Do you ever worry that something else is happenin... - PMRGCAuk

PMRGCAuk

21,317 members40,425 posts

Do you ever worry that something else is happening in your body?

Lyndalou62 profile image
29 Replies

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 .

Written by
Lyndalou62 profile image
Lyndalou62
To view profiles and participate in discussions please or .
29 Replies
Nextoneplease profile image
Nextoneplease

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!

Lyndalou62 profile image
Lyndalou62 in reply toNextoneplease

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!

Constance13 profile image
Constance13

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

PMRpro profile image
PMRproAmbassador in reply toConstance13

57 isn't particulalry young - over 50 is the age range even according to doctors!!!

Constance13 profile image
Constance13 in reply toPMRpro

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"!

PMRpro profile image
PMRproAmbassador in reply toConstance13

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...

Exhiker profile image
Exhiker in reply toPMRpro

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!

PMRpro profile image
PMRproAmbassador in reply toExhiker

What a plonker! If you have PMR - you can develop GCA ...

Exhiker profile image
Exhiker in reply toPMRpro

Yes and another thing he said was, your not at any more risk at developing gca then someone who hasn't got pmr. I was literally speechless.

PMRpro profile image
PMRproAmbassador in reply toExhiker

Double plonker!!!!!! Where did he read about PMR/GCA - seems to have found some Fake News ...

Lyndalou62 profile image
Lyndalou62 in reply toConstance13

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!

herdysheep profile image
herdysheep

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.

Constance13 profile image
Constance13 in reply toherdysheep

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.

herdysheep profile image
herdysheep in reply toConstance13

I had been in fantasy land about long walks in wilder places! Back to reality and your approach makes more sense! 😊

Lyndalou62 profile image
Lyndalou62 in reply toherdysheep

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.

Sharitone profile image
Sharitone in reply toLyndalou62

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?❤️❤️

Lyndalou62 profile image
Lyndalou62 in reply toSharitone

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 .♡

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

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...

Lyndalou62 profile image
Lyndalou62 in reply toDorsetLady

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.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toLyndalou62

Travelling - most definitely anytime. Add in Xmas as well - double whammy! Hope you soon feel better!

PMRpro profile image
PMRproAmbassador

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?

Lyndalou62 profile image
Lyndalou62 in reply toPMRpro

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!

Lyndalou62 profile image
Lyndalou62 in reply toLyndalou62

Should read 3 x3 hr round trips

PMRpro profile image
PMRproAmbassador in reply toLyndalou62

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.

Lyndalou62 profile image
Lyndalou62 in reply toPMRpro

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.

Nextoneplease profile image
Nextoneplease

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

Lyndalou62 profile image
Lyndalou62

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.

nuigini profile image
nuigini

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.

Lyndalou62 profile image
Lyndalou62 in reply tonuigini

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.

Not what you're looking for?

You may also like...

Is it PMR or something else?

I've had PMR for about three years. Last year I was finally able to reduce down to 5 mg of...
judyb100 profile image

Have not been feeling well for a couple of weeks - is this PMR/ steroid use or something else?

Posted a week or so ago about sore elbow (self inflicted I think after cleaning the decking) - this...
suzieh profile image

Is this a flare or something else?

Hi, I’m almost three years in with this awful disease (PMR) and still can’t figure it out. I began...
Tiggy70 profile image

Is this PMR or something else?

Since coming back from holiday in November I have had lower back pain and in the hips which is...
Decsgran profile image

Is it a flare or something else?

I've had PMR/GCA for seven years and finally down to 4.5mg for many months. Yesterday I went down...

Moderation team

SophieMB profile image
SophieMBPartner

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.