Some of the fibro trigger points coincide with the myofascial pain syndrome trigger points - and MPS is commonly found alongside PMR and sometimes it is difficult to know if it is MPS or PMR that is causing the problem. For me, if the MPS is bad - so is the PMR. But if I get the MPS sorted out - the PMR improves too and I need a lower dose of pred.
Your MIL was spot-on - anyone who sees raised labs and thinks fibro isn't just "old school" he need a refresher course!
Your last paragrah sounds just like I was - my shoulders didn't HURT - but I like to sleep with my arms above my head and I just couldn't do it. It wasn't pain - it was just stiff. I also had tendonitis from the outside of my elbow diagnonly across to the inside of my wrist. It did eventually go away on pred but it took a few months.
We ALL want to be on as low as dose as possible - and that is the next stage. Once the symptoms are stable and as good as they get you will reduce SLOWLY to find the lowest dose that gives you the same result as this starting dose. But don't let him bully you into reducing too fast. No reduction in the taper should be more than 10% of the current dose for comfort and for safety in not missing the dose you are looking for. It may sound slow - but it isn't slow if it works. Trying to rush it inevitably results in a flare and returning to a much higher dose to control it and starting over again.
Sorry. Yes, doc in this case is a rheumatologist. My PC doc referred me after lab work came back high twice for ESR and CRP. Both times my WBC was also elevated and she ran them again as she suspected a viral infection. When the second came back abnormal she referred me to a rheumy.
That's the thing though. He repeatedly kept saying that fibro has no inflammation. He would contradict himself at every appt. With everything prescription NSAID thrown at me, I would get very minimal relief. I would still have to take 1000 mg of Tylenol every 3-4 hours with naproxen or Ibuprofen scattered in there as well just to take care of my kids and make it to work.
I'm not kidding when I say I've been made to feel like a drug seeker. I work in the medical field and anytime I have mentioned the huge decline in the quality of life I felt as if I was patted on the head and ignored.
He has mentioned several times to me that he doesn't like to prescribe opiates. That's great doc. I'm just looking for answers. Not a high.
I am in a very rural area and the closest in network rheumatologist is an hour away. Every visit is a specialist copay. I have wracked up a sizeable bill with CAT scans and lab work. Sometimes I wanted to tell him it would be much cheaper for me to buy opiates on the black market than continue to keep my appts and search for answers. But, I dread confrontation and would just sit through his lectures.
Jean12178, interesting idea, just checked around, found an article in England, does not say that, but persons with PMR do have a change in hormones. Is it a chicken and egg thing? Thanks!
Would your PC doctor take you over? We can provide her with good medical literature to give her a hand.
But this guy is a waste of space if he knows fibro isn't inflammatory but still can't see the wood for the trees. Because I'm me I probably would point out opiates are cheaper on the street than going via him - but opiates don't work in PMR either. Tylenol in quantity is also a risky approach - and it doesn't do more than maybe take the edge off as you know.
I still struggle to understand how people can tell me state-funded medicine is a bad thing. We struggle to get answers at times it is true - but it doesn't cost us a fortune while a doctor messes about as it does for you.
Keep a diary of your response to pred for your rheumy. The speedy response to a moderate dose of pred is felt by many rheumies to be characteristic of PMR although it isn't a 100% accurate test. Unfortunately there isn't one. If only there were!
It didn't help me with the clown I saw but it DID convince a different GP to provide the necessary prescription.
I am sorry that you had to suffer so long. It took me 2 months to get a diagnosis. The pain and stiffness crawled up from my hamstrings, then my back and up to the neck. I was unable to turn my head and felt like in a cocoon. As soon as I moved slightly I was in pain.
I never had shoulder pain. I described my symptoms very detailed and told the MD they should look for a connective tissue disease, but had never heard of PMR before. Pred was my miracle cure.
I struggle to understand the logic behind our healthcare as well.
Now that I have a sort of answer and some relief I am definitely going to be switching things up. The wait time at many places is a long time and the thought of starting all over filled me with dread.
I would think, due to the relief you are feeling, that its possible you have PMR. . Steroids are the one first thing that really helps.. ask to see a rhumi Dr now.... take care x
Mine is staying in my neck...cannot turn head without pain, cannot put ear to shoulder, or bend head back...could be because of cushings syndrome(bufallo hump) in middle of upper back just under neck area....cause of buffalo hump is too much prednisone....fat gathers into hump, causes tightess...also...when on prednisone your BP will rise...and you need to take calcium as prednisone depletes bone...
Didn`t help with the clown I saw on Tuesday either, passed the paper over to him to show how I had reacted to "his regime" he passed it back to me without even looking.at it....how arrogant is that!....oh dear, I`m starting to sound bitter!
The guy is just a first class jerk, unfortunately many doctors are. Do not get upset, if they are just use them, think of it as they just provide a over paid service.
There is in fact growing evidence that c-section babies may have incomplete immune systems owing to the fact that they did not receive their mother's dose of microflora at birth. This can be overcome, and ways of doing this are being developed, but both this factor and the much more comon one of repeated antibiotic treatment may be a key factor in many modern diseases - not the only factor but much more important than we were aware of until just a few years ago.
I am down on 1.5 mg Pred with the DSNS method what works so far pretty good, but will stay there for probably another week. Had a flare up in January. My rheum wants to go down faster.
I take Ca, Mg, Vit K (someone on this forum recommended it), healthy nutrition and exercising to do something for my beginning osteopenia/osteoporosis. I had a scan 3 weeks ago.