So here's my problem, I've been diagnosed with polimyalgia but my pain started 8yrs ago and after being bed riden for 3mths. I am 41yrs old but my pain is throughout my entire ribcageand left shoulder. I have read that this affects neck shoulders and hips mostly. Could i have been misdiagnosed? And and intercostal block has been suggested to me any thoughts?
Hi Michelle, PMR can affect most parts of the body, mine started mainly in my left arm. I also have rib pain but I also have fibromyalgia. Have you been checked for fibromyalgia? Have you started prednisolone and if so to what effect?
Have been checked for fibromyalgia (neg). Done many rounds of prednisone over the years with success until its outta my systemthen all comes right back. Thats why intercostal block was suggested. Currently I've been off and on with dexamethasone which works great for flare ups but not used long term. But affects seems to last longer than prednisone.
I'm surprised you have managed to get a doctor to give you a label of PMR as you are very very young! Most doctors usually try to tell us unless you are 50 it can't be - even though the youngest person cited in the literature is a 24 year old male.
What surprises me more is the diagnosis if it is only your ribcage and one shoulder that are affected since classically PMR is bilateral pain and stiffness but everyone is a bit different and some people have only shoulder problems, others hip problems and yet others both.
Are you saying that you are only being given short term tapers of pred? That is totally the wrong way to approach management of PMR. It is a chronic disease that requires long term management - as long as the underlying autoimmune cause of the symptoms is active you will need on-going pred as each morning the body produces a new supply of the cytokines that cause the inflammation and hence the pain and stiffness symptoms. Normally you use a moderate dose of pred to clear up the existing inflammation and then you reduce slowly to find the lowest dose that achieves the same management of the symptoms as the original by dealing with the new level of inflammation each day. Often, if the reduction is done carefully enough, a dose as low as 5mg or even less is found to be adequate to do this and this is a low dose with relatively few side effects so can be used over a long period.
Because an intercostal block is fairly localised in its effect it isn't something most patients with PMR will have experienced so I doubt you will get much response about that here on a PMR/GCA forum. But from what I read I'd think it might be worth trying.
Have they considered myofascial pain syndrome, for example? That is caused by the same cytokines as cause the inflammation in PMR but instead of being systemic (all through the body) they are concentrated in so-called trigger points - not the same as fibromyalgia by the way - which can often be felt as hard knots of muscle fibres in pairs on either side of the spine in shoulders, about rib level and where the baby's dimples are in the low back. You can have all or just one but they sometimes can pinch or irritate nearby nerves because the muscle fibres spasm and the entire muscle may become hard. This results in referred pain - into the arm and neck when the shoulder is affected, into the ribs from the mid back and into the hips and thighs as well as the back from the lowest area. It can be extreme - I ended up in hospital for treatment because I couldn't move at all without severe pain. They wanted to use an infusion therapy with high dose steroids, muscle relaxants and pain relief and the 2 lots I had worked very well and fast but I then had a severe reaction to one of the drugs and it had to be stopped before the course was finished. After that I attended the pain clinic where they used other much slower techniques including steroid injections into the trigger point area, manual mobilisation and needling.
It all worked well but, to the surprise of the pain clinic doctor, the trigger points kept reforming requiring ongoing therapy every several months - until I had an upper wisdom tooth removed. It had been affecting my bite, that put strain on to my back muscles and eventually they just went into meltdown and the pain was back. It is all a very critical balancing act that our back muscles carry out and interfering with one puts strain on the others. It can be a bite problem or one leg being shorter than the other - something like that. For a long time the body manages to compensate until something happens to upset it all. It can be just catching your head on the car door, tripping or falling - PMR was also part of the equation for me and it improved considerably at higher doses of pred but got worse again with lower doses.
Has anything of that sort been investigated?
PS - where do you live? Country/region will do, which country you live in makes a big difference to what suggestions are going to likely to be of any use.
I do also have pain and numbness in my leg leg and arm. I also suffer from what they believe is hemiplegic migraines which will cause those symptoms as well. They are puzzled because my worst pain is throughout ribcage but have bad joint pain down left side, shoulder, elbow, wrist and fingers also left hip, knee foot and toes. My family doctor passed away and now im having difficulty with new ones. No one will prescribe pain meds so I've been managing without but so far only one trip to emergency. The clinic doctor i saw friday wS one who suggested block because my pain is so bad. Usually spend about 6mths outta the year on prednisone but new doctor I had wouldn't prescribe it and said that was my problem so I got another doctor! This one been ok have and upcoming appt for migraines and rhuemotogist. I live in Ontario Canada. Im just trying to get some feedback for treatment cause this has severely affected the last 8yrs of my life.
I'm sure it has.
I think that the fact that it is all on one side of your body would usually make a doctor doubt PMR. The fact it responds to some extent to pred may just be a confuser. I do hope your referrals to specialists bring some answers. Do you have any idea how long it may be? To have the block before seeing a specialist might confuse things even more.
I wonder if the therapy that Anhaga on this forum has been using would be of any help - it is widespread in Canada although whether it is available in your area is another question. She is in NS and I'm sure will reply at come point.
As per Eileen's suggestion - I live in Nova Scotia and have been getting an alternative therapy. I'll send you a private message.
The pain and numbness on my left side is a side effect of my hemiplegic migraines. Its the pain throughout ribcage that concerns them. See specialist in April but thats who i was told to discuss block with. Thanks for all your info it has really helped.