I don't have any suggestions or advice. Just want to say how frustrated I would be in your place. No not only frustrated, but also furious. Can't say at what or with whom, just fuming. (Another F word, lol)
BTW what is dry needling?
I'd have thought the rowing machine was the stuff of nightmares for PMR! It would kill my shoulders and legs!
Five years ago when I first went on pred it was wonderful....but of course it didn`t last, only few months.....always had side affects and many flares.....first rheumie wanted me to take MTX but I refused......she then said don`t come back to me until you are down to 5mg, well that didn`t happen. I went 18months, feeling worse, so asked doctor for second opinion from another rheumie.....he is Director of Rheumatology at N&N. He has tested me for GCA...which is fine, but has now said I will treat you as if you have first come to me with PMR and see what happens from there at 15mg, even though I now don`t think it is PMR.....
My fear is that he will ask me to go even higher to relieve the pain, and the battle will continue and be harder.....purely because he dosen`t have the answers......I just hope I`m wrong. I haven`t had any relief this time at 15mg....and I`ve now dropped to 12 on his regime which he printed out for me.
My life is very limited, as I`m sure you remember....pain/stiffness prevents me being able to leave the house, refuse invitations etc.....this makes me feel quite low at times....it seems to go on and on.....
My family are as mystified as me as to what to do.....it`s difficult to explain the pain isn`t it.....Many people can`t believe there isn`t an alternative for me to try, I suggested a DMARD to him, but got no.....
Sorry to moan on, but it`s not having any answers that is so galling isn`t it, as I`m sure you remember also!
Thanks again.....
I would hope he meant "no DMARD until I've seen what's what". Unless he decides it is fibromyalgia - which doesn't respond to pred. He's said what he's aiming for. Of course we all know that his reduction approach doesn't work for everyone! But he's aiming to see what happens - and when taking you off pred leaves you immobile - he will have to rethink something.
I wasn't as bad as you I suspect - but yes, having no answers and having to wait a long time is hellish. I think your line to the family is to explain the doctor want to see if there IS an alternative. It is only for PMR there is no alternative - if he finds you have some other inflammatory arthritis then there are other drugs he can try. But until he see things without pred, he can't even hazard a guess.
Thank you for your reply....
I do think myself it is some other sort of inflammatory Arthritis.....and hope there is a treatment.
When I was leaving the room when I saw him in February, he said I`ll see you in 6 months, he saw my face and then said ok 3 then, and a blood test before you come in... his regime would have had me down to about 6mg by then, it`s very fast!....have been in sheer agony at 6mg in the past.......
My family have suggested and I`ve been tempted to ditch the pred (well it`s not working they say) and try strong a concoction of strong painkillers, but I can`t tolerate them....I struggle and can only take Paracetamol....with little relief from them...what a minefield....
On dark days I wonder if I will always have to live with this pain....and have told myself if I got something lifethreatening, I would n`t bother with treatment, that`s how low it makes me feel some days.....
So fingers crossed......he will have some answers!
After so long you can't just ditch the pred - and the pain killers all have awful side effects too. It really is a rock and a hard place.
But when you DO see him, don't tough anything out - let him see how bad you are. When he greets you and says "How are you?", the answer isn't "Fine..."! Do you go on your own?
Dry needling uses fine needles like acupuncture needles (but it's a different technique) to "reset" the electrical signals in spasmed muscles. My physiotherapist said, when I first went to her a little over a year ago that my back muscles were hard as bricks - bad tone. She used dry needling on me, several sessions, and this made a big difference. I had had trouble with hip pain and that went away. I'd had no idea this was going on in my back. She told me this can get so bad that in vulnerable people it can even cause vertebral fractures!
Thanks for answering. It is amazing what tense, tight muscles and trigger points can put us through. It is also amazing to me that there is so little crossover between traditional medicine and more hands on practitioners.
I bless my osteopath every day. I've been to physical therpists, chiropractors, acupuncturists and each has been helpful, but for my loosely ligamented body, the osteopath has been magic. Even now, with the PMR, she reallyt helps resolve soreness. I think it's because I also have a fair number of myofascial issues that cause the muscles to tighten and take me out of alignment.
Yes, I always go in on my own, (I`m driven there) my husband won`t say anything, so there`s no point in him coming in with me! I have a friend who wants to go with me to back me up....good idea do you think?....she is as frustrated with the situation as me....
No, I don`t say fine....I said last time I feel terrible, and in lots of pain, that`s why he scanned me for GCA.......
I know you are right about painkillers, but I have people say to me, why take the "terrible" steroids, which are making you feel ill, you might as well come off them and take painkillers....but they will still make me feel ill with the side affects I know! It`s difficult to explain to people.....
Yes, it is a rock and a hard place to be in.....very unpleasant....
.
I think the hardest thing is, we expect to go to hospital and get some answers....but that isn`t happening and other people can`t understand that when I tell them either......
The sun is out today.......so I will sit in my summerhouse, ...that cheers me up for now, getting out for a while............small things.....
Thanks again.......
Would you mind telling me roughly what the Osteopath does, I am trying to decide (will probably go for dry needling as well) which therapy to go for.....must get at least some of this pain under control.....
Thank You
" It is also amazing to me that there is so little crossover between traditional medicine and more hands on practitioners"
There is in medicine in the Germanic countries - I live in northern Italy (German-speaking so our doctors often train in Austria or Germany) and my GP, the pain clinic and the rheumatologist I'm seeing all use this sort of therapy. It seems to be an English-speaking thing to look down their noses at it.
Unfortunately there aren't answers to everything in medicine, even in 2017.
There is new work being talked about today about a big increase in risk of heart attacks (I think, must look it up) with taking painkillers. Most NSAIDs are known to have that risk but this seems to think it is major.
And really - all pred is for us is a very specific painkiller. That works for very specific things.
I've just made an appointment to see a naturopath who can order Vitamin D tests for me. Trouble is my insurance for a naturopath is very limited, especially considering how costly her first visit plus the test will be, so this is not going to be a longterm relationship. I think it's not just a problem wiht the training the various disciplines get, which tends to prejudice them, but the system isn't set up to allow cross fertilization of ideas. If I can have a ten minute appointment with a GP (for which she probably gets about $35) which costs me nothing, or a much longer consultation with a naturopath, for which I will be paying $165 plus the costs ($75 for a blood test) of any tests she orders, first of all I'm not likely to visit the alternative practitioner much, but also the GP is likely to feel some resentment that the naturopath can charge a much larger fee and does not have to fill in masses of paperwork to prove to the government overseers that I actually had an appointment with her.
It would be far cheaper to get the lab in central England to send you a few cards - they charge about £30 per test for foreign orders. You'd get a couple for your naturopath's charges!!!
I don't think it will hurt to have a consultation with the naturopath, I do have partial coverage, and she may have a solution for me in order to get the two more tests I'll need so that I'll have had quarterly tests. Also I'm hoping return visits aren't as pricey. The physiotherapists always charge more for a first visit but follow up is significantly less.
How can you possibly have blood tests done long distance? Who draws the blood? I'm certainly not doing that!
It's a finger prick technique - you have a piece of what is effectively blotting paper and you fill out a marker area with blood. They extract the blood from the paper and do the measurement. It is a common technique, been used for many years for the heel prick test they do for newborns amongst other things. It means blood tests can be done in remote rural areas where there is no local hospital lab that can do more than the basics.
OK. That explains why the test the ND will do is able to be sent off to some distant lab out west! So now i wonder why on earth does the lab draw numerous vials of blood when presumably one is all that would really be necessary? Adds to that oversupply of medical waste....
The multiple bottles of blood are usually a) for different labs as in clinical biochemistry, haematology, and so on and b) because different anticoagulants (or none) are required for the various tests. You can't do some tests on anticoagulated blood because they need the serum - you let the blood clot and centrifuge it and take off the clear bit. Or plasma where you centrifuge anticoagulated blood and separate off the clear bit. Or whole blood. Every different coloured bottle is for a different set of tests.
Eileen would be grateful if you could post the address of the midlands lab you mentioned for vit d test
Can't post the address I don't think but if you google "vitamindtest city assays city hospital dudley road" you will get a link to their site. In fact, you will get a page of links...