I may have cured my fibro

It's early days but I think I have cured 90% of my fibro symptoms.

To cut a long story short I have been suffering with pain and fatigue for over 10 years. It's been so bad that I lost my job and couldn't work for a long time. I couldn't walk without 2 sticks and then only a few paces without being in agony in my legs and joints. My hands were number and tingling, I had carpel tunnel syndrome, 2 prolapse vertebrae, chronic face pain and was hypothyroid too.

I have had extensive surgery and been on every fibro drug going. I have exhausted pain management programmes twice, but nothing helped.

The first breakthough for me was cutting out gluten... every last bit of it, not been easy as it's in everything. But this made a noticeable different to my fatigue. Interestingly the NHS diagnosed me with IBS but not coeliac. However I have severe gluten intolerance which is not picked up by blood tests or endoscopy.

The second breakthough was sorting out my thyroid. with the help from the folk on the HU Thyroid uk forum I ditched Levothyroxine and now self manage on NDT. This breakthough has been a slow one as it has taken over a year to get to my required amount.

The third breakthough was getting the right supplements in my body and good quality ones too. I realised that I was not getting the nutrients that I need from food , probably due to the damage that gluten has done to my gut. When I switched to liquid, sublingual and gel capsules the transformation was almost overnight... all leg pain gone in a week. That was a month ago and I am still going strong. The supplements that did it for me were D3,K2 Magnesium malate, Floradix twice a day and sublingual B complex with very high dose B12.

Interestingly I asked my GP to test D3,B12, ferritin and Folate levels and they said they were all OK. It wasn't until I requested a copy of the printout that I realised they were all low, but not in the treatable range for the NHS. I got online and looked up the recommended doses to raise my levels to good or very good, cos who wants to be average!

Finally I have given up sugar. This has made a real difference to my stomach issues and my joints pain. Even my osteoarthritis in my knees feel freer since I have stopped the sugar. Even one naughty sugar treat and I feel my joints stiffen.

So what I am saying is don't give up. Educate yourself about your body and get the test results from your GP. Don't just accept that your results are fine...

Try different supplements, one at a time and then you know if they give you any improvement. Keep reading and researching. That's what has worked for me, I just wish I had done it sooner.

Happy to answer any questions that you may have.

All the luck in the world to you all😊

22 Replies

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  • i am so pleased for you it gives us all hope and not to give up warm hugs to you

  • Great news, lb. I, too, am following the NDT route thanks to info from the T-UK forum (along with adrenal support and supplements). It's helped a little so far but I know I've got a long way to go (I've been ill since the 1990's).

    Good on you for not giving up. Keep learning about your health and fighting to restore it. I am too! :-)

  • I thought this was going to be spam and I'm so glad it's not! I have taken a similar route, since 2000, and am feeling good most of the time now. I take a lot of supplements (magnesium malate, C, D3, Bs, etc.) and tried gluten-free but have settled on low gluten, which works for me. Thyroid was a big issue for me and regular MDs are often hopeless on that -- they test T4 only and it's so much more complex! I had Reverse T3, adrenal exhaustion, IBS, and of course serious fatigue. The last part that has really improved my energy is giving up sugar, which I only did because I became diabetic! My blood sugar went both too high and too low, and either of those can make you feel exhausted. So getting that stabilized has made a big difference in my energy levels.

    So as ib003 says, you have to educate yourself, get tests and copies of the results, research them, and think for yourself, don't depend on the docs to do it! A lot of their training is in quickly matching prescriptions to conditions, not really understanding things in a holistic way!

    I do still have FMS -- I still have to be careful not to overdo, and pace myself, and not get carried away with feeling good and thinking I'm going to do a thousand things! But life is so much better now!!

  • I am so glad that I am giving you hope, in the same way that others gave me hope. I think for each of us it's about working out what our own body needs. Don't listen if you are told it's in the head or that you have to live with it. If 2 had listened to my GP I would not be as well as I am now 😊

  • I would like to add that I didn't start any of this until 2008, because for the first 8 years I believed my rheumatologist who said I did not have FMS! Even though all my symptoms matched as far as I could see! I'd been diagnosed with cutaneous scleroderma, which is done by skin biopsy, so there's no denying that! But everything got blamed on that. I finally joined a scleroderma support group and those people told me I had something going on besides scleroderma! So Yaay for support groups! I went to a rheumy that they recommended and finally got an FMS diagnosis! So I really learned to be skeptical about what doctors say, since I'd believed on for 8 years!

  • Well done you. It's too easy for them to stick a diagnosis on you and then not look any further. Mine was thyroid CFS ME and Fibromyalgia!

  • Good for you too! I don't have such a problem with the diagnosis -- if it's accurate it does give you a direction to go for your own research. My problem is that MDs shove prescriptions at you and do not explore other possibly helpful routes to recover your health. FMS is a complex condition, and I'm sure every doctor does not have the time to explore it, but a lot also don't care and the drug companies are a quick route to "doing something" even if it makes people worse in the long run.

  • I totally agree with you. The drug companies keep the nhs locked into prescribing drugs rather than looking at wellness. There is no money in wellness unfortunately.

  • Good old Metallica 😀

  • Thanks KaI. Others helped me on my path so I felt I needed to pass on some of what I have learnt 😊I am glad that it had helped you too 😊

  • Hi Ib003,

    It's grand to hear that you are feeling tip top!

    As there is no actual cure for Fibro at present, It has been suggested that supplements may ease some symptoms. We are all different. What works for one person, may not work for another.

    It is highly recommended that any one wishing to go down the supplement route, seek professional advice from a Health Practioner, as many supplements may interact with conventional medicine, and indeed make your symptoms much worse.

    Be on the safe side and have it checked out first :)

    I wish you well,

    Soft and gentle hugs,

    Elizabeth :) xx

  • You may not have read my post correctly as I have been down the conventional route several times. I have been checked out by my GP and many consultants. They have been no help... I have a better understanding of my condition than they do unfortunately.

  • Hi,

    Indeed, I did read you post correctly, my reply was for all our members.

    That's wonderful you feel, you have a better understanding of your condition than the Professionals have.

    However, in your opinion this has worked for you, which is great, but we as a community cannot mislead others into believing that Conventional medicine will not work for them and supplements will!

    We cannot give fellow friends false hope, as I mentioned in a previous reply, there is no cure at present for fibro, so I would urge anyone going down the supplement route for the first time, to seek professional advice first and be vigilant of any supplements that claim to be miracle cures, esp, buying over the internet. If It seems to good to be true, It probally is!! AND you will only waste your money!

    Professional advice should be sought before buying supplements as many are not required by the body!!

    Hugs,

    Elizabeth :) xx

  • I think you have written a great deal of common sense here my friend. Fibro can, and is a complex and insipid illness and many of us can get relief from conventional medication, however, many of us can't. I agree with you completely that any trial of supplements should always start with a consultation with your GP or medical specialist.

    I want to genuinely and sincerely wish every Fibro sufferer all the best of luck

    Ken

  • "be vigilant of any supplements that claim to be miracle cures"

    There's a big difference, though, between supplements which ARE required by the body and so-called "miracle cures". Neither I nor, I believe, lb003, nor probably any of the others here in this thread have been conned by these so-called "miracle cures". What we've done is to take our health into our own hands and research thoroughly various possibilities to help ourselves.

    Take my case. I've spent years being fobbed off by conventional medics and being told there was nothing they could do for me except give me opiates, etc. I refused to go down that route (though I was put on pregabalin before I did any research on other possibilities, and I haven't been able to get off that yet). So I researched and eventually found several possibilities - eg. the possible fibro-thyroid connection, vitamin D deficiency, etc. I consulted a private doctor and I'm now supplementing with entirely natural products thanks to his advice. There has been definite improvement, though there is still a long way to go for me as I've been ill for such a long time.

    There are lots of people like me, and like lb003, who have become fed up of being fobbed off by medics, and who have taken the decision to try a different route rather than just blindly accept what we've been told by established medical practice. And I know several people who have regained all or part of their health as a result of taking this alternative (more natural) route. So please don't deny people the opportunity to take their health into their own hands and help themselves. Surely this forum should welcome ALL informed opinion, and listen to anecdotal evidence from people who have benefited from various approaches?

  • IB ...I am happy for your personal improvement you are experiencing and I agree, that we all need to be our best advocate. I, also agree with ryanbone and The Author in regard to their thoughts on inclusivity of involving your Doctors in Decisions regarding ingesting supplements/herbs. I take a coulle, myself and have included my doctor in the loop. For whatever reason, you are experiencing the improvement in health and lessoned pain... I am only happy for you and pray that that increases and continues. I also do know that supplements (if someone is lacking) can be helpful... as long as you have your doctor in the mix,specifically the ones that are prescribing your medicine or managing your co conditions. My concern is that some people get so desperate...they are willing to ingest supplements and herbs, and often can do quite a bit of harm because herbs...although they are natural, and supplements,on their own in proper doses, can be okay... but combined with other medications,diseases,conditions and other supplements/herbs can be to detriment for the patient...unbeknownst to that patient. An example would be the naturally occuring curcumin....which is sold under the name of turmeric. One of tumerics claims is that it helps quite a bit with inflammation and can assist in staving off Alzheimer's... But in taking it, people who are not advised, can take too much and cause an increase in palpitation of their heart...not good with some pre existing conditions or irregular heartbeat and the such. I know you did advise people to make sure and include a professional in it... I just want people to know that if they're truly was a cure, that we would all know about it. Also, everybody can absolutely be personally improved in they get all their supplement and levels in their body for vitamins and minerals etc...up to where they should be. As far as food and food products...if there is an allergy or an adverse effect on the body in regard to a type of food or product.. then eliminating that if your body doesn't handle it well, will always improve our health. Finally, whenever we do something in excess wether it iscarbohydrates or white flour, wheat, sugar, caffeine, alcohol, tobacco, etc... Any or all of those things, as you know first hand... in excess, are not good for us... some of them not at all. And each person does react differently,positively or negatively, to different things. I am all for making positive changes in our diet and food intake, as well as doing the best we can with where were at, but I do not want some person who might be feeling particularly desperate today...(maybe more so than they did yesterday) doing something inadvertently, hoping for a miracle without the proper supervision and/or information.

    Katherine

  • The word "coulle " in previous post should of been "a few"

    Katherine

  • Hi lb003

    Pleased for you and your considerable efforts. You are clearly well researched. I've taken a similar route insofar as researching my spinal condition which is admittedly rare. I've personally found the response and guidance of clinicians re this to be woeful and patronising. Without a doubt we have to take responsibility for ourselves and any half decent practitioner should enter into a partnership with us to steer a beneficial course. There are countless posts on this site from those who have been dismissed by clinicians in a very uncaring and judgemental way. It is a battle for many. My own GP is good insofar as he listens but he isn't inclined to question very much or take the lead?

    I know GPs are overworked and it is disappointing when I attend surgery that so many appointments are missed by irresponsible patients who can't be bothered to cancel. Also they are bogged down by government paperwork and dictats. They need to focus on being effective clinicians.

  • Yes Sniffer8 I agree. It's such a shame that they aren't encouraged to research more but are bound by out of date care pathways. A good GP should welcome a well informed patient and work with them, not fear their knowledge. That is just a sign of their own insecurities.

    Good luck with your research too.

  • Hi with my way of thinking plus reading items ive found Fibromyalgia type illnesses work through a chain of commands/various levels not unlike the Army or company!

    What your dealing with is a lower rank as like in the Army the lower you go the more of them to deal with!

    Fibro being at the top works through your hormones causes an imbalance which upsets or sends ripples down the chain of commands.

    Which is im now pretty sure how it works with ibs because (For me anyway)is that once get the quick gangway pan time time arrives noticed that it stinks very bad as had to take a sample to hospital where as if not going smells more "normal"

    So im pretty sure something is released like maybe bile or something from the glands/organs etc that makes it stink so gives you the help toilet time!

    Your main glands are controlled by your hormones as that's how much of the chain of command is sent with likes of thyroid for one as we know if not right sends wrong messages to other things so all these things are interlinked like a chain as not on there own as like with me having a pituitary tumor which apart from speaking to other glands/organs mine goes back to testicles/ovaries in females then to breasts which then go back to pituitary so a circle/circuit so when working right are in balance but once like a tumor goes wrong!

    I found something for me that really helped as felt so great lacked muscle pains/aches head felt clear slept great and a whole lot more it was the 2nd time i tried it which confirmed to me i was on right track but did speak to Endo about it but they didn't want to know/not interested as can't think for themselves/work as they say outside the box?

    but when they gave me Tgels my pains went sky high caused me many problems!

    Could write more but have to get off but something im very interested in.

    Being Autistic with Asperger's im like an info sponge i see things that others don't like reading say articles/tech and can put into a context or know where it's going before the end!

    much of what ive worked out myself is now coming out like the tests at John radcliffe hospital on females hormone levels for pains etc is one

  • Lots of what you say makes sense overal...thanks for posting.

  • I have suffered from fibro for 15 years I have tried all sorts of different supplements, medications etc with no relief. I was very interest to read your post can you please tell me which brand and supplier you sourced them from. Your post once again inspired me not to give up. Bless you and may you continue to improved.

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