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 on: October 11, 2018, 12:26:56 PM 
Started by roger - Last post by roger
Hi Anne, thanks for posting.

I agree that the label can be useful as an explanation tool, but I believe that when we start using it ourselves, we tend to become victims, and why should we become victims to what is, after all, a meaningless diagnosis.

Spirituality - oh yes, whichever of the many paths you choose spirituality can be tremendously helpful in so many ways. That's why I posted a short thread on it on this board. 

 on: October 11, 2018, 12:15:14 PM 
Started by roger - Last post by Anne56
Hi Roger,

Just wandered in to have a read. I agree with you about the 'label', it is meaningless when you put it that way but it is useful for e.g. claiming benefits and to explain to family, friends why you are unable to do certain things. As someone on here says, it's good to take each day as it comes and that is what I try to do. Regarding depression: this is something I have suffered from throughout my life but it has always been when I was not acknowledging when something was 'out of balance' in my life, e.g. problems with a job or a relationship. I have had numerous counsellors over the years, some have helped and some haven't. What has helped me is finding a spiritual dimension in my lfe. I suppose I'm basically a Buddhist but am open to other paths. My Buddhist based self-help books have helped me more than any counsellor I have seen!! I agree with you about us being 'out of balance' and that's why I'm glad to see that the medical profession is finally recognising the value of meditation and mindfulness. My son,who has had depression himself, told me about a talk online by a young man who talked about depression and addiction. After I watched it I texted my son and said, he is saying exactly what the Buddhists have said for 2,500 years!!

Sorry, I've gone off on a tangent here!! I don't like any labels. Yes, they can be useful but we are all much more than what can be conveyed by a 'label'.

 on: October 10, 2018, 01:16:30 PM 
Started by Anne56 - Last post by Anne56
Thanks Roger.

 on: October 09, 2018, 01:28:55 PM 
Started by Anne56 - Last post by roger
Hi, Anne, I've just been going through my files. Re melatonin, this approach might suit you better - http://www.greenmedinfo.com/blog/food-sourced-melatonin-provides-natural-way-help-sleep

and I think this is a good piece re sleep in general - http://www.greenmedinfo.com/blog/sleep-why-you-need-it-and-how-get-it-2

 on: October 08, 2018, 04:13:16 PM 
Started by Anne56 - Last post by roger
The thing is, Anne, nothing works for everyone so it's a good idea to try ALL the natural options before turning to pharmaceuticals IMHO. I hope the CD you've got helps...sometimes you have to use these things daily for a week or so before you feel a benefit.  fingerscrossed

 on: October 08, 2018, 04:09:10 PM 
Started by Anne56 - Last post by Anne56
Thanks so much for your comments. I use lavender oil. Melatonin made me feel very depressed and I haven't used the other things you mention. I think I've got a CD with a body scan on it that I'm going to try.

 on: October 08, 2018, 02:44:21 PM 
Started by Anne56 - Last post by agapanthus
When you get the thyroid tests done Anne, there a couple of UK Thyroid support charities who have forums online where people who have more experience in such things share their thoughts on how you might get improvement if you need to. The NHS no longer tests FT3 and this is sometimes on the low side, and maybe the TSH is too high but anyway, you need to get the tests done first to see what they have to say.

 Some people get on OK with the standard medication, Thyroxine, but some don't. There are other options but unfortunately many are having to self treat as the NHS is so unhelpful with the other treatments. The people on the forums will also advise on which supplements need to be optimal for helping your thyroid to be optimal (ie it's not just about iodine....).
I think Thyroid Patient Advocacy is a good place to try anyway if you google them. They have pages of info plus the forum.

 on: October 08, 2018, 01:15:21 PM 
Started by Anne56 - Last post by roger
Hi Anne,

Iím really pleased that you got on well with her Ė thatís half the battle! And I was very impressed by her blood test reference range comments. Not so keen on her salt with added iodine thought though. Certainly, most of us are low on iodine but table salt is bad whether it has iodine added or not. Salt should be unprocessed and iodine can be easily supplemented with a good quality Lugolís.

Re sleep - have you tried things like lavender essential oil, melatonin, GABA and lithium orotate?

Re the breathworks tracks - they ARE good IMO, but nothing works well for everyone. If youíd like to try them without spending money, email me.

 on: October 08, 2018, 12:52:21 PM 
Started by Anne56 - Last post by Anne56
Thank you Roger and TJ.
I went to see the consultant and it was worth it. She agreed with me about the gp blood tests. She said that often gps say that the test is in the 'normal' range but if she looked at it she would disagree! She recommended that I get an online blood test for thyroid. She said that their is an iodine deficiency epidemic in this country. SHe recommended some multivitamins and minerals which she said are the best (and not too expensive either). She also told me to use salt with iodine in it. You can get it in Sainsburys. It seems it is very easy to overdose on iodine. SHe also gave me some tips on how to improve my sleep and recommended I go back on Nortriptyline. I have been taking it for about three nights and this morning I felt terrible, really groggy and brain fog. I have since read online that it should be taken five hours before bed so will try that tonight. Roger - like you I don't like taking medication but am so fed up with not getting to sleep!! I think I'll download the bodyscan from breathworks that you recommend. The consultant said that when I get the blood test results back, I should go to my gp and if she won't address any issues to go back to her (or any other specialist).

She did say that what she advises is no 'magic wand' but if it improves my symptoms by even 20 per cent, it will be worth it. It did help in that I felt I was being listened to and am hoping that her advice gives me some relief. What I did like is that she said she believes in treating the whole person and not just one symptom. I know Dr Myhill offers blood tests but it is so expensive so I decided not to go ahead. I am just hoping that this thyroid test shows c017 up something.

 on: October 08, 2018, 12:31:33 PM 
Started by Anne56 - Last post by TJ
I can empathise with you Anne.  My only treatment now is a 6monthly pain clinic appointment.  At my last appointment the pain consultant asked me what was happening with the CFS clinic.  I told him they discharged me a year ago and he looked really annoyed.  In fact my discharge letter reads like have sailed through treatment with flying colours when in fact I did not respond to 'their' treatment plan which is psychologically based.  In fact the last 6 months of therapy at the clinic was merely a catch-up session on what I had been doing.  In fact I often rescheduled appointments as I was to unwell to leave my apartment which you would think would cause alarm bells but alas no.

I am seriously contemplating seeing a rheumatologist privately.  I have new unrelated symptoms which point to Sjogren's syndrome.  It is an auto-immune disease and interestingly people with this usually are usually labelled with CFS for up to 5 years prior to diagnosis.

Good luck on your new journey!

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