HAVE YOU EVER / OR ARE YOU CURRENTLY ... - Fibromyalgia Acti...
HAVE YOU EVER / OR ARE YOU CURRENTLY TAKING ANY VITAMIN OR MINERAL / PROTEIN SUPPLEMENTS WHETHER ON PRESCRIPTION OR NOT?
TheAuthor478 VotersPlease select all that apply:
Have taken Vit D (2 x 800 iu) daily since diagnosis in 2013.
I have Osteoporosis so I have prescribed Acrette D3 and Alendronic Acid. I genuinely and sincerely hope that all the members do get a good diet and do not need these things? Please take care of yourselves guys.
All my hopes and dreams for all of you
Ken x 
x
I am on life long Warfarin since having DVT & sub massive, bi lateral PE at age 52. Now taking Vit D for low level of just 15. norm (75-150) in addition to all other meds. Concerned risk of clogging arteries with Calcium & having a stroke.
I am so genuinely sorry to read this and I want to sincerely wish you all the best of luck.
I currently take supplements recommended by my Chiropractor!
I would NEVER take supplements just for the sake of it. These can make you very ill indeed!
ALWAYS check with a HEALTH PROFESSIONAL FIRST and READ the instructions before putting these supplements into your mouth. Your body may not require them.
Cheaper versions are jam packed with FILLERS that can be harmful. Always consider using only a reputable well researched brand!
I agree completely my friend. It is so easy to overdose on certain products and they can be dangerous! It is much better to seek medical advice and eat a healthy balanced diet x
I'm also in total agreement but have to admit that I've been taking supplements for years now but all mt health care professionals know about them and I only buy the best brands on the market to be sure they are safe as one can expect.
Hi all hope you all are doing well with your health.
Where can you get magnesium and how do I go by and getting it. if I am lacking do in any vitamins which I am may not be getting it through food or any other resources.I
Is there something that can suppress hunger I want to lose my weight I need help.
Anything that has worked for you.Goodluck and have a beautiful day or evening.
Hi Jannah
You can purchase magnesium from any health food store. if you think you may be lacking in any vitamins or minerals then it would be best to talk to your doctor who could arrange some blood tests? I do not know of anything that can suppress the appetite I am afraid?
Sometimes we can mistake being hungry for thirst.Try drinking a glass of water at the first onset of feeling hungry....Gradually you will reach your ideal weight and the fatty tissue will just melt away.
Best Wishes...
I wholeheartedly agree with your comments about cheaper versions
Jane 😃
I take a magnesium supplement + Organic Whey (without any additives or flavourings)..Google (Whey and Fibromyalgia in the Netherlands)
Thank you for sharing.
Do you find a difference when taking them?
I take the magneseum for a heart condition and Whey following recommendations from a Nurse friend in Holland to help with the Fibromyalgia. .(as you may know cannabis is legal in Holland and is commonly used for pain relief)
I definately have less ectopic beats since starting the magneseum supplement and l feel physicality stronger with increased muscle density since taking the Whey supplement....like anything else it didn't work overnight and of course l consulted my GP who did a magneseum blood test...I feel my conditions would be far worse if l didnt take these supplements, they work for me and l am committed to trying to improve my quality of life.
The magneseum helps with bowel movement also...So less toxicity...
There is no miracle cure that's for sure so we all have to do the best we can to help ourselves whatever route this may be...
Carol.
I want to genuinely and sincerely wish you all the best of luck.
Also take Imega 3 6 8 which has been amazing and made the most difference as it has helped my joints tremendously.
Do you take them in equal amounts?
It is one capsule which can be taken once or twice a day, one of my friends has cancer and takes it twice a day - with amazing results. I take it once a day, before taking it my joints and limbs hurt so much and I had trouble with co-ordination. Now I am still in pain but it is greatly eased and the change in me has been remarkable. We had read about someone else taking it ( for Lupus which I also have) and what a change it had made. I buy them from Holland and Barrett.
I have worked in the nutrition industry for about ten years. I am now retired/ disability at age 64. I have fibromyalgia , R.A., COPD, severe arthritis and sleep apnea. I feel the fibromyalgia is the biggest culprit with the pain I endure. I have had two bone density tests, and I must say that after taking vitamin D3 the second test five years later showed I had improved! I am on Gabapentin and Sulfasalazine for the R.A., and the fibromyalgia . I really don't think there is a magic pill to help with this pain. I've even told the Mayo clinic I would volunteer with any Fibromyalgia research. They just have to learn more about this disease!
Jane
Yes, you are so right - we need more research. ......... Why is it not happening? .........!!!!! We all need to make our voices heard. Part of the trouble seems to be that most of us are too worn out with trying to cope with the basic chores of getting through each day, that we have little energy left for standing up for better treatment and recognition. There are literally thousands and thousands of us 'out there' - the Internet is full of the cries of Fibro sufferers. But Fibro is not 'sexy' - and has one of the lowest profiles of any 'syndrome' . I seem to recall we had a Fibromyalgia Day fairly recently. Did you hear anything about it on the media? I didn't. It would have been a wonderful opportunity for Woman's Hour to do an article on it (after all the majority of sufferers - are women!!!). But I don't remember hearing anything about it at all. Does anyone have any ideas how we can raise our profile in order to get research done in this country? All the best to you, janiegirl.
Yes, you right about not enough people really listening. Has anyone searched for a retailer who makes bras and underwear for Fibro suffererers? The hardware just makes my torso ache in pain. Also, to find one made out of natural fibers and in large sizes just hasn't happened!. It would be a real niche for any of you who are good at sewing.
Thanks so much for all of my fellow humans for trying to find answers and not being fearful about asking for answers!
A special thank you to: A10ha
I would be first to visit a site that sold comfy bras haven't been able If you find something wear one for more than half an hour without pain for about 6 years now. Went for a mammogram this morning and the nurse said "take all your clothes off from the waist upwards including your rba and I said "I wish". Try to keep a sense of humour about it but some days when I want to look a bit special it flies it of the window. The breast specialist said to try Agnus Castus as it has worked miracles for some of her patients but all it did for me was make me feel nauseous. I think the majority of the pain is coming from my rib cage as fibro initially started badly with costo chondritis and it has ever really improved much.i f you find anything comfy let me know.x
Oh too bad and so sorry to hear! My ribs are effected too because I fell and ran my poor ribs and breast right into a heavy chair arm rest! The Fibro and the rheumatoid arthritis went right to work on my ribs! I fractured them ; when at first they told me they were just bruised. So what is Agnus Castus?
Ouch I managed to break my ribs when I had a terrible chest infection once through he violent coughing so can commiserate
Agnus Castus is a herb which I took in capsule form I was amazed at a specialist actually recommending a herb but she was lovely. She even recommended somewhere where I could go for a proper bra fitting as she said many problems could be caused by the incorrect size of bra and that if they recommended something and it then was uncomfortable after a days wear I would be able to take it back. Won't go into the agony of them trying to find the correct bra and the fitting of them. Needless to say the ones I took home lasted half an hour each glad I could take them back as they were quite expensive. Oh well the search goes n
I want to genuinely and sincerely wish you all the best of luck.
Vitamin D3. For me this has made more difference than anything else the Dr has prescribed. Although my colleague who has had fibro for about 15 years, it made no difference at all.
I was told "You have Fibromyalgia (so get on with it.") I have multiple autoimmunes but no help from GPs. Only get T3 for thyroid. I do supplement but have been given no advice or information.
That, sadly, sounds like a typical response. It is absolutely disgusting. I sometimes think we would get better treatment for our Fibro if we went to a vet! I suggest you change your doctor. You should at the very least be entitled to a course of hydrotherapy, which can be very beneficial. Good luck.
Thanks A10ha, unfortunately all doctors in my town have merged so four sites and a few doctors. Lucky if you see the same one twice, waiting times are two to three weeks. Last visit I was made to feel neurotic and told, "you have a roof over your head and fresh water to drink.". In other words get on with it. 
Had a short spell on D as it was found to low even though I spend a lot of time outside. It made no difference so stopped after the six week long trial. Part of a process of elimination towards a fibro diagnosis.
They should have investigated further, and got to the bottom of why your d level is still low. I would go back again and ask them to find out why, and what can be done for you. It is very important for your future health and wellbeing that your Vit d levels are at an acceptable level. All the best.
Thanks, I am still going through various tests and assessments. It is not horrendously low and most people in the northern hemisphere have low levels around the winter months. Off to be assessed at the CFS/ME clinic at the end of the month as part of the elimination process!
You should be taking at least 1000-2000 IU per day!
I have been taking vitD supplement for a year since blood test found my level was very low at 11 but am only prescribed 800IU daily. Should I query this with my doctor?
I want to genuinely and sincerely wish you all the best of luck. I have pasted below for you the ''Canadian RDA as specified by *Google
*Health Canada's daily recommended intakes (RDAs) for vitamin D, updated in 2011, are 400 international units (IU) for infants, 600 IU for children aged one to adults aged 70, and 800 IU for adults over 70. Health Canada's safe upper limit is 4,000 IU per day.29 Mar 2015
My dr took a testosterone sample as I was tired all the time with my Chtonic Fatigue Syndrome and found it to be. Low so I have an injection to dupplement it every ten weeks now and it seems to help for a while then I go downhill again. I know a lot of people associate it with libido which was high before hand but it is key for tiredness and exhaustion, may I suggest any guys on hear get it checked out.
Pattick
Health Canada's daily recommended intakes (RDAs) for vitamin D, updated in 2011, are 400 international units (IU) for infants, 600 IU for children aged one to adults aged 70, and 800 IU for adults over 70. Health Canada's safe upper limit is 4,000 IU per day.29 Mar 2015
Diagnosed with Cfs/me and fibromyalgia. I have been prescribed 2 X 800 iu daily for 4 years but now just buy my own as take 3000 iu daily with vitamin k. Doc agreed to give me b12 injections but tbh my daily dose of 1000mg methylcobalomin take with niacin (both purchased by me) is my life line.
I also buy and take coq10, l'carnitane, magnesium, Vit c (taken at night) , d'ribose and doctor Sarah myhills multi mineral mix. I have also been prescribed levo thyroxine. I have going from being bedridden 5 months ago to being upright mostly all day every day. I have gone gluten dairy free and try to eat a stone age diet. Very expensive but it seems to work.. 😕🤔 Take care everyone 😘💕
That's interesting. I'm glad to hear that what you are doing is working. I found that going gluten free, sugar free and being careful with dairy helped reduce pain. I wanted to find out more so I recently did a food intolerance test which confirmed those intolerances and showed up more which I'm going to eliminate for 3 months. Hoping that i notice more improvement with pain and energy levels!
I have read Dr Sarah Myhills books on Chronic Fatigue and sustainable medicine and have followed her advice as best as I can. NHS dont do tests at cellular level therefore trial and error is all I can do unless I spend more. I still have dependants to pay for and pay for supplements which work out about £300 plus every couple of months. Hard to think our health service provides little or no help when you are soo Ill 😰. Not sure how they get away with it really.
So glad you are improving ! 😀
I want to genuinely and sincerely wish you all the best of luck.
All of the above. I've taken an "A-Z plus minerals" with no noticeable result.
I take Vit D + calcium on script which is now needed. I've asked for B complex to be monitored. AS I don't eat fish, I take Omega 3+6+9, I don't seem to get enough with the plant alternatives.
I honestly don't believe in supplements otherwise. If we're eating a BALANCED DIET, they should be unnecessary except for prescribed. For someone outside so much, I keep covered up and am short of Vit D. There are some deficits which may help cause some of our problems so a GP is called for, not a supplement manufacturer.
Unfortunately due to overworked soil and pesticides much of our food is depleted of its nutrients. Also wheat gluten in our diet can prevent the absorption of what nutrients there are. Antibiotics taken by ourselves and absorbed through meat consumption can play havoc with out guts. I have yet to find a GP knowledgable in nutrition. My own, by her own admission knows very little and says it is not taught in any depth in medical school 😖 Each to their own though but I will try anything to get a good day. Nowhere near where I was before the crash but much better taking supplements especially b12.
Vitamin D and folate on prescription as was found to be very low. I have Fibro 😔
I want to genuinely and sincerely wish you all the best of luck.
After a short course of vit d I was told by my dr, that I could only have one course on prescription. Said to go and buy some more from chemist.
If your vitamin d levels have been proved to be low, and are still low, you are entitled to get Vit d on prescription. You should not have to buy it yourself if there is a medical need. I know the NHS is strapped for cash - but then, so are most of us. If doctors aren't getting enough money for the basic drugs they need for their patients to keep them well, then they should be kicking up a stink about it to the government - not making their patients suffer. Just my humble opinion. Suggest you go back and ask again! Especially if you can't afford to buy it yourself. But that should not be the issue here! Good luck.
I totally agree. As soon as I was diagnosed with fibro, which consisted of the rheumatologist squeezing my hand, elbow and shoulder. My Dr. Says I have had plenty of tests so it must be and and can only treat the symptoms. So we have pregabline, tramadol and paracetamol. I was diagnosed with osteoporosis and arthritis some years ago but she just dismisses this. I feel as though I'm being a pest. Thought about changing Drs, but will I have same attitude .
Maybe research a bit more and check out the doctors " bios". I have fired two doctors already because of lack of caring! I guess they forget what they are there for and see us as a dollar sign! I have a new doctor who is willing to try and be all my specialty doctors wrapped into one! She is very young with three children but also believes in the holistic approach. I told her I was so tired of driving around going to see so many doctors and just couldn't take it anymore! She replied with ," I will sure give it a try!" Love it
I want to genuinely and sincerely wish you all the best of luck.
I think this varies all over the country. You wouldn't get anything from our practice, you have to buy it yourself. Like certain drugs, it depends on the GP and their practice, sadly. How wrong it all is. Holland and Barrett online are good. Join their rewards club and buy when they have buy one get one half price or buy one and buy one for a penny. Then use your points for discount. Every little helps.
I also take extra strength cod liver oil and flaxseed oil capsules🌺
I want to genuinely and sincerely wish you all the best of luck.
Hi I take vit D and folic acid all on script xx
I want to genuinely and sincerely wish you all the best of luck. x
I voted other because I take a general multivitamin with iron. I take other supplements for arthritis and an autoimmune disease.
The only one that makes a difference to the spasms is magnesium, I take 500-1000mg per day
Yes, it really helps, doesn't it! So glad you have found some relief.
I also take 5-HTP which gives the body the raw ingredients to make serotonin. I also take LDN (Low Dose Naltrexone) - just a tiny dose of 0.5mg every morning, which gently stimulates the body to make more serotonin. The theory is that people with Fibro don't have enough serotonin and this makes them more sensitive to pain so by increasing it, you become more pain tolerant.
Does this seem to be working for you?
The LDN certainly helps with keeping my mood more buoyant (I feel happier without the need for anti-depressants) and I have a more energy and motivation. I think it also helps me tolerate pain better beacuse although I still take painkillers, some days I don't need to take any. I feel the 5-HTP helps my body make more happy hormones.
Thanks for the info. I'm seriously thinking of looking for these 2 things and giving them a try.
I just realised I made a slight mistake - the LDN helps to stimulate your brain to make more endorphins - not sure if that includes serotonin, but it's another happy chemical!. If you want to get LDN you have to get it privately on prescription. I use the clinic in Scotland - Dicksons Chemist. If you give them a ring they'll get you a phone appointment with a doctor who can prescribe. I had DR McCall. You'll need to email them any letters you have that confirm your diagnosis in order to be considered. good luck! x
I take iron as well as Vitamin B & D and Calcium.
Vitamin B12, D and Iron - Iron tablets are on prescription, the rest my doctor told me to take, but he cannot prescribe for me.
Even when a supplement is prescribed by your GP, you still have to be careful.
I was prescribed Adcal (calcium and Vit D) and took them for approx a year only to later find out the pain I had at the time was caused by these, they were calcifing my arteries. I still take calcium and vit d, but with no fillers!
It is like any other medication, they have to be monitered as many have full blown side effects and will interact with other meds you may be currently taking!
When the supplements were first introduced to me by my Chiropractor, she did it gradually to moniter my well being and effectiveness. I must say they have been fabulous. I also tried living without them for a while and BANG oh boy, the difference of taking them away was just insane.
So now I know the ones I was advised to take are SUITED to me.
I also follow a healthy food intake life style, but as we have mentioned many many times, we are all different and what one thing suits one, It may not always suit another! xx
Not enough people realise how dangerous some of the so called supplements are, and I have to admit it scares me. Because it's 'natural' it is accepted as harmless. It can't be natural if it's manufactured.
I keep trying to get that through to my mum. She won't take any meds prescribed by her Dr unless 100% necessary, but will walk into a health shop and fill her boots!
I'm really glad that you have raised the point, thank you 🐸
Dear Ryanbone 10, did the doc check your calcium/Vit d levels after you had been on the Adcal for 6 months? They are supposed to do a check! Not wait untilyou get ill. Pleased to hear you are getting the right stuff now. You are so right - 'one size does not fit all' ! We are all different - thank heavens.
Hi A10ha,
No my friend, it was only checked when I asked for bloods to be taken a year later!
Very cautious now though! xx
Hi Someone on the Thyroid UK site told me it was really important to take Vit K2 when taking D3 to prevent calcification. It apparently directs the calcium to the bones instead. I told my doctor this as she was unaware 😳. Take care 💕
Absolutely jax777 that is certainly a fact.
They work hand in hand togeather. The chiropractor advised me of this and what a difference it makes.
Hugs, Elizabeth xx
Omega 3
I want to genuinely and sincerely wish you all the best of luck.
I take vitamin D, 25ug, 1 per day, but I buy it myself following an appointment with a physio several years ago, who couldn't help me but whose mother had Fibromyalgia.
I want to genuinely and sincerely wish you all the best of luck.
B12 by injection every six weeks due to Pernicious Anaemia so I guess this isn't directly linked to Fibromyalgia. I take Vit D and K2 but this isn't prescribed by my GP, although it was recommended by my endocrinologist. ( so I should have put a vote for that too, sorry!)
I take an iron supplement as I am quite low in iron. It seems to be helping a bit
I was buying the over the counter vitamins and mentioned it to my GP who told me I was wasting both my time and money 
They would say that because they were taught drugs in college; not nutrition. Some are wasted by going down the toilet if you don't need them but unless you grow your own food and cattle and do it organically, you should do everything you can to help your mind and body! I always have great HDL and LDL readings even though my cholesterol is high! I'll ask them if they want to know what I take and they say, no whatever it is just keep doing it! Wow!
I want to genuinely and sincerely wish you all the best of luck.
I Take NDT, which is thyroid hormone replcement.
Didn't know you could bit I take magnesium which really helps also selenium and evening primrose
Also take Holland and Barrats Senior bit and mineral tablets daily. I am vegetarian.
I want to genuinely and sincerely wish you all the best of luck.
I get monthly injections of B 12.
I want to genuinely and sincerely wish you all the best of luck.
Had myers cocktail prescribed for four years which greatly helped with the pain but current GP will not prescribe
I want to genuinely and sincerely wish you all the best of luck.
Have just had a blood transfusion due to very low iron, was also found to be low in B12 and Vitamin D. So now by prescription I have B12 shots every 12 weeks (after 3 per week for 2 weeks to jump start my recovery), Ferrous Fumerate (Iron) 305mg 1/day, and ProD3 (Vit D) 10,000 IU 1/day for 3 months and then do bloods again to evaluate results of supplements. I had longstanding markers for anemia with symptoms that I never noticed due to the fatigue, pain and general unwell feel that was completely attributed to my fibro
I take Vitamin D, prescribed by my GP
How do you all get these on prescription? I have to pay for all my vits, it is so expensive. I take a multi osteo 50plus, vit c, fish oil, (used to get this on prescription for pmt etc. and they stopped it some years ago) and i now take turmeric as it's very messy making a drink with coconut oil and it as I had a breast abscess over christmas, and also a sea buckthorn for menopause dryness. Nightmare expense.
I got mine as my consultant wrote to my GP saying that I needed them. I want to genuinely and sincerely wish you all the best of luck.
I have taken vitamins spiced and paid for but not on prescription
I want to genuinely and sincerely wish you all the best of luck.
I take a multivitamin women
I take 90mg co-enz Q10, d-ribose and aloe vera gel.
I've had VitD deficiency and been prescribed a years course of VitD with calcium to help absorption.
I've also in the past had two bouts each of B12 aneamia for which I had injections and two bouts of iron deficiency aneamia for which I was given tablets.
Other than that I don't take regular supplements. I did briefly last year as my husband had oversupplied on some good quality ones. But as others say I worry more about what else is in some of the cheaper versions so unless they are prescribed or at least recommended by a GP I don't generally bother.
I recall watching a programme last year where they tested various over the counter versions of supplements including some well known brands. Many were found to have all sorts of unwelcome fillers etc, many were found to have only small to minute amounts of the required ingredient and some were even found to contain NONE of the crucial ingredient. And how much you paid did not make any difference to the quality of the product. It was shocking.
Yes indeed Margaret, There are certainly a lot of company's out there ready to rip us off with such rubbish!
Playing with peoples live's to make a quick buck............ Everything seems to be about money nowadays. xx
I find that magnesium, high strength curcumin, b12, Vit D and calcium + D-ribose - and most importantly the medication Low Dose Naltrexone (research this safe and effective drug on the web) have really helped me. I can now, with careful planning of activities and plenty of rest, enjoy some good quality of life once again. I know these have helped, because if I stop taking them I notice the difference, and suffer more pain. I do worry that because none of these have been prescribed by the NHS (cost 'too high' for an 'illness' which is not properly recognised and often not effectively treated by the NHS) that if I ever have to go into hospital or, God forbid into a 'nursing home', I will be denied these supplements/medication which I need to keep me functioning.
I have found drugs offered to me by NHS for Fibro (which are often very expensive) have mostly been fairly ineffective, and/or had unpleasant side effects. It might save the NHS money in the long term if they would consider the possibility that Fibro sufferers might do better with intensive nutritional support and easier access to hydrotherapy, etc. , rather than going down the 'drug' route. This route appears to lead to the need for more drugs to counter the side-effects of the drugs already prescribed, until the poor patient's system becomes overwhelmed by drugs which at best are only partially beneficial, and, taken together, may cause more problems than the patient started out with.
Doctors should read the experiences of patients on this site!
Wishing you all the best - never give up hope, - and if we all raise our voices together perhaps Fibromyalgia (and its sufferers) will receive the recognition and consideration it/they deserve. Perhaps the reason why Fibro appears to have such a low profile in the medical world is because it's poor sufferers are usually too exhausted and 'drugged -up' (no offence meant here! I have been drugged up too to try to kill the pain!) to make an effective and concerted cry of help to the government to fund proper research in this area. Perhaps we need another stronger Petition to the Government.
Good luck and improved health to you all.
I am not taking any supplements for Fibro.
I do take folic acid daily and have B12 injections every 12 weeks, but that's for Pernicious Anemia 🐸
5HT , glucosamine, fish oils
I want to genuinely and sincerely wish you all the best of luck.
I need 50,000 unit of Vit-D per week so that's 1 pill a week due to my Fibro
I want to genuinely and sincerely wish you all the best of luck.
I also was privately prescribed 4.5mg of Naltraxone, ( low dose LDN ) and found this to be amazing, i don't know if you have heard of Dr Bob Lawrence at Dietary research in Swansea. I haven't had LDN for a couple of years due to finances but my FM is much improved. Due to me also having brain damage I can't remember dates but have written down somewhere. I have posted LDN queries and info before but had no response. Vitamins were also an important part of treatment.
Yes, Mack 59 - I take the same dose of LDN as you - it has been of huge benefit for me. But I had a struggle to obtain it privately - my NHS docs won't recognise it or pay for it, even tho it's cheap as chips, and safe!!! It's a disgrace that there is something out there that can help us, but govt. and big pharma won't pay for trials or research!!! Good luck to you. Continue to spread the LDN word, please! 😀
Tried to get on NHS but though my Doc had heard of LDN he didn't think he would be allowed to prescribe it on NHS. I am thinking of buying again I now receive pip, ( diagnosed with Brain Damage 1996 acquired from being hit head first by a car at 40mph in 1970 aged 10 ) was diagnosed with Fibromyalgia years ago also arthritis but offered nothing except Diclofenic which was my stomach didn't like. Dr Bob was a Godsend. A friend diagnosed with cancer ( multiple myeloma) found him whilst researching cancer meds.
I am given Vit D after my heart operation and my consultant said I should continue as my Vit D level is very low for some reason.
It is very common for Fibro sufferers to have low Vit d levels. If u r reading this and haven't had your Vit d level checked, it's worth doing. You're worth it! 😀
Forgot to say that a good diet is of course very important
Since my diagnosis five years ago, I was prescribed Amitriptyline from one 10mg a night to 30mg now. After a year, I decided in my ignorance that I felt better so I didn't need them. How wrong I was. My GP intervened and talked some sense into me. I don't even remember how I got back to his office on the day he called me.
I did humongous amounts of research on the fibro as suggested by my consultant. I have changed my diet to include as much organic as possible. Filter all my water and use a nutri bullet. I eat less red meat and stay away from all processed foods, bake my own bread and am an avid label reader. Losing weight ensued which took pressure off my joints and back and less sciatica. Also I looked into making my own moisturiser, much simpler than I first thought. Its not all perfect but trying to get it right by at least 70% of the time gives me a head start on life with less pain.
Last year was very bad. My young brother was diagnosed with Leukaemia, we found that the youngest was a bone marrow match so Rob had chemo and a transplant but unfortunately died the week before Christmas. Any emotional upsets both physically and emotionally can play havoc with fibro but if I hadn't got my regime I think it would have been much worse.
All of this is on going and since listening to the heartfelt stories of other fibromites and having a better understanding of my myself, I can hold down a full time job and also design and make Jewellery. My good fortune also was having a good consultant and a fab GP of thirty years, since retired.
My 60th birthday is coming up and I certainly don't feel 60 well most of the time, to lose a sibling has made me more determined to stay as well as I can. Mums just turned 80, she is of the same mind set.
I want to wish you all good health and do your level best to keep as well as you can.
Warm regards
Maxine
Also forgot to mention I take Forceval, a mega-vitamin once a day to help with my deficiencies. Asked my Rheumatologist recently about anti-inflammatory supplements for my R.A. as I don't tolerate NSAIDs well, but he was unsupportive of any type even though I brought in a list including fish oils, glucosamine and even turmeric someone else above mentioned that have been researched and raved about. He wouldn't prescribe anything which makes it impossible financially for me to get the rather expensive natural remedies other have reported success with. Rather unhappily I noted that if had asked for additional medicine he would have been happy to write the prescription, as if I need another medicine to add to my ridiculously long list of meds with their equally ridiculous list of side effects!
Oh, dear Bowie Chic, how I sympathise with you! I agree with you entirely . What has happened to 'first do no harm!!!' - How about asking for a second opinion, or putting forward a case in writing to suggest that it would actually save the NHS money to try you on supplements instead of giving you no choice but to take expensive drugs which give you side effects. You could ask them to try You on these supplements for 2 months - not an unreasonable request, I feel! And how about showing your rheumatologist a copy of this? I am sure he or she would be willing to be part of a cutting-edge treatment, especially if it proves to be beneficial to you. And yes, fish oils, glucosamine and high strength curcumin (turmeric) are all anti-inflammatories. Good luck to you.
I have been prescribed FORCEVAL and CALCICHEW+vit D for many years on prescription I was also prescribed Iron until my iron levels soared so the stopped it
All I have been prescribed is very strong painkillers which don't really work but I still take them too much prob ! I might try some supplements now thank you.
Good idea! Try starting with magnesium citrate at night, (dosage will be on bottle) and get your Vit d levels checked at docs. Good luck and all the best.
That's great thank you very much I really appreciate your reply most kind, Im so glad I have joined this site I have struggled for so long with the pain that I take so many painkillers my doc has never told me supplements could help thankyou
I want to genuinely and sincerely wish you all the best of luck.
I think it's important for us to take our supplements in the form that is most likely to be absorbed and used by our bodies. Otherwise, we are wasting our time and money. For instance, Calcium citrate is the best absorbed form of calcium per my doctor. Vitamin B12 needs to be injected or in a sublingual form (under the tongue) per many doctors and nutritionists. Any other way is pointless. And so on... We need to ask the right questions when we're told to take a vitamin or supplement. Our Dr. may not have all the right answers but we can research the topic or consult once with a nutritionist before wasting our money on the wrong thing.
Do you know that 500mg of calcium citrate is the maximum you should take at 1 time? So you need to take it again later in the day for the 1000-1200mg/day your Dr. most likely will recommend you need. Also you must take it at least 2 hours apart from from your multivitamin and iron. Do not mix iron and calcium! This makes it all more complicated but if you don't follow these guidelines you aren't going to benefit from taking these supplements. You might as well not take them.
I don't want to sound negative, but I do want us all to benefit from the money we spend on these supplements and the trouble we go to to take them. I want us to be healthier and feel better because we took the right thing at the right time as best we could. Cheers to your better health!!
Absolutely !!! You are spot on, and I agree with all you say, SueSz. You have obviously done a lot of research - as I have, and your advice is all sound and good. But it's such a shame that we have had to work and fight so hard as individuals to find all this out for ourselves!! This valuable information should be given out by health professionals. How do we get the message across? !!! How do we get more research done? So happy to know that you also are gaining personal health benefit from your research. Well done you, and thanks so much for the benefit of your experience.
You're right...this valuable information should be coming from our Drs. and other professionals and not left for us to struggle to find the answers. Imagine how many people don't know that they are even supposed to LOOK for any answers. I remember when I used to see a bottle with "calcium" on the label and thought I had found what I needed! But Drs. too often don't have the answers themselves and can't advise their patients. A sad situation.
It sure is a sad situation. I sometimes can't believe we are living in 2016! There is still so much to be done to improve our lives . Part of the problem I am wondering is that everything is so 'systemised' - and if you don't 'fit' the box, the 'computer says no!' I thought the essence of the Doctor/patient relationship is supposed to be 'partnership' and 'working together' for the patient's good. From the messages on this forum, I'm getting the vibe that it often ain't working. From my own personal experience I have learned the hard way to take responsibility for my own health, and not to accept everything doctors say as gospel. Doctors are overworked, and under a lot of pressure. Gone are the days of the family doctor when the doctor knew you and your family and your circumstances. I believe fibromyalgia sufferers should have surgery-based Fibro clinics - in much the same way as they have diabetes or asthma clinics. I am thinking of suggesting this at my doctors surgery, ha ha!. In this way, we would end up with nurses who have a specialisation in fibromyalgia, and who could join up the dots and give us more effective, informed treatment. What do you think?
Great idea! The nurse practitioners I know give more time and are more interested in seeing that the patients have the information they need and all of their questions answered. I often choose to see my Rheumy's nurse practitioner over the Dr. for my appointments. It depends on my needs at the time.
Iv,e been taking vitamins for a long time now ! Iv,e had Fibro for over 20 years , I found out that I was very low in vit D about 4months ago , I didnt realise how much difference vit D plays such a big part in ones body till I went on to a vit D site to find out more about it , they now send me e-mails every month about vit D & how it helps with other things . I have notice a difference since Iv,e been takeing them , with my Dr advice . I don,t think that Ive ever been ckeck before for vit D. So I was glad to find out about it . I don,t think we get the sunshine as much , like we used to have . that could be one of the reasons for it
So glad you are noticing a benefit!
Get Vit D3 on prescription
wow. That's been quite a thread
As a vegetarian it was recommended years ago that I take calcium.
1 multi vit. 2 evening primrose. 2 omega 3. 1 Turmeric. 2 kelp daily.
Does any one with fibromyalgia suffer with severe knee pain on bending and straightening
I don't bend lol, but I have had 2 knee replacement. I do still however have knee pain from the fibro
Yes, but mine is related to my arthritis. I want to genuinely and sincerely wish you all the best of luck.
Have been taking vitamin D for over 1 year after being told my levels were quite low ( for tiredness & low energy) but it has had no effect also take prostabrit for prostatitis & frequency problems both on regular repeat prescription interesting survey best regards Dentist
Have A/F on warfarin, and take the above as well to help with Fibro..Magnesium certainly helps with A/F INR checked regularly because of my diet of Vit K...it all helps
I want to genuinely and sincerely wish you all the best of luck.
I note Vitamin D surpasses other by far and I am not surprised.
I recently returned from Africa where I spent 2 years of continual
sunshine and most definitely had less pain and flare ups.
I take advantage of sitting in the sun whenever the opportunity
arises. I believe one only needs 10 minutes a day of direct
exposure.
could be but those with fair skin need to be aware of over exposure to UV light. Sadly I burn easily.
I also take zinc, glucosamine and chrondoitin, omega3 fish oil.
I have been prescribed vit d3, folic acid, b12 and iron in the past as I malabsorb. But since going gluten free it has massively improved.
I am still prescribed adcal and alendronic acid, as I have osteopenia, though my bone density has also improved.
I take magnesium following advice on here
Aloe vera advice from the osteoarthritis nurse
Krill oil for OA
Coenzyme I can't remember why but it does help my mood.
Black cohash for night sweats
And a generic over 50 multivitamin
Has anyone been able to get Magnesium or Q10 on prescription in the UK??
I asked and was told it is not on the list of allowed prescription...
Interested in if and how anyone managed to get it, and via GP or specialist?
Cheers,
A
-- keep smiling, especially on a rainy day ;-)) --
I take so many I rattle. I inject b12 weekly too. As well as irin, folate, calcium, vitamin d, magnesium oil, omega 3 and the other fish oil. Vitamin k2 and b complex. Without all this I would still be feeling very very ill indeed. They have given me some semblance of a life. My GP dismissed the deficiencies even when the hospital said I need them. Costs me a fortune. That's why I'm so grateful for getting the PIP.
That should say iron!
I only take amitrypiline and Co codermol does taking supplements help never knew about it please advise
I only have prescribed vitamin supplements and am monitored regularly xx
Iron tablets
Iron tablets.
Just started to take iron tablets daily. Interesting how many of us are taking vitamin D, which I started about three months ago,, not noticed any difference yet. How long before may show improvement?
I have pasted you the link to the NHS Choices cache on Iron Tablets below:
nhs.uk/conditions/anaemia-i...
I want to genuinely and sincerely wish you all the best of luck.
On vitamin D , Dr prescribed as blood test showed vitamin D deficiency
Taking an A-Z, Omega 3,6 &9 and 1000mg of vitamin C
I want to genuinely and sincerely wish you all the best of luck.
My GP has put me on every vitamin and supplement going because my levels of everything have dropped through the floor. He doesn't know why as I eat a healthy diet and drink lots of water. I put it down to all the prescription meds and lack of sleep.
I'm suprised that about one hundred people don't take any supplements. I know they can be expensive and with an excellent but diet you shouldn't need them. However, I have found magneseum really good and as a vegetarian I need to up my zinc and iron so I take a daily multi vitamin/mineral. Any excess the body just passes through. I always wait for the BOGOF or buy one get one for a penny deals! Lol
Patrick x
I agree my friend, I would have thought that only a small minority would not be taking any supplements!
Yes I take Magnesium multi vit Less vit k..on warfarin. .b12. D..manose
digestive enzymes. Probiotiv...and Mastica
I want to genuinely and sincerely wish you all the best of luck.
I am taking vitamins D2 ,800 and B12 ,5000
I want to genuinely and sincerely wish you all the best of luck.
I find taking regular epsom salts (magnesium sulphate) baths helpful
I tend to stick to a low carb high protein diet and sunshine.
I take Vit D (2x1000 iu) due to being diagnosed "D" deficient some years ago. I also work permanent nights which takes it's toll.
B12 injections, 5-htp, malic acid with mag malate and digestive enzymes.
