Body shaking after venesection

A feature of haemochromatosis, I'm afraid. No-one should be promising you that it will all go away once you are de-ironed, i.e. <50. I have been de-ironed for 20 years and still have terrible fatigue and body pain. With 3 monthly maintenance vx, I remain in the 20s - gets worse when I go higher.

It works for some and not for others - there are a lot of different bodies out there. And you are only just starting the maintenance phase - it might get better for you - no promises.

CoQ10 and Vit E have been recommended to help repair the mitochondria that has been damaged by iron overload in your cells. I have also got some benefit by taking 100mg of aspirin to thin my blood and it seemed to have flushed some old iron out of my cells. I felt lighter and walked faster. No research to confirm that - just me.

If I sleep during the day, I don't want to wake up and do what I have to do. The act of eating seems to keep me awake, but can be dangerous. Nibbling on raw carrots, celery, corgettes, cucumber - those kinds of food would be safer. Not that I practice what I preach - can be too tiring to prepare, but I ban biscuits etc from the house so that I don't succumb. I try some crackers made solely from seed with some riccotta cheese - protein with carb less fibre.

I had to discontinue work at the end of 2003 and that helped - I have less to get through during the day. I just manage the basics and sometimes not even that. I have to be prone by 7.30 - it used to be earlier. Eating sugar and starchy carbs foods send me to collapse stage as my body cannot digest them. Once again a feature of GH (there is research out there confirming that issue).

Just keep having those vx and find what works for you, even if it just a little bit. This sounds depressing, I know, but having haemochromatosis is better than having cancer. 😃

hi sheryl

Thank you for your reply. I work mornings for a well known company start at 8 finish at 12 ive been doing this job for many years, since being diagnoised with haemochromatois i have explained to the work place my symtoms and i dont take anytime off from work, but after me explaining to them about my fatigue they are changing staffs shifts and made me go to the company doctor because they wanted me to work afternoons, i never felt suported by my work place but the report was all in my favour and they have kept me on morning shift. now they are saying everybody has to work a full day on bank holidays including me, i just could not work a full day and they are stressing me out with worry which just makes things worse its just as if the report from the doctor has been ignored im not saying i wont work bank holidays but i can only work till 1 because of how i feel sorry this is so long & drawn out but has anyone had work problems with there condition

any replys would be grateful sorry for spelling mistakes

allycat

Sorry for delay. I have had a few appointments lately and even one a day writes that day off for me.

Have you spoken to your Human Resources Officer and explained your position? I found I was in a very vulnerable position, having to push the boundaries of my employment hours. Venesection days had me travelling across town for a vx meant to be 8.30am but often delayed for various reasons, then getting to work about 10am or so. Even though I worked extra hours at end of day and taking work home to make up for it, there were always people who thought I was getting something more than them. I did not make a point of going around talking about my health situation, but if they had asked I would have told them. My supervisor was not empathetic which did not help matters. It became a source of extra stress for me.

I would suggest that you try to work those extra hours and if you become ill, collapse, go home sick then they should get the message. Well, you told them, didn't you? How many bank holidays are there for you to endure?

Another suggestion I had forgotten about - chew gum (it is the chewing action that helps), and in particular make it peppermint gum. I think even having a sniff of peppermint essential oil will help as it wakes up the senses. A little walk around even though you feel welded to your chair helps too. It gets the blood flowing. When all I craved to do, as I was going to sleep with my hands on my keyboard creating spreadsheets (what have I done?), was to crawl under my desk and go to sleep, I made myself get up and go for a little walk, slapping my face to get blood moving. Also go for a drink of water. It was killing me, forcing myself to keep going.

My job was important to me financially as my husband was no longer working, apart from which I expected to work past retirement age. Then my husband got Hodgkins Lymphoma so I had to stop work, which saved my life, I reckon.

hi sherl

Thank you again for your reply, Human resorce know everything thats going on i think my manager is just being arkward, my work is in a store which im on my feet and heavy lifting which i dont mind i like work, the report that came back from the doctor stated they should be supporting me and that why they kept me on the morning shift she also said in her option its classed as a disability in work terms and they should be seen to be surporting me. im not one for going on about how i feel but when they want to start pressuring me with working more then my 4 hours aday it very stressful, im willing to work bank holidays but not 6 hours only 4 hopefully it will be sorted shes calling me in next week to discus it with me, i dont think they can false me to work a full day they have letters from my own doctor as well, but they still push & push,

sorry once again for being so long

allycat

Hi Ally, Sorry you have to go through this, Venesection you know is the only way to reduce iron overload quickly but, if you have to give blood often, the loss of blood volume (& if your levels drop too low) you can feel fatigue, also going through a chronic process can be draining physically & mentally....let your Dr. know as it could be due to low blood sugar or low blood pressure, two things easily fixed or maybe you can change the time of the month you do venesection(depending on your sex & age)might help...Best Wishes💒🌈☮🍀❤

Hi Ally - yes, the problem often lies with a supervisor who feels miffed about not being allowed to be in total control. I would not have been able to do such physical work that you are doing.

Fatigue is the biggest feature of haemochromatosis no matter what you do. 21 years later and been on 3 monthly maintenance vx for years now, Hb, blood pressure, and others all good but I still cannot go past 7.30pm. I try everything I can discover to try. The damage has been done because of 9 years undiagnosed with severe symptoms. I feel good for about 13 days after vx, then the heaviness and fatigue sets in and I am walking through quicksand.

Having said that, some people don't have that problem at all but they have different circumstances.