Questions about PMR

Trust me if I wrote everything I was thinking or feeling it would DEFINITELY be deleted! It seems his concerns are being ignored or being treated as though it's nothing. In my opinion, he has a very high pain tolerence so to see him unable to do a lot of everyday tasks due to pain is heartbreaking. I can't imagine the pain you all have felt before getting the right medical advice. We are going to take in information on PMR and steroids and ask the Dr tomorrow and hopefully he will listen.

Again, thank you for writing back. It's truly nice to hear that other people have experienced simliar things and how they got they help they needed.

Be assured Julia you really are by no means alone. It took 5 years for me to get to try pred - within 6 hours of 15mg pred I was almost back to normal!

All the best and hope he gets the relief he needs, it took me about a month to get prednisone as I went to physio first thinking I had strained in my groin and back gardening and at the gym - nothing helped until prednisone.

Let’s know how you get on

About the virus cause you mentioned...A month before I got home from a trip to Connecticut (important because of the Lyme disease bearing ticks and a few other tick-bearing diseases that originated in Connecticut in the 50's), I had a strange illness. I was in a camper parked at my son's house. I slept day and night, lost my appetite, was very weak and didn't want to socialize. This went on for a month. I drove home (Idaho) on caffeine (which I don't usually use) and made it by sleeping in a campground every other day. The day after I got home I tried to get out of bed in the morning and came up with debilitating pain in my shoulders. Thought it was from driving long hours. I couldn't get my clothes on, wipe myself on the toilet, or reach for anything. Wasn't diagnosed for 4 more weeks when I went into my GP with my own diagnosis from the internet. I haven't read too much about a virus starting up an autoimmune disease, but, it sounds like that was exactly what happened to  me. They thought it was Lyme's, or Lupus...they were on the right track, but, after my inflammatory markers came back highly elevated, my GP agreed with my self-diagnosis and started me on 20 mg pred. Only half worked. Eventually went up to 40 mg and then have been decreasing ever since. Down to 6 mg after two full years. Had three flares because my ignorant rheumy doesn't care about symptoms, just numbers. How many other people have had strange viral-like symptoms before the severe pain? Just wondering.

"I haven't read too much about a virus starting up an autoimmune disease"

Many autoimmune disorders start after a series of factors has had a stress effect on the immune system. They may include emotional, environmental, chemical, physical stress and infections - but eventually one is the straw that breaks the camel's back and the immune system goes haywire and starts attacking the body in error. So it is not uncommon for someone to find they have developed an autoimmune disorders shortly after a viral - or any other - illness. 

Unfortunately, extremely poor. The GP wouldn't even look at the articles or the information on PMR and steroids that Eileen had recommended above. Said that my husband likely just pulled a muscle (he is in good shape, so far a lot of the medical "professionals" have assumed he hurt himself working out... I don't know any pulled muscle that lasts about 3 months or doesn't show up on an MRI or causes symmetrical pain throughout the entire body, but hey what do I know). He said he wasn't comfortable prescribing steroids due to side effects and told him he needed to continue to wait to see the rheumatologist. He wrote an rx for ibprofen..

So frustrating to say the least. I have gotten into contact with the director of the hospital, who ironically was diagnosed with PMR 10 years ago and was extremely understanding of the pain and the run around that we have been getting. He agreed that the symptoms aligned way more with PMR than a pulled muscle and has contact the rheumatology department for us to see if the Dr or NP can prescribe prednisone while he waits to be seen. 

Oh dear, I am sorry that the GP would not even consider a few days to see if it helped. Hope you get a rheumatologist appt ASAP as the pain is quite unbearable and wears down the mind and body. All the best - I’m up as couldn’t sleep and muscles a bit sore 

What a prat - he wouldn;t be my GP for long!

Julia, Eileen is so right.

We need to consider firing doctors when possible.

I know you just stop going after another is located, but in my mind, I have fired a couple. It puts the patient back in some control. When the area is small, doctors scarce, this is a big problem. Even where I live, waiting lists are formidable.

MariGrace. . Hoping your husband gets the help he needs.

The hospital director has been a huge help!

My husband got into the rhuematologist today so we will hopefully have some answers this afternoon. The director was also able to convince the GP that predisone should at least be tried, so my husband was started on 20 mg of predisone yesterday, which seemed to bring some quick relief.

Hoping this is the end of the bad news and that the diagnosis will bring some mental relief!

Again thank you all for your input and help. It has truly been appreciated!

What splendid news. Hope your husband continues to get relief.  Let's hope it convinces everyone that they have the right diagnosis.