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Author Topic: Greetings from SE London  (Read 447 times)
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MarkM
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« on: September 13, 2017, 03:27:07 PM »

Hi. Been lurking here for a couple of weeks reading through the great info and support and thought it was about time I said hi! Apologies this ended up being quite a long post!!

I'm nearly 50 and I've had symptoms for probably 15, maybe 20 years (maybe longer but I think looking back on it they peaked when I went through a sustained period in a very stressful job, divorce and threat of redundancy and have never recovered since!). About 8-10 years ago (I forget now!) I went to my GP and was told that I was getting older so should be 'tired' and to take some Vitamin C, leaving with the feeling of being laughed out of the surgery, wasting the doctors time etc and therefore didn't do anything further until recently and lived with my symptoms (not helped by my low self-esteem and confidence either).

After comments from friends and family about how I'm always so much more tired that everyone else etc, and a few bad crash episodes after particularly heavy and stressful periods, I finally plucked up the courage to return to my GP and chose one of the doctors that my wife recommended from good experiences she'd had. A complete change of view, he listened to what I said and sent me for blood tests to rule out things like Thyroid issues. These all came back 'normal' and without prompting he suggested that he things I have CFS and has now referred me to the local mental health (not because he thinks I'm depressed but to help with the mood swings) and the CFS centre of excellence in SE London.

So, currently I am undiagnosed but suspected of having CFS - pending further tests I would imagine once the referral comes through.

OK, so how do I feel, well today is a good day, I'm only exhausted (made worse by having to stand on my 40 min train journey into work this morning), shoulders and neck ache, throbbing headache across the forehead, brain is fogged and concentrating is hard. But as I said, today is a good day.
I seem to have the classic symptoms (albeit what is termed a 'mild' version) and of course every day is different, but on no day can I say that I donít have several (most?) of these at some level.
Fatigue - every day to some level, bad days hardly able to get up/perform basic tasks. I may wake feeling 'ok' but by the time I've had a shower etc I'm knackered.
Delayed onset of flu like symptoms following any heavy periods of stress and exercise starting a day of so after and lasting for anything from 1 - 3 or 4 days.
Disturbed and unrefreshing sleep often waking feeling worse than when I went to sleep. Wake often during the night and unable to return to sleep even though I'm exhausted. Really vivid and strange dreams.
Headaches - every day, sometimes bad as soon as I wake, or starting low in the background and growing through the day. Mostly around the forehead above the nose/eyebrows.
Muscle aches - back and shoulders generally and quite sharp on the neck where it connects to the skull
Brain fog - lack of concentration, unable to focus, sometimes can't remember words even though I know I know them. Struggle to follow conversations particularly in group and social situations. Dizzy and disconnected feeling, balance issues or knocking into things.
Cold extremities but always feeling hot/feverish even though normal temperature and excessive sweating even in winter.
IBS type symptoms, bloated, reflux.
Sensitive to bright light and loud noises.

As I said 'mild' based on the definitions Iíve read as I can lead a relatively  'normal' life by 'dealing' with the above and with restrictions and opting out of things such as avoiding work socials and crashing out at home in the evenings/weekends to recover and build up the energy for the week ahead. Iím hoping that by identifying this I can start to put things into place to help manage it better and improve so that I can continue to do so without too major a change Ė although I accept that changes will have to be made!

It's great to read posts from others here and see that I'm not alone and that there are things that can help with this condition. And of course to get help/advice on dealing with work, family and friends etc. This sort of support is immeasurable so thanks for what Iíve already taken from here and what Iím sure I will continue to do so in the future.

I've been referred to the Malsden @ Denmark Hill (awaiting appt) - if anyone wishes to share any experiences that would be great (although maybe I don't want to know if negative to be honest!) and of course any other advice etc gratefully received Smiley

M
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roger
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« Reply #1 on: September 13, 2017, 04:27:19 PM »

Hi Mark,

Thanks so much for such a complete and honest introduction. Iím afraid my experience of CFS clinics was negative, but that was around twelve years ago so, hopefully, things are better now. So my advice would be to go to your appointment (when you get it) with an open and optimistic mind, and see what happens Ė if their advice works for you, great. But if it doesnít, donít give up. Iím an example of someone who was told categorically that I was too old to anticipate much in the way of improvement, but they were wrong.

You CAN get well! As far as Iím aware, there are no Ďquick fixesí or Ďmagic bulletsí, but by gaining an understanding of whatís going on and working on correcting your particular issues you can at the very least improve dramatically Ė Iím 100% sure of that.

Regards getting help from this forum, keep reading and when questions arise, which they WILL do, just ask. The forumís pretty quiet at the moment, but there are still people who understand where youíre at right now and will help in any way they can.

Thanks again for your brilliant intro, and best wishes.

Never give up, thereís always a way.

Roger.
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agapanthus
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« Reply #2 on: September 13, 2017, 05:53:44 PM »

Just wanted to add a 'welcome' to Roger's post above. I too had to struggle initially to be 'heard' by my GP. She was constantly not understanding the level of my symptoms and it took several years of illness before I asked to be referred for CFS having self diagnosed it, but even then she did no blood tests! it was many years later before I had them done, even though an immunologist had diagnosed me by then (still without tests done!).

It is good news that you have managed to continue to work for such a long time despite symptoms, and you seem to have made some attempts not to push through, except for work. I am sure it will be possible to improve on some of those strategies with understanding how to pace in a deliberate kind of way.

In my opinion, we all have different types of ME/CFS since it's just a diagnosis of exclusion, and without decent blood tests to look at what is going on, it's hard to have the full picture. In my own case I know I also have autoimmune disease going on and have had a continuing struggle with some of the issues you highlight, along with an immune system that constantly is fighting the next cold. Actually I sleep fine mostly which is helpful, so I hope you find some help for that aspect, as sleep is so healing.

The problem with the NHS is that it works to the NICE guidelines and their recommendations are chiefly Graded Exercise (positively damaging for some patients despite what the 'experts' say) and CBT which may help with coping with depression but IMO is not a cure. They do sometimes cover a kind of pacing, but how that works out seems to vary. Sometimes the NHS CFS units have other people in groups and that can be helpful and supportive .... or depressing, depending on the group and the person leading it!

Anyway, as you have observed, stress can make things worse, so avoiding that as much as possible is helpful but not always possible in life.

I am sure at any rate that your symptoms can be improved, and you should find much on here to look at, maybe try yourself, depending on what you feel drawn to. As Roger said, it's rather quiet on here at the moment for people posting, but I hope you will find it helpful overall.
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Wits_End
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« Reply #3 on: September 24, 2017, 10:34:56 PM »

Mark, a belated welcome from me too - and that's the Maudsley at Denmark Hill you're talking about.  I was asking the other day whether anyone had had any recent experience with them, but am not sure anyone has answered.

Can I suggest one thing which might make your life a little less stressful, from what you say?  Ask your GP to sign a form for you which you can get from any railway station so that you can get yourself a Priority Seat card - both Southeastern and Southern subscribe to the system (not sure whether it would apply on the Overground since that's TfL, though) - and don't be ashamed to USE it when necessary (boy, I wish I'd take my OWN advice sometimes! - I keep telling myself that I don't need one since I don't commute any more, but you'd be surprised how many overcrowded trains I still end up on).  I'm guessing from your journey length that you're probably on one of the 3 NE Kent lines somewhere, and I know those can be hell from what my former colleagues used to tell me, so if it's difficult for you to make it through the day/week then why not stack the cards in your favour a bit?
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MarkM
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« Reply #4 on: October 05, 2017, 08:00:09 AM »

Hi again

Thanks for the welcome responses and support/suggestions. I've had a reasonable couple of weeks which has been fantastic, my wife has been awesome giving me more space, taking my little one out for the whole day so I could rest etc and I've been taking some vit B, D and Magnesium tablets after reading these suggestions in various places and I think they are helping - as I say a reasonable couple of weeks (OK still not 'normal' but a lot more bearable than previously).

I also had a call with the mental health team following my referral - they straight away said I didn't need their help (as they are more aimed at helping those with depression and worse) but they did say that they don't think the Maudsley CFS centre will help me as I won't meet their threshold as I'm not serious enough, they aim to help those who are in serious pain/can't even get out of bed etc. Guess we'll see if I get a referral appt from them, but I'm not holding my breath now and will have to continue to self help by making changes to my lifestyle and investigating other things that have been shared on places like these forums.

The only thing they did mention was that my borough have a scheme under the Improved Access to Psychological Theraphy for helping those with milder mental health issues that you can self refer to - they seem to offer 1-1 and group counselling, CBT and even a Chronic Pain and Fatigue Workshop so I'll investigate that further too - don't know if it's a national thing/only some boroughs etc but might be of interest to some of the other members here if not already aware.

Hope everyone is doing OK and managing their respective conditions.

Mark
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roger
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« Reply #5 on: October 05, 2017, 08:21:31 AM »

Hi Mark,

Personally, I don't know of anyone who's been seriously helped by 'the system', but of course that doesn't mean that such people don't exist. But I do believe that your 'self education/help' plan will serve you well if you stick at it. So keep researching but keep in mind that there isn't one magic bullet, it's a combination thing.

Good luck - you sound to me like someone who'll get there!

Roger.
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agapanthus
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« Reply #6 on: October 05, 2017, 02:29:09 PM »

Hello Mark
Glad to hear that you have had a bit of a breathing space, and sounds as if you have a very supportive wife who is doing her best to help. It's good that you are taking those vitamins/minerals too - might be an idea to try and get a Vit D test done (either NHS who are often reluctant to do so, or privately as it's not expensive) to see what your levels are like. Also I assume you have had B12 checked too? It's always worth asking for copies of the tests, as they will say that you are 'normal' maybe but you could be at the bottom of the ranges.

My only thoughts re not getting referred anywhere as you are not ill enough for them, is that you then do not get a diagnosis of CFS/ME. Having a diagnosis while you are working could be useful in the future, and it is possible for your GP to diagnose you if no one else will. If you then have that diagnosis it gives you a 'fall back' position re work if at some point you need to ask them for 'reasonable adjustments' via the Equality Act as without the actual diagnosis it might be harder to argue your case. I am thinking of a 'worst case scenario' here, which hopefully won't happen, but at least you then have the ground prepared.
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