Just a quick heads-up on a piece I spotted on the BBC News / Health website today (18 December) entitled: 'Over active Immune System may trigger CFS / ME (Myalgic Encephalomyelitis) - like symptoms'.
Although not specifically about PMR / GCA, it does talk about the possible relationship between an over-active immune system and CFS or similar. According to a study by King's College, London, many CFS / ME sufferers say their condition began with a challenge to their immune system like an infection.
Since the DF (what we call Deathly Fatigue here - an equivalent to CFS?) is a common experience for Us Lot, and some of us went down with PMR after an infection or virus (me included), I thought you might be interested. It resonated with me at least...
My daughter has had ME for over 12 years now, she thinks that a very nasty virus triggered it off. I have been saying for a long time that I think that it's something to do with the immune system.
ME, like PMR and GCA are incredibly hard to diagnose. If I remember they called it "yuppy flu" once.
Not enough money or time has been put into helping people with this disease. Perhaps research is taking a bit more notice now. To date no medication is involved.
I'm no expert Primarose, but I guess there can be a genetic pre-disposition as with many other health conditions. I remember the derogatory term Yuppie Flu from an era when there was much public (and medical?) ignorance about ME - and many people couldn't get their heads around the fact that young people can get these chronic illnesses (CFS / ME) too. Sadly, it still exists when some people / medics put PMR and CFS down to 'all in the mind'. I agree - the whole issue of PMR / CFS / ME and related AI illnesses needs more money and awareness-raising effort to narrow down the causes. But it seems that some of the latest research is making progress. Fingers crossed...
Hi. Interesting. I have recently been diagnosed with a GCA relapse only weeks after having my adrenals checked out. So when I asked how this relapse could be happening when my adrenals were working ok the reply was 'they are working too much'. Was under stress and had a 'cheeky cough' that wouldn't go.
As far as I am aware there is no evidence at all that "they are working too much" in relation to PMR/GCA. Adrenal function has been touted as a cause - and then it was decided that it is extremely unlikely.
Or boiling Cauldron, or as the youngsters say "whatever"
I'm still on 3mg after going down to 2.5mg using DSNS but that was too low. I'm fairly stable on 3mg so It seems that 3mg will have to do for now because I'm still getting little niggles now and again.
Glad you're surviving on just 3mgpd. Try not to fret about reducing: as we know here, it will take as long as it takes. And you're at a pretty low level anyway, so I would say to stay-put until or unless you feel ready to have another go. Maybe in the Spring... warmer weather etc?
Thanks, I'm ok all considered. Sticking at 2mgpd Pred through the cold, damp Winter but generally more active and fewer / less intense bouts of the dreaded DF.
So, for me at least, gradually back to Business as Usual as we turn the page and start a New Year
Have a good one if we aren't in touch before Crimbole
Best part of being on 3mg is that the DF has greatly reduced, that really was a downer, I'm also doing a lot more without the constant stopping for a nap! or just giving up on a job until I felt more alive. So as we say onward and forwards.
Like you, unless I have to increase I think I will stay on 3mg until early spring.
There are a few people on the forums with a similar history to me: something very akin to ME in their 20s/early 30s and then, many years later, PMR appeared. ME typically starts with what appears to be a viral infection and causes raised liver enzymes (also often found in PMR) which lasts about 6 months or so and then in some patients this is followed by an extended period of fatigue. In many patients it does resolve eventually but for others it lasts many years.
PMRpro, that reminds me: I had a nasty bout of Measles at age 26 - followed by a period of even nastier bout of Depression. I vaguely remember my Family GP saying that (q.) "some types of viruses can lurk around in the 'system' for a very long time".
Reminds me of the recent BBC series 'Brain on Fire' where some recent research suggests that Inflammation in the Body / Brain can be a cause of Mental Health issues (e.g. Depression / Anxiety disorders etc) in people who have previously had none - and linked to things like CFS / ME as much as anything else. Food for thought..?
Very likely I think - these things are interlinked, I don't think any of them exist ina vacuum. But there has been no proof - the science and technology is there now, or at least, the start.
I told my GP I think my girlfriend is a Narcissist and asked him how I should treat her. He said: "Keep her in a large pot, give her plenty of water and keep her in the shade".
Thanks Daisy, I agree that Clinically diagnosed (as opposed to Reactive) Depression is another 'Invisible' and mysterious illness (like PMR and GCA) which can be devastating for sufferers - and those close to them.
I can track-back my two, (uncharacteristic for me) episodes of Depression (in 35 years) to the effects of major viral infections on Brain Chemistry / Emotional 'Balance'. Although there can be many contributory factors in Clinical Depression (e.g. any or all of Genetic pre-disposition, Personality Type, Major Life events, Substance abuse, Lifestyle, to name a few?), the more I read about this topic, the more I'm convinced about the recent 'Brain on Fire' theory: which suggests that at least some Psychological disorders can be a result of Inflammation in the Brain.
That said, some Counsellors and Psychotherapists will argue that most Depression and Anxiety disorders in Adults invariably stem from Childhood Emotional Trauma (Abandonment / Attachment Styles etc). Mmmm... I keep an open mind about that.
Fortunately, I've survived a few major Life events and Challenges of various kinds (who hasn't?) and come through them ok, and with my Intellect and SOH intact - or even sharper. That said, a few of You Lot here might argue otherwise..
Main thing is: try to keep smiling through adversity - and keep an open mind about what 'Normal' is in the first place? Throughout History, quite a few Geniuses, Gifted Intellectuals, Creative Artists, Performers, Writers, Philosophers and others would have been classified as having 'Mental Disorders' according to DSM 5 (The Diagnostic and Statistical Manual of Mental Disorders).
Enough said.. ? Better get off the soap box now...
I would classify depression, in my case was worse than my current PMR and as we know PMR is devastating for the best of us, some worse that others. But for me and about 10 years ago depression/anxiety was a place where I could not find pleasure out of anything. It was a dark and devastating period with anxiety out of control. Food had no taste and I seldom wanted to eat. Normally to look at a beautiful flower garden or a beautiful woman does something to the pleasure centers in the brain and we experience 'a feel good response' however in a state of depression it doesn't happen. Life becomes so bland the we feel that there is no point in living. That's real depression, sometimes we say we "I feel a bit depressed today" well I can assure many that that's not depression. Only those who have experienced clinical depression can really know it.
Today, I only aware of have PMR and I am not depressed and the feel good sensations are all intact (apart from the hindrance of PMR) but I can finally experience real pleasure and laugh again So to me 'that's NORMAL
Well said Reverend Pete. Yep, the term 'Depression' all depends in context. For some, very serious indeed. Many of us probably know someone who didn't make it through to the other side. We are fortunate.
Glad you're ok. Keep well too, and 'Normal
Happy New year, and once again we 'Turn the page'..
Like PMRpro I had an ME-type condition when I was young. It followed a nasty bout of flu and fortunately only lasted a few months. Last year when I first went down with GCA and PMR and before I was diagnosed, I was strongly reminded of that earlier period of my life.
It was in the press too. I heard the bit on the BBC and I thought what they were talking about has been known for years and is nothing new. It is just another autoimmune disease with all the old nasties. They probably know more than I do though. My mother had ME so I was particularly interested.
Hear hear. By my logic, it makes sense that Inflammation in the Body can also affect the bio-chemistry of the Brain (and its ability to regulate emotional homeostasis)?
Mark. I’ve got a long history of serious infections requiring hospital. My immune system was assumed to be slack. But no. It goes beserk at anything which is why I get exhaustion a lot.
Daisy, it's only my (I stress amateur) guess but it could be both things at the same time?
If your AI system is, let's say, relatively 'sensitive' (as opposed to 'slack'?) compared with the Norm, that might explain why it over-reacts to Invaders (e.g. infections / viruses etc) - and with the associated exhaustion. That said, I'm not a medic so my theory is totally speculative and open to discussion...
It’s a sh*t thing when that happens. You get this sort of hopeless feeling don’t you. Hang in there buddy. PMRpro posted a 15 page doc of patient/ doctor stuff and I have printed it out. It’s amazing suggest you do same. It will really help. Xxx
Thank you Mark,there was a time when ME was not recognised as an illness and those unfortunate enough to have it were considered to be just not trying enough to do things or being lazy.That was quite a few years ago and thank goodness it is acknowledged now as a debilitating illness,and this article is proving that.l wish you a very happy Christmas and New year Mark,and l look forward to many more postings from you in 2019.
Thanks Grants, wishing you and your family a peaceful Christmas and healthy (er) 2019.
On, and Forwards.. or is it Sideways?
MB
My wife developed ME 30 years ago & is still in a state of remission I'd say. At least now she is not in a wheelchair,but too much stress or overdoing physical stuff & the symptoms start coming back. Some years before she had a virus which attacked her spine. She was treated with steroid lumber injections.
It was a nightmare round of mainly disbelieving shrinks who said it was depression causing the fatigue! She could fall asleep in seconds & barely walk 10 yards at it's worst. The medical disbelief was demoralising on top of the illness it'self. Some medics still advocate physical exercise routines as a cure! Mad they are!
Have a good Christmas. I was going to say go easy on the red stuff!! But hey! it's Christmas.
Omg. Am I your wife? You just described me. Following glandular fever at age 24 and then six weeks of pleurisy I have never really been recovered. I’ve been ill almost constantly. I had a dreadful early life and I think stress on mind and body has left me a wreck.
Hello "gorgeous wreck". Hope you're feeling a bit better today.
In her mid twenties she woke one morning & couldn't move. Her one side was paralysed from the waist down. A long hospital stay & lots of steroid injections + dye for X rays etc. Touch & go & eventual recovery, but never the same. She had a tough early life too.
As often said on the forum the body & mind can only take so much & then something has to give! It may take a while but the damage has been done! We all just do our best to get on with it don't we!
Hello Pepperdoggie - I too contracted ME many years ago (26) and totally agree and relate to the comments you make in your second paragraph. Sadly, I still feel there is a lot of scepticism surrounding the illness. Like PMR, it is another invisible illness with, as yet, no definitive diagnostic test.
I remember the day & minute that I suddenly went from feeling so well to being so unwell. I feel that virus attack somehow altered my immune system response - almost as though the virus became "locked in" and never went away - rearing itself and its myriad of symptoms whenever it chooses. So, I think the virus your wife experienced certainly played a part in her developing ME.
I'm sure she is pleased to have your support and understanding as it can be a testing illness for many partners.
Meanwhile, I wish you both a Very Happy & "Merry" Christmas & great New Year to come...Kathy x
It is indeed testing for all concerned & initially the symptoms are so baffling. Luckily she had a superb understanding GP who supported her all the way.
I hope you're in a phase of remission yourself Kathy. It's so important not to overdo things specially when you have PMR as well.
I too remember the exact minute. Thursday. 11 am. I knew my life had changed forever. I felt something break and I cannot describe it. I’d finally pushed myself too far. 😭😭😭😭😭
Yes, I read the same article. I went from to PMR, to GCA, and then diagnosed with Fibromyalgia. It will be interesting to watch for follow up article. Thanks for sharing.
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