High ferritin and muscle pain question

[raaf]

I need some advise please. I was diagnosed with fibromyalgia 20 years ago. I had my iron checked and ferritin keeps on increasing while the rest are normal or lowish. Results: Ferritin is 432 ng/mL (above the normal reference range of 20-250 ng/mL) Iron 19.7 (range 11-31) Transferrin slightly low 2.0 (range 2.2-3.7) % saturation 39 (range 20-50).

According to our lab here in South Africa the ferritin is high and my GP says it is high even though some countries see anything below 1000 as ok. But I noticed something very odd - as the ferritin increased so did restless legs end muscle pain also increase. Coincidence? Wish I knew. A few years back with ferritin levels at 800 I started donating blood and when ferritin was below 300 the fibro pain was much less as well. Very odd - has anybody else experienced something similar even though the ferritin levels seem to be not so high? Anybody noticed increased joint pain, increased restless legs at night and increased fibro pain as the ferritin levels rise? I am just trying to get my head around this - could be all just coincidence. Any comments on the iron test results?

[Kat791]

Hi,

I haven't experienced this myself, as my iron levels are actually very low, but high ferritin levels are known to cause joint pain, weakness, and fatigue. Also, have you been tested for haemochromatosis? This is a genetic condition where ferritin levels slowly build up and become too high. If you haven't been tested, I suggest you ask your doctor for testing, as it is really important to get treatment if you do have the condition. Hope this helps.

[keokar in reply to Kat791]

Hi kat791 I found I had very high ferritin in 2019, and had a test for haemochromatosis, which was positive for genetic one, as they have 2 types. It causes muscles pain and bone pains in hands and legs, and extreme tiredness, which with fibromyalgia, you have anyway, so double trouble. The only treatment is blood letting, till levels come down, then maintained with blood test. Ask docs about it, as high levels as get older, causes problems in body. Take care. Karen.

[raaf in reply to keokar]

Hi keokar

Thanks for mentioning about different types of haemochromatosis. I did not know that and will look into it

[keokar in reply to raaf]

That's ok raaf, there's two, I have the dna type,as parents must of had it, and the other, just something you are unlucky to get. Hope helps and you can get to docs see what they say. But you definitely get more pains in joints when levels high, and more tired. x

[AllthatGlitters]

hello my ferritin levels are very high - I am a Haemochromatosis carrier, which I have been told sometimes come with symptoms and no symptoms. I am symptomatic which explains my very high abnormal ferritin level. You need a genetic test for this which the GP can refer you for? Have a read up about it, some people need to give a blood donation to decrease the iron levels within the body x

[raaf in reply to AllthatGlitters]

I now vaguely remember that a Dr told me years back that I also am a Haemochromatosis carrier, but they dismissed it as not important. Now that you mention that it may cause symptoms - I will look it up again and perhaps ask for a re-test. Thanks a lot!

[AllthatGlitters in reply to raaf]

have a look at the Haemochromatosis website it’s pretty useful and there is a nurse who can help you on the site too x

[Elaine200756]

Hi raaf, I'm so sorry I can't help as I haven't experienced this but I think its interesting too. From your symptoms the Ferritin levels do seem to be associated with your pain levels. But as you say, it may be coincidence. Im interested to see if other people have the same experience xx 💕🤔

[saj01]

Hi, Don't know if this is of any help to you but as I wasn't sure about ferritin levels I looked it up. It said high iron can cause high ferritin... which is inflammation, so maybe there is a connection between the two.?

Take care x

[Dizzytwo]

Hi there , you say you feel the fibro pain increase or decrease with the level of your ferritin blood levels.

From what I understand (I have few friends with this issue) high ferritin levels can cause pain, particularly in the joints. So that may be what your experiencing pain wise. Not fibro pain.

Fibromyalgia pain is not known to effect the joints. And the jury is still out on it causing inflammation.

Momo

[raaf in reply to Dizzytwo]

Thank you for the reply - I did not know that fibro pain is not known to affect joints. I assumed all the pain is just fibro, so maybe there is a connection with ferritin levels.