I tuned in to a fascinating edition of BBC Radio 4's 'You and Yours' programme this morning (26 September 2017) on the above topic. Although PMR / GCA wasn't mentioned specifically, various listeners and experts gave their input around the causes and symptoms of, and treatments for CFS / M.E. which will ring bells with many of us, I'm sure.
One of the main discussion points was around whether M.E. / Chronic Fatigue Syndrome is 'all in the mind': i.e. psychosomatic / imagined / laziness: and how quite a few medics dismiss it as a mental / psychological illness for which controversial therapies like 'Graded Exercise' and CBT are the usually recommended treatment according to the UK's N.I.C.E. guidelines. In other words: 'Get more exercise and change how you think about your illness'. There was a lot of strong reaction to that one!
That said, one expert did explain that M.E. absolutely DOES affect brain function (i.e. chemically / hormonally), and the term Brain Fog (impaired Cognitive Function) was mentioned several times. His opinion was that feelings of Anxiety and Depression as a result BOTH of having this chronic illness AND its Life changing / limiting consequences are real, natural, and very common. So, although therapies like CBT might help in the coping process for some sufferers, at least - they are not usually a cure. 'Graded Exercise' also came in for some criticism because many M.E. patients reported that ANY exercise left them feeling worse than if resting, and one listener used the term 'My energy bucket is always empty'.
Another interesting message in the programme was that many people with M.E. previously had some kind of Viral / Bacterial Infection prior to the onset, Lyme Disease being just one. Familiar to some of us with PMR / GCA?
Finally, another expert mentioned the possibility that an OVER-active Immune System and excessive inflammation in the body and brain can wreak havoc with physical and mental energy levels as much as an under-active immune system.
There was another BBC radio series recently, 'Brain On Fire' which I seem to remember followed the same thinking / research: and if I remember correctly, it was suggested that many conditions like Severe Anxiety and Depression can be linked as much to Inflammation in the Brain causing an imbalance in Brain Chemistry, as to external factors like Life experiences / traumas, etc.
I know this is a complex topic and I'm not taking a particular 'position' on it. I've just posted it in case any of You Lot here can relate to the Fatigue / Anxiety / Depression 'trilogy' especially. I think you can re-listen to these BBC programmes as 'podcasts' - but don't ask me how!
Happy Days, and try to keep smiling on the Journey..
MB
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markbenjamin57
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I was just leaving the hospital as I tuned in to this today. I thought it was about PMR till I listened properly. For me the fact it got to discussion point on BBC might mean health professionals are looking in to the conditions like this rather than fobbing you off as idle, depressed, negative outlook on life etc. I have no opinion one way or another. I know what PMR does to me and that did change my perspective on ME and Fibromyalgia. I have always thought a strong will to be fit and healthy would be enough to get through diseases like these eventually. Positive mind brings positive outcomes. I am now enlightened and love drugs. Be interesting to read reviews in the press on academic and personal experiences. If you have an iPhone kindle tablet iPad computer smart TV with wifi download BBCIPlayer. Should be a pod cast or search by programme for today. You now need to set up an account as your meant to have a TV licence to view or listen now.
Good timing, MB57. As I walked to physio this morning I was thinking trying to keep as healthy as possible is getting to be too much work and maybe I should just give up and become a drain on the health care system! But now I guess those thoughts are part of the disease process and I should just be Zen about it, let the mood flow past.
I tend to agree with you Heron. From personal experience, when soooo physically / mentally fatigued and debilitated with PMR (not to mention dealing with the side-effects of the Preds), you can start to question your own mind about 'Cause and Effect' in the process overall...
It was basically a lot of people with ME phoning in along with professionals talking about it. I think the main question was, what does the NHS offer people with ME? It seemed CBT and exercise. It seems that they are relooking at it because of pressure for change and there will be an update to the guidelines.
One message I got from the prog was that a 'one size fits all' approach has very variable results with complex health conditions like M.E. - a bit like with PMR?
It has certainly been established that the "managed exercise" program doesn't help and is the wrong way to go about it. Mind you - how many of them are PMR patients?
Yep, PMRpro, I got that impression too (for many M.E. patients). For some, the issue seemed to be that a One Size Fits All, Managed (upwardly in terms of intensity?) Exercise programme was doing more harm than good, and just exacerbating the underlying Chronic Fatigue issues. Result: more Stress, so counter-productive all round. Hence, it appears that the NICE guidelines for this and CBT as a treatment for M.E. are under review.
However, one, apparently very successful Private Clinician did say that the term 'Managed Exercise is often mis-interpreted and / or applied: and effective treatment for M.E. etc is all about appropriate, rather than increased exercise. They are 2 very different takes on the topic of 'Exercise'...
I agree with you about Us PMR Lot being in a slightly different context though... a bit of a physical 'stretching' doesn't seem to do me any harm at least!
No - I meant how many of them have PMR but that isn't considered because of normal inflammatory markers or age. I'm pretty sure that if they were challenged with pred a significant number would improve.
Wish I'd heard the programme, or perhaps not. ME/Cronic fatigue/fibromyalgia often grouped together. Individuals vary so much. We've met people with mild symptoms but my daughter has full blown fibro/CFS in 18 out of 18 recognised pressure points on body. 8 yrs ago was very active, at college - now reduced to crutches and a wheelchair. Last year her disability payments halted. So called professionals recorded misinformation, triggering 2nd appeal. Long story short, 2 appeals, 2 tribunals and money reinstated after 10 months. Second appeal had her sobbing as she was so humiliated during very intensive questioning I could only watch as a carer, and not comment. Believe me, I certainly did when they asked for any input! No money is ever backdated! What happens to poor souls not living with mum to pay the way? No meds help her such as preds. Even a light touch to arm can be very painful. I know benefits budget cannot be doled out indicriminately but people need help not more stress with illnesses like these and pmr. Thank goodness I've got my pension as I certainly could not work at present with pmr.
Don't apologise. It's not a ramble - it relieves stress.
I have a teenage grand-daughter w ME. Also has crutches and a wheelchair. No joke! Have wondered if there could be a connection w my GCA. Grown-up children and other grandchildren all super-fit so far. Seems so unfair for her.
Thank you BonnyQuine. I've certainly wondered about passing on 'dodgy genes' giving auto-immune ailments. which lay low until we are at are most vulnerable. My daughter also has Grave disease. We had several very stressful years when her father developed early onset Alzheimers. On a plus side, after they took all our savings and more, we paid everyone off, sold up and moved to North Yorkshire. Love our market town and people. Life's slower, people chat to you. Very theraputic.
Experts, patients great.................I just sometimes wish just one of those experts had experienced fatigue................and the person who said..................it is all in the mind...........feathers spit and then the gardener arrived...............maybe it got better........and I was just fatigued and grumpy I might try the podcast.....................on the other hand?????????
Thanks for the post Mark. It all sounds very relevant and interesting. Perhaps our grandchildren will have the benefit of on going research. Medics simply don't know what to do with chronic fatigue and there is often scant sympathy for sufferers. I had low level depression ( functioning) for longer than I care to think about that lifted with my first dose of Pred. Inflammation?
V interesting, SheffieldJane. Totally agree about the medical bafflement and the scant sympathy.
It had never occurred to me before that I have not been at all depressed since my GCA diagnosis. (Well, hardly at all - there was a blip early on . . . ) Thought it was maturity - developing an attitude of cheerful fatalism. Never crossed my mind that it might be the Pred. Hmmm . . ??
When I first became ill, I went down like a ton of bricks, from working hard in the fields to taking to bed with what I thought must be fly, I was never out of that bed again for 7weeks, slept it away to be honest.
I do not remember ever getting up to the toilet but my husband assured me I did. However when I finally surfaced, I was hit with some tremendous pain everywhere. There was not a part of my body that did not hurt even my hair hurt ( this is many years ago long before ever hearing or being diagnosed with PMR) Which brought back memories or rather nightmares of that time long ago, as I really thought here we go again.
It took many doctors & eventually a referral to a Rheumatologist to get a diagnoses of fibromyalgia (another huh! What is that! Moment)
I ended up in a wheelchair, I could barely walk 10 steps before my legs gave away under me, but the fatigue was the worst bit of it all. Later although still good & bad days with the FIBRO, I travelled to England via train to stay with my sister for a week.
I thought I was fine, I did feel a bit sleepy now & then, but when I arrived at my destination & was met by my sister I was fine.
I went to bed that night not late, just after 10pm. When I woke, 3 days of my weeks holiday was gone. My sister & her hubby came into the bedroom seemingly every mornings and umpteen times during the day, just to check I was breathing. Her mother-in-law whine I had never met, came everyday to visit with me. She was also a retired nurse. And she thought they should have called a doctor.
But my sister knew of my history, & she assured them I would waken up sooner or later.
I guess my point is, why would anyone go to visit their sister just to go to bed for 4nights. If it was all in the head.
With every bought of fatigue came the pain, which always seems worse than the last bout. As for exercise, I was a fine figure of a lassie, not an ounce of fat on me, I could run, jump, with the best of them, I was fit as a fiddle. Who when working on the farm used every muscle in my body. I also loved the work. But eventually I had to give it all up. When a good spell occurred I would think great, that is it past now, so I would go back to work.
Only to find that I could not do the job. So I took a job in a factory sitting on my backside soldering boards. Boring but easy. Until one day I could not stand up, I could not even get up out of my chair which was on castors. It was lunchtime & we went to the canteen for lunch. My co-workers kept shouting to me to come on. I kept pretending to be finishing something, rather than admit I could not get out of that chair.by then that sister in England had moved back to Scotland & she was the supervisor in that factory..
She had an idea something was up, so came back into the factor, & when she did, she knew by my face she was right, I bust into tears as I told her I could not get up. She sat for a bit then said well, Just one thing for it. And she turned that chair around shouted legs up, & we pretended we were acting daft as she pushed me at great speed into the canteen. Obviously when she parked me, she did so at our table.
I had my lunch, when time was up, she grabbed my chair again shouting so that everyone could her her mucking about, & ran with me into the toilets. Where we waited till she got me up & our to my car, then drove me to the doctors.
It was a nasty FIBRO flare she said. Go rest.. I never worked from that day. So why would anyone pretend they were so ill so in pain, so tired the lost weeks let alone days. And lose what really should have been the best years of their life..If it was all just in their mind..
Thanks for posting this, as I was one of those very same people that was told time & again it was all in my head,my depression was due to them the doctors, not the condition. It was them not believing me. I ended up on Prozac for 12 yrs. They said the pain caused the depression, I said they did.
It's a bit late tonight (22.00 here, in case you're not the UK!) but I'd really like to respond in more detail from similar experiences. Will get back to you shortly.
Depressive mood is part of PMR and many other autoimmune disorders - and it is disgusting when doctors try to dismiss us like that. I told my GP that I knew he was writing my symptoms off as "all in my head" and he had the grace to blush.
Hello Mark. I heard that broadcast too. My wife had M.E. over twenty years ago It's incredible that nothing has improved much. YUPPIE FLU the media named it. At it's worst she needed a wheelchair & would nod off in exhaustion in moments. We did the usual round of shrinks who mostly diagnosed it as depression! Who wouldn't be depressed. She took many years to slowly recover her strength & must never overdo things or it begins to kick in again. Mad & demoralising some of these medical theorists are. It was a wonder waterboarding wasn't suggested.
I don't think I believed in 'yuppie flu' until I got PMR. I just wondered why the sufferers didn't just go to bed earlier, then they could get up in the morning? I'm paying the price of that lack of compassion now!
Is Chronic Fatigue a white persons disease as PMR largely is?
I listened to this and found it interesting, and thought at first they were talking about PMR. But on hearing the stories of some of the people I'm really glad I've got it and not ME, which sounds horrendous. They mentioned the Lightning cure, which some find beneficial, and info can be found by googling it.
A very smart Doctor here in the u.s. always tested her patients for chronic fatigue; she attributed a particular virus to it--I believe it was HHV6--however, don't quote me, I've forgotten. Anyway, I didn't have it--this was 10 years ago--and I didn't have pmr either. She thought I had Lyme but that's beside the point...I had something that has made me ill for years and years, didn't respond to her treatments. My point is chronic fatigue is not in the brain--it's measurable, in my humble opinion.
For me the stand out was about how lack of exercise exacerbates inflammation and too much exercise exacerbates the inflammation? Desperate to find the middle ground and will really look at the 'managed exercise'.
(I was listening as I was tacking up a horse to ride. Lucky me, but I pay for it physically)
This is only my amateur opinion: but surely the TYPE and degree of ENJOYMENT of any exercise matters as much as the amount of it?
For example:
Ok, I should do more typically-described 'aerobic' exercise (according to the textbooks), e.g. walking, running, swimming, go to the Gym etc. But, to be honest, I get really bored doing repetitive stuff like this and see it more as a 'drudge' than something exciting.
So, my (personal) solution? I LOVE washing and valeting the family cars regularly (yes, unusual, I know). But the way I do it involves a few hours of systematic stretching, bending, leaning, kneeling, reaching, walking around and being active generally which gets the heart and lungs working pretty well. AND... I enjoy it immensely (mentally stimulating, sense of achievement, satisfaction etc). Similarly with DIY projects which involve lifting and climbing ladders too..
There are so many different ways of doing 'Exercise' - and, surely, the Enjoyment / Achievement Factor must play a part in the benefits as much as the type or amount?
I always think that to feel 'Nicely' tired after doing something enjoyable is better, therapeutically, than 'Pushing' yourself to do something you don't enjoy, and feeling 'Punished' as a result!
My 'hunch' (intutition) is that some positively experienced 'buzz' / excitement / enjoyment can only be good for the HPA axis and adrenal feedback system, and the resulting physiological and / or psychological effects?
I always had energy to look after my toddler grandson and would only feel my symptoms when he'd gone home. I'd feel as if my blood was circulating round my body in a good way. Now he's gone to Australia I need to find another lovable 2 year old. Anyone got one to spare? 😥
I have but I can't spare her 😊 and just like you, I save my energy for the 3 days I watch her and do nothing in those evenings when she goes home. Best medicine 😊
That's interesting my doctor thinks I might have chronic fatigue syndrome butt exercise just makes my muscles hurt terribly all over. And I do not have fatigue.
Well, jwb, I must stress that I'm NOT a medic (usually, only a 'humorous' contributor on the Lighter Side of PMR!).
But maybe you could (should..?) do some wider research on the Health Unlocked forum around your symptoms to help you to identify what's going on in your context? As many people report on the HU / PMR forum, some GPs just aren't up-to-speed with some of these more complex health conditions...
From my experience, HU is a very helpful source of expert advice and support.
My health issues began with an insect bite on top of my head. This happened on a fishing trip in 1997. Diagnosed with Lyme in 1998. I am seeing the Lyme doctor next week. Hopefully will begin long term antibiotics. The Actemra was a disaster causing neuropathy and bronchitis. I felt like death on it. The prednisone roller coaster is destroying my body. So,yes, I believe an infection or a virus is not only a trigger, but in the case of bacteria, especially the spirochetes involved in tick borne illness can cause problems for years.
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Malaise-the perfect word to describe PMR for me
Headaches
Major flare
Doing well but....
Never give up if you know something is wrong with you - especially if you're a woman
