I haven't posted in a few weeks because I was in the hospital for several days with a virus and trouble breathing. The virus wasn't serious but the breathing issue was. Being on steroids for my PMR has caused 11 fractures in my back and it now bent at a 75 ° angle which me my lungs don't have room to fully expand. I now have on 30 % lung capacity and am on 2 liters oxygen 24/7 permanently. I feel so stupid. Some of the pain I had been feeling was my back and ribs breaking but every time I lowered the Prednisone the pain was awful. My rheum dr was fine with the steroids. I have had fractures before so I should have known. I never knew this could affect my lungs. Feeling very down and trying to get used to the new normal. My daughter has come to stay for 2 weeks then going back to West Virginia. My husband is very angry with me but he does do a lot around the house. Luckily, my sister lives close by and is wonderful. Ok, that's enough whining! Bleary eyed's post was great. We do have to look on the bright side
Steroids did serious damage: I haven't posted in a... - PMRGCAuk
Steroids did serious damage
I am so sorry you are going through this. It must be very difficult and your attitude is an inspiration. I am glad your daughter came, furious at your husband being angry and love your sister. I wish you all the best. You definitely get to whine all you want.
Thanks for your reply! I'm just happy to be alive
Oh dear. They should have been casting o closer eye on you with dexa etc. Thought it soulds like others response to you illness and injuries aren't helpful. My father was bent over a d did have lung trough exacerbated towards the end of his lefe. But he was l with other things. We were rubbing vtat into his ribs and back and he was breathless. The main thi g is you. Need to see physios and asthma/copd nurdlses as wl as orthos. Print the docs picture of and put them up as target practice by darts, nerf guns etc. Keep g you hi. Our is vitallay imortant and ignore the energy vampires. Feel belger soon and get them to give you good pain relief. 🌻
Like your idea of target practice. I've been seeing so many drs but when I was in terrible pain I conferred with my rheum dr by phone probably my biggest mistake. I kept telling all my doctors I was breathless and wheezing but my pulse ox was always 100% until it wasn't
I said the other day that my dog gets more hands on examation than I even do! I know they can't te the dr what's wrong, but the vets are nice to them.
Perhaps you may get some more I fo from the copd forum AS WELL as us.?
I'll check it out
Please do. I tried a link but it didn't work! Keep us informed.🌻
Realistically your GP should have spotted what was going on much sooner with a physical exam and your Rheumy should have recommended you come in to see them or at least sent you for x-rays especially with the increasing pain and breathlessness , it wasn't your mistake in any way .
So sorry for you , do keep posting or send me a PM if you want a chat to shed a tear or have a cheer up , I'm happy to help if I can and you definitely need it.
I hope everybody is taking extra special tender loving care to you now and they move quickly with your treatments XXX😘💐
I was at my GP a number of times for other issues and mentioned the pain and breathlessness but I think he decided it was the rheumatologist area. The last time I was at the rheumatologist I only saw the Physician's Assistant which I usually don't mind but now realize was a mistake. I described everything to her and she really had no response
I know you are in a bad place... They did reject all references I made to being breathless and pain and got the same blank looks. I am so sorry and they should be accountable. I would be asking if it can be raised at there appraisals as something to improve. 🌻
Terrible , it's certainly no mistake on your side and nothing for anyone to be angry with you about . You need lots of TLC and support right now , especially if you consider making a complaint when you have had time to recover from the news.
Take care xx
~Hi librarylulu24 - words fail me & are totally inadequate at this moment in time but hubbie really need not add to your heavy load by taking his frustration out on you when your already down. This is so unfair.
Sending huge gentle hugs & soft comforting arms to lightly surround you.
I listen (with earphones) mindfulness meditation most mornings - really helps lift my spirits in so many ways especially after disturbed nights sleep which is almost every night - Abundant blessings ~
I love my morning and evening meditations too
I’m so sorry. Take care and the very best wishes
Just sending you a big but gentle virtual hug...I’ve no advice, little experience, I’m only in month 4, but I want to send my sympathy & best wishes. Take care, S x
So sorry you have such difficulties with the fractures. I had 5 vertebral fractures recently from steroids. For us they’re a catch 22. Have not had lung issues. Please keep posting on how you’re doing. Whines are perfectly acceptable. I certainly would understand them. My best. 🤗
Further thoughts brought me to the realization that, sometimes it can’t be called whining. Sometimes one has the right to complain. It can be so bad that one ought to express it. You are at that point and probably have been for a good while. Understanding can be found here. 🤗
So sorry you’re going through all this. Keep posting if you feel you need more support or understanding. Xx
So sorry you're in this bad place. It's hard when nearest and dearest get angry and frustrated. Try to remember it's because they care. x
I have had a couple of issues the past 2 weeks. I was not going to post until I read about your experience. Since the first of year, I have felt kind of puny on and off. It came to head about 2weeks ago and I realized I had to go to hospital. There it was found I had half the blood necessary in my body. After 2 days of transfusions, I came home. Here one day and back in hospital where it was found I had Pneumonia. After 3 days back home again, with periodical oxygen . My back is painful sometimes. Right now I am having good nights and bad nights. I have ben able to stay on 3.5mg of prednisone, but willing to go up if necessary. Could my back pain be due to PMR?
They did check for fractures in your vertebrae right? I thought I had back pain from PMR but it was most likely fractures. I'm sorry you're feeling so unwell. I hope your condition improves soon. What was the cause of only half the volume of blood in your body?
I have a mall gastric ulcer. I usually know when it is active. However, this time it must have been slowly bleeding for a long time., with no apparent signs
Oh no, that's terrible.
Noosat, ulcers are caused, usually, by a bacteria.. We don't just live with them. Other ulcers can be caused by steroids or NSAIDs. How is your ulcer being treated? I was shocked when you said you had a 'small ulcer "and I usually know when it is active-whaat? Your steoid dose is not that high. Were you taking an acid blocker on higher doses? or taking your steroids with food?
It must be addressed but now the world is in crisis so you must wait. If you are on pred are you taking an acid blocker? Back pain can be referred pain from a number of things. We cannot diagnose here.
When first discovered, several years ago, a stitch taken to close it. I have a good gastroenterologist, who has looked at it (endoscopy) It can be controlled through careful diet. Thanks for concern. 
Where in your back? Back pain is one symptoms of poor adrenal function and at the pred dose you are at that is a definite possibility, especially with the stress you have been under.
OH had a medical experience due to bleeding and loss of blood volume and low Hb recently - followed by a fall and fractured vertebra. Recovery will be slow I fear but I know exactly where you are just now! So sorry.
The pain is mostly upper back and shoulders. Thank you for mentioning adrenal glands. I just made a note in my journal to bring it up to my doctor. Hoping for a quick recovery for us all
Give OH a hug for me. Just had flashing pain in my left leg. I hobbled to the kitchen and took another 2.5mg of prednisone. Am going back to futon and will see what happens. Fifteen months ago, PMR started in my legs
Nurse and I traced it down to the high power diuretic I was taking to get rid of fluid in chest cavity and lungs. Some Tylenol helped diminish pain, and now, still taking it until prescription is done, I don't have that particular back pain. Thanks so much for reply. All the best to you both.
Why is your husband cross with you when you are so ill and in a lot of pain.
OMG that sounds dreadful! As others have said your medical people really dropped the ball on you. I do hope they smarten up now and find the best treatment for you to live as pain free and mobile as possible, and prevent further fractures!
Nice that you have your daughter there to help for a bit and have a sister nearby, however, your husband needs to get a new attitude. I like to think that my hubby would have been screaming at the doctor ages ago.
Best of luck to you and as others have said please stay in touch and whine as much as you need.
I'm starting with a new rheumatologist in April, hoping for better results
Maybe start with a new husband as well.
He's cross because he can be a jerk sometimes! I have dealt with chronic conditions (Crohn's Disease) since we first married and I think he's scared and tired of it all, just like I am. He needs to be more understanding
It's a shame. It's not like you have any fault in this. Go to your happy place when he stresses you. 💜
I'm right there with you. I've had 8 broken bones (7 in my back and one rib) caused by osteoporosis and am in a desperate state trying to mnage my PMR pain without doing anymore damage to my bones. I try to keep my pred dosage at 5mg and I take aspirin which also relieves some of the inflammation. But now even the aspirin is doing a number on my stomach. It's damned if you do and damned if you don't. Fortunately I only had to be on oxygen for 6 months but I was on it for a different reason then you.
The joke is my pulmonologist just prescribed a short course of Prednisone to treat the inflammation in my lungs. When I walk I start wheezing. I'm on a nebulizer every 6 hours. It does help some. I'm trying to avoid the hospital. Glad you're not on oxygen anymore
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