I won't witter on too much, to cut a long story short I've had all kinds of blood tests done to rule out arthritis, lupus, ect and had an MRI brain scan done to rule out lesioms ect. I had my 2nd appointment with the rheumatologist today and he's just decided it's 'chronic pain syndrome'.
From what I've read online it seems that the term chronic pain syndrome isn't a term actually even used in the UK, and in the countries it IS used in it seems to be an umbrella term that CPRS/fibro/ect all come under. So I'm no further forward really in knowing what exactly is wrong?
Any words of wisdom from people who know about this would be greatly appreciated
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Kazzy12
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You had the ruling out scans. They found nothing wrong. It is now time to pay to visit to a sports massage therapist to find out if you have micro cramps and muscle spasms which are causing the problem. A McTimony chiropractor could also be useful to determine if you have miss alignment problems.
The two specialists I have mentioned may not cure the problems you have, but they could reduce them. This is for you to investigate.
Chiropractor and sports therapy were the first things I tried. When the major flare first started 6 months ago I thought I'd just overdone it at work, then it turned into 6 months and still ongoing. My pain is widespread thoughout the body and depending on where the pain is on any given week I can't walk, stir a cuppa, or even cut my own food up, so there's definitely something wrong, it's just not lupus/RA/MS, which we already knew before the GP referred me to rheumatology.
Thanks for the reply. Can I suggest that you try an Alexander Teacher. There is the possibility that you had a sneaky virus which knocked your movement control sideways. The muscles are contracting but not uncontracting correctly leading to pain.
All one can do is experiment and see if it helps even if just a little bit.
Worth trying to see if you can persuade your GP to give you a course of erythromycin. This is both an antibiotic and one of the best anti-inflammatories around. Goggle "erythromycin anti-inflammatory". I have used erythromycin for pain conditions.
Sorry I've just seen this, I didn't get a notification when you replied. Never heard of an Alexander Teacher, I'll look it up. I'll also have a look at what you said about the possibility of movement control being knocked off a bit - that could actually explain things. Thanks for that
They're different. Chronic pain syndrome is basically all the things that happen to someone who has chronic pain, such as: fear of exercise (in case you hurt yourself more), catastrophising, slowly getting more unfit and having more pain, etc.
There are several different types of pain, one is acute, which is when your toe gets stubbed. This is protective in that it alerts you to something wrong, and when it heals the pain stops. Chronic pain is when that pain carries on after the injury, which might actually have been really minor, or could have been major, has healed and the pain should have stopped.
Pain is actually all felt in the brain, not in your body. The signals go from the area of the body where there has been damage to the brain, then the brain decides what to do with it. The brain can decide to pass the information on to the motor cortex which is where you withdraw that stubbed toe, and it can also send a signal back down the spinal cord to stop the pain signal coming up again. But sometimes it keeps telling other parts of the brain that there is still a pain signal coming up when there isn't one, or it can turn the volume up to 11, making the pain seem higher than it really is.
The good news is that we know a whole lot more about chronic pain now than we have in the past and can deal with it.
You might find The Pain Toolkit helpful. Did they say they would refer you to a pain clinic? That could be helpful too.
Chronic pain is indeed a term used in the UK, and there are a couple of researchers whose work you might be interested in looking at. One is Irene Tracey.
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