Getting worse.

[Calceolaria]

In addition to my chronic pain, neck and low back, I have developed a semi-frozen shoulder and an irritated sacro-iliac joint. These were diagnosed by Physio and my gp appt is not for a few weeks yet. The exercises are not helping. In fact, I am in stacks of pain ! Anyone have any advice for me as to what approach I should be taking? I just feel I can't win and whatever I do, my physical problems are becoming more and more complex.

[Hidden]

Sports physio can help. They use massage, bowen, gentle manipulation and any other therapy they think suitable. They understand pain and its roots. My frozen shoulder was fixed after a half hour session.

Your sij pain will be compensation pain from your back, neck and shoulder.

The body is designed to cause pain when there is an injury. If we don't address it, then it causes other pains some as compensation pain others via trigger points. Eventually the body becomes so locked up you can't do anything.

For those of us with chronic pain, our pain messages are mixed up and this can affect the speed of the locking up process. It's important to learn to read your pain, know which are the norm and which to pay attention to.

Many trigger points can be treatedcyourself or by another person. It just involves finger pressure on the points. The sports physio can show you. It is extremely sore but if you can tolerate it for a few seconds you will feel the relief when the pressure is released. And these can be done as often as you like can tolerate. In time you will bve able to cope with greater pressure and for longer.

If you can imagine a huge glass of water with blobs of coloured ink suspended. Your injury is the ink you drop into the glass. You see it swirling around and when it hits an ink blob, the blob explodes and swirls around, hitting another and another. Thats how triggers work. You get an initial injury the body decides you are not dealing with it, or its not getting better, so it sets off a trigger, if that fails to get treatment, then it sets of another. Then it starts locking limbs, hence the frozen shoulder.

If you think a sports physio would be too much, go to an aromatherapist. They do very gentle massage with more emphasis on relaxation, with oils and music. They will not massage the very sore bits but everything around which causes relaxation over the whole body. Once your body associates relaxation by touch, you can massage your arm, or legs yourself, to get the rest of your body to relax.

Also a remedial pilates class would help. They do very gentle pilates exercises to keep the body loose. They started for people with strokes but anyone can join them. The instrutor just needs to be aware of what bits hurt and they will change the exercises to suit you.

It's unfortunate gps are not trained in pain management. They would save everyone and themselves a lot of time and heart ache if they sent you to an alternative therapist instead of dishing out drugs and sending you to consultants who can't help.

[Calceolaria]

Thanks Zanna, always helpful and infotmative advice.

[earthwitch]

Rheumatologist. This sounds a whole lot like spondyloarthritis needs to be ruled out. If you look up the signs of "inflammatory back pain" from the nass.co.uk website for a start. If you tick all the boxes for that, then insist that your GP refers you to a rheumatologist. The NHS is really bad for diagnosing spondyloarthritis, because of their protocols for treating back pain. Spondy is an inflammatory arthritis (like Rheumatoid arthritis) but one that affects the spine - particularly the sacroiliac area, and then neck, and other areas of the spine. The NHS tends to treat back pain very conservatively on the basis that most back pain will come right on its own. The problem with that approach is that it completely misses things like spondyloarthritis (including ankylosing spondylitis), and so ankylosing spondylitis typically isn't diagnosed until people have had it for 8-10 years. I'm not surprised your physical problems are becoming more complex. AS is a systemic disorder - as well as affecting your spine, you can get enthesitis just about anywhere where tendons join onto bone (eg shoulder, ankle), and a huge proportion of folk with AS also have inflammatory gut diseases as well (crohns or colitis), plus the fatigue that goes with uncontrolled inflammation and pain.

Of course it may not be AS, but that does need to be ruled out, so first stop should be rheumatologist, and preferably an "early inflammatory back pain clinic" or an "ankylosing spondylitis" clinic rather than a rheumatoid arthritis clinic.

[Calceolaria]

Thanks Earthwitch. I have wondered about an inflammatory involvement and the biomechanical Physio on Pain Programme did suggest I get some blood tests. These were normal but I remembered after, that she had suggested one beginning with H. I now know this was the H27 genetic marker and I will discuss all this with my gp next week. I meet three of the five symptoms for AS, as I improve with rest, but what with one thing and can other, I had intended asking to see a rheumatologist. Even if my problems are entirely mechanical, there are rather a lot of them and significantly, I have been experiencing paired joint pain. I don't want to have AS or RA but I already have pain, stiffness and excessive vertebral deterioration of varying kinds including foraminal stenosis and pain is worsening with the shoulder and iliac/facet joint inflammation.

[Hidden]

Hello, Calceolaria! Thank god you wrote this post. I too have a shoulder that is semi frozen and my physio exercises, yes they have helped, but no not completely. So I will try Zannas advice to you. A few nights ago my shoulder was "killing" me in the middle of the night, I couldn't help but massage the pain and it did help. My back is out as well, the pain is ridiculously intense at times (and getting worse) but that is to be expected after the way I now hold myself Don't discount Earthwitch' advice to get to the bottom of it (I am awaiting advice on tests for Fredericks Ataxia - cant be fixed but at least I will have a name for it and can get stuck into the management of it Wish you peaceful pain free/managed days ahead.

[mitziblue]

Honey try to get referred to a pain specialist. It makes a world of difference. Praying you find the help you need!!!