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Author Topic: Acupuncture?  (Read 589 times)
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Anne56
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« on: September 05, 2018, 05:23:41 PM »

Hi everyone,

I have just finished five sessions of acupuncture and I can't say that I have noticed any improvement in any of my symptoms. The therapist said it would take five sessions to see the effect. I was going to continue with them once a month but have decided against this. The sessions were expensive and I didn't want to waste any more money.

I am now trying CBD oil for a few months to see if that makes any difference. I am sooooo fed up of trying different therapies/supplements.  38
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TJ
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« Reply #1 on: September 05, 2018, 05:39:05 PM »

Hi Anne,

I had 2 sessions on the NHS with no effect so stopped the further sessions.  CBD oil didn't do anything either.   I have stopped all my supplements except Vitamin D as they were not helping.  I am really fed up with all to be honest.

Talen
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roger
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« Reply #2 on: September 05, 2018, 05:56:51 PM »

Hi Anne & TJ,

I just wanted to say I understand and totally sympathise with how youíre both feeling right now Ė I was there for several years. But please donít lose hope because without hope you have nowhere to go.

Fundamentally, I think my answer was always within me, and the years of looking on the outside werenít really constructive Ė I did get SOME help from the outside and that help probably helped me enough to carry on. Whether looking within will be your answer, I donít know. But it might be.

Whatever I wish you both the very best of luck on your search.
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TJ
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« Reply #3 on: September 06, 2018, 06:51:48 PM »

Thanks for your kind words Roger.
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agapanthus
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« Reply #4 on: September 06, 2018, 07:08:15 PM »

I did 18 months, weekly of acupuncture and I suspect that the only reason it seemed to help were that I really liked the acupuncturist and had been drawn to it as a therapy and did think it would work. I think it did do something for me actually, but then I plateaud and should have stopped then.

As for CBD oil, well I know it really does help some people with pain, but no one thing works for everyone. I tried LDN but could not tolerate it internally, and I don't think the transdermal cream I was sold instead worked in the same way.

I am overall better than I was some years back as I have found out things about most of my worst symptoms and pretty well eliminated them by various methods most of which I have stumbled on (yes, mostly supplements or that kind of approach that worked for me). That said, I still have limited energy, and regularly push myself too much, but at least I don't have so many of the other symptoms which is great, as my mood is better as a result.
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Anne56
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« Reply #5 on: September 08, 2018, 04:33:14 PM »

Thank you so much for your replies. I am now considering going to the see the consultant who runs the CFS clinic where I was diagnosed. She has a private practice and has a special interest in CFS/ME. I'm thinking she may be able to do more sensitive tests than they offer on the NHS.

I am feeling crap today and the main thing I have noticed (for years in fact) is that my blood sugar levels drop suddenly after just two hours. After I eat something (healthy) eventually I begin feeling a bit better although still drained. This has been a constant over the years. I often think that there is something that the NHS has missed. Obviously there is something in my body that is not working correctly.

i just feel that I've not been tested thoroughly enough. Does anyone else feel this way?

I'm really fed up today.   cry Am so tired of this damned condition!! There's so much I want to do. I've been trying for the past few years to get a routine in place of yoga and meditation and even that eludes me. How do ny of us stay motivated when we feel so crap?!!  38
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roger
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« Reply #6 on: September 08, 2018, 05:07:12 PM »

Hi Anne, thatís interesting and potentially exciting. Itíll be interesting to see if she can offer the type of tests that Sarah Myhill does. If you do decide to see her we'd love to hear how you get on. Good luck  fingerscrossed

As a child I got horribly bad tempered then ill if I didnít eat very regularly and I still do Ė my mum was the same. It was decided that that was just how I was made and that nothing could be done about it. Mind you that was sixty plus years ago. Since then Iíve controlled it without difficulty simply by having a small snack every couple of hours. Incidentally, even if you didnít eat something when you started to feel unwell, your liver would soon come to the rescue by releasing some of its glycogen reserves as sugar. But itís best to eat before that becomes necessary. Iíve found a couple of pitted dried dates does the trick Ė sweet but healthy! Also, I've found getting my body used to using saturated fat for energy very helpful. Now, if I have a high fat breakfast I can go for five or six hours without problems.

Tell you what, Anne Ė we all need a purpose to get well. The things you want to do could be your purpose, and seeing yourself doing these things would be helpful. Re meditation Ė maybe you could start with just five minutes a day then slowly build up Ė even five minutes would be beneficial.

Keeping motivated when you feel crap? KNOW that youíll find a way. Thatís what got me there.
« Last Edit: September 08, 2018, 05:54:54 PM by roger » Logged

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TJ
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« Reply #7 on: October 08, 2018, 12:31:33 PM »

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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Anne56
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« Reply #8 on: October 08, 2018, 12:52:21 PM »

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.
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roger
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« Reply #9 on: October 08, 2018, 01:15:21 PM »

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.
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agapanthus
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« Reply #10 on: October 08, 2018, 02:44:21 PM »

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.
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Anne56
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« Reply #11 on: October 08, 2018, 04:09:10 PM »

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.
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roger
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« Reply #12 on: October 08, 2018, 04:13:16 PM »

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
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roger
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« Reply #13 on: October 09, 2018, 01:28:55 PM »

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

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Anne56
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« Reply #14 on: October 10, 2018, 01:16:30 PM »

Thanks Roger.
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