PMRGCAuk
7,553 members12,533 posts

Venting

One of many of the frustrating pieces of this condition is the response and unsolicited advice from friends and family : how to exercise, how to eat, etc..etc. All things each of us already know. As if - just do this and you'll be fine. I know they want to help but there are no easy fixes. I think most people don't take PMR seriously. Sometimes I don't have the energy to explain. They just don't get it.😕

Actually, many doctors don't either.

80 Replies
oldestnewest

These are all valid points PMRpixie. I don’t really engage with “civilians” about the disease if I can help it. I have occasionally said that I have inflamed blood vessels, that seems to close the conversation, it sounds so awful. I think that PMR in particular, bores doctors. All they can do is prescribe Pred and then nag you to come off it. If they knew what the pain felt like they wouldn’t think that, the most powerful drug they have in their arsenal, is over-kill.

Another rant. Perfect place to do it. 🤛🏻🤜🏻 Those are supposed to be ranting fists, they look a bit odd.

17 likes
Reply

Hahahahahaha! “Civilians,” love it!

4 likes
Reply

Hi

I’m afraid it was ever thus with so-called “invisible” diseases! They would be sympathetic if you had a broken leg - a. they can see it, and b. it doesn't last very long (unlike our illnesses).

Just do what the rest of us do, nod gently, smile and then ignore what they’ve said.

Or try and educate them (if you’ve got the strength, so it will have to be a good day) - print this off and make them read it..That’ll teach them!

healthunlocked.com/pmrgcauk...

Or alternatively do you are doing, have a rant on here!

8 likes
Reply

I so agree, PMRpixie, I get so fed up with fending off all the suggestions- do you think I haven't thought of that? Do I have to try everything before you shut up? I am not looking for a solution, just some empathy and understanding. I have some "well-meaning" friends and I know that mostly it comes from a place of love,but why don't people just ask what would be most helpful to us? It wouldn't be solutions but love and compassion .

12 likes
Reply

HA! YES!!!

And if one more person tells me I'll feel better when SPRING arrives... I'm going to puke!

7 likes
Reply

No - they can say that because it is true after this long winter. But it won't make much difference to the illness - just the sun is nice...

3 likes
Reply

Well... I guess there maybe an ounce of truth in that! ... but I may still just puke on principle! ; )

5 likes
Reply

Oh you make me laugh. The first day of spring I will imagine you puking.

1 like
Reply

...and even if I (by chance) I do feel better, I'll tel them all I feel like crap anyway!!! ; )

Reply

Have a Vindaloo beforehand Violet Elizabeth!! Should get the message over!!!

4 likes
Reply

That may do it!!!!!!

Reply

My husband had to explain "Violet Elizabeth!" too funny!

Reply

🤢🤮 so THERE!!!

1 like
Reply

Hahahahahaha! Thanks for that!

Reply

I dont know whether its good or bad that I have got used to it from having fibromyalgia for years. For me PMR and the fact that I have to take "proper medicine" rather than "just painkillers" has meant less suggestions and comments. Having blood tests that supported it was a boon to stopping expectations of my abilities. The introduction that Dorset lady put out really helped my friends and family understand. That said my closest family/friends have always been supportive I suppose because I don't put good face on IF I feel rubbish. The problem for many of us might be that pre dx we do look ill living with pain. I was constantly grey with pain. The steroids have given me rosy cheeks for the first time in my life. When all else fails I nod, smile then leave.....and usually go for a Nap!!

4 likes
Reply

All this sounds so familiar, probably, to so many of us. I do very little “ socialising” and try and avoid those who I know will wind me up . Unfortunately I am now even more confused as eventually saw a rheumatologist for the first time in January. Very thorough, and has rightly, as it turns out detected impingement in both shoulders and also torn tendons, so I can now understand why I have THAT pain! However, she thinks that Polymyalgia is no longer “ active” and that I now have an overlap of Fibromyalgia. I really don’t know where I am with all this but am coming down from the Pred she wants me to be at 10 msg when I next see her, hopefully in April. Must say, am not sure I am noticing any difference in the pain I get at the lower doses.

But certainly we don’t need people telling us what to do when they have no idea what it is like to have what we have.

2 likes
Reply

If you can take codeine the otc stuff might help fibro. Are you in the uk. And have you been referred to the pain clinic? If not try and get them to do so. Really helped me in the early years. Lots of nice warm towel round your neck. If you have a tumble dryer use that to warm. If not 30 mins On the radiator than wrap around. If you can use a tens machine (no pacemaker) try one. Stick on top of should and crank as high as you can stand. Might be number 1 to start with. Hope you feel better soon. Haha just spent message telling you what to do. 😲😂

Reply

Yes, am in the UK. She has given me a reference to something called ReConnect2Life based in Torquay which goes over problems to do with Fibromyalgia and how to deal with them. I am to see a Physio next week, though whether that is for Fibromyalgia or my shoulders I don’t know. Fortunately I have recently met someone who also has Fibromyalgia and sent me a link to a US site on it which I have found very helpful. It is taking me a long time to adjust to these new diagnoses. Feel rather left in no mans land ! But thank you very much for your suggestions! You know what you are talking about! All gratefully received!

Reply

yep with you there. Poopadoop - had fibro for years - people take it a bit more serious if you have to take steroids. But of course you must be fine now with the steroids!!! Can't win!

1 like
Reply

Is it possible to suffer from both fibromyalgia and polymyalgia? A friend asked what was the difference, I checked symptoms and I'm so confused. I seem to have so many of the symptoms. I was asked if I could have an operation to cure me!!!

Reply

Yes. There are a few of us with both. They are similar in pain and impact on an individual basis. Main test for which symptom belongs in each illness is that pred does not help fibromyalgia. Pain killers used for fibromyalgia don't help PMR.

Other pains can hover around too like Osteoarthritis, myofascial pain etc. It's just about listening to your body and taking mental or literal note of what hits when and what activities /meds impact you.

Reply

Yes it is - and a lot of the symptoms overlap so doctors who don't know any better seem to struggle to work out the difference. Most people who have both had had fibro before the PMR joined in the game and can tell the difference. The fundamental difference is that fibro is NOT inflammatory - which means that it does not ever lead to raised blood markers and it also does NOT respond to pred (whatever some doctor will try to tell patients). Unfortunately 20% of PMR patients don't have blood markers out of the normal range - although they may be raised for them personally (like me in one massive flare).

Many doctors wax lyrical about trigger points in fibro - but some of those trigger points coincide with the trigger points which develop in something called myofascial pain syndrome. This parallels PMR in that it is due to the same inflammatory substances except they are concentrated in knots of inflamed muscle fibres formed in pairs on either side of the spine in the shoulder muscles, about waist level and in the low back, about where the baby's dimples are. They also affect the muscle fascia, the transparent thin skin that you will have seen around joints of meat or poultry. It is found more often in patients with PMR. It does respond to higher doses of pred but may return at lower doses.

Isn't it touching how people seem to think there is an immediate cure for everything - medical or surgical? Sometimes only time can provide a cure.

2 likes
Reply

Venting! That's what we are here for. Definitely frustrating. And this forum gets it!!

3 likes
Reply

Well quite - they can't SEE it. So it obviously doesn't exist...

4 likes
Reply

It has been suggested to me it's the "in" thing to have!!!!!!!!!!! and obviously over diagnosed "far too many found to be suffering from it now" and that from someone attached to the veterinary profession I simply go deaf to all don't waste your energy trying to explain. When hearing bilge like this what goes on in our heads thank heavens stays there he he. We must not have murderous thoughts!!!!!!

4 likes
Reply

Why not?

PMR is the most common cause of rheumatic symptoms in the over 65s - that has been known for years. So hardly a new disorder - maybe we are being more successful publicising it than we think...

4 likes
Reply

After 6 years on pred, the thing I have to contend with most is......there must be something other than steroids that you can take!!!.....and when they then say, have you asked your doctor, I think they see the look on my face and back off!😈

6 likes
Reply

Does it never occur to them that if there WERE something other/better we would be on it?

4 likes
Reply

Exactly....my best friend who is brilliant usually...after I told her I was now pre-diabetic said, I refuse to believe there isn`t an alternative, why don`t you refuse leave GP or rheumies office till they prescribe something else!!, to which I replied...I`d better take a sleeping bag then, because he will lock up and go, ....there is nothing else...

6 likes
Reply

Well, I suppose the truth is, there is now: tocilizumab/Actemra. So the response to them for that is that it isn't available on the NHS and would they like to pick up the £12K+ tab for you. In which case it won't be a problem...

4 likes
Reply

Will try that next time......watch this space...

Would be interesting to know if anyone with PMR would pay for it.....there might be some very well off people out there....

1 like
Reply

There are a couple I know of. One person in the US is paying $1,800 every 2 months, think she has a deal: buy 2 get one free. One in the Far East has been paying more. I'm fairly well off relatively speaking - I couldn't afford that.

Reply

Has it worked on a par to pred or is that not evident yet?

Reply

It isn't a comparison - you take pred and reduce the dose while getting the injections. It seems to allow a reduction from GCA level doses of 60mg to under 10mg in 6 months for many patients. You use the pred at the outset to reduce the inflammation reliably. You then use the tocilizumab as a steroid sparer - it does presumably stop the disease process but it wouldn't be ethical to risk it doing so quickly enough to remove the risk to vision.

The study met its primary and key secondary endpoints - now the study is in the long term follow-up phase to see if/how long remission lasts. But it is approved for use in GCA even in the UK under certain criteria.

This reports the end of the study in 2016:

rheumnow.com/content/giacta...

4 likes
Reply

Duh. Sorry brain fade hit. Had already read that in the articarticle and another thread. I suppose I was thinking that it wouldn't be cleared for PMR whilst so expensive as not ultra high dose of pred for PMR. I am going to pickle my brain for a couple my days. 😲

Reply

Exactly - though hope springs eternal that it may become available for refractory PMR. There are people in the USA and one in Aus who are on it for PMR and it works (so it should, they are just different points on a spectrum). But I don't hold my breath hoping - and are the potential side effects really going to be worth it for PMR pred doses?

2 likes
Reply

Exactly.

Reply

When I started pred I couldn't believe there wasn't anything better. I mean, it doesn't sound like it would be that difficult to find something which targeted the culprit, does it? Didn't take long to be enlightened, and now I quite like the fact that if I have to be sick I have a mysterious ailment! I do not, however, like the fact that big bully med pred is all I have, but we get along reasonably well most of the time.

1 like
Reply

You can treat pred like the gorilla in the house too...

1 like
Reply

Don't forget Pred was our very bestest friend after 24hrs or so when we could turn over by ourselves in bed, not have to sit on the loo for an hour because our legs couldn't push us up, and not cry getting in and out of cars, be able to put our arms up high enough to brush our hair -

SO PLAY NICELY NOW!!!

7 likes
Reply

I know that. ;) Have you read my old post?

healthunlocked.com/pmrgcauk...

1 like
Reply

Longtime - you hit the nail on the head! (Isn't there something else you can take?) It's like - wow, why didn't I think of that! Haha

2 likes
Reply

Exactly....after 6 years......well, I sometimes can guess what they are going to say!

Reply

🤣

Reply

I swear if one more person says, ‘Oh, you must come off those, there really bad for you.’ I won’t be responsible for my actions. Let’s face it one of the many side effects is a short temper! I point out that without the steroid meds I would be in pain and not able to move. I’m told ‘But you look really well.’ As though It’s all in my imagination. Probably the worst comment is, ‘You sound alright.’ For heavens sake, it’s my body that’s the problem not my voice.

I recently had a bad fall, bruising my face badly. As that was a visible injury everyone very sympathetic. Kind of them but......for the last two years I’ve battled this hidden disease, felt truly awful and haven’t been believed.

And then there are the people who say, after you tell them you suffer from severe fatigue, ‘Oh yes I know I get very tired.’ My friend you haven’t a clue.

At least this forum enables us to let off steam. I swear if I had more energy I would have clouted someone but I’m not wasting precious energy resources. At least all on here understand.

7 likes
Reply

I remember someone saying "It isn't my face that's ill."

And ultimately, without the pred any of us COULD go blind. Unmanaged PMR is more likely to progress to GCA. And untreated GCA leads to over 30% of patients losing their sight.

And would these same people be crass enough to tell a cancer patient on chem/having r/t that their tiredness matches theirs? Don't answer that - as I'm sure the answer in some cases would be yes...

4 likes
Reply

Hi Jean, my friend said 'You must come off them' too! She then suggested that I enrol on a listening books site to meditate before going to sleep! SLEEP - what is that??!!

Reply

Oh I know, Jean 56 - you're speaking for me, too. Especially the fatigue part - that's often what they say. Even my GP said exactly that once - and I was so taken aback I didn't argue. But I should have done. Presumably he'll never know - but he's a doctor, for heaven's sake n ought to know how to listen. Or observe. If only. Not nearly so keen on that GP now. And he's supposed to be the 'good' one in the practice! I could go on. People can be quite insensitive sometimes. Without this forum I'd have felt quite isolated. Hugs.

Reply

Yes, doctors can be extremely insensitive. Before I was diagnosed my doc of 35 years told me my inflammation levels were not high and suggested it was a lack of vit D. He prescribed tablets for this supposed imbalance that were meant for patients with kidney problems who were low in vitD. Reading the info that came with them, it said I needed regular blood tests. I queried this and was told I was fussing and to ignore it. I didn’t! To cut a long story short my wonderful pharmacist stepped in and another doctor st the practice contacted me, telling me to stop taking them immediately, I already had. Pleased to say the doctor prescribing has retired. It still took another 4 months before PMR diagnosed. Even then the doctor wasn’t sure that it was the correct diagnosis. It took my husband telling him I couldn’t go on like this, hardly being able to lift my arms, not having a life and me bursting into tears. He prescribed 28 day course of Pred and within 2 days I could move. Thank heavens for this forum and all the wonderful people who share their knowledge and laughter with us all.

1 like
Reply

One friend said I'm going to look like a weightlifter if I keep taking steroids,one said I envy your puffy face as the lines don't show and one continually asks how my back is when we meet?? Nobody gets it!!

1 like
Reply

No unfortunately they don’t. That’s why this forum and the various groups around the UK are so important. We all understand what the other is going through and therefore don’t make hurtful or stupid remarks through ignorance of the disease.

If nothing else, GCA has reinforced the message to me that just because someone looks okay, it doesn’t mean they are!

4 likes
Reply

Prats - we are on CORTICOsteroids - not ANABOLIC steroids. Totally different substances...

And frankly - if you can't produce anything but a backhanded compliment - why bother? It doesn't help!

Reply

No, and I doubt they ever will....

1 like
Reply

Oh how true Pixie. They drive me mad. Like you i have days when i just dont have the energy or patience to explain. Get very unsociable sometimes & think just go away & leave me alone. No one knows how you feel or the pain you are in.

2 likes
Reply

My latest - "I thought that was supposed to be over in three years, haven't you had that awhile now?" And - "Oh yeah, that's like fibromyalgia isn't it?" Sigh.....

Reply

I so get this post pixie. Because it can’t be seen and is not widely known about, people regard it like ME, as a pseudo illness. Like you I get tired of explaining it. I could have been like that once too, however I will always listen to people who suffer in future, whether it’s a hidden or apparent reason.

Reply

I forgot to say, my standard explanation is:

Poly= many, myalgia = painful muscles, ergo many painful muscles. I lose them after ‘poly’!

1 like
Reply

I never use the terms PMR or GCA or their names in full as I see their eyes glaze over as they try to stifle the boredom!! I usually just say it is an inflammation of the veins and arteries that prevent the blood flow and that produces pain, stiffness and fatigue. They usually don't want to know anymore!!!

4 likes
Reply

Hi PMRpixie,

This is my one of my favorite posts because you and all are spot on! After being dx'd 1/2018, and flailing about trying to explain, my DH and I decided we were just not going to talk about PMR anymore socially. It wasn't going to be a topic at the dinner table with friends and family.

I don't want pity so if someone needs to know, I just smile and say 'My immune system is compromised and I need to limit close proximity to germs' and they are very polite and don't pry. Their brain can color in the details any way they want.

If someone says 'You should blah blah blah' to my sister, she says ' Quit shoulding on me!' ;)

Have a great day!! Diane

3 likes
Reply

No they don't get it...."oh yah, my shoulder is sore today too"...or they think that somehow my OA in some of my joints is now better...nope, still there bubbling under the surface of this PMR...that's why like the meme says "just smile and say I'm fine"....of course then they think your better...to some its like a contest to see who's sicker I think...strange..that's why I don't talk about it to the "outsiders" haha

Reply

'a contest to see who's sicker' - that sounds familiar. One 'friend' in particular I'd like to detach from for that reason - but she lives so nearby . . . All she ever does is raise my stress levels. Going to try that mental belljar somebody mentioned earlier.

1 like
Reply

I'm not telling my OH's mum or daughter as they would not understand, and they're like that song 'Anything you can do/have, I can do/have (worse). Still not diagnosed properly yet!!

1 like
Reply

it's the loneliest illness.....my wife is really understanding and supportive, but I find myself seeing less and less people... I am in the middle of a huge flare, or something else (who knows?) and I can feel myself withdrawing behind the glass wall of pain....

1 like
Reply

I am so sorry caterpillar, I do hear you and know what you're saying. At least on this forum we do not only hear your pain, we feel it. I, too find myself isolating myself a bit like a cocoon where it's "safe" and no one gives me advice. You are not alone.

3 likes
Reply

Right there with you caterpillar. Hang in there x

1 like
Reply

Sometimes I use mental bell jar to place the irritating people in rather than wall myself in.

1 like
Reply

Must be a big belljar...

Reply

Yep. I have become very competent at chucking them in quickly. No longer do I give people a couple of chances. I am civil but detached.

1 like
Reply

My wife's my only support group, she can tell when I'm feeling crappy...withdrawal from society is the norm I think, I love the comfort of my house more and more...hope that passes when nice weather gets here cuz I like to roam..

1 like
Reply

I hope so too deworm, I have a camper van, and I love to roam too, but as you say, of late, once I get through my front door a very welcome of feeling finally safe overwhelms me...

1 like
Reply

Haha, sad state of affairs hey..I've read that it's actually a protective thing that's evolved through time, where humans and animals when ill or in pain seek a comfort zone to lay low and allow the body to repair..who knows...but I think once nice weather gets here I'll be out and about...

2 likes
Reply

My husband broke his hip and is hobbling around on crutches. I don't exactly envy him, but all I get now, however bad I'm feeling, is "How's your husband?"

Reply

My husband just tore his meniscus. So I hear ya!! I'm not looking for sympathy but a bit of understanding would go a long way. It may be an invisible illness but we do have feelings. 😧

2 likes
Reply

My husband is due to have a knee replacement next month. It needs doing and I have sympathy with his pain and lack of movement. I’m just worried about looking after him once he returns home. Will I have enough energy to take care of him and do all the things he usually does around the house. It’s hard when you’ve always coped with family illness in the past. Ten years ago my husband was in hospital recovering from a brain haemorrhage, my father in law was in another hospital seriously ill and only given a matter of days. I was looking after my mother in law and my 90 year old mum. I coped, not sure what I would do now. I’m hoping I would cope because you haven’t any option and you just get on with it. If that makes sense. I do seem to have trouble with joined up thinking!

Reply

More hugs, Jean 56. Life doesn't get any easier, does it. Wishing you strength.

Reply

"Jeez, you don't look sick"..no, sorry, I don't..BUT I AM..

Reply

Im sorry, completely understand. Ox ..

Reply

Diagnosed with PMR 14/02/18 and currently on 20mg pred. Not really helping with the pain and am extremely tired all the time. Does any one know when the fatigue will pass?

Reply

First of all - if you have been on 20mg pred since the middle of February and the pain is no better, someone whould either be upping the dose to 25mg (max recommended starting dose) or questioning the diagnosis. The characteriestic of PMR is that it responds well in a week or so to the starting dose which should be between 12.5 and 25mg/day.

rheumatology.org/Portals/0/...

However - when you started the pred, did you immediately try to go back to "normal" duties? The pred only manages the inflammation to relieve the symptoms. The actual underlying cause of the the symptoms we call PMR is an autoimmune disorder that makes your immune system attack your body tissues by mistake. That causes flu-like symptoms, the sweats and so on, and leaves your muscles intolerant of acute exercise. They are unable to tell you you are asking them to do too much and are more easily tired and develop post-exercise soreness much more easily. They also take far longer to recover - even when you rest. If you don't rest, they don't recover. That is what also creates the fatigue - it is a given with almost all autoimmune disease. That is up to you to manage with pacing and lifestyle changes. And as long as the underlying autoimmune cause is active - it will remain I'm afraid. PMR lasts between 2 and 6 years for about 75% of patients. I still hit a brick wall of fatigue at times, nt often, I've had a long time to practice. But it is an occupational hazard with PMR!

Try reading this:

healthunlocked.com/pmrgcauk...

1 like
Reply

I feel like saying something monty pythonesque at times. Like “ I’m turning into a horse”. Horrible of me really. Xxx

Reply

You may also like...