A Letter to Patients with Chronic Disease | Arthritis Information

 

I've seen many of these doctors only a couple of times because after meeting them I've realized they weren't for me so I'd have to get on my insurance companies website to find another in-network provider to find someone to help with my pain.

 

I've wasted so much money trying different medications that didn't help, co-pays, physical therapy, injections, surgeries, along with every test imaginable.  I've pretty much given up on the doctors, had to quit working and have filed for SSDI which admits that I have severe back issues but still they deny me benefits.  I do still see my pain management doctor monthly because Social Security would think that I wasn't trying continually to correct my problems.  No doctor can stop the degenerative disc disease from destroying my disc or stop the bone spurs from developing from the vertebrae and facet joints rubbing together.

 

Now this PMR thing.  I'm trying to work with my new rheumatologist but as the letter said I think I have more knowledge than she does regarding this disease.  This disease is not as understood in the United States from what I can tell.  You can't push too hard though with doctors or they will get an attitude and your care could be jeopardized.  

 

When some of you say that your doctor allows you to control your prednisone on your own I find it amazing that you have found a doctor that will allow that.  I've never met a doctor in the US that would work with a patient like that. 

 

Think I've rambled on long enough.  Thanks for the post Mrs. E

 

With you all the way! I'd spent hundreds of pounds over the years on physical therapies and the gym (for aqua aerobics) which kept me reasonably mobile and in less pain. I've always had back problems since my mid-20s and when the PMR really set in about 5 or 6 years ago at a point where I thought I'd got the back pretty much under control I was gutted. Since I presented the docs with a suggestion and found someone willing to listen and give me steroids I have had less pain than for years. But before that I had had GPs who were baffled at the normal blood results, rheumatologists who diagnosed osteoarthritis and nothing else (those symptoms have gone on the steroids) and physios who needed a clip round the ear - at least living in the UK it hadn't cost me anything for that! We have less freedom to move than you do, however, we can only go to a GP who is "in" our residential area and although theoretically we can go to any consultant in Britain, the practice is a different matter, of course, and the previous government removed the ability for a GP to refer to a named doctor at the hospital which had always worked well before. This meant patients who had seen the same person (or his team, at least) for years previously suddenly had no say in who they saw for a new complaint needing a new referral.  On the whole, however, it does work quite well and no-one will ever be left abandoned or facing a massive bill they can't pay off even if they work for the rest of their life. There may be restrictions on some drugs - but that isn't any different in your system with co-pays for the more expensive ones and some insurers not covering certain drugs at all.

 

You're right - some doctors won't play ball, but the good ones often do and they are precious and need all our co-operation. The bad ones are the ones who, in your system, see you as a milk cow and offer procedures and medications that will do little good just to keep you on their books and coming back with your cheque book. In our systems in Europe the bad ones are just poor doctors who don't know their stuff - but they aren't in a position to bankrupt us!

good luck in your oddessy for pain relief and take the downloads from MrsUK's site in England for your rheumy to use as bedtime reading - that's how she will learn. She will be less likely to deelop attitude when she sees much of the info is from rheumatologists themselves and most of the other stuff is approved by them before being released,

EileenH

 

 

I have another visit tomorrow with my rheumy.  After my visit to the Urgent Care last weekend and requiring the depomedrol injection, rheumy also increased my prednisone back to 12.5mg daily, I'm finally starting to feel better.  I don't have my energy back completely yet.  Whatever all went on in my body with the adrenal gland or whatever knocked me for a loop.  Anyway, what I was getting at, I think my rheumy realises now that I can't taper too fast and I won't go through that again.