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The UKFibromyalgia Forums • View topic - Please Try This for a month and let me know how you get on!



Please Try This for a month and let me know how you get on!

All your questions and experiences of medication and treatments on the NHS or Private Healthcare.

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Please Try This for a month and let me know how you get on!

Postby Jimbo1968 » Mon Jan 04, 2016 8:22 pm

Sorry not looking to reinvent the wheel here and what i'm going to suggest may be common knowledge already.

A quick summary I had the fibro pains and other symptoms first, however my diarrhea once it kicked off took over my life and I looked for help anywhere I could get it. At the same time I was having a severe bout of Psorises.

Firstly I know there is meant to be a link between Fibro & IBS but I seriously believe IBS-D doesn't exist , its a physical disorder that is not being diagnosed correctly (One for another thread I feel).

My bowel problems which are not yet defined are not IBS as I have bowel inflammation hence I have some kind of IBD.

I was told that the most important vitamins and minerals to take for any form of IBD were vitamin D3 , Magnesium and B12, but there is a problem here, if you take theses in normal tablet form they will not be absorbed properly if you have a problem with malabsorption.

I quickly found Vitamin D3 5000iu in liquid form. within a couple of weeks my psoriasis was 80% better and is still progressing. Then came the B12 in oral spray form from a famous health food retailer in uk. Before I started taking this the brain fog was shocking, I could hardly read the ingredients on food packets without frustration, I couldn't stay awake, close my eyes even at work and I was off asleep. I would get so dizzy and disorientated , yet my blood test suggested that my red blood cells were just within acceptable parameters, well I never thought id regain energy and clarity of mind again but I have.

Finally the magnesium which is very good for pains. Bear in mind that I have it on good information that the standard blood test for magnesium doesn't indicate low , just critically low so don't accept your blood test results as being indicative of all ok. Magnesium is problematic in most of its forms as it acts as a laxative so no good at all if you suffer from diarrhea. However in its 'fully chelated' form it will not effect your bowels. I haven't found it in shops but is available online, I can give you the make if required. This will help relax your muscles and sooth pains.

To recap:-
Vitamin D3 5000iu in either liquid form or lingual tablets.. (only danger of toxicity is beyond 20000iu)
Vitamin B12 1200mcg in either spray form or some form of lingual tablets.
Fully Chelated Magnesium tablets (initial dose 400mg but reduce after few weeks), Can also use magnesium spray on skin instead

please note I'm an adult male 5ft 11 tall and 85kg in weight so you may need to adjust dose accordingly. try it for a month and see how you get on, and sorry if you all knew this already . Jim
Last edited by FluppyPuffy on Tue Jan 05, 2016 12:54 pm, edited 1 time in total.
Reason: Made paragraphs clearer for easier reading.
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Re: Please Try This for a month and let me know how you get

Postby AlisonL » Mon Jan 04, 2016 10:50 pm

Or get your magnesium from epsom salt baths. Huge 5 kg tubs delivered to your door are available on ebay etc
The other thing people might like to try for IBS is the FODMAP diet - can be supported by an NHS dietician if your GP refers you, this way you get some very helpful booklets published by St Thomas's/Kings College that not only explain how to eliminate foods and reintroduce them, but also list loads of easily obtainable supermarket foods. It worked for me - reducing gut inflammation seems to lead to reduced inflammation overall. Also might improve serotonin production?
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Re: Please Try This for a month and let me know how you get

Postby Jimbo1968 » Tue Jan 05, 2016 12:10 am

While the arguement states that gut serotonin doesn't relate to brain serotonin. I don't agree, when I started with gut problems I ended up with hypertension and serious depression. Having never needed regular medication before I ended up on propranolol and more importantly , citalopram which is a Selective serotonin re-uptake inhibitor. For me the evidence speaks for itself.
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Re: Please Try This for a month and let me know how you get

Postby Lk6 » Tue Jan 05, 2016 12:46 pm

I agree with so much of what you have written as I am sure my fibromyalgia manifested after a serious bout of either food poisoning or a really bad gastric infection that had me hospitalised for two weeks and left me I so much pain all over my body, this pain has never really gone away and other symptoms which go hand in hand with fibromyalgia that I was eventually diagnosed with after several years.

I have had more success with supplements helping to relieve the inflammation magnesium co Enzyme Q10 fish oil vitamin D and B 12, I also try as much as possible to stick to a Gluten, Lactose and Sugar free diet as much as possible and if I go off it or run out of supplements I pay the price. I have also noticed that every time I get a fibromyalgia flare up I seems to start with bad stomach symptoms reflux nausea and loose bowel movements, I am just wondering how many other people have IBD's and gastric reflux and if ine causes the other the medications prescribed for fibromyalgia ( Gabapentin Lyrica and Cymbalta (duloxetine) have not worked for me and have given me some terrible allergic reactions I am now on Doxepin OxyContin and half a oxazepam at night to help me get to sleep.

When I get these irritable bowel symptoms I always tend to get really agitated anxious an nervous it is one of the worst symptoms of fibryalgia for me as there seems to be nothing I can do to stop these feelings I feel like I want to get out of my skin and am tempted to take an extra half of this oxazepam to calm these feelings down but don't know if it will work and also don't want to start mucking up my meds and running out before they are due. All the best to you Jim for sharing your thoughts and what works for you, if only the medical profession would do a bit more research into this illness as some of the symptoms are at times not bearable.
Last edited by FluppyPuffy on Tue Jan 05, 2016 12:58 pm, edited 1 time in total.
Reason: Split large post into small paragraphs for easier reading.
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Re: Please Try This for a month and let me know how you get

Postby FluppyPuffy » Tue Jan 05, 2016 1:18 pm

I've moved this into this board as it's more suitable for the subject of the topic xx

Interesting thoughts and ideas Jimbo, and they may well have some bearing on FM and other associated issues. Unfortunately, much, much research is needed into all the areas before a definite yay or nay can be given. The various people that have found adding supplements to their treatment does provide quite a lot of anecdotal evidence in support of some of the possibilities tho.

It's not something I will be trying tho, unfortunately I suffer with extreme reactions to supplements etc so I have to make sure that what I need comes from what I eat. If I were to add supplements such as the ones you have mentioned, the reactions I experience have been known to leave me in need of hospital attention.


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Re: Please Try This for a month and let me know how you get

Postby Jimbo1968 » Tue Jan 05, 2016 2:48 pm

LK6 (sorry don't know your name). It's a shame that words alone cannot relay the different and weird pains we feel. In a way you e summed up 85% if not more of my experience . There is a theory out there and I'll have to read it again before I go over quoting it , that basically states that what we are going through is an allergic response to damage to our guts mast cells. ill see if I can find the article but basically it suggests trying to treat the problem with H1 anti histamines like Claritin and h2 antagonists like ranitidine. I've not tried this as I don't get on well with anti acid meds
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Re: Please Try This for a month and let me know how you get

Postby chrissey » Fri Apr 22, 2016 10:53 pm

hi i was interested in your post as a programme on chan 5 last night (which i missed and a friend told me of) had a chap on who was in great pain and went to poland to see a doctor who took him off his meds and treated him with vitamins and weeks latter he was greatly improved but unfortunatly she couldnt remember the vits he took, do you still feel better as the brain fog and tiredness is over taking my life, thanks
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Re: Please Try This for a month and let me know how you get

Postby snowwhyte » Sat Jun 22, 2019 12:33 pm

I haven't been on this site in years because I have been mostly pain free. I was diagnosed with fibro about five years ago. I was one of those people who tried all kinds of vitamins because I didn't want to take medication. I tried vit D, magnesium etc but it wasn't until I started taking high dose sublingual B12 that I finally got better. As long as I keep taking the B12 I've mostly been ok. i currently take B12, vit D and an algae supplement since I'm vegan and won't take fish oil. I came to the conclusion that I was misdiagnosed and have a B12 deficiency.
The problem is my symptoms have started to return. I have loose stools and nausea so I might not be absorbing vitamins properly. I am not sleeping well, I have brain fog and the pain is starting to return.
This post has made me wonder if maybe I need to try vitamin D spray and magnesium oil.
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Re: Please Try This for a month and let me know how you get

Postby *Lisa* » Mon Jun 24, 2019 9:59 am

personally I would advise you to see your doctor before trying any other vitamins just in case there is something underlying going on as a precaution and chat to them about adding extra vitamin supplements to your diet.
As a Public Moderator & Admin of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia...Lisa
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Re: Please Try This for a month and let me know how you get

Postby snowwhyte » Mon Jun 24, 2019 2:54 pm

A doctor's visit might be sensible. I am a bit negative towards them since I think they misdiagnosed me in the first place and it was only due to me trying B12 that I finally got better. It probably wouldn't hurt to get a blood test though.
My issues might be diet related. I haven't really been eating properly or taking good care of myself. It's a three week wait for a doctor's appointment so I could see if improving my diet helps things and cancel the appointment If i improve.
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