As I lie awake feeling very sorry for myself with back pain and rib pain and pains in my arms and feeling energy less and downright poorly tonight and wondering whether Im having a flare and what to do about it- am I the only PMR sufferer who has thought at sometme on their journey that its just all too much? Could something else be happening thats not been picked up on?
Ive had a bad couple of days with pain and feeling really down- sorry for the self indulgent post .
Hi Lyndalou 😊
I’m so sorry you’re feeling so bad. And I’m sure you’re not the only one who worries that something may have been missed 😟 Well, I have sometimes so that makes two of us anyway! This is such a multi layered condition that we can easily wonder and worry…..
Just a suggestion- have you seen your GP recently? Maybe a consultation and/or some blood tests would put your mind at rest -.or identify something treatable IF there is anything.
Sending you all the best and I hope you get some sleep 😊
Nextoneplease xx
From one insomniac to another!
Thanks for reply. I have spoken to a ( different one everytime) GP over the phone regarding these aches and pains- had chest x ray to rule out lung cancer and he ruled costochondritis and said its muscular and possible anxiety! Who knows! Everything seems to be put down to anxiety theses days- seems an easy cop out answer to me!
Don't ever be sorry for posting on here. There is always someone who will listen, commiserate and, if possible, help.
You are young to get PMR (but there are others). Have you spoken to your doctor about how you feel (or is he unsympathetic)?
Back and rib ache aren't often seen in PMR but, here again some others do suffer with them.
Have you tried paracetamol? It could be something else that is troubling you.
One of the most difficult things to learn about this pesky illness is - patience. Of course, we all feel sorry for ourselves at times - we are in pain. However, we MUST pull ourselves out of it otherwise depression will set in and THAT is even worse to deal with.
Spoil yourself as much as you can, be your own psychologist - do the things you CAN do and work daily on adding one or two more things.
Kindest regards and good luck. 🍀🍀🍀
Constance
57 isn't particulalry young - over 50 is the age range even according to doctors!!!
I know! The age acceptance has changed since we first started on these forums, hasn't it? The answer used to be - "not PMR, you're too young"!
Still is from the ignorant!! Someone in their mid-late 60s was told they were too young!!
jinasc and co did a lot of lobbying to get the age range made more sensible...
When I went to the hospital recently with headaches, concerned I had gca, I was told by doctor I was too young. I am 68 and with pmr too!
What a plonker! If you have PMR - you can develop GCA ...
Thanks so much for your kindness and taking the time to reply. Im going to take it easy today and gave a pampering session with sll my my lovely pots n potions ive received as xmas gifts!
Most of us have probably been there, and still there on occasions. Pmr can be a complex condition and how it affects us can vary. I am nearly 10 years since diagnosis and can still experience different manifestations! It is not easy to come to terms with, and for many of us, our previous coping mechanisms with illness would be to battle on as best we would.
Sadly that doesn't work with pmr. As Constance says, we need patience, but sometimes that makes us feel we are giving in to it, which doesn't sit comfortably. I have also found with this pandemic, that I have been thinking more of what I used to, and it is too easy to focus on what I can't do now. Part of the adjustment is to focus on what we CAN do, but so easy to say and less easy to do.
I think in your shoes, I would be seeing your GP if at all possible and trying pain killers in case your rib and back pain is due to something else. (A cough is a classic pain inducer in those areas) At the very least, you will feel as though you are checking things out to be safe. In the meantime, be kind to yourself and best wishes.
I've stopped thinking of what I used to do.👵🏻🤪 I concentrate on what I CAN do, then par it down as much as possible. Too old to do what the experts expect.
I had been in fantasy land about long walks in wilder places! Back to reality and your approach makes more sense! 😊
Thank you so much to take the time to reply. I feel a bit better this morning. Ive upped my meds to tackle the flare and hopefully will be ok soon. The small hours are dreadful if you dont feel well.
In those small hours, co you feel well wnough to do something else ot take your mind off how long it is till morning, like reading? Or sniffing your lovely potions?❤️❤️
Thanks for your reply 😀. It was actually a one off occurrence for me- i usually sleep very well. I think the pain level was playing on my mind and sent my brain off in a dark place. However today is a new day and Im feeling a little better. Thanks again for your kind concerns .♡
Worrying about things is natural (especially when you can’t sleep in the middle of the night) but honestly it can become self defeating if you allow it to continue.
You have made the first step by asking on here - that’s good - hopefully we can easy some of those worries.
However, although not easy I know in current circumstances, you probably need to discuss with GP.
Anxiety could be a side effect of the Pred, or it could be the whole covid thing (not surprisingly many people’s mental health has suffered).
Rib/hip pain could be related to PMR, you will get some answer on here. If that doesn’t resolve the issues, then you need to follow up with GP.
If you think you are having a flare, then read this - and take the necessary action.
healthunlocked.com/pmrgcauk...
Thanks for the reply. I have gone from 9mg to 14 today and will drop back to 10mg in 10 days time. I live on the coast and we have made 3 x3 hour round trips in a week to visit family so that could be the culprit.
Travelling - most definitely anytime. Add in Xmas as well - double whammy! Hope you soon feel better!
Do you keep a diary of dose/diet/activities/symptoms? It might help to separate general PMR symptoms from more specific musculoskeletal symptoms affecting particular muscle groups.
A bit more detail about these pains you don't feel are PMR would be helpful. Obviously nights are bad and you mention back pain - is it worse at night? About/soon after midnight or later in the night, 4am or so? Does it improve when you get up and move around? Are the other pains in joints or in muscles? Where? What like? Do you have hand problems?
Thanks for your reply PMRPRO. The rib pain is all around ribcage front and back but primarily left. Certain positions can cause a sharp pain - for some reason when sat in the car!! I have mentioned rib pain to doctor as I thought was costochondritis- dr didn't think it was but just said possible anxiety! The back pain is more pronounced in the evening usual when i am trying to watch a bit of tv- again dr s not sure what it is but ruled out lung cancer with chest xrays and decided it was muscular. Ive never suffered with any of these things prior to PMR so dont know if related or not. Feeling pretty misreable with it all TBH. But of course it will pass. Im on 9mg at moment but have decided to go to 14 for 10 days and then go to 10mg as I recognise the pains in my arms as an old symptom of the start of my PMR and along with feeling generally rubbish I think I must be having a flare. We live on the coast and have done 3 3 hour round trips to visit family in one week so that could be the culprit!
Should read 3 x3 hr round trips
It does sound as if you have simply gone too low - and done too much. Most people find travelling will wake up all sort of things and adding in xmas as well - perfect recipe. Just sitting in the car can do it - I had to drive long before OH stopped driving - I was fine in the driver's seat which has a lumbar support and can be adjusted for height too. Even a short time in the passenger seat was awful and I developed backache. The small amount of movement when driving, gear changes, looking around/in the mirror helped too.
Thanks PMRpro i do think ive overdone it hence the pain and lethargy! Tomorrow is a new day n hopefully the hike in pred will kick in and do the trick- fingers crossed.
Sorry to hear you’ve had so many problems Dad2Cue. I’ve had a few myself so I really identify with your last paragraph. My family have had to twist my arm to get my cataracts done, and I’ve postponed a foot operation for six months…..I just don’t want any more!! However, that doesn’t stop me sometimes worrying along the lines of “what if”…….
All the best to you x
Thanks for your reply Dad2Cue. Sounds as though youve had an horrendous time. We can probably all sympathise on this forum. As far as i can gather PMR is never cut n dry and everyones experience is different which i think adds to the uncertainty of which symptoms are or arent PMR! Not good to overthink on the wee small hours! However I think that there is an element of doctors thinking its all in the mind when they are unable to give you a definitive conclusion to your set of symptoms- this doesnt fill you with confidence though.
After 7+ years with PMR and an aging body I can say I've wondered about "that something else going on" many times, and many times it has been something else like osteoarthritis, bursitis, degenerative disc disease in lumbar spin, over using muscles, etc. And then there are the flares. The awake time, often at the bewitching hour of 3 am, is the worst for overthinking things.
I'd say you've done the right thing treating a flare.
Here's a little something I was recently told by an ultrasound tech while getting an painful echocardiogram (she noticed my wincing). The first place arthritis forms is in the ribcage. The bones start moving from birth and continue throughout the lifetime. If true, it may explain the sensitivity I've felt around my breastbone for some time now.
Feel better soon. Please don't think you ever have to apologize for posting about how you feel, good or bad.
Thanks for your reply. I do have arthritis in the thoracic area of my spine but im told its only mild degeneration. You just never really know whats PMR pain and what is something else- you have a point with the arthritis in the ribs thing but the rib pain started alongside the start of all my other PMR symptoms. I am due to see my rheumy for my first ever face to face appt in march if it doesnt get cancelled! Only had 2 phone calls with him since diagnosis in nov 2020. He has told me he will take xrays etc so we will see. I am feeling much better having upped my dose for what i think is a flare. I can always tell when m going to be unwell as i get dramatic bags under my eyes and one really angry red right cheek!! Strange i know!!! Thanks again for your reply and i hope you are well.
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