More questions!!

And is there any particular reason why it should be both sides of the body?

I am very new to this and can only assume that Fybomyalgia the same thing that you are all talking about only my Dr. is talking in old money......

I had a fall and hurt my neck and everything went down hill from then on. I have suffered in the past with several spine related injuries and thay have all taken longer than normal. But this time it's been a knockout punch and it's taken 12 months for the Dr's to come up with any kind of answer and it is this.

My pain has been debilitating but it has been centered from my neck but they don't understand the pain in my hands,feet, ankles, halfway up my shins and foreamrs,between my legs and at times the whole of my head. The pain in my fingers and toes is like someone is standing on them and won't get off. it has been awkward given that I have had knee and shoulder issue's during the same time which I have had successful surgery on both. my shoulder operation was an amazing success that had the surgeon baffelled at 9 weeks I had regained full use which he didn't expect untill at least 20 weeks, So I can recover from issue's my body has just not the one that has thrown the sucker punch.

The other thing it has done is knock my sight, I haven't had glasses since I was 16 and that was only for reading very small print but this has altered the sight in my right eye and all of the Dr's have said that my neck injury has nothing to do with my sight issue.

Anyway back to my original question is Fybromyalgia the same thing as PMR.

https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316

you will find further links to the northeast of England support group website which has loads of info that is permanently there. If you follow the second link it will take you to the forum associated with that support group - it is open to everyone and has more members than here. The format is different, possibly confusing until you get the hang of it, and we have a locked thread with my older posts that were felt to be very useful, some of them combine answers from MrsO and others too and there is also a FAQ section for beginners. There are seperate sections for various topics, like "medication and treatment" or "diet and exercise" which we sort of stick to but each thread tends to run like a normal conversation with changes of direction in the middle! What is best is that it isn't just a few of us with the accumulated wisdom of years and you will get founded responses from several others as well which gives a better chance of someone having experienced what you are asking about. We even have a section for jokes, one for photos of the garden, grandchildren and pets and a general "Chatterbox" where ANYTHING goes!

So mrsmop - I do have a corner (not a naughty corner I hope ;-) ) but you'll have to come to the other coffee shop to find it!

Anyway, this isn't a scientific explanation but simply an illustration of why you feel rubbish with an autoimmune disorder.

When you have flu or a cold your immune system gets the message when the white cells in your blood come across the virus in your blood. Viruses can only increase when they get inside your cells, they can't do it on their own, so they get inside your tissues - and multiply. So the white cells increase in number and start to attack the bits of virus they find but that takes some time and the presence of the virus means the way your body is working is disturbed and you feel ill. If the virus changes it's overcoat quickly enough then the body's own immune system doesn't "see" it quickly enough to catch it and it can get worse and worse - as ebola is doing in Africa. Eventually though the body gets the upper hand, the infection fades and you feel better.

In an autoimmune disease something upsets the body's immune system and it fails to recognise that your own tissues are "Self". It thinks the cells are foreign bodies, like viruses or bacteria, and starts to attack them. More white cells rush to the scene - and instead of finding a real foreign body they find a playground scrap going on and dive in too. And make the damage worse. There are two sorts: organ-specific and non-organ specific. An example of the first is Type 1 diabetes - the cells that make insulin in the pancreas are damaged, there isn't enough insulin and blood sugar levels go haywire. Another is Graves disease which affects the thyroid. Others are directed at connective tissue, skin, joints.

Immune system cells called T lymphocytes (T cells) use special receptors on their surfaces to identify foreign microbes, such as bacteria and viruses. Usually, T cells that react to the tissues of the body are destroyed by the thymus, an organ of the immune system located behind the breastbone. The 'self-attacking' T cells that escape destruction may be activated by a trigger. The exact triggers are unknown, viral infections and hormones are among the suspects but there is no real consensus on this and in some cases viral infection has been rules out. The rogue T cells then instruct B lymphocytes (B cells) to make antibodies against the particular tissue, organ or system. Such antibodies are called 'autoantibodies' and can sometimes be identified in the blood by tests - not finding them doesn't mean there aren't any, it just means they haven't been identified yet. There are about 80 different autoimmune disorders, some are quite distinct like diabetes or RA and others are sort of mixed up and show signs of two or three different illnesses. Most of them are named by the doctor who notices a set of symptoms occurs in a few of his patients - but what is often forgotten is that patients with an autoimmune disorder can have bits of several different descriptions from the textbooks. Many were identified years ago before there were the diagnostic and scientific tests we have now and some are being renamed, realised that a and c are actually the same disease or that b comes in a wide range of versions. 

In giant cell arteritis something happens to make the body create giant cells which can grow so large and numerous that they actually narrow the space in the middle of the artery, restricting blood flow. In a large artery that is perhaps less significant but if these cells get to the arteries in the head they are much smaller and can even stop the blood flow. Typically that happens in the arteries supplying the optic nerve, it is starved of oxygen, bits die off and if too much dies the optic nerve stops transmitting signals to the brain and you go blind. In some ways it is a stroke or heart attack but in the optic nerve. 

When GCA affects other larger arteries the blood flow is restricted but not entirely stopped, so at rest we aren't too bad but when we try to exercise there isn't enough blood getting through for the increased amount of oxygen required and we get cramp-like pain which comes on when you do things, fades when you stop doing it but comes back again when you resume what you are doing. The pred you are given shrinks these inlammatory signs caused by the enlarged cells and reduces the risk to your vision.

For a long time it has been thought that PMR and GCA are similar but different, similar because GCA patients often have PMR symptoms and different because they hadn't found the giant cells. GCA has been known as temporal arteritis for many years - because that was where you could SEE swelling and could remove a bit of it and identify the giant cells that give it its name. In recent years improving imaging techniques have meant that it has become obvious that other arteries suffer in the same way. If the brachial artery which supplies the arms, is affected then the biceps develop signs of claudication in response to repeated or sustained actions - like cleaning windows or holding a phone to your ear. But you can't easily take a chunk of that artery out and look at it so that remained unknown. Because of these improved diagnostic tests, using special CT scans and ultrasound, is is now known there are far more connections between PMR and GCA than was originally thought. GCA has been classified as a vasculitis for a long time: vasculitis is inflammation of blood vessels. More recently it has been suggested and is fairly much accepted now that PMR is also due to vasculitis, but not in the larger arteries. In PMR it is the microcirculation, the very small arteries, that are affected in a similar way, restricting the flow of blood into the muscles they are supplying with oxygen and then picking up and removing the lactate, the stuff muscles produce when they work. Lactate in muscles is what makes your legs sore after running, your arms ache after digging the garden, especially when you are not used to it: in training. Whatever it is happens in the blood vessels makes your muscles unable to tolerate acute exercise - it takes much much longer and in very tiny steps to persuade your muscles it isn't too bad climbing those stairs. When my PMR first started at the beginning of the ski season I could only manage half a short run before my legs ached - but I persisted, skiing a short run, resting on the lift, skiing again, only doing a few runs and then resting for a few days before repeating it, increasing the number of runs each week or so and by the end of the season I could ski several times as much as at the beginning.

As long as that autoimmune disorder is active you will have the symptoms, either of GCA or of PMR. Like all autoimmune disorders they can range from mild to severe and PMR can sometimes be managed by lifestyle changes and even some ordinary pain killers - never did for me but for 5 years I managed - by always using the car to go any distance for example, if I couldn't drive and park nearby I couldn't go. I changed my gym to one with a pool - I could do aqua aerobics if I modified it a bit but I couldn't do a step class. By doing an aqua class every morning I managed to keep fairly mobile but there were things in my Pilates class I could no longer do and I could barely manage the movement classes the council organised for over 50s. My doctor just kept saying "your bloods are normal..." But what was happening ot me wasn't normal for someone in their early 50s. Then it hit like a 10 ton truck - and I was stopped driving for another reason. Then I realised how restricted my life had become. Now I couldn't get anywhere - public transport was a nightmare.

Eventually I worked out what it was - including via this site - and told the GP who referred me. The rheumy wasn't interested in my story, normal bloods, too young, blah blah, but he did give me pred - and it was a miracle, everything worked again within hours. He wasn't interested in continuing the pred - but another GP listened and wrote the prescription.

Pred reduces inflammation, by altering how and which proteins are made by the cells. Reduce the inflammation and the blood can flow again. Possibly not perfectly but far better than it was. And most of us have realised that staying at 15mg would be the physical answer if pred didn't have side effects! Recently it has been found that there are a lot of neutrophils, a specific white blood cell, present in GCA - and they reduce as the inflammation reduces but are still present in small numbers even after 6 months on doses of pred above 20mg. The question is: is this the reason people with GCA have flares even though the blood tests and symptoms appear OK? Are these cells also present in PMR patients - is there more involvement of the bigger arteries than was thought in PMR? Are the neutrophils showing cause or effect? Either way, they may form a better way of monitoring the inflammation because they are more specific. It does suggest a mechanism for the effect of pred in both GCA and PMR - one of the effects pred has is on neutrophils. And that opens up possibilities for developing treatments - only when you know the cause can you find a cure, or even an effective long term treatment or prevention using a vaccine for example.  

So is it muscles or blood vessels? Probably the plumbing to and from the muscles but possibly also something in the muscle too. Research is starting to look at the microcirculation - funding has been made available for that. And the side-effects of pred are being looked at, how can it be used most effectively. Personally I think it is more important to optimise the way we use pred, how to reduce better, rather than messing about with other fancier and more expensive drugs that the GPs won't use as pred is cheap as chips and they know it works. It would work better if they learnt how to use it properly! When they know how PMR and GCA are caused, then they can look for proper ways of dealing with it.

And why is it bilateral? No one knows, it just tends to be typical. It does differentiate it from an injured shoulder or hip I suppose. RA joint pain also tends to be bilateral apparently - but can be just one-sided. I think it probably just reflects the "all over the body" multi-organ aspect of autoimmune disease. 

And because the underlying autoimmune disorder is still ticking over in the background with pred being used to control the SYMPTOMS and not the illness itself we still feel a bit ill, some people more ill than others. Pred isn't innocent either - it can make you feel a bit dozy. The vasculitis can cause brain fog because the brain isn't being supplied with enough oxygen maybe, but pred does it too. Pred works by attaching to receptors on the cells - only then can it do its job. At higher doses all the receptors in the hypothalamus, part of the brain, are occupied with pred molecules and that can make you feel quite high and energised. Then the left over pred starts to circulate - and makes you "drunk", confused and it affects memory. This does improve as the pred dose falls and you get to the amount that controls the symptoms without enough floating around to cause other effects.

I hope this wasn't to confused - this tiny post box is a pain, you used to be able to see far more lines at one go! If I didn't answer your question in full - ask and I'll deal with the bits I didn't.

As i said, this isn't accurate science, that is far too complicated to deal with here. But it illustrates it fairly well - I think ;-)