Dare I add a modicum of realism here - Fibromyalgia Acti...

Fibromyalgia Action UK

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Dare I add a modicum of realism here

18 Replies

I am NOT against supplements if we have been advised them by our GPs or tests show us to be lacking in something.... But if you look around there are millions of people out there without fibro whose diets are probably a lot worse than ours and they are having a much healthier time than we are with our fibro ... By all means take every supplement under the sun and bathe in whatever you want but please don't get disappointed if after all this you are left with empty pockets and still in pain with fibro... We are told time and again That morphine based meds do not help with fibro but still drs prescribe them and we take them .. I was made very ill by oromorph and also OxyContin . I have found that changing my diet for a more healthy one and taking the few meds that agree with me much more effective . I have gone from 14 tablets a day for fibro down to 4 plus the pain killers for my arthritis....if my GP told me to take a supplement that would help I would... but the only thing I was advised to take ....cod liver oil supplements set my ibs off to an amazing degree I stopped them and my ibs calmed down within 48 hours .. My thoughts ... What a waste of £9.99 ...

If all these supplements were so good surely people would not be on morphine still or other strong meds

Feel free to disagree

VG x

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18 Replies
ladymoth profile image
ladymoth

I absolutely agree VG - and as you said what suits one person may be poison to another. I guess when we're in a lot of pain, it's very tempting to try all sorts of alternative therapies. Over the years, I've spent a lot of money on supplements and holistic therapies - all to no avail.

I think that having the sole attention of a nice kind therapist, as with massage or acupuncture for instance, can make you feel a lot better in the short term, and there's nothing wrong with that, providing you can afford it.

The best way to help yourself stay in optimum condition is a balanced diet, with maybe one good quality multivitamin each day to be absolutely sure.

Hot baths and showers are brilliant, with or without exotic salts, and that's about all we can do to keep ourselves reasonably functional. I'm not being negative - just realistic!

Unfortunately, there are so many out there who are very happy to take money from vulnerable people by selling products which are of no proven use whatsoever.

Research scientists are not fools - if they found a supplement or therapy that worked, they would be pushing it to doctors all over the world - and making a huge fortune from it.

There are one or two promising things being developed, so hold on tight there, and let's see what happens - hopefully, something very soon, and not too expensive!

Moffy x

joflo profile image
joflo

Can people not just write a blog in hope that it might help someone even if its just 1 person, I thought that was its purpose ! I've only ever wrote a few and when I have it's been to share what I've tried ! I'm not telling people to go out and spend lots of money on supplements or even to try them ! We are all different yes I know , as a volunteer why go out of your way to dismiss and disagree then write a new blog about it!

I certainly don't disagree with you on your name choice

Umm you write your view I write mine I am not criticising your blog far from it I said at the end of mine feel free to disagree... I also said I am NOT against supplements .

Thank you for your reply

VG x

ladymoth profile image
ladymoth

We're all entitled to our opinions here, and please don't forget that it's perfectly alright to agree to disagree.

Healthy debate is a good thing, so long as we resist the temptation to 'get one over ' on others. We're all different, and most of us will think that our own way is the best.

I'm always convinced that I'm right - though secretly I'm afraid that sometimes I might not be!

If one person says 'black' and another says 'white', you can bet your life that most people will go for grey, anyway, so don't let's worry about it.

I won't ever go out of my way to disagree with anyone, but I will say what I think - and they have an absolute right to tell me if they think I'm wrong.

There's nothing personal in this, so lets continue an interesting debate without anyone being offended or taking sides - we all know from experience that this would be unpleasant.

Moffy x

Mdaisy profile image
Mdaisy

Hello Everyone,

I personally found Epsom salts in the bath helped the aches and pains, however I have bought supplements like 5htp taken which had little effect. So as people have mentioned what works for one may not for another.

I think the advice given by Lindsey Middlemiss on the website may be helpful about supplements & diet;

'Nutritional or herbal supplements are often promoted to people with Fibro. There is limited research evidence for their use, but some people find them helpful.

It is worth using a few common-sense rules when considering supplements. Always check with your doctor(s) and pharmacist before starting something new - supplements can have side effects just like medications do and some supplements can interact with medications, food or other conditions. Make sure that supplements are helping and that you are not wasting your money - start supplements one at a time so that you can tell which one helps and which one gives you side effects and if you think a supplement may be helping, try coming off it to check - you may just be having a good month anyway. Beware of anything that says it can cure Fibro - it is likely a scam.

Vitamin and mineral supplements have the best effect when you really need them. An all round vitamin and mineral supplement may be helpful to compensate for lack of nutrients in diet, but there are a couple that should be considered more closely'

fibroaction.org/Articles/Be...

Vitamin D deficiency & low levels of magnesium are then discussed in depth if you wish to read and the encouragement of a healthy diet if possible.

So I personally think that we are all individual and may all find benefit from various supplements that others may not. I think if we all consider the advice above and try one supplement at a time (after discussion with the Doctor) whilst maintaining a healthy diet where possible. We can then decide whether something is helping or whether indeed it is a waste of money.

Emma

joflo profile image
joflo

Maybe Im being a bit over sensitive Moffy , just it seems people get shot down quite quickly on here ! I really thought that this site was to make friends , share experiences and to support one another. Why should it become debate when someone has tried something and its helped them? Yes I asked if anyone had tried taking magnesium, I wasn't asking if I should ! Reading over a few different blogs I think there are some people who go out of their way to make others feel uncomfortable x

ladymoth profile image
ladymoth in reply to joflo

Hi joflo - you actually did ask what people thought and what their experiences have been -you will always get some people who think differently. We are all friends here, but friends disagree sometimes.

Personally if someone could give me a good reason to hang upside down from a tree, I would do it because I am often desperate for some relief!

Not every poster has the gift of words, and might sometimes cause offence quite inadvertently. We are all in pain, too - and I have occasionally caught myself being a bit snappy just because of that.

I would never deliberately bite someone's head off, but have more than once deleted my own post because in hindsight it looked as though I'm a right old crosspatch!

We have great days on this site, and we also have some not-so-good, just like any community, and as friends we need to be tolerant of of each other.

That's not to say that we don't occasionally get posts which are seriously disagreeable - we have ways of dealing with those!

Anyway, no harm done, and I enjoy a good debate - maybe it's a flaw in my character, but I'm an old lady - I'm allowed to be difficult :)

Moffy x

Fibrofoggiest profile image
Fibrofoggiest

I think everyone has the right to their own opinion and if they want to blow all their money on whatever floats their boat, then so be it. I have to cut my cloth according to my means, so I go with what my GP recommends and that as yet has not included supplements.

I do think that this should continue as a reasoned debate without any form of criticism being meant or taken,

Yours hopefully. Foggy x

Fibrofoggiest profile image
Fibrofoggiest

I think everyone has the right to their own opinion and if they want to blow all their money on whatever floats their boat, then so be it. I have to cut my cloth according to my means, so I go with what my GP recommends and that as yet has not included supplements.

I do think that this should continue as a reasoned debate without any form of criticism being meant or taken,

Yours hopefully. Foggy x

Fibrofoggiest profile image
Fibrofoggiest

I think everyone has the right to their own opinion and if they want to blow all their money on whatever floats their boat, then so be it. I have to cut my cloth according to my means, so I go with what my GP recommends and that as yet has not included supplements.

I do think that this should continue as a reasoned debate without any form of criticism being meant or taken,

Yours hopefully. Foggy x

Fibrofoggiest profile image
Fibrofoggiest

Whoops........sorry. x

Personally I have never shot anyone down on here my main concern is

A.. Taking supplements you don't need... Unless recommended by your GP.. Rheumy etc

B.. The expense... I admit to spending hundreds of pounds on private massages and osteopath and supplements over the years and the relief has never lasted more than three days and when I think of the things I could have spent the money on ..... Bahhhh

And there may be people who go out of their way to make people feel uncomfortableon here but my posts are always done from concern .... Or my stupid posts which are intended for anyone to join in and be silly

VG x

ladymoth profile image
ladymoth

Yes, the fantasy posts are the best medicine of all as far as I'm concerned - how else would we get a chance to go up in Prince Harry's helicopter? :D

I have also spent a lot on various therapies from magnetic bracelets through to Reiki. the only thing that ever helped me a bit was cod liver oil, and even that disagrees with a lot of people!

As volunteers here, VG and I feel we ought to look out for people, though obviously we don't have any say in what they decide to do. Sometimes it can cause a disagreement, but that's OK - we're only human!

Moffy x

Fibrofoggiest profile image
Fibrofoggiest

Did anyone mention Prince Harry and helicopters? Foggy gets in an orderly line x

Ohh yes he likes blondes too ;)

joflo profile image
joflo

Ok ladies , so if this a debate I will carry on taking my magnesium supplements for the next week or two and will repost to how it's going , I've only had fibro for 8 years and understand that's there are members who have had it a lot longer, with more life experience of fibro, (Which was one of the reasons why I joined the group, )I appreciate any concern and apologise if I've come across as pushing my views on to others this wasn't my intention Jo x

No offence taken jo I truly only post things like this out of concern and I said please feel free to disagree... Will look forward to hearing how you get on with them ...

VG x

Devonlady profile image
Devonlady

Personally I have tried lots of suppliments and various complementary therapies, (I am a trained therapist myself). I trained as a therapist because of my fibro as wanted to know more about how things work before embarking on these things.

As a patient I have found some to be really relaxing which in itself helps fibro but not long lasting. As a therapist I have found some patients really get a lot of help from therapies, what part of this is the therapy and what is placibo I am not sure but if it helps it helps placibo or not. As for suppliment I have tried many on advise of doctors and not andso far not found anything that makes me want to stay on them a

s they are still like meds can have side effects or affect your usual meds.

My own personal stand is these days is that I take nothing unless the benefits are really visible to me as spending the money on a treat or chocolate makes me feel good to and so much nicer and cheaper ;-)

I as a therapist would say to everyone. Research, try if you wish, keep an open mind and if, in your own heart and mind you feel it helps then go for it. Do not trust any therapist that says they can cure you and you should all be fine.

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