I was trying to explain to someone what PMR was and part-way into my explanation, they interrupted and asked if I have Cushings or Addisons disease. I've looked them up and see how they're different but also find it somewhat confusing, comparing them to PMR. (brain fog?) The information I read was from a site about adrenal diseases but PMR shows up on arthritis and auto immune sites. Can someone clear things up for me?
I find if I just say PMR is experiencing inflammation/stiffness, people just assume I can stretch, add a warm or cold pack and I'm fine. It doesn't take into account the fatigue (which is much better now) and muscle weakness that actually get in my way. The prednisone takes care of the stiffness so its not really a problem at the moment. I am finding I need to read more about pacing because anything above typical chores leaves me sore the next few days. It's hard as I am working full time in a high energy job and am a single mother of a teenager, which can be stressful at times as well I am also more prone to injury and slower to heal. How do folks explain PMR to others when they need to?
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TooSore
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I just say its autoimmune illness that is treatable and hopefully one day will go into remission but could take some years .
My muscles are intolerant of a lot of exercise and I get very tired ,not the usual sort of tiredness.But the sort that totally wipes you out and when I feel like this I need to sleep and rest.
That for the time being I need to put myself first to aid my recovery and I am unable to do as much as I did before PMR
I find this helps stop a lot more questions being asked as well.
I would just add that it's an autoimmune inflammatory disease that affects the whole system, causing fever and fatigue as well as the local symptoms of stiffness and pain. Steroids can control those symptoms, but they are not a cure. Then on top of that, Cushing syndrome can be brought on by the steroids.
This is why PMR&GCAuk North East Support produced a DVD 'You are Not Alone' to explain to patients, family, friends et al, exactly what it is all about.
Medics (Rheumatologists, Opthamologists, Physio et al.
I looked for the video but am not sure how to order it from the U.S. Also, somewhere I found a link to an order form for many different things including a pansy. I can't seem to find my way back. I'd like to order Kate Gilbert's second book but can't find it on Amazon. And thought maybe there'd be a way to order the video too. Hopefully with PayPal or something that would help with the money exchange...
Go to their shop which is under Support Us on the blue headline. There is a way to purchase from outside the UK - contact them by email if it isn't obvious. It may be PayPal, can't remember...
I give up! I don't understand the directions and can't email then because in the contact form they ask for a phone number and mine is coming up invalid. I'm guessing I need an international Code/number and I just don't know it.
Thank you for the ideas. For general acquaintances I generally just say very little but for friends, I find they typically want to help. The muscle intolerance is usually met with comments such as " if you're not using them, of course they're getting weaker" and "you have to push yourself a bit, if you're going to make headway". (I'm 53) When they find out I'm taking prednisone they're horrified. In addition to worrying about side effects ( one mentioned Cushing) I've had one say that my adrenal glands won't work if I take it! I'll take a look at the video and pass it along. I found the spoon theory I found here very helpful with my teen.
Can you clear up the differences between the diseases? And is it cortisol that our bodies don't produce or adrenaline? I'd like to understand the cause, not just the symptoms. I appreciate all of the help. I read information, think I understand. But when I go back to re read I can't find it!
In terms of the disease itself, cortisol and adrenaline are nothing to do with it.
Something upsets your immune system and it starts to attack your body by mistake, as if it were a foreign body, a virus or bacterium for example. Depending on what tissues are being damaged you develop different so-called autoimmune disorders - rheumatoid or other sorts of arthritis, MS, Type 1 diabetes, a whole host of autoimmune diseases.
GCA is certainly a vasculitis, PMR is very probably one. That means that blood vessels become inflamed as the immune system attacks and damages the cells, in GCA it is larger arteries, in PMR probably smaller and very small arteries.
This is fairly easy to understand about autoimmune disease:
You will see that there are many different sorts of autoimmune disease and of differing severities. Some can be fatal, others make you very ill. Some progress, others often go into remission at some point. Believe it or not - GCA and PMR are amongst the less dangerous or unpleasant ones!
The adrenal connection is due to the fact we take pred to manage the inflammation. While there is an excess of artificial corticosteroid present in the body the body knows it doesn't need to produce any - like your central heating boiler doesn't produce more heat when the room is warm enough to not trigger the thermostat. So the adrenal glands don't get messages to make more cortisol. The side effects that give us cushingoid problems are because of the excess of steroid - in Cushing's syndrome there is a gland or a tumour that isn't working properly and that leads to making TOO MUCH cortisol. We know where our excess of steroid comes from - we are taking it! In Addisons some disease process means we don't make ENOUGH and that is also dangerous. Sometimes our adrenal glands don't start to produce cortisol as we reduce the pred or they are unable to respond in cases of stress (trauma, surgery, illness etc) - but it isn't because they are involved in PMR.
That isn't the whole story of course, it's an extract - but I'd have to write for hours - and I'm on my holidays!!!!!
My doctor said that the autoimmune response is like the body attacks its own muscles and other parts of the body, believing that they don't belong, rather like it would a virus, causing excruciating pain, weakness, fatigue and a whole host of other symptoms. The more exercise you do the worse the symptoms become
Thank you for getting back to me while on your vacation! I understand the concept of auto immune and your analogy of central heating as well as that my body is now not producing cortisol because of the drugs I'm taking. I had read somewhere (and now can't find) something on the substance that the body produces in the early morning that causes inflammation. We take the prednisone when we get up because our bodies don't produce whatever is supposed to keep it in check. If I could remember the names of the chemicals/hormones it would help!
I am going for blood work. I suspect I need to tweak my dosage based on aches and mood/emotions. I'll find out the doctors opinion in a day or two. I find when I'm not feeling well I start poking around the internet looking for information.
I was hoping the aches were caused by some home repair that I "should" be able to do but cause me grief afterwards and the mood was influenced by sending a child off to college and going back to school myself to teach. The littles ones can wear a person out!
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I am also more prone to injury and slower to heal. How do folks explain PMR to others when they need to?
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