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CFS/ME/IBS - feeling a bit better. Lovely but why?

(23 Posts)
Katymac Fri 30-Dec-16 21:22:26

I am supplementing like mad and having weekly acupuncture

My tummy is less bloated & I have much less pain - my bones, joints & muscles are less painful, emotionally I am more stable (actually feeling a bit more depressed but it's less changeable/fluctuating)

So is it the acupuncture? The supplements? A natural hiatus or phase? Or a placebo?

Not altogether sure I care but it's quite lovely, oh & I also lost 10lbs

realistically only time will tell i guess but itks fascinating after decades of ill health!!

Clankboing Fri 30-Dec-16 21:59:53

Have your supplements included iron? I improved after having iron and having my periods stopped. The gynae who sorted it said that occasionally she has improved ME or Fibromyalgia symptoms through increasing via a combination of stopping or lightening periods and patients increasing iron. I certainly felt better. Glad for you!

Clankboing Fri 30-Dec-16 22:00:52

Oh and I also thought accupuncture was good!!

Katymac Fri 30-Dec-16 22:14:00

Iron folic acid magnesium zinc potassium calcium vitamin D and B12

it's very odd feeling this way and I am scared it's going to end abruptly

Clankboing Fri 30-Dec-16 23:02:33

Just keep doing what you are doing. I stopped supplements and feel rough again.

sweetkitty Fri 30-Dec-16 23:04:47

I'm currently taking a multivit with iron, calcium, magnesium, vitB12, ribose and about to start SAM-e. Still waiting to feel better ...

ShotgunNotDoingThePans Fri 30-Dec-16 23:20:43

Where the supplements prescribed?

Katymac Sat 31-Dec-16 08:38:26

apart from the magnesiumn calcium and potassium they were all diagnosed by a blood test at the gp

however i am taking nonprescription versions as the original ones given to me by the gp donkt agree with my ibs i he knows what i am taking and agreed to the extra ones (althoughn apparentlyn they will do nothing)

zen1 Sat 31-Dec-16 08:43:53

I remember one of your threads was about horrendous mouth ulcers. Have the supplements had a positive effect on these?

Katymac Sat 31-Dec-16 09:03:56

It's taken time but yes they have gone almost completely - I had a smallattack at Christmas(I guess I ate something I shouldn't) but they weren't nearly as deep or as long lasting as previously

Soone minor attack in 18m & based on when started each supplement I would suggest it's either B12 or more probably Zinc (gluconate - the zinc sulphate prescribed upset my tummy terribly)

Manumission Sat 31-Dec-16 09:06:07

What so you mean "having your periods stopped" @clank?

Manumission Sat 31-Dec-16 09:13:50

Sorry that sounded incredibly nosey. Always interesting to know what helps.

ASpiderInTheManger Sat 31-Dec-16 09:46:22

KatyMac, apologies if this isn't relevant to you at all but have you been tested for coeliac disease? Only some of your symptoms jumped out at me as things I was experiencing due to coeliac - mouth sores, general pain, iron defiency and ibs.

Katymac Sat 31-Dec-16 14:56:52

Thanks - yes I have had 2 biopsies & 3 blood tests all clear (sadly as it would have been a concrete diagnosis I could have worked on)

Clankboing Sun 01-Jan-17 09:46:09

Hi Manumission. The gynae advised that my periods were stopped or slowed down as they were ridiculously heavy. I had a mirena coil which did help with tiredness etc enormously. Unfortunately it kept digging in to me so had it taken out. I am now waiting for appt ready for ablation to stop periods. Some women lose so much blood that by the time they. are in their 40s they are seriously anaemic and run down.

PootlewasthebestFlump Sun 01-Jan-17 09:53:36

Are you sure you're not B12 deficient? My symptoms have improved since I was diagnosed and treated (although I'm not on a high enough dose to really feel well). Even a slight B12 increase can improve how you're feeling.

Katymac Sun 01-Jan-17 19:32:20

Was that to me pootle? Or one of the others?

PootlewasthebestFlump Mon 02-Jan-17 13:07:31

Oh yes, to you :-)

EstelleRoberts Mon 02-Jan-17 13:17:53

Congratulations on feeling so much better! I have CFS/ME, but am 95% recovered. I think a large part of my recovery has been due to correcting deficiencies and having a shed load of acupuncture. The acupuncture has done far more than anything else to improve my health. For me, the key was doing lots of things that would hopefully improve my health all at once, rather than in succession, as I had been doing before.

Long may your recovery continue.

Katymac Mon 02-Jan-17 15:23:45

I did say I was B12 deficient - I have been treating the b12 & D fairly agressively

Which along with the acupuncture seems to be working

I know what you mean estelle all at once is better I guess

zen1 Mon 02-Jan-17 17:04:16

Katy, what are you treating the B12 def with and how long had you been taking it before you noticed an improvement? My GP said I'm B12 deficient, and I bought a sublingual supplement which I've used for a month or so, but I'm still knackered a lot of the time.

PootlewasthebestFlump Mon 02-Jan-17 17:24:44

B12 jabs should be given if you're deficient and I also top up with sublinguals.

There is some research suggesting sublinguals to be as effective but this is questionable so UK guidelines suggest jabs still, starting with loading doses.

Sorry I didn't see where you said you were deficient Katymac. If you're deficient your GP should be treating according to guidelines not recommending supplements.

Katymac Mon 02-Jan-17 20:51:03

I initially had loading injections in the autumn of 2014; I have since been diagnosed with the other deficiencies so we decided to try the loading doses againm

I had one a week for 6 weeks back then and I am 5 weeks into the next batch. Whether we return to 12 Weekly or if we decide on more frequently is to be seen

But I do think it's a combination that is more effective than the B12 by itself

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