for celiac disease, which could also be causing the fatigue! A recent blood test showed a reading far in excess of the normal range.
Interesting - a friend was diagnosed with coeliac disease in his late 50s ... Presented with upset guts after grill parties - too much bread and beer!!!
Don't overdo bread or beer. White wine's my preference. 🥂
I've had minor issues for over 30 years and have mentioned it to every doctor. No real testing other the occasional stool test, so I assumed it was something like IBS. Our new GP is the first one to do the blood test. Perhaps it's morphed into coeliac disease. Symptoms have certainly increased in the last year or so.😯
I'll do a post once the further investigations are completed.
Another hug for you. I have just found that keeping a diary, (random days) to report specific symptoms, feelings and activities that work or do not work is a very good thing to bring into my doctors. It helps keep me focused and for them to understand how I am truely feeling throughout the last few weeks or months as I report back to the doctor. I have hit the first year mark, expecting to have this over with, but PMR still persists. Down to 6mg plus MTX. Which must be helping to reduce the prednisone.
My girlfriends are my best support, my family forgets I have anything wrong with me. So I understand the challenges. I look back at my diary and see how I felt at 20mg and my power of positive thinking tells me I'm going in the right direction. Good luck on Saturday Lucylooloo.
My daughter said to keep a diary also I did at the start but then forgot about this.. thanks for all your good lucks 💕💕💕
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