Just been diagnosed & wondering if my cramp in legs & feet are symptoms of the illness

Hi Dillinger ,

I also suffer from aching joints so know how frustrating it can be

I'm still waiting to start my treatment & dreading it as have heard it affects people in different ways as so does this illness

Thank you for your reply & wish you all the best with your treatment

No your through the hardest bit!you are lucky to get diagnosed.!it shud b plain sailing now - it's just getting sorted with vene-section.we are a family of 4 with HH we all suffer from cramp!all in our hands & feet and I get the worst kind from my thigh down - it is excruciating. I nearly always get it when I fly & always when I haven't drunk enough water & I am tired.see if you can get started with vene's as soon as you can - you will feel a lot better in many ways & you will be fine.

Thank you 😘

TBH I think once I start having venesections

I will learn a lot more about the illness

That's the worst part I think is just being diagnosed & not being explained about the illness or symptoms

I was just given a link to read

Though my DR is very good I think it was a case that they are under a time limit with each patient

TBH I was lucky to have found out now

As I've been suffering for a lot of years but never had answers to as why

Now it answers a lot to the different symptoms I've suffered

I also suffer with what I describe as twitching leg syndrome in my thigh all the way down

I have no control over it when it starts mainly when relaxing in bed,

Now I think it may well be connected to HH as well as the cramp

Hopefully when I do start my treatment it will help reduce all these horrible symptoms

I had a blood test & my Dr has booked me an appointment with him as obv there was something wrong with my results

I'm hoping he'll let me know then when I start my vene sections

Thank you sheryl

I've googled it & it was very helpful as gave me answers to a lot of what I didn't realise was related to the illness

Like for instance hair loss in my eyebrows,

Brittle nails & my breathing difficulties

It was very helpful thank you

However, I put continuing fatigue and body pain to the late diagnosis and the deep down damage to the cellular structure that must have been caused.  At a conference I attended, a professor from Ireland said the fatigue was caused by damage to the mitochondria (which sounds like my thinking).

It is said that joint pain is not relieved by venesections.  I had some relief when I started using 100mg aspirin daily which thinned my blood and made venesections easier, and I feel, unclogged the cells in my muscles of old stagnant iron.  (my words - not official).

I was also found to be very low in Vit D, despite taking double vit D tablets, and my gp put me on to Bio Ceuticals D3 Forte.  My vit D blood levels rose immediately.  Magnesium is also supposed to be good for muscles too.

I have also eliminated sugar and starches from my diet (well, mostly!!!).  Sometimes I have to be polite and eat some home baked goodies.  But actually, I do feel like I have been hit by a truck afterwards.

All we can do is try these things that are not harmful to us.

OMG , I've just started to get pain in my groin - hip

I've also been diagnosed with very low vitamin D deficiency & currently on therapy

I'm taking fultium D3 tablets which don't seem to be making any difference

My main problem along side with having HH is that I have other incurable illnesses

Crohn's disease , ulcerative colitis & ibd

So my dietary is complicated as can't seem to find what I can actually have without affecting all my illnesses

As for pain relief the only medication I can have is paracetamol

Aspirin & any anti inflammatory have massive affects on my crohns

I'm allergic to codeine & morphine doesn't have any affect

I've always suffered with my bones as seem really brittle / weak but I had put it down to the prednisone steroids I've had to take over the years when I've had severe flare ups with the crohns but now I'm wondering if it's due to the hemochromatosis causing all my pain & problems

Oh you poor dear - Crohn's disease!  That is really difficult.

In my early 20s I was diagnosed with ibs but it was really 6 duodenal ulcers which I eventually found out was caused by Helicobacter Pylori which thrives on iron.  It returns every now and then and I have to repeat the treatment.

Ask for an x-ray of your hip with the hope of catching any damage early, or they should be able to identify what sort of damage you have and what could be causing it.