As I read posts from members I notice a common theme. That one of the activities that's the most likely to cause misery is traveling.
Now I don't feel so bad. I've been thinking I was turning into a wimp. Traveling every day, all different hours of the day and night. Seven days a week. Week after week. There's nothing wrong that I can't handle! At least I tell myself that
At least now I know I'm blessed to be doing as wel as I am! My family doesn't get it. Parents, sister etc.
it's beyond their realm to even try.
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CrazyTrucker
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I think travelling is quite tiring, even for perfectly fit people. Unfortunately many friends/family don’t get it, but we do, so feel free to have a moan, chat, laugh any time - that’s what we’re here for.
Have a look at the attached, you might be able to explain it to them a bit easier afterwards
I agree, traveling is a bit challenging. Since I am almost retired, I started taking lots of trips. Thanks to your advice, I board flights early, get help with my luggage and make sure I get as much assistance as possible. However, even when I go to my apartment in the city on weekends, I find transition tiring.
Accepting the fatigue part of PMR in all aspects of a new normal is a slow adjustment. Glad you and all the forum friends are there for guidance. Thanks.
Some of my family don`t get it either, and they can see for the last month the pain has crept on so bad I am stuggling to get out of bed, can`t bend to put socks on, and yell when I have to get in the car....what else do they need to understand it!...but boy whenI see my useless rheumie in 3 weeks (if I can bear it that long).....he will "get it".......oh, doesn't pain make you awful!
Good job we can vent our feelings on here....thank you all....
No, you're not awful. You are having a normal response to adverse circumstances.
I found out that people responded with kindness and understanding when I set my own limits and stuck to them, when I stated specific things they could do to help me avoid fatigue and pain, when I suggested and planned outings and activities that we could enjoy together. Part of the solution was changing my expectations of myself, and part of it was changing my expectations of others.
As for my rheumy, after the holidays I'm shopping for a new one with whom I can be a partner in my treatment. I'm not good at taking orders without being convinced that their diagnosis and treatment proposals make sense.
Thank you I quite agree, I hope you have better luck than me with the rheumy, he was a second opinion, unfortunately they all follow the same protocol in my hospital... Right now, I don't have the energy to look elsewhere....it amazes just how much being in pain can change you as a person. It's normally me sorting out everyone else.....and yes, that has been part of my problem....😕
Well one thing you know is that if you've acquired the skill set to sort others out, you can yourself out. Now we also need to find out the difference between what really needs our attention, and what we need to leave to others. It is amazing how people step up when we step to the side. We've given them good examples through good leadership. Now let them take a turn.
As for doctor shopping, I'm in the States, so our health care systems differ. I'm constrained by which doctors/clinics/hospitals take my insurance.
In the UK you are constrained by your GP really, who they are prepared to refer to. Theoretically, in England you can go anywhere if you are happy to pay to travel there. In practice - it isn't quite so easy. Scotland and Wales is totally different.
I am a PMR patient research partner for OMERACT (google it, takes too long to explain) and at the last meeting in Whistler they were talking about being partners with the patients - doesn't work if they aren't they said. Yeah...
At least I have the courage of my convictions to stand up for what I feel I need - I feel so sorry for the patients for whom it is a constant fight.
I can normally stand up for anyone and anything.......but I am amazed how low and deflated I feel today, the pain it seems is worse than when I was first diagnosed....6 years ago, and I have tolerated it for a long time....
My doctor last week prescribed Amiltryptiline, to help with pain/sleep.....it isn't touching the pain. Can n lowering 1mg a month do this I'm at 9 now? Paracetamol is useless too....
I rang to have physio, but she said with your condition, I would probably make you feel worse, I admired her honesty....but no one seems to have any answers.........just that I have to get off pred!!
Just keep hoping tomorrow is another day, which must be better.....
wow, something is up..a bad flare? Perhaps you need to go back up on prednisone again, just to get by this stretch..did anything stressful kick this off this time?? Im looking forward to feeling better not worse after time..scary...time for a second opinion perhaps....keep battling..perhaps, just for a short time, you need a stronger pain med...hope you soon have a better day..usually my crappy days are followed by a much better day thankfully...im just new to this..
Don't go by what I am like, we are all different, I am sure you will be fine if you lower slowly, and don't be in A rush to get off pred too soon, listen to your body before you listen to your rheumie........biggest mistake I ever made, and after 6 years, they now say perhaps it never was PMR, but don't know what it is!!.........
No, I know what that is.....the worst pain is across my back from waist down, to lower back hips etc, struggling to get out of chair, turnover in bed. Can't put socks on etc, can't bend.....crawling upstairs! Husband doing most things....after all these years....ridiculous... that's being polite!
The pain isn`t down my leg like sciatica....but Rheumy said only take paracetamol....what a joke that is. Now trying an anti depressant that should help nerve pain and help me sleep....it`s giving me a few hours sleep, but hasn`t touched the pain as yet....and as a bonus might lift my mood!
Think another choice might be tramadol..... I think I can take that with pred......just hanging on a few more days in case the other does kick in.....thanks for that....
You can take opiate type pain meds while on prednisone, I do at times for pre existing OA in knees...has your Dr mentioned neurotin or lyrica for nerve pain? Works for some of nerve pain is what you have..
Not sure you have these pain meds in the U.K...hydrocodone based pain meds..Norco and vicodens...fairley strong but weaker than OxyContin..not anything to take lightly but I have no problems with them..as needed..
Longtimer, I think you posted elsewhere that your doctor is beginning to question the PMR diagnosis and making you wean off pred to try and sort things out? I don't know if you have to come off pred completely for that, after all there is the adrenal issue to be considered. It's also possible that you have something in addition to PMR rather than instead of PMR. I think there are some conditions which mimic PMR but will actually respond better to different medication. It would have been helpful to you if your doctor were sharing with you what other possibilities they are considering. I suppose they are concerned about the diagnosis because pred has not been giving you the relief usually expected, even when you were at a dose somewhat higher than most PMR patients need for maintenance after the initial inflammation has been cleared out and suitable tapering has taken place to lowest effective dose. Is this right, or have I misinterpreted your posts?
You are right, but I just wish while in this pain my rheumy would come up with some ideas as to what he thinks I have! My sister has RA and has just told me she isn't in the pain I 'm in......he says I have together off pred for him to decide......well, that will be approx 7 months away. ......at least!....
My sister is coming with me at end of month when I go to see him.......oh joy😠
I wish you lots of luck. Hope you get answers soon. It really isn't fair to make you suffer for months and months like this. What level of pred does seem to help you?
Went on 15 mg 6 years ago.....wonderful, got off in under 2 years, it returned within months, now when going back up to 15mg, as directed by rheumy, pain still there, but nowhere to the degree that I have now....it kicks in bad when dropping from 10....
This Is why rheumy says it' s not PMR.....because I wouldn't be in pain when dropping!
He dosen't know anything, he tells me things that are contrary to everything I have read or spoken to anyone with PMR.....it's quite worrying really, where does that leave us patients.......when I challenged him about it, he said, none of my patients have had pain or flares when reducing!!
How blooming wonderful does that make him😇
Words failed me, and that's a rarity....
Any suggestions if printable, when I go in 3 weeks?
You need to go to someone who hasn't such an ego that thinks HE is in control of how PMR (or whatever it is you have) works - and you know who I think you should see. It does have to be someone in another Trust.
Yes, I agree.......it will be my last visit to him in 3 weeks time, there's no point seeing him, when he says I 'll see you in 3 months, I say it may as well be 6, he says no 3......I've worked out why......when I first saw him, he asked if I would sign up to Vasculitis research, which I was happy to do......if only to help others......I think I'm one of his guinea pigs, and just wants my blood!!
Oh dear. Don't want to second guess your doctor but it sure sounds like you've been a victim of too fast tapering this time around. If one of the reasons your PMR diagnosis is being questioned is because you experience increased pain when you taper, well, can you get another doctor who understands PMR? I have tapered as slowly as possible the past twenty months or so, and even I, careful as I've been, triggered a (fairly minor) flare when I attempted another reduction. I'd been dropping something like .5 mg every three or four months for about a year. I don't think there is anyone who would question my diagnosis, I'd simply reached the lowest effective dose to control a disease which is still active. Does your doctor think pred actually cures PMR, which is why he/she thinks you shouldn't be experiencing pain any more?
I have dropped very slowly ad well over the years.....but his thinking is very skewed, will not be seeing him in the new year......he has only ever put me in more pain
The old muscular tourettes syndrome when even minor movements make you shout and swear without necessarily meaning to. It's difficult for people to understand as it is so subjective. So-called invisible illnesses bring further mental pain trying to get others to acknowledge it's real. Some members of my family only believe blood tests or other such things. Hope you get a bit of understanding and less pain!!🌻
CrazyTrucker, are you able to modify your work schedule? I assume this is what you are referring to in your post. It sounds like there's no time for your body to even begin to recover from PMR if you are working so hard and long, irregular hours.
I've modified it some. I used to drive 3000-4000 miles a week. I do way less now. Part of the issue is I can't take prednisone long term. It destroys my blood sugar. Which keeps me off the road.
So far essential oils have been my salvation. Don't work as well as the prednisone but I get by
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Pain returning...need advice
Update to \"Back at 10mg what to do now?\"
please can someone advise is it a flare or withdrawal 🥴
Connection between onset of PMR and travel to Central America
To vacation or not to vacation? Or when to go?
