GCA ????? PMR??????

Hello, I am brand new to this group after very many months of severe pain and weight loss and sudden loss of vision in my right eye. The pain I have is in my upper back and although it is concentrated in the right side of my upper back/shoulder area, it is radiating across the upper middle of my back. I also have a quite large soft swelling directly above my right hip and are now struggling to sleep because of awful pain from my hip down to my knee (again on the right side of my body). I quickly lost almost three stone a couple of years ago and can't regain it which is a problem as being a teenage size 6 (UK) is ok at 17 but not at 69.

My upper back pain is not a normal pain but a stinging/burning pain that leaves me waiting desperately for 4 hours to pass to take more paracetamol. This just takes the pain from unbearable to bearable. I also feel extremely cold and then sweating hot within a few seconds of each other and my balance is far from perfect. Is this the type of pain that anyone has experienced????

Eleven months ago I suddenly lost most of the vision in my right eye which is diagnosed (with a question mark) as Central Retinal Vein Occlusion and that is being treated with ongoing scatter laser treatment to stop the bleeding but it wont help my sight.

I have visited my GP several times concerning the upper back pain but they have no suggestions to offer to me.

I do not suffer re-current headaches and can't see any large arteries around my temple area. However, I do have a large artery or vein in the right side of my neck.

Also I have what I would describe as a rash (small bumps) in the centre of my skull where it merges into my neck. This gives bad irritation from time to time.

I honestly don't know where to go next or what my trouble may be but living with the pain is abominable and having no interest from the doctors makes matters worse. I am in fear of the sight in my left eye suddenly going as they can't do anything to restore the sight in my right eye.

If anyone can throw a sparkle of light on any of these symptoms I would be so grateful.

I do have Chronic Obstructive Pulmonary Disease and slight angina. I am also checked annually for abnormal areas in my pancreatic ducts.

If anyone can help please reply to me.

Thank you.

5 Replies

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  • If your visual loss has been ascribed to CRVO then it is something very different from GCA.

    CRVO is found when the veins leaving the retina are blocked and this leads to fluid build-up or oedema in the retina which then becomes damaged affecting sight to a lesser or greater degree. The damage is to the retina, the part of the eye that picks up the light and turns it into signals to send to the brain.

    In GCA it is the artery supplying the optic nerve which is blocked in some way and that reduces the supply of blood and so oxygen to the optic nerve - which is the nerve that transfers the signals from the retina to the brain where it is "interpreted" to make "pictures" of what we are looking at.

    What the doctors see when they look at the back of your eye is very different in the two - in CRVO the retina looks abnormal, in GCA the area where the optic nerve leaves the back of the eye looks abnormal.

    Have you tried/been offered any physiotherapy for the shoulder pain? Has anyone examined your leg to see if you might have something called trochanteric bursitis? Has your doctor ever taken blood to look at the ESR (sedimentation rate) and CRP (a protein) which are both often (but not always) raised in the illness we discuss on this forum, PMR or polymyalgia rheumatica. What was the rapid and massive weight loss put down to? I assume that you underwent a lot of tests then to rule out cancer which should always be one of the first things to consider with massive unexpected weight loss and also when a patient complains of sweats.

    The shoulder and hip pain you describe don't sound particularly suggestive of PMR to be honest since it tends to be bilateral (on both sides). It does sound as if you have back muscle problems which are leading to spasmed muscles and that can affect your balance.

    Having asked all those questions I'm now going to make suggestion of something you could try first without having to talk your doctor into anything although you will have to pay for it. Bowen therapy is a very gentle therapy that works on your muscles and a lot of people on this forum have used it to gain relief from pain similar to what you complain of. It isn't an open-ended therapy, if you haven't got some benefit after 3 sessions it is unlikely it will help so you can stop and pay no more - but many people find a difference after a single session. There is currently a study going on in the north of England to see if it can help patients where the NHS Pain Clinic have run out of ideas, in much the same way that acupuncture is available in some areas on the NHS.

    Since you refer to paracetamol I'm assuming you are in the UK so here are 2 links that will tell you a bit about Bowen therapy and have lists of therapists - have a look and see what you think. You will see that they suggest it is useful for back and shoulder pain - the first practitioner I went to, who also taught it, told me it has very good results in frozen shoulder and, in fact, that was exactly the reason the person who had recommended it to me had sought Bowen therapy himself after the doctors were less than helpful!

    bowen-technique.co.uk/

    thebowentechnique.com/

  • Thank you for your reply and suggestions, especially the Bowen therapy, I will investigate further.

    As for the weight loss, I have had endless CT and MRI scans, abdominal and thorax plus the MRCP scan because of the pancreatic abnormalities. That is being regularly monitored. My GP has put the weight loss down to stress as I have recently nursed my husband through a large lung cancer operation, a stroke, 2 repaired aortic aneurysms and finally a heart attack, This is on top of looking after him for 45 years with severe rheumatoid arthritis and two other abnormal areas showing up in his other lung. Perhaps the GP is right.

    Thank you for the clarification in respect of the CRVO, that does put my mind at rest on that issue.

    Your time and information has been very much appreciated.

  • I think you are allowed to be rather stressed on that menu!

    Do let us know if the Bowen achieves anything - I find it is as uplifting as a massage but far far gentler and I'm sure with all that behind you your back muscles must be seriously tensed and could do with a bit of TLC.

  • Thank you. I keep telling myself things can only get better. If I repeat it enough it might just happen that way.

    Kindest regards.

  • Hello

    My rheumy suggested yesterday, using a TENS machine for some of the pain which is fibro and not poly. May help you?

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