Correct diagnosis?

If you have raised inflammation markers - it isn't fibromyalgia, or at least isn't JUST fibro. You can have both fibro and PMR or another inflammatory arthritis at the same time.

There are two things I'd say - one, you are almost certainly trying to do too much to go with PMR. The pred only manages the inflammation, the actual disorder continues in the background and makes your muscles intlerant of acute exercise. 

The second is that you may well also have something called myofascial pain syndrome - it is caused by the same inflammatory substances as PMR but instead of being systemic (all through the body) they are concentrated in the fascia (the transparent skin you will be familiar with from joints of meat or poultry) or as trigger points mostly as pairs on either side of the spine in the shoulders, about rib level and in the low back. They can irritate nerves locally and lead to referred pain in arms, ribs or low back/upper legs, especially as a result of exercise. They coincide with some of the trigger points in fibro but the inflamed fascia can also cause all over pain in the relevant large muscle. I am currently having a series of massage therapies to help it all disperse - a good physiotherapist or sports massage therapist may be able to help. Long periods at higher doses of oral pred do tend to help but it takes time. Some doctors use steroid shots into the trigger points or a technique called needling which comes in two varieties, wet, where there is saline or a local anaesthetic in a hypodermic syringe, or dry where a solid needle similar to an acupuncture needle is used. I've had the wet sort, Anhaga on the forum has had the dry variety - they both appear to work well.

As for your "friends" - they need to learn you cannot "exercise your way out" of a lot of things. And one day it may come and bite them too!

Hi, Joe,

I was just recently diagnosed with PMR as well and now they think it may be something else such as Giant Cell Artritus because the 20mgs prednisone is not doing anything for the pain. I am having a spinal MRI in two weeks, which I hope will tell me more. I know everyone is different with this type of disease, but I can definitely "feel your pain!" Everyone is also telling me to "exercise it away." I am also struggling with depression. Please know you are not alone, I know I feel that way right now. It can drive you nuts not having a definitive diagnosis. Please hang in there and keep trying to find answers. Thats what I'm trying to do!

I have lived with chronic back pain for 13 years, this was prior to my diagnosis of PMR 9 months ago. I'm telling you this because for 13 years I've had people give me advice on how to take care of my back and what I should do to cure my pain. I know they just want to help but everybody thinks they're a doctor even my husband. I jokingly call my husband Dr. Jon even though he knows nothing about PMR or my condition. It does get very annoying. I want to yell at them and roll my eyes but sometimes we just have to bite our tongue. Look at it this way at least they believe you have pain. There are a lot of chronic pain patients out there whose friends and family believe they're making a mountain out of a molehill. Or they believe they're making up the pain for attention or any number of terrible things and these pain patients are not getting the help and support that they need from their family because of this

Hi joe95312, I agree with my colleagues, you can not exercise without

prednisone then you have to have enough. I need 30 mg, I was in a wheelchair

on 20 mg. Please do not try to too much, feel your body, tired rest, 5-10 rest

feel like doing a little more another 5-10. I started that way couple months

now out walking good every day. Hang in if PMR, there are a lot of us working

Our way down the same road!

No, we cannot exercise our way out of it.  I found this out the hard way by taking 1/2 hour of low impact aerobics because I was feeling better.  I am still hurting after 3 days --- thighs, back and arms. 

Hi, Joe:  I needed 25 mg for the pain to be substantially reduced.  This is somewhat unusual, but is necessary for some of us.  Within a couple of months, I was down to 15 mg. and had almost complete relief of pain. However, usually the fatigue persists at some level even when the prednisone is treating the pain pretty well.

Your friends are morons.  (No offense intended!) I am sure they are great people in other ways and that they mean well and are just extrapolating from thier experience with other problems. Howeever, sadly, you can't whip PMR into shape by kicking it around.

One of the hardest things about PMR is having the patience to treat it in a rational way, rather than getting fed up and trying to rush things.  Exercising too much or reducing the dose of prednisone too fast will always backfire.  Yes, you want to test the limit of these things but be prepared to back off whenever it makes you worse.

Most of us have gone through a lot of depression and/or frustration dealing with PMR.   That's a perfectly reasonable response when you find yourself unable to scamper up and down stairs without a thought, run around doing errands, cycle or climb hills, or whatever you are used to doing.  

However, if you have PMR, there is good news for most of us.  Prenisone should be control symptoms well enough to lead a normal life. It is not true of everyone, but there is reason for optimism.  

What you will need are (1) a lot of information (trust Eileen!!), (2) an informed and understanding doctor, and (3) friends who learn to shut up when they don't know what they are talking about!!

Courage and patience!  All the best, Pat

 

Hi Joe. I started on 15mg/day of prednisolone and it barely touched the stiffness I was experiencing! It wasn't until I got to 30mg/day that the symptoms started to really come under control and after about 3-4 weeks at that level, I was pretty much symptom free! I reduced to 25mg/day three weeks ago and stayed the same and reduced again to 22.5mg/day a week ago and so far have minimal symptoms! I split the dose equally, up until this last week, where I now have 12.5mg at 10:30 and 10mg at 22:30. These seem to be the optimimum times for me after much experimentation! Your size and the amount of steroid that your body will actually pick up and use will also be a factor! I am big and have a slow metabolism! I don't think my body metabolises the medication well either! Hope that helps! Good luck!

Thanks to everyone for very helpful comments!

Hi Joe,

I have had Fibromyalgia for 20 years and diagnosed PMR for 2 years. My Fibro pain doesn't usually subside if I rest for 10 mins. It usually does the opposite and the pain continues to build for the rest of the day/night. Stretches and hot baths immediately can sometimes save me from ongoing pain, but not always.

?When I did get PMR, the steroids relieved the pain of movement greatly within 24 hours. My diagnosis was based purely on this improvement.

?I do have another problem too which causes similar sounding problems to yours, so I do have to go to a good Osteopath or Chiropractor to put me back together on a regular basis. I suspect your problems need some more medical research so  you can get more relief.

?Depression comes and goes, and this site is a great help, as we have more understanding of what you are going through.

?Friends and family do not always understand or believe what they cannot see or feel themselves. Eventually you learn who you can talk to about your health and who you can't talk to. For my own sanity I had to get canny and give other reasons for no longer being able to keep up.

?Take time to heal and hang in there.

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