i have have suffered so much over the years with fibro yes full blown fibro???? i really know what it feels like ive been so down with it over the years cant do this cant do that an ive hated it so much and i really want to get better i really do ??? so i am rather p***** off that when i mention something that makes a difference no body wants to know 2 feedback MMMMMMMMMMMMMMMMM they do help????? if i feel better in such a short time then there must be one? other person that dose on this site surely ???????i thought we was here to help each other? not just to be ignored ????a lot of us are very worried on here whats going to happen to to us? we ave got a long Fight a head of us money wise but a lot of you ave closed the door on us because your alright your money is sorted but WHAT about us???????? you have closed the door?I don't Wright a lot but i read a lot and i hear people crying out for help but you just turn the page because your fed up of hearing it and your money is sorted !!!!!.SO what about US there aboutt7/8 of you that are alright ?an just email each other you really dont give atoss an it shows ????This is one of the very worried people that are shiting it trying to make em self feel better because we know we are fighting n will av F*** all if we dont do sometthing about it an maybe one day we may jump off that that bridge!!!!!!! so god bless you that are alright dont think of us that are NOT I dont care if your Angry if i feel like this then im not the only one .
surely i cant be the only person that... - Fibromyalgia Acti...
surely i cant be the only person that these tablets have helped
No, you're not the only one. (((((HUGS))))) I've had this cursed illness for 30+ yrs. It just seems to get worse & worse. Fibro isn't considered disabling by itself here in Australia. So help of any type is in short supply.
My husband is in the process of winding up a business & we're doing it hand-to-mouth. We don't qualify for any govt assistance & never will even if we end up homeless in the process. The stress has added to my pain levels enormously of course. I'm finding it very difficult to cope right now.
Hi, Chicme,
I think it is great that these tablets have helped you.
I do think however, you need to give people a little more time to respond, not everyone can get online everyday. I hope that things continue to get better, it gives us all hope!
A lot of people have to be careful what complementary remedies they take, as they may have other conditions and medications that stop them from taking them, Glucosamine Sulphate is one, not good for high blood pressure, or allergies to shellfish, although the vegetarian version may be of use.
Also we are all different in our needs and symptoms. It is interesting what you said about anaemia, I have this but not from iron, but from folic acid deficiency, so I have to be precribed it by the doctor.
Thank you for sharing your news with us, and try not to be upset if you do not get an answer immediately, I for one suffer from depression, and am not always up to joining in, but I value stories like yours!
Thank you again,
Cazx
Hi Caz, just saw that you put Glucosamine can affect High Blood Pressure. Would you Adam and Eve it I just started taking these a few weeks ago, after someone said try them. Bet I will have to get GP to check BP now. Perhaps we will feel better when the weather warms up in a few weeks, feels like a never ending winter which makes FM so much worse. BIG HUGS to everyone. x
Hi LaurieLee,
I used to be a manager of a large health store, and we constantly were trained and updated on interactions and new products, very in depth, it is really important you check any complementary products with your doctor or pharmacist, as some interactions can be quite dangerous, I particularly remember the Glucosamine!
It helps with pain as it is also a natural anti inflammatory, as are many other products.
In the larger stores you can often use a free computer to check for uses and interactions.
The best way to learn is to ask a member of staff, as they can find the info for you.
I Hope you can continue with your tablets, as I personally have seen amazing results for some people, although they do not suit everybody of course.
Best wishes to you,
Cazx
I tried Gluc Sulph and it made me 100 times worse!!! XX
What is the medicine that helped you?
Hi Chicme,
I don't get on here much and like you i'm cursed with full blown Fibro and CFS/ME.
Life is very hard for us and i don't claim DLA as im a carer for my son who has Aspergers syndrome!. I thought about how id get on with claiming DLA myself and having someone else get the carers allowance butt i belong to a site on FB that has many people loosing their DLA and have run a petition on it several months back and was looking to take another angle if people wanted to get involved!. They all liked the idea but noone came forward with the info or offer of info i would need apart from one lady.
I have not seen you post on the tablets/medication that has helped you so much and would be very much INTERESTED in it!
so please can you share this info again ?
I think the other problem definately for me is knowing how to use this site and how to find or see this information? i'm totally computer iliterate!! lol
Also iv'e not connected or made friends on this site with anyone....
Hope you feel better after your rant!! 
Tracy
thanks LOVE ITS GLUCOSAMINE SULPHATE 1500MG AND b12 1000MG .I KNOW IM SLOW ON THE LAPTOP WHEN WRITING .
thank you! i have used magnesium and B12 before but after i ran out i did not get round to getting more ...not the cheapest things in the world but may get them going again as i think they did make a diff if only a little..but needed more time on them x
I need to get myself some B12, as I'm giving this a shot. I'll happily try anything that has worked for someone else! I try to steer clear of the codeine-based meds I've been prescribed when I'm doing clinical work (they don't mix well with scalpels, I find), so if something less sleep-inducing gives me any assistance, I'm willing to give it a try.
Thanks for the info! xx
Hi chicme
I am sorry you feel this way.... but have you forgotten when you were at your lowest point everyone was here for you then.. Supporting you sending you messages of support ... Unfortunately your post about supplements didnt get many responses ... Maybe that was because of oh I can think of three things off the top of my head
A) it's Easter and lots of people were just popping in and out quickly
B) having not tried or not being able to afford supplements its hard to post anything other than so glad it's working for you... And unfortunately with limited people around perhaps most chose to post to people who were posting very upset as that's what everyone does on here the first thought is to post to those who are distressed.
C) I personally have had Easter , relatives to visit and my sons birthday so I have been relying messages to say please we have an upset person on the forum can you help ... Which is what I rush to do .... As soon as I saw this post and saw you were upset I rushed to write..
Plus you have to remember many people on this site read posts but don't comment .... Many may have read your supplement post and decided to give it a try after Easter so your post was not ignored or a waste.....
Mdaisy was running a quiz over Easter she announced it and got one reply on the board ... But the answers were coming into her by Pm , so while it looked as though no one was interested actually people were replying and some just took the the quiz and did it for a bit of fun.
So please don't take the amount of responses as disinterest ... As I am typing this there may well be people going out today now Easter is well and truly over asking their gps or pharmacists if these supplements are ok to take for them personally and going to give them a go
Hoping this makes sense to you
VG x
ok maybe i went a bit mad n im sorry and thanks for the help in-the past .i dont get free prescriptions was costing me a fortune so this medication is working out cheaper for me take one of each a day and get 90 in one n 100 in the other for just under £20 so works out better for me. i was just hoping to help others because maybe they will or maybe they wont but its worth a try to feel the relief i feel after many years of pain n Fatigue xx
If you do need more prescriptions in future, there should be a way of limiting the cost. Even if you cannot get free prescriptions, using a pre-payment prescription certificate means that you should not have to spend more than £10/month on prescriptions:
fibroaction.healthunlocked....
HI,YES BUT SOMETIMES IT HAVING THE £30 AT THE TIME IVE BEEN ON REDUCED MONEY NOW FOR ABOUT FOR 10MONTH IVE ONLY JUST MANAGED TO OFF MY £400 GAS BILL ITS CRAP XX
hi there
i am really sorry to hear about your hard time and it is unfair and unjust you should suffer like this moneywise and health wise. glad you have found something that works 4 u with the pain/fatigue. i have tried these but didnt work 4 me but i later found out my body does not tolerate something within them. but glad others and yourself my find some releif its a cruel invisiable illness causing a lot of other illnesses. sorry again, i only manage to pop online 2-3 times weekly but if u ever need to chat private msg me anytime and ill ty to get back to u as soon as possible.
i suffer with depression and other probs so understand lifes a bitch and i understand its not fair and i gt the feeling of jumping off that bridge. x kind thoughts kez x
what medication is it that has helped you?
hi love Glucosamine sulphate 1500mg and B12 1000mg hope they help you too xx
i dont go on much because i find it can be depressing we all know how hard it is but sometimes its just too much to take when 20 odd people are crying into their coffee but to some thats how they cope. im delighted you have found something to help i would like to hear more positive news too !! as all groups there are regulars and dipper ins and clicks and thats just life xx
Well said, Peely!
It is certainly hard to know what to say when so many people are in distress - sometimes they feel better for just having expressed their feelings, and that's all they need, but others need a lot of support.
Moffy x
Greetings Chicme,
I agree with you in a lot of ways. So many people feel that if it doesn't come from the GP or NHS, it can't work and there a many closed minds to alternative. herbal medicine. I've posted blogs on the same subject and I get responses like " I only take what comes from the GP".
What many people fail to realise is that the pharmaceutical industry runs things in that respect and they have been fighting a long war against natural medications. Have you ever wondered why many tablets are based on a natural substance ie asprin from willow bark etc but we end up with a white tablet that can cause serious side effects it taken too often?
If nature provided it in it's purest form with no harmful toxins and side-effects, it has to be better that the chemical filled rubbish doled out by the NHS where you have to take a tablet to counteract a side effect from another tablet. Makes no sense to me!
I am allergic to all non-natural medications and have done a lot of research into the subject (I've got the time!!!). My OH is now doing a degree in herbal medicine and the information he comes home with about the inner workings of the pharmaceutical industry would shock a lot of people. I really wish people, especially those who come on this site to talk about side-effects from medication would open their eyes and their minds to something else.
Good luck to you and I would love to know what it was you used. I don't come on this website too often anymore for my own reasons, but if you want to talk about this or any subject, please feel free to send me a personal message.
Blessed love xx
Thank you so much im taking Glucosamine Sulphate 1500mg and B12 1000mg and they have been a life saver i cant believe how much better i feel an can do so much more .so im going to carry on researching and for help my next step is sleeping and to come off Amitriptyline cos of all the side effects and i dont think they ear helping my stomach i have problems with blockages Adhesion i have read they slow the muscles in your stomach down ive been saying for a long time im going to end dead on these tablets the doctors wont have it .having been in intensive care twice so yes i worry alot about being on these so i hope find something.love chic me .xxx
Thanks sooo much for the info. A fellow fibromite I met at a charity event also told me about B12 and I fibroforgot to look it up. Thanks for the reminder. Can I also suggest vitamin D3 supplements. I have practically no naturally occuring vit c in my body due to the lack of sun. I've also found out that many other people with fibro also lack vit d and this can increase pain. Vit D3 is the only one that breaks down and is asorbed properly by the body.
I hope you find your answer and good luck to coming off the tablets. Your life will be important to so many people. I only see my GP for medical certificates now as I cannot take anything he can prescribe.
I'm not allowed to tell you what I use for sleep on this site but it works and the only side effect I get is the occaisional muchies!!!
Good luck and blessed love xxx
HI YES I TAKE THEM AS WELL .I THINK I KNOW WHAT YOU MEAN CAN ONLY GET IT FROM America SO IM GOING TO TRY THEM N GET EM OFF EBAY IF ITS THE ONES YOU MEAN XX
I've sent you a personal message re this subject xx
Be very careful buying any medicinal products, including supplements, off the internet. Ebay is unlikely to include many reputable companies selling that way. Unless you buy from a reputable company, you really cannot guarantee what you are actually paying for.
It is illegal to buy prescription only medicine, or medicine not licensed in the UK, without a prescription, including ordering off the internet.
It is also against the community guidelines to post details of online pharmacies offering medication without prescriptions, whether in public threads or Messages.
Not to criticise but some people Have to take some medicines and they can interact with natural remedies...
Another point to consider is some people get free prescriptions and simply cannot afford to go out and buy supplements which may or may not suit them...
My friend takes a supplement for her arthritis I asked my GP he said yes its ok to go and buy. I took it for three months and all It did was waste my money in my case ......that's why I try never to comment on supplement threads because of the cost and the fact that they can help one person and not another....
VG x
I didn't see the original post you're referring to....but we're all different. I have posted about things that work for me before. Others have tried it and it hasn't worked for them. The thing I like about this board is that there's no pressure to be a part of anything. I take what I like and leave the rest and know others do the same.
No one PMs me and that's ok. I have a local support group with people I can meet up with for coffee. I find that really helpful. Face to face discussions can be very satisfying.....you KNOW people are listening xxx
I KNOW SORRY I WAS JUST ON ONE I JUST WANT PEOPLE TO AT LEAST TRY EM THEM THAT CAN NOT EVERY ONE .XX
I'm not saying everyting works for everyone, I'm just saying that people should be open-minded enough to try alternatives and not all complimentarty treatments cost the earth.
Health is more important than weath anyway. I'd rather be broke and healthy than loads of money and sick. I'm broke and sick but life is about overcoming adversity and finding one's own path.
Blessed love to all and I wish youas pain free a day as possible xx
Hi everyone, sorry been out of it since beginning of March and still in a huge flare.Had an inner ear infection so dizzy as well so,been in bed.Have caught up with the blogs - realise quite a lot of folk suffering.My OH has been trying to cope, we run two businesses from home so life goes on.Am on medication but like most of us, trying to sort house etc out.It is just daunting.Other half is not complaining BUT...Was embarrassed when our GP came out, also out of hours doctor cos of state of the house.I know I should not worry but...Found out that my GP suffers from Fibromyalgia - I broke down when she told me as I do not have anyone I can talk to who has this illness..Family are too busy to visit.Its such a struggle.I KNOW PEOPLE COME TO SEE YOU NOT THE HOUSE.I am usually the one helping other folk so its harder.Just wanted to get this out of my system, sorrow if I am "touching" a nerve with some of you.I feel so alone and tearful.Am on meds including amtripytaline(sorry spelling) anti-inflammatories I seem to have two discs out in my neck so inflammation is still around at present.Its lovely and sunny but have not been out of the houe for nearly a month.Dont have a local support group either.I agree some of us read these blogs but do not comment.Its a life saver being able to share things with other sufferers.Take care all of those who are suffering, and those not suffering quite so much.We CAN ONLY DO WHAT WE CAN DO TOMORROW IS ANOTHER DAY.
I just wanted to send you some love. I've had to learn to ignore the mess around me and just do what I can when I can.
Wow, a GP that does home visits. We don't get those in this area anymore!!
Take care xxxx
Hi SISTERBLESSTHANK YOU SO MUCH FOR RESPONDING.jUST FEELING RATHER TEARFUL AND LONELY.My husband is out all day today,I know we have to pay the bills.He is very worried I know, he feels so helpless.I was in so much pain with my neck initially I was immobile so the doctor had to come out.Had to wait 12 hours for the out of hours doctor to come. Three days later my own GP came out.Been on meds since.Thank you so much for the love you have sent.I send love back to you and thankyou for your encouragement and kindness.Take care xxxxxx
No probs. I may not have health or wealth but I got a heart full of love for anyone to share. One day at a time hon xxx
Hello chicme, I just wanted to let you know that I'm so pleased you have found something that has made you feel so much better ! I'm afraid that I would not be able to benefit from these natural alternatives, my GP has said quite categorically that he would not prescribe for me if I were to go down the alternative route as he feels it would not be giving him a clear playing field, because of the possible interactions with the meds I'm on that he prescribes. I feel I have to honour that as he has given the time and his energy to help me in attempt to get control of my fibro and other health problems.
That having been said, that is purely my humble opinion and experience and am very happy for those people who get on top of their symptoms in which ever way they choose.
I would also like to say that this site has been a great support for me, through the death of my father last year and again this year being cheered up by many of the fun blogs which creates a lovely interaction between lighthearted and good advice, perhaps involving yourself in some of these would help you in the same way they have helped me. i do realise they aren't for everyone, but nothing ventured, nothing gained. Foggy x
It's great that you have found something that helps.
However, not everyone on here will want to or be able to take it. And you have to give members time to respond to a post anyway. You also have to remember that many members may read a post without commenting on it.
I think I might have tried these from the gp a while ago.
I do knoe Holland & Barrett sell them as my friend buys them for her dog
Hi, I read most of the posts ,but dont always reply. I am one of these people that has to watch what I take as I am anaphylaxic. But it is good to know that we can share our stories and information,and I agree that we must stick together. I am also very worried how I will cope if I dont win my appeal. I was on longterm IB,sent in ESA50,and put straight into WRAG group without a medical. I have recently sent of appeal to be put into the support group, so trying to keep everything crossed that this happens. It is wrong how we are being treated especially by people that do not understand the illness.
hi,i know its been hard i was on it for life till all this mess with the government i want to hear from them and i dont think me bottle will just go when i get the letter from them its all wrong .i think the cr-p will hit the fan very soon cos every one is going to be so skint when it all kicks with this government.xx
It's interesting that you're finding help from Glucosamine. A couple of recent studies found that it has no benefit whatsoever for arthritis. Which is is usually what it's sold for. I myself tried it for 6 months & got no benefit whatsoever. That was long before the studies were published.
I take a product for my arthritis & it does help. I don't think it's available outside Australia unfortunately. It contains Boswellia serrata gum oleoresin & turmeric. I was very, very skeptical when my sister-in-law suggested it. But she paid for the 1st month It worked for me within 3 days.
Yes I tried glucosamine and chondroitin when I was first diagnosed with arthritis and unfortunately for me it was just a waste of money.... But then it was only painful on my pocket as one mad rheummy advised mechanical traction on my neck to help with the arthritis and that made me even worse....
Hi there all,
And re:
chicme 9 hours agoReport
hi love Glucosamine sulphate 1500mg and B12 1000mg hope they help you too xx
Reply to this
I do not take this and as i have read odd posts and some one who has wrked in pharmacy,
You should be very careful what you take even if you feel it helps , as px drugs are px drugs for a reason & buying any products off sites with out being professionally knowledgeable is not really a good idea with consulting your pharmacy or Dr and checking it is ok, because interactions can be serious.
We all have bad days and 'reasonable' days and the so called good days is the 2nd said because over time like medication we become immune (not sure the correct way) like meds we take eg i take lyrica and pain relief and now on maximum and its been gradual over time and you know when its starting to not wrk so much because you need more help.
Non of us really know where will be or what will happen next , or we could do the lottery lol.
My brain wrks over time thinking of what will happen when these have no longer got any effect on me and same with others.
I say 'I cope' ... I doubt i will accept but because i was only diagnosed a year ago now but yet the other condition i was also diagnosed with i was born with and through out my years questions and visits and being given meds or hospital admissions and never knowing why.
Theres days on here some are in a what can i say or how can i say without offending ... A more playful mood (which is GOOD) because they are trying to cheer us up!!
Only we don't all feel the same at the same time.
End of the day you reply to the post that most suits you and your mood.
We are all here to help the best we can and there is brilliant support and no one would ever think 'ohhh no not again he/she moaning again' or we should not be here!!
It is true we cannot all respond to everyone's as it may not be something that relate to us only we do try our best.
Personally through being in such a bad way and others on here fully understanding i have got to know some lovely friends .
Its not a 'Clicky gang' its just a 'homely' place where we all are aware of each others situations.
Yes sometimes we are very busy at times with wrk, family home problems etc.
like Easter and trying to have family times
Some are alone so this site is helpful too for that reason.
You can inbox any of us you feel you could personally talk to and i/we will try help you.
But please think about whatever your buying and like said some are on px's as cannot afford to try other things.
Lots of love i will stop here as i can gab for England lol
Hugs caroline xxxxx
hi,sorry i didn't get back to you my Internets be down dam!.i class my self as a very sensible person streetwise so i am very careful of what i buy.i think im more in danger of all the side effect of the tablets the doc gives us that is my aim to come off em all but wel will see at the im just enjoying the relief and energy im feeling its great really so if i come back down with a bang at least i will have enjoyed these last few weeks ive had feeling so good .and they workout cheaper than prescriptions. so thank you for your message i will take it all on board love n hugs xx
Great post cazzie I think you summed everything up in a balanced way...
VGx
Don't get too stressed about people leaving a message late. I used to get annoyed about things llike that myself and then I thought well at times I don't feel like talking or going on laptop due to fibro so for all I know they may be feeling the same
hi,just got my internet back on been for days.i know i did act a bit to strong i will keep it calm thank you
Hi chicme,
You are entitled to have your 'off' days and thats is fine as it really can take it out of you, so sometimes we release the frustrations, but its better to be truthful than stay in the back ground or even leave the site, so it was helpful to us too knowing how you was feeling!
It is so so hard to remember everyone and everything , you only get to know others by being around as much as possible.
That is too harder than said as some of us like i said are also busy busy but i can tell you something ... I would LOVE TO BE HERE MYSELF allll the time.
I always look when i do come to see what i have missed and who not helped.
So you say it as you think its just more about trying not to be hard on any one as we all want to be here.
I would have to sit at my laptop day and night to keep up and thats a bit impossible.
There is definately a few that are here a bit more and are a bit like the alarms you wear round your neck lol trying to help!! And have lovely natures and humours too trying best to keep everyone up beat best can ! And they are the great gins, VG , lady moth;-D xxxxxxx
Hugs to alllllllllll your fab xx
hi,thanks love prob put my point across in the wrong way well i know i did ??.i just think and keep saying to my sons the medical world are missing something small the way we all suffer with fibro like anemia, b12 other, vitamins i have b12 injections an ive noticed a few on do so maybe that's part of the link or maybe i think too much haha and i do feel really good taking b12 tabs was just hoping someone else would too hugs to u2 xx
Stop the Abolition of Disability Living Allowance for Personal Independence Payments
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