CFS

ruby I often feel as though I'm not getting enough air into my body, if that makes sense. It's because I'm a shallow breather, I think. Since doing yoga it's improved a bit because when it's happening I make myself pause and take a few really deep, slow breaths in and really push the air out again. It helps even more if you vocalise as you breathe out, a big groany noise (best done in the privacy of home )

With all that's been happening to you, I imagine you're very stressed which could affect your breathing.

Take time for You now

Can I please ask if any of you suffering with CFS has breathlessness problems?

cornerg following on from your comment about something that gives you joy - I have always set myself mini-tasks to do that were either do-able in one hit, or if not, could be put on 'pause' until I could complete them. That way, I got a lift (not quite joy!) out of achieving something or knew it was something that could be 'put back in its box' until I felt able to finish it.

When I was first in hospital my memory was beyond frightening it was so bad, so I made myself do codeword puzzles. The buzz I got the day that I could carry two letters in my head was indescribable! They took me days to complete because of the memory and exhaustion, but I'm nothing if not determined

Last time I saw the homeopathic consultant she asked me what I did that gave me joy. I realised I was concentrating too much on what I thought I should do, rather than what I wanted to do. There has been a re-adjustment (easier now I don't have work to manage) and now I make sure there is something that lifts the spirits each day, nothing complex or expensive, something like relaxing in the conservatory watching the birds, it makes a huge difference to me. Could be worth a try for any of us if we feel our life is out of balance. Yes, minimouse I get p**ed off too sometimes, why wouldn't we? We've had to re-paint the picture of how life is going to be. I think it's allowed sometimes. jusnoneed I hope your friend has a sympathetic and knowledgeable doctor and can continue to laugh n

Luckily things have improved for her over the last few years (her worst times were about 15 years ago), and her really bad times seem to be behind her. She still gets the bouts of depression but her general health is much improved and she gets less affected by the tiredness etc. She chooses to live in a fairly isolated place, gradually has managed to get back to work - mainly from home but some travel involved too. Her hubby runs his own business, transport based so she can go out with him when she wants to. She also has to run around a lot with her elderly dad so cannot stay away from him for long, hard going sometimes (which gets her down).
Very glad to say she has retained her wicked sense of humour and we always end up crying with laughter at some point when we meet up.

jusnoneed Sorry to hear that your friend gets depressed as well. I find I get thoroughly p***ed off rather than depressed.

One issue, that I think tends to get overlooked, is how isolating ME/CFS can be. Working life and a social life can become well nigh impossible. The effort required for either results in such drastic payback that one can just slip into an isolated life. If I didn't have my OH I do wonder how much I could do on my own in terms of getting around etc. Perhaps your friend is affected in this way, too, which makes her depressed?

My friend fought the symptoms for years, having to give up her job and struggled with daily living. As I said she tried various things and all I meant was that she found after giving up wheat products her health gradually improved - maybe an allergic reaction to it didn't help other symptoms.I never said it was a cure all action. She thought it worth trying and it helped her, and she got back to living her life.
She still has bad days, depression can affect her, but she fights it all.

Noona I was thinking about your question and wondered if you would consider telling us how this condition affects you so that we can intelligently advise. I started writing down my own experiences but thought I might be in danger of hijacking your thread so will wait to hear what your thoughts are on this.
This site is anonymous and hopefully secure enough since we are unlikely to meet unless we ourselves arrange to do so which seems to make it pretty safe to post such things on here, what do you think?

Luckygirl that is awful! They just don't seem to read the notes do they? I just wonder when they will wake up to the fact that they need to look at the whole person and not just a single symptom, I can't help feeling it would be a saving in the long run.
Frustration with medical people as well as general frustration with how life is certainly does not help!

I saw a neurologist last week because of my many problems, including balance difficulties and severe migraines. I also explained to him that I had been diagnosed several years ago with CFS so this is part of the mix - his response was "Oh, do you get tired?" Sigh. I pursued it no further and left him to talk about the migraines where he felt more at home.

synonymous Ah yes, it was Yuppie flu time for me, too! Luckily, my neurologist was of the more enlightened variety!

CFS and ME used to be differentiated by the symptoms - ME has many neurological issues, but having said that, it seems that even the medical profession uses either term. I have never been offered any help from the doctors, it's just been a case of 'this is what you've got, good luck'!! I've always been a glass half full person, so I've just girded my loins, stiffened my upper lip and got on as best I can

I always carry taxi fare with me so that, if the exhaustion catches me out when I'm walking, I can at least get myself home. Many's the time when I was 'new' to it all, I had to sit on the pavement waitng to recover enough to carry on

Just over two years ago I had another relapse, but I've recovered enough to now do an hour's voluntary tutoring once a week (plus all the prep involved!). It means housework goes to pot (any excuse!) but it has been a huge morale booster. No idea if I can keep it up, but .....

I have a deep personal dislike of my condition being referred to as ME - it is not 'me', I am more than the condition. Just my reaction and I do understand the differences, when I was first diagnosed the yuppie flu label was still about. Really disrespectful. . After a few years fibromyalgia was added to my diagnosis which seems easier for those not affected to understand. annsixty as minimouse has said education is still possible, for some at least, if approached differently. I was in the second year of a 3 year professional qualification when diagnosed, made it to the end, followed it with a post graduate qualification and then an MA, all studied part time. It meant all sorts of adaptations at home and by the Universities but it was possible. I know I was lucky, my condition could be managed, but that might also be the case for your GS. Further and Higher Education establishments can be very understanding and helpful. i wish your GS hope for the future. There may not be a cure and yes, it is life changing, I still get angry sometimes but that really doesn't help. I try to get alongside it, manage it rather than let it manage me. I don't always succeed but there can be some sense of control. I wish your GS and everyone impacted by this horrid condition (and that includes our families) a hopeful future - and a good nights sleep .

Exactly MiniMouse your second Para is just what I was trying to say because the impression I received was that jusnoneed seemed to infer it was only eliminating wheat that was needed for a cure since her friend's friend had done that and recovered from being ill. If only it was so simple. In any case anecdotes at third hand or so can often only be a pale reflection of the facts so we don't know what the factual diagnosis was.
I am glad to have found some particularly good, 100% pure, essential oils which have helped me very much with the digestive side in particular.

I don't know if I should be overly concerned whether CFS/ME are the same thing or not but for some reason my health notes now say both after an original diagnosis of ME. I don't think my doctor would treat me any differently whichever it is as I have to rely on my own efforts and only receive sympathetic murmurings which I don't find at all helpful. Whatever it is I would really love to be free of it and all it means! It is not what we planned for our retirement and it is true what they say that 'you don't appreciate what you have until you lose it'.

Yes synonymous the brainfog and state of 'total non-function' are awful. I still feel as though I've failed when I can't get going - or keep going. It must be impossible for healthy people to even begin to understand the level of exhaustion we experience and it's so hard to put it across. Plus, the suddenness with which it strikes.

I don't think anyone was suggesting that coeliac and ME/CFS are the same thing, just that being gluten free sometimes relieves some of the digestive issues.

There's also confusion over whether ME and CFS are the same thing. This may be a useful site fo more info : Hummingbird Foundation for ME.

Sleep often eludes me too cornergran and the nights can often be long and lonely. I would agree that complementary treatments can be very helpful but we obviously just have to use our common sense and not be taken in by nonsense. I use all kinds of helps in tandem particularly for pain relief. The brain fog makes so many things a total non-starter. It doesn't take much of anything to tip over the edge into a state of total non-function either.
Thank goodness for all the modern gadgets which make life easier, particularly my tablet which brings the world into my sphere and also enables me to read without having to hold a heavy book. My bed is wonderfully comfy, I have a walk-in shower where I can sit to shower and lovely views to look out on from my armchair so all in all I am truly blessed.
Having a multi talented, caring DH is a wonderful bonus too. He reckons I should have inserted the word handsome - can't think why!

CFS/ME is a very much misunderstood condition and to empathise must be very difficult. No bandage - no problem, take a pill etc.
I would love to find a 'cure all' but there is no such thing for this and sadly it is just a fantasy to think diet alone would cure it. Celiac disease is miserable but is just not the same thing at all.

One of my friends suffered with this years back. She tried various things and eventually someone suggested she tried going wheat free. So she stopped eating bread etc and her health gradually improved and she hasn't looked back.

ann It's almost as though the body is completely overwhelmed by 'something/s' isn't it?

Tell your GS not to lose heart - easy to say, I know. I completed a post-grad course using mainly home study a few years ago. To say it was a challenge would be a massive understatement, but it shows that continuing his studies is possible. The only thing I would stress is that he must not overdo it! I did and then had a relapse, so it's essential to keep within the limits he can manage.

cornergran I think any complementary treatments are valid if you find them helpful. We're all different and our bodies respond to different treatments. Over the years I've used homeopathy, acupuncture and cranial osteopathy. They've all helped, but of course not cured. I react badly to so many allopathic drugs that I steer well clear!

Interesting you mention antibiotics annsixty, my CFS arrived over 25 years ago after a 6 month course of antibiotics. A nutritionist helped me enormously initially, I second all synonymous says about pacing and general life management. One of the difficulties most experience is the unpredictability of this illness. Flare ups are sadly a reality.

As others have said coping mechanisms become second nature. For myself pacing and planning, stopping an activity before I reach exhaustion or excacerbate pain, care with nutrition (I also avoid wheat/gluten), avoidance of certain chemicals when possible, walking each day - my baseline is 10 minutes but sometimes much more is ok, not trying to concentrate for too long to minimise the fuzzy head often called brain fog and relaxation via Mindfulness are the basics I think.

This may be contentious but I have found homeopathy very helpful. I was lucky enough to be referred to an NHS hospital and a very experienced consultant. The remedies have been prescribed alongside traditional pain medication recommended by an NHS pain clinic. It all helps. It can be very difficult for young people to work with the limitations, it's an invisible illness still,often misunderstood.

When I think back over the last 25 years I know I have achieved a lot personally and professionally, I may have had to do things differently but I've been lucky in that my CFS has been manageable, I know it's not the same for many. The NHS run psychoeducational courses on managing CFS. They aren't for everyone but they do give the opportunity to think about differing management strategies and decide which may be helpful. It's also good sometimes to know we aren't alone with this so frustrating condition. Good wishes to anyone affected.

Sorry for the long post - sleep eluding me tonight

annsixfy that sounds quite likely and an awful lot for a youngster of 11/12 to contend with. So sad for him but on the positive side I have read that the younger ones may have a better chance of recovery than the older sufferers so let us hope that may be the case for him.
I was recovering from a stroke when I then had a virus which laid me low for weeks on end and resulted in my 'collecting' ME/CFS. Like MiniMouse I have pretty much lost sight of all the coping mechanisms I employ which help me to carry on.
Noona it is worth trying anything really! I am very careful with food and am very aware of what doesn't agree with me.. Pacing myself, not setting any targets at all and not doing too much and definitely not pushing through pain is really important but we are all unique and what works for one may well not work for anyone else. I find it best not to dwell on something which I have lived with for years and sadly shows no sign of going away.
to all having to live with this debilitating condition.

Thank you Mini sadly he does get very down and his Parent's separation hasn't helped. When he was 12/13 he was ill for some time and was eventually diagnosed with osteomyelitis. He had 5 general anaesthetics in 8 days and was on IV antibiotics for 8 weeks leading to the theory that it was that which triggered his ME/CFS.

I had to look up CFS!That was one disease initials code too far.

ann So sorry to hear that someone so young has CFS

I've recently gone gluten free and that has helped with IBS symptoms. I've not been tested for coeliac, but I worked out for myself that certain foods exacerbated the symptoms (e.g. Homemade soup containing barley was one of the worst offenders!).

I think it's horses for courses regarding what helps. I've had ME for so long that I'm not even aware of all the life adaptations I've had to make until I stop and think about it. It's the unpredictability of how you'll be feeling from one hour to the next that's so frustrating.

I hope he finds a way of coping and doesn't get too despondent

My 17 yr old GS is a fellow sufferer and I also would welcome any suggestions,he also has IBS which is often present as well. He was home schooled for the last 2 years and couldn't cope with full time college. It is a life altering condition for most.

Sorry to hear you have this Noona I use Mindfulness and mediation, which I learn at Yoga Nidra classes.