Fibromyalgia Action UK
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Started taking iron, pain has decreased drastically. Anyone else?

I have had fibro or myofascial pain for over 20 years. I was in constant pain. I had so many trigger points everywhere. My back, neck, shoulders were always spasmed, sometimes there was throbbing. My hands went numb sometimes, or just certain fingers. I had lots of migraines. I never thought of taking iron until late November. I figured that I got enough iron from my food. Doctors never commented on my ferritin being too low. No one asked if I supplemented iron. My ferritin was 23 in November. Low end of range is 10. The first time my iron was tested was in 2015, and I had to practically beg for it. I am now 50. A life time of symptoms and no testing of iron? It's been tested 5 times since, and ferritin has always been under 30, except once it was mid 40's.

Anyway, I started taking iron late November. I started feeling better in about a week! I had my iron panel re-done three weeks later and my ferritin had increased 15 points! Before too long I noticed that my back, shoulders, and neck felt better. They are no longer as hard as a rock. Then I realized I had less migraines. It's now been 7 weeks since I started taking iron. Why didn't someone recommend this too me sooner?

Has this happened to anyone else?

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I get regular blood tests from my doctor .. to keep on top of my iron , thyroid and diabetes ....

I go through stages of taking 500mg 3x a day for 3 months .. then I am fine for another few months then go back down and back on iron . I also taking vitamin D and vitamin B ..... I must admit though the pain doesn't reduce all I ever seem to benefit from is a little more energy ...

Good luck xx

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That's interesting. Wonder why your doctor doesn't keep you on a stable dose of iron so your levels are stable. How high does you ferritin get when you stop taking iron, and how low does it get when you start taking it again? Now that I've experienced the benefits, I'm going to continue to take iron and I hope my ferritin can get up to 75, if not closer to half range, where it should be.

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Erm I dunno the answers to any of what you asked . I usually go because I feel so tires and none energy. My haemoglobin is usually about 9 for him to start me on iron... I only recently got started on vitamin D because that was low so at first i took 5 a day for 50days .. then had to reduce to 1 a day but he will monitor my blood every 3-6 months to see if I need top ups or that .... I don't know what to ask when I go there for tests ... I just know that recently my vit D is a constant now and so is vitB but that is only a tablet and not the injection and I get taken off that one a fair bit ... and as for iron I tend to be on them for 3 months and I have to o back when I feel tired and that's when he tests me to see if I need them again .... xx

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Aude, have you thought of taking iron daily, so you don’t have those extreme ups and downs? Many people do, so their blood stays healthy. A 9 haemoglobin is very low, plus you have all of your bad symptoms. No wonder you end up not feeling well!

Ok. Being taken on and off vitamins, constantly up and down, does not seem like good medical care. What is the logic behind making a patient yo-yo back and forth? That is tortuous and cruel. Most people get their bloods up to a healthy level, and then take a maintenance dose. Not stop, start, stop, start. It is no wonder you’re swinging from feeling great, to feeling tired and no energy.

As for what to ask the doctor, just make a list of questions before your appointment. Take that list to your appointment and ask questions. I find this very helpful to make sure I am prepared before an appointment and to make sure I get the most out of my doctors appointments.

XX

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Well I once wrote to them and said all that I wanted to discuss and even when I went I only ended up getting help with one or two things then he said we will discuss the others once we resolved this . But their resolve is to get you to the level that makes you healthy ish then as you say stop the tablets ... I'm actually so fed up with it all .... all I get is well exercise .. do they even know how much pain I'm in wether I am exercising or not .. and they think the exercise help .. to me it makes it worse ... I'm now on a massive downer again .. which is pissing me off .. just took toffee for a walk to help clear my head but now my legs are throbbing ... thinking I'm away to have a soak in the bath and chill .. xx

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Hi ShootingStars, Did your doctor test your iron levels? I find at my GP surgery it is something that is not routinely offered and like you I feel like I am begging for a test. 🙂

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Yes. That’s how I know what my numbers are. I am fortunate that my GP will do just about any test I ask for. My requests always have solid reasons and symptoms and my suspicions of needing a test are often right.

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Hi ShootingStars Ive not experienced this but my son in law has and quite badly too, he has never had his routine bloods checked, I have said to him so often his gp is bobbins and change surgery. his gp didnt diagnose fibro I did and made him a private appt to see my rheumatologist who referrred him to Endocrinologist who then found he is coeliac, osteopaenic and chronic fatigue, his blood pressure is thru the roof but that can happen with too much pain,, it was a £120 well spent i think. I have to say to you over the counter versions of vits and mineral are a waste if money, they only contain a minimal amount of what we think we are taking the rest is additives, its always better to get a prescribed dose, also if you dont need extra vits you can overdose and believe me that is a terrible dilemna to sot out..

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That is the best gift a mother in law can ever give her son in law: better health!

I will have to disagree that only prescription iron is effective. I raised my ferritin 15 points in 3 weeks by eating two beef patties a day, plus taking ferrous sulfate (caused me some nausea) and vitamin c, which increases iron absorption. There are 10’s if different types of iron to choose from, and in different doses. I have since switched to a poly iron. No stomach upset. It does taste “heme iron”, to me, if I accidentally chew the capusule.

Anyone trying to raise their ferritin and taking supplements should get regular iron testing. Prescription iron won’t prevent overdose, but regular testing will. Because I previously took no iron and didn’t eat beef rarely once a month, aside from my testing at 3 weeks after the start of increased dietary iron, I will retest 6 months from that last test.

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I have heard that iron can do that and I’m so glad it’s working that way for you . Also found out recently that it helps with sleeping too . Hope it keeps working for you xx😇

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Thank you! Happy sleeping is the best, isn’t it?

Hey, how’d you get your emoji to work? I tried one the other day, it looked like it worked, but it was a square later on the computer. I have an iPhone. What do you have?

😀🧐🤓👁🏃🏽‍♀️🌹💫

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Ok. That seems to work this time.

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iPhone iPad glad to see they are working now xx😇🤗🤗👌🏻

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Me too! 👍🏼👍🏼

😊

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It’s lovely when you get something sorted isn’t it xx👌🏻👌🏻👌🏻😇

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