Inflammation of Blood Vessels?

No surpise there Bob, we were all fit and energetic before PMR and/or GCA came along and stopped us in our tracks.  It is not a killer, it just destroys your quality of life and you have to find another. That takes time and you have to learn to say NO, that is not possible at present and that is a very hard thing to do.

Gentle exercise is good for you and so is walking everyday for as far as you can ie if you can only manage 10mins at first, then each day it will get longer.  Nordic Pole walking is excellent.  So is Aqua aerobics, Tai Chi  etc but you must always tell the person running the exercise that you have PMR.

I am not surpised that you were better in the afternoon, what time did you take your pred in the morning and what time did you start lifting items or helping to lift.

When you felt exhausted you should have stopped and rested, it is your body saying 'enough is enough'.  

Hope you are being sensible today and just taking it easy and listening to your body.

There is a discussion on excercise somewhere on this forum.  Lots of information there.

As Lodger says - exercise is good if you have PMR, but make sure your heart is ok before you start.  If you overdo it, in any way, you will feel absolutely exhausted.  The idea is 'stop' BEFORE it hurts.

Its a bummer... I had a brand new adult tricycle delivered the day before I suddenly aged to 90 years on waking... unable to move, bruxh my hair or turn my neck along with the worst pain ever. I have still not been able to ride my tricycle which is waiting for me in the shed... nearly 2 years now. However I am beginning to see improvements on top of the pain and inflamation relief from Pred. I have been digging and planting in my vegetable garden this past two months... I do ten feet by three feet at a time and dig and weed slowly. It usually takes about one hour of steady work and then I go in and have a lie down and watch a movie on DVD so I don't jump up and down doing other stuff. My vegetable garden is looking good... almost back to three years ago. and boy have some weeds crept in over that time!

It does change our lives but funnily enough I am seeing things for the better by not rushing, overdoing stuff and taking more time to look and see everything. My muscle tone is in=mproving very slowly and I am noticing far more strength than of late. Just thing slow but sure and rest and enjoy. Don't let people who dont understand get you down and always accept help from anyone. My 'heart' condition has improved no end since ceasing Omneprazol PPI which was causing the most awful aruthmia.

Hello Bob, I also get so breathless when I try to do things, I am waiting on eckocardiogram as I do have heart problems already, finding it difficult to do everything. Cannot help but will look forward to the good advice given on this forum. Good luck. Muriel

Bob

If you follow this link https://patient.info/forums/discuss/browse/polymyalgia-rheumatica-and-gca-1708

There are exercises you can follow easily.

I have a medical journal article that addresses this for long term prognosis, but I can't seem to post it. I will try to email, perhaps.

I don't think you are endangering your heart no so I wouldn't worry about that. Unless of course the autoimmune bit of the PMR has done damage to your heart, which it can do. I have atrial fibrillation, due to damage done to the cells in the heart that give electrical signals to the various parts of the heart telling the muscle fibres to contract and creat the heart beat. The cardiologist thinks that it is damage due to the autoimmune disorder. But that is a different case from the huffing and puffing we find ourselves doing when overdoing it with the old muscles!

The pain almost certainly comes from the muscles themselves as opposed to the blood vessels. The role of the blood vessels is that they transport nutrients and oxygen TO the muscle cells and then transport the waste products AWAY. There are two reasons for muscle pain in this context. If the muscles don't get enough oxygen for the effort they are being asked to make they go into oxygen deficit - a state called ischaemia. That is what causes the pain we call claudication when legs or arms start to ache after doing things (and in GCA the jaw too). If you stop doing the activity then the pain improves until you restart. It is also ischaemia that causes the pain of angina or a heart attack: the blood supply to an area of the heart is slowed or even stopped by narrowing of the blood vessels for some reason, a stenosis as it is called, or a clot blocking the flow altogether. The other reason for muscle pain comes after extended activity (like a long run) and in the recovery period. This is due to the build-up of lactate in the cells - either because the system isn't working efficiently and removing it quickly enough or because the amount being produced is simply enormous (as in marathon running). It hurts at the time - and until the muscle cells have got cleaned out and recovered.

In PMR the muscles don't signal they are being over-used until too late - which is why I keep going on about pacing yourself, knowing your limits and sticking to them, stopping even though you still feel not too bad at the moment. Then they take much longer than normal to recover so you have sore muscles for a much longer time than you would expect. The huffing and puffing is the same as you would expect when doing any strenuous activity - running up the stairs for example or trying to carry heavy weights. You are asking your muscles to do more work, that means they need more oxygen and so you start to breathe more heavily and eventually get out of puff. But the extra oxygen isn't actually getting to where it is needed, or at least, nothing like as fast as it needs to because the blood vessels need to dilate, achieve a much greater diameter to let a faster blood flow through. Because of the inflammation of PMR they have to dilate even more. In the morning it is more difficult but by the time you have the combination of the pred reducing the inflammation, which in itself gives more space for the blood to go through, and you warming up which also leads to vasodilation (wider blood vessels)  it does get easier later in the day. Some people have also commented that a glass of something also makes them feel better - alcohol leads to vasodilation too.

So basically - everything you did yesterday was far more effort for your PMR-muscles than it used to be for your muscles when they were healthy. However - for the vast majority of us our hearts are not affected in the same way. GCA can only affect arteries that have an elastic component in the structure of the walls - and not all of them do. It isn't clear where PMR finishes and GCA begins, but it is becoming fairly clear that in GCA it is probably the blood supply to the arteries themselves that is involved - the tiny arteries that supply the wall of the temporal artery are being looked at to see if there is anything to be found there. Imagine something like the tiny roots on ivy that enable it to cling to the walls of houses. If that is so - then that may be the link between PMR and GCA. In PMR it is the microcirculation, the tiniest capillaries which link the arterial side with oxygenated blood and the venous side with blood with less oxygen and the waste products, which isn't working properly. Whether it is giant cells that are doing the damage isn't known - but something isn't working as it should.

There are people who think that in some cases the PMR finally hits after over-doing something as the final straw - running a long distance, having a very long and strenuous hill walk - but there isn't any real evidence of that. You probably won't do any real long-term damage because the natural effects of over-doing it will bring you to that brick wall that is so familiar to us all and you would HAVE to stop. But you can certainly make yourself uncomfortable enough to take a few weeks to recover fully - and as a pay-back, having to rest so much because of the pain and weakness will also contribute to losing condition so it will be harder to do those things until you have trained again. Because doing things in small steps, gradually increasing what you do, is training, whether it is walking up 2 steps this week, 3 steps next week and so on until you can manage a whole flight or training to run a marathon by starting with 1 mile runs.

Nothing I can add to whats all ready beeen said. 

Bob - this was one of your lessons in reviewing how you must now live - don't overdo it and pace yourself, we have all had or are about to learn our limits with PMR/GCA.

Best of luck.

long term damage from the PMR has also concerned me Bob but I don't have a medical answer. More one from first principles.

My understanding of blood pressure control is that heart rate and artery diameter are changed in response to different demands in the body - the body measures pressure and carbon dioxide. Breathing rate follows carbon dioxide levels. Control of blood volume is exerted through the kidneys. The brain can also effect blood pressure, response to stress for example. Air temperature changes also result in blood vessel changes and thus blood flow, perhaps the effect of inflammation is similar.

Assuming blood pressure control is working well if some blood vessels are constricted due to inflammation, either arteries and capillaries themselves or increased pressure from surrounding tissues, then the same blood pressure as when healthy will result in reduced blood flow.

Thus, heart rate rises faster, out of breath quicker must occur. And if one has retained muscle tone and cardio-vascular fitness a quicker or similar recovery as the level of oxygen debt is overall less before having to stop.

"Logically", though there is seemingly sometimes nothing logical about  PMR, I would become more concerned about long term damage from PMR if my blood pressure was effected or my heart rate went outside its normal bounds.

I have no idea as to whether the above is medically sound, its a reflection of my understanding of pumps and pipes and control systems. It just seems a reasonable working hypothesis in the absence of anything more definitive without having to use my limited knowledge of biochemistry..

I have no real idea of long term damage to tissues and blood vessels from PMR inflammation but just guessing that since its not normal there must be some effects. Some weakening of blood vessels perhaps. Increased morbidity rather than mortality apparently though I'm not sure how that translates into quality of life..

In that balance between PMR stiffness and pain and pred side effects I tend to accept a bit of stiffness in preference to side effects. Hoping that there isn't sufficient residual inflammation to cause long term damage. I reduced to 5mg/day but have been patiently at 6mg/day for the last couple of months. The biggest effect I've noticed is my energy levels increased when the hot (above 30 deg C and humid) gave way to cooler, more sensible, weather. But I still can't do as many of the things, or for as long, as I used to.