Is it normal to be in constant pain?

[J0hn88]

Hi all I was diagnosed with Haemochromatosis about a year ago now, I'm going every 4 months for my venesection but I tried to contact my consultant about the constant joint pain and abdominal pain was wondering if its normal for this? But it seams I don't have a consultant anymore ? I've had no help at all from anyone and a online forum is probably my last hope. I feel absolutely useless for my son as I'm in so much pain to play football or run around.

[alfiepdoodle]

have you joined the haemochromatosis society thay have a helpline straight through to nurses i believe , i’ve just joined but my packs at home and i’m away on holiday

[isi123]

Hello J0hn88,

I have hemochromatosis and it was diagnosed a little late 40's, when I already had some liver damage. In my particular case I do not have abdominal pain, but it is your doctor who has to study what is happening to you. What was your ferritin level when you were diagnosed?

Iron overload can cause joint pain, but you're a young man.

[radd]

John88,

Welcome to our forum, and sorry to hear of your constant pain. It can be an awful side effect of having long term excess iron levels.

Do you know your numbers now? Most aim for around 50 ferritin & transferrin saturation but are dependant upon age, other health issues, genetic impairments, etc. Four monthly venesections sound great for maintaining good iron levels. I haven’t been able to access my venesection sessions since last autumn!! Grrrr ..

We tend to get passed about bit because many health authorities have never set up actual haemochromatosis departments. Where I live I'm usually shifted between haematology and oncology 😳.

My hero product for joint pain which also has the added advantage of being an iron chelator is curcumin. Any antioxidants will help repair the oxidative damage which naturally reduces inflammation and eating an anti-inflammatory diet can help. Quercetin is another natural iron-chelating nutrient.

As alfiepdoodle has advised the Haemochromatosis Society is a wealth of support and information, and if you don't mind taking all public there is a FB chat group. This forum offers anonymity but as always remained strangely quiet.

I hope you feel better soon.

.

pubmed.ncbi.nlm.nih.gov/165...

[J0hn88]

Hi all thanks for the replys my levels was about 820 when I started the last appointment was 320 so it jumped back up in January

[isi123]

As radd says, you have our support. Considering the number of people who have this disease and its consequences, the forum should be more active.

[JigFettler]

Its complicated..

What was your diagnosis Ferritin level?

What is the cause of your Haemochromatosis?

If you are at 320 now, why are you having 4 mthly VS?

4 mthly is an odd one, normally maintainance is 3 mthly. But only when you hit a Ferritin of around 50.

In any case - your GP should be involved sorting out pain issues. What does your GP say?

If you no longer have a consultant, then definitely your GP is in charge.

Jig

[J0hn88 in reply to JigFettler]

Sorry it is 3monthly (12 weekly) my wife spoke to a specialist yesterday on the phone at the hospital and in Jan before my ven section it was 320 the doctors don't seam to be helping me much they keep sending me for blood test checking for different things, now I'm at the point where I have no where to turn to or ask but glad I found this forum as I have signed up to the society site

[JigFettler in reply to J0hn88]

What was your ferritin at diagnosis?

Have you been given a cause for the iron overload?

320 is within normal uk range! Upto 400.

At that level no symptoms should be felt, unless you started out with a very high ferritin. Over 1000 for sure.

Mine is inherited, diagnosis ferritin 730

16 VSection to get to level of 50

I had and have no symptoms.

Jig

[J0hn88]

At the start it was 820 and had to have weekly visits sections, it's a genetic I think it's primary doing the weekly ones I was ok but after it's when I started going down hill