A BIT OF A RANT: I am so amazed at friends and... - PMRGCAuk

PMRGCAuk
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A BIT OF A RANT

Cheshy72
Cheshy72

I am so amazed at friends and family and the comments I get. Without wanting to moan continuously about the pain and fatigue I feel they just do not get it. If I remark how hard it is to get myself up and running in the morning I hear Why, whats wrong?

So maybe just pretend to be okay is the best approach. A bit worried this morning as I woke up to the usual pain and unable to move, both shoulders throbbing etc, I realised that I had pain down both of my legs, from the knees down. Fortunately it only lasted a short while. Has anyone experienced that? Thank Heaven for this site as everyone is in the same boat. Anyway the consolation is things could be a lot worse. After lunch I do feel a lot better and are able to do a few things.

Thanks for reading x

45 Replies
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PMR is a life/changing event! Uncomfortable complaining about it because it is not terminal, just painful, fatiguing or annoying enough to consume you every day. If someone had the flu we can empathize for a few days, but that is it! That is the beauty of this forum😊 We get it! I am glad you can work through the morning pain, that is very annoying! The fact that it could be a lot worse is kind of a cliche, it could also be a lot better💕....and one day it will be😆

I know what you mean. My family are still adjusting to this, as am I and it's difficult to explain to others. It's the dreaded fatigue I find worst to handle and lack of sleep 😴 Pred has chased the pain away and maybe your dose needs to change a bit too to help you more. The expert aunties will have better advice. Meanwhile this is the perfect place to rant because we are, or were all in the same boat.

Cheshy72
Cheshy72 in reply to Hollyseden

Hi Hollyseden,

After numerous blood tests the results were inconclusive hence my Doctor reluctant to prescribe Prednisone. I have a Rheumatologist appointment on 18th October. I have been told 20% of people on here have inconclusive blood tests .

I tick all the boxes for PMR. Its now 11 am, I have been up since 6 am and now ready to go back to bed. Ha Ha. Not really funny. Thanks for reading. x

Hollyseden
Hollyseden in reply to Cheshy72

I'm a newbie but have been following this forum closely and advice given seems to be ask the doc to at least try Pred for a week or two because it's the only thing that relieves the pain of PMR. If it's not PMR it won't work. Took me a few months to get correct diagnosis and was just settling into it when ended up being sent for TAB for GCA. Meanwhile still waiting impatiently for result of biopsy while struggling to sleep on 60mg of Pred. Such fun..not. That's my wee rant out of the way 😜 I've been awake 22 of the last 24 hours so excuse my rambling. Such fun. Enjoy your nap x

PMRpro
PMRproAmbassador in reply to Hollyseden

"If it's not PMR it won't work" - not entirely true, some of the things that resemble PMR would also respond some but generally not as well as PMR does. But it is a CLINICAL DIAGNOSIS OF EXCLUSION - that means on the basis of the symptoms and ruling out other things. The ESR and CRP are only a part of the picture, they are not essential parts and unreliable. By try telling some doctors that!

Sandy1947
Sandy1947 in reply to Hollyseden

I think our families are in denial and expect us to be the way we always were. It exacerbates me that my son and his wife never ask how I feel. They want the old whirling dervish as a constant in their lives. Welcome to an emotional side effect of this disease. I can empathize as do many others on this wonderful site,

I know how you feel.... up for work at 7.. in bed since 10.30pm... just tootling on my I pad...what's a girl to do!!! It's nice to be comfortable and ache free tho....am enjoying that 😊

I think the people in our lives are also effected by our condition.

Some of them cannot face the thought of us being unwell, of us being in pain. Some because it hurts them if we hurt. Some because they are afraid of what is happening or will happen to us. Some because they are afraid this - or something like it - can happen to them. Some are in total denial because it is the only way for them to deal with what's happening to us.

Many of us have been the problem-solvers in our families and in our social circles. We were always the ones who could be counted on, who came through in the clutches, and now we're not quite up to it the way we used to be. We have to move more slowly. We have to husband or strenght to make it through the day. We neds a lot more rest. There are things we just can't do without hurting or even injuring ourselves. That leaves a big hole in a lot of lives around us, not the least of which is our own.

I explained to people that PMR is painful and limiting and debilitating, but temporary - kind of like when you've sprained a wrist or ankle - but that the pain was sometimes everywhere at once, sometimes more pronounced is some places than in others, some days more intense than others, worse at some times of the day...and that while medication helped the symptoms, the condition would reduce or go into remission when it was good and ready, and not one moment sooner. I told them it would gradually get better, that it could take a long time, that I might have disappointing relapses, but in the meantime I needed rest and help.

I asked for the kind of help I needed (not easy for me by a long shot): food shopping, vacuuming, scrubbing the tub, doing laundry, raking leaves, shoveling snow, cutting the lawn, taking out the trash... Heck, sometimes I needed someone to cut my food, to drive me somewhere, to open a jar or make a pot of coffee. It gave folks something to do that they could control, something concrete they could do about what was happening to me, and I got the help that I needed.

Don't take it personally, and don't judge people too harshly. Just like us, they're doing the best they can moment by moment. Don't worry too much about it. It is what it is.

Take care of yourself as best you can, and ask for help when you need it even when it goes against your grain. And find or create one thing every day that is beautiful and one thing that is funny. Even at the worst of times, there's usually one or the other or both lurking about if we're looking for it.

Cheshy72
Cheshy72 in reply to GOOD_GRIEF

Very wise words, thank you.

Sandy1947
Sandy1947 in reply to GOOD_GRIEF

I love your post! It spoke to my soul! Sometimes I lose my funny...usually around 9 pm! I'm exploring new things since PMR forced me into retirement which I think I wanted subconsciously. My driving has become compromised since I have blurred distance vision. One accident later, I hate relying on my sister to pick me up or preferring day dates to evening ones. It's embarrassing going to bed so early!

Oh well, adjusting to PMR is all part of what life throws at us when we are simply rolling along.

I will do a funny and beautiful thing today thanks to you!

HeronNS
HeronNS in reply to Sandy1947

My small circle of friends includes no one I know of with a medical condition as life altering as PMR, yet they are all now happy to meet day times instead of evenings. Think it's more of an age thing than PMR!

peanuckle
peanuckle in reply to GOOD_GRIEF

You've expressed exactly how we all feel - thank you

I think you've hit the nail on the head there.

Polywotsit
PolywotsitPMRGCAuk team member in reply to GOOD_GRIEF

Wonderful stuff, so true.

Hello Cheshy

If I recall correctly when I was in the early stages of PMR someone suggested to put on the electric blanket and get yourself nice and warm before getting up in the morning. I later got a topper for my bed which is lovely, soft, warm and cosy but you can't have a standard electric blanket with them only an over electric blanket.

Maybe others can say whether this worked for them.

Best wishes

Cheshy72
Cheshy72 in reply to Patricia157

Thanks Patricia thats a great idea . Probably better than standing under the hot water for hours. Bit cheaper.

PMRpro
PMRproAmbassador in reply to Cheshy72

Do both - warm yourself up in bed so you can then get in the shower and do some gentle stretches in the shower. That really does help you get going.

Oh how I resonate with all of the above. Here's my rant,

.

I've had a pretty easy time of the first ten months of PMR. I got a rapid diagnosis, blood tests ordered after an email to my GP and three days later saw a Rheumy who gave me the diagnosis and started me on Pred.

I am sensitive to the taper so it has gone a bit slower than for some others, but I've had good energy and have been mostly pain free....until now. Going from 10mg to 9.5 has stirred things up. Tired enough to nap when I get home, and feeling the PMR burn now instead of just the niggles. Rheumy has told me to alternate 10 and 9.5 for the next week.

But now if feel that life as I've lived it is about to slip out of my hands. I know I have to be patient and it will be ok, but I feel too old to be patient. I don have that much time left to be patient!!!!!!

Daughter has asked if I am available to help with the kids. They need ferrying to various activities. And then there is the grand puppy. All these things I love to do when I'm not at work. Also my work itself. It's only three days a week now. I'm 76. But I worry if that will be too much. I love my work.

Ah well, at least taking the Pred at bedtime has allowed me to wake pain and stiffness free so that I can function until my late afternoon slump. Focusing on the positive.

Cheshy72
Cheshy72 in reply to Hindags

Oh you poor thing, it all sounds a bit much. I am very lucky not having to work and grandchildren grown up. My husband does a lot for me so I should be focusing on the positives from now on as well. Thanks x

I feel so bad when I hear people have to wait such a long time for both diagnosis and medication, knowing that the initial fix is so easy and so fast for most! If you are not on prednisone yet, I would insist you at least try it for a week...(I don't think it will kill you!) if in fact you have PMR, you will feel better within days, sometimes hours! My rheumi put me on before the tests were even in.

I also benefited from warm soaks in the tub and went and bought a low voltage electric blanket .... heaven!

Hope you get some results soon, Cheshy72, preferably before Oct 18!!

Cheshy72
Cheshy72 in reply to -LJ-

Thanks, I will be going on Monday and insisting on medication.

Cheshy72

Thanks for the empathy. Some days I'm really glad when I have no responsibilities outside of caring for myself. But mostly I'm grateful for them and the connections to family, friends and work. Don't want those things to change abruptly tho they will inevitably with age.

FYI, I found that taking part of my dosage in the middle of the night helped with morning pain and stiffness. There was a recent discussion of this on this forum. I can't find it now. In the USA there is Rayos. In Europe it is called Lodotra. These are delayed release formulations that you take at ten pm and which release in the early morning hours before the cytokine dump at @6 that causes the inflammation, pain and stiffness in the morning. In the UK there is also an enteric coated Pred that some people take, in the middle of the night.

I started experimenting on my own, taking 5mg of my dosage when I got up to use the bathroom around two or four am. I felt much better in the morning. It did upset my stomach however....so I was switched to Rayos. Others on this forum have something at the ready to eat, yogurt, peanut butter, to line the stomach. I'll look for that discussion tomw. It's too late. Here in California.

Have a good night.

DorsetLady
DorsetLadyPMRGCAuk volunteer

Hi ,

Have a look this link, and maybe show friends and family, the Spoons and the Gorilla should give them an idea of how you feel. As others have said, they aren't being unkind, they just don't understand, and sometimes it gets a pain trying to explain!

healthunlocked.com/pmrgcauk......

I love the fact that we can rant on this forum. PMR is the pits and I find I cope mentally somedays much better than others. One doesn't like to go on about it to friends etc because no-one likes a moaner. So we grit our teeth doing a movement that most people find no problem at all and just get on with it. But it reduces me to tears quite often. So Cheshy, you rant away - we're all on your side xx

I sympathize. Few of my friends get it. When I explain how I feel they respond "Oh, but you look so well. How about we do this, or that?" I now tell those people that I am not going to explain it all over yet again, but that if I say no, I can't do this, that or other, they just have to accept it. Pretending to be okay when we are not okay simply means we have to meet their expectations for activities. and socializing. It took my husband 8 years to get it. He's now very helpful and understanding and can read from my slow movements and my dull eyes, when I am having a bad day.

Yes Cheshy72 there are those of us who don't have elevated blood results of ESR and CRP. My ESR has never been above 16 and only one occasion has my CRP been higher than -1 to 1 and that was not on diagnosis. And yes Cheshythere is estimated to be about 20% of us that don't have elevated blood results and I have GCA and PMR.

I would say that your GP should put you on a week's course of steroids just to see if this elimates/ greatly improves your symptoms. If it does then you have your answer as no other type of pain medication touches it. The GP can still run other tests alongside the steroids just to eliminate other nasties which I'm sure he has already done. To wait for your Rheumy appointment seems unnecessary if you are in so much pain. I would say too that depending on which Rheumy you are allocated to the response may vary. Some go by symptoms alone and others don't but want it backed up by blood results of inflammation.

I don't think either that you can pretend everything is fine. Admittedly we all don't like moaning/ complaining/ going on about things but we do have to admit when we can't do something or need some help- still processing this one myself- long life lesson! Best wishes- let us know how you get on ! X Jackie

It may be that things could be worse, however, it's with your own pain you have to live and I find that very difficult. I am very grateful to my Dr that he diagnosed me as soon as I told him what was wrong, others are not so fortunate, My dear sister ended up with a stroke that paralyzed her left side she was bedridden for 3 years before God decided to take her into his care. I don't want to end up like my sister. Yes, things could be a lot worse but I am still able to wipe my own bum, that still does not stop the pain. I do find that a good rant does help a lot. So if you feel like a rant then go ahead. Gentle hugs. xx

Yes! And no one really understands the reality because I still function okay! Or seemingly so! When I am acute like that, and I've upped my intake of prednisone to try to ward off the acute pain, I take some Arnica. It dissolves under my tongue and usually the pain lessens to the point where I don't think about it quite so much. It doesn't alleviate all my pain, but it takes the pain from a full "roar" to a "dull" roar. I hope this helps some.

Baileyw06
Baileyw06 in reply to nymima01

I use Arnica cream for all my bruises I get just from touching something.Didnt know you could use it in pill form for pain .Where do you get it?I am in Florida.Have you had any side effects ?

PMRpro
PMRproAmbassador in reply to Baileyw06

Possibly homeopathic globules - that is how I have used arnica for surgery to remove metalwork from a previously broken leg. Fantastic - don't ask me how it works, my head says it can't, my heart says "well it did something!". Even the nurses and physios were amazed - not a bruise in sight, no pain, mobile in hours.

Baileyw06
Baileyw06 in reply to PMRpro

Did you use the cream?

nymima01
nymima01 in reply to Baileyw06

I buy it at Vitamin Shoppe. It dissolves under the tongue.

Baileyw06
Baileyw06 in reply to nymima01

Thanks 😊

Sounds like you need the DVD (cost £5 incl p&p) called 'You Are Not Alone' made specifically for family, friends and employers..............No jargon, made by Rheumatologists, Physio's, Opthamologists and Patients. Hard facts, this was made because you come out of a consultation, which last no longer than 15 minutes, you have never heard of it and neither have family and friends, pred makes you look well...............so a double bind just when you do not need it.

pmr-gca-northeast.org.uk - Our Little Shop.

That type of early am shoulder pain sounds like PMR. Does it get better by noon?

Cheshy72
Cheshy72 in reply to Dorey

Yes it does feel a bit better by the afternoon but last night in bed my left shoulder was throbbing.

nymima01
nymima01 in reply to Cheshy72

Mine hits in the evening after 9 pm. That's when I will take the arnica. It says to take 2 dissolving pills, but I take 4. No harm done.

Sorry you are surrounded by a lack of understanding Cheshy. I think that my dedication to this site has done more to convince my lot than anything else. They know I've got a virtual army of support.

Cheshy72

Newbie here :D I started my Pred on Tuesday this week!! My friends and family are all saying you'll be fine by the weekend but having read up about the condition I know that is not the case. I feel your pain literally but how good to have a place like this that we can rant in. Hope things improve for you soon xx

Yes. I was once away with my family girls/ sister in laws etc. Whilst struggling up a very steep hill someone said come on get a move on I thought those steroids make you feel great ? I am 10 years older than her and had just recovered from GCA after having had PMR for 4 years and many flares. Yes i looked ok and you can't keep up a running info of all the ups and downs with all your family and friends. But hey ho there you go. I say nowt now (Georgie speak) just to my beloved when I creak out of bed. Take care all of you xx

PMRpro
PMRproAmbassador in reply to alexgranma13

Shame they were too ignorant to know the difference between corticosteroids and the anabolic steroids weight builders use!

Oh heavens the lack of empathy is unbelievable. They just don't get it. Grrr.

Hi Cheshey 72,l know just how you feel,it is hard to explain to family and friends how this pmr affects us.l too seem to feel a lot better by the afternoon though this is not always the case,l sometimes think it might be better to stay up all night as lying down for hours seems to cause the pain and stiffness to come back each morning,but we have to try and get some sleep.Bye for now x.

Cheshy72
Cheshy72 in reply to Grants148

Thanks for reply. I hope to have some relief in a few days. x

Hindags
Hindags in reply to Grants148

Most of us are worse in the morning because we have just produced a whole new dose inflammatory cytokines which inflame our sore places. The inflammation causes stiffness and reduces blood flow to those places as well and causes that weakness we may feel. By afternoon and evening most feel somewhat better.

I'm at a loss to explain the low I get late afternoon, especially on days when I've been most sedentary around that time or days soon after a taper. If I'm up and about it seems less of a problem. I've tried eating more protein at lunch, a nourishing snack at three pm, doesn't seem to make a difference. Then, whether or not I've continued going or rested, between 6-7 pm I get a second wind and am fine the rest of the evening until I head to bed around 11 ish.

Any ideas? This is getting more troublesome now that I'm flirting with 9.5 mg.

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