Hi Brinski, check Sully's feed..I have a lot of the same symptoms, girl getting up in the morning is tricky. I try to stretch out my body, hands and feet before I hit the floor. I don't have Psoriatic Arthritis but Osteoarthritis with Pustular Psoriasis hand and feet, I'm kinda in remission right now, but I do have to be very diligent about taking care of my skin.. Psoriatic Arthritis is horrible, so sorry. Are you seeing a Rheumatologist?? Also maybe a Dermatologist would be able to help you if your skin and nails are having problems​. When my feet are bothering me I put Vicks vapor rub on them with white socks and wear them to bed..We have to find little tricks to help ourselves feel better. Heating pad, ice packs, stretching, knee braces, elbow braces,etc. Yeah we might look crazy but we're taking care of ourselves.. I wear compression gloves to provide support and protection to my hands..It's the little things. I just got diagnosed with Hemochromatosis but I have been living with a lot of pain for some time now, I can't take any medicine because of my Liver, so I just slap a smile on my face and deal with it.. it sucks but hey we still breathing, right? Are you from the UK? Please let me know how you are doing.. Take care of yourself.. Blondiegirl*

No I am Australian. Yes, I get up and go to work and come home sometimes feeling like I am getting the flu. Pain is a daily event. I really thought it would disappear when my levels became normal. My Psoriasis is not to bad. I have thought this was Hemo as well. Have yet to see Rheumatologist. Don't you hate it when people who know nothing about Hemo say on hearing you have it. Well, you have your blood taken, no big deal... I have had that said a few times. These are people who don't know what they are talking about. If only I could share my pain with them for a day. I try not to think about the pain and just get on with my day. I find moving around helps with my feet. As soon as I sit down for any length of time, on getting up I walk like a bent over old lady. I found out I had this disease around my 60th birthday. Its good to talk to people who know what you are going through, because they are too. You know, it sounds like the Arthritis and Psoriasis, does not matter which kind are linked to this disease. ??????

Hi Brinski, I had a wonderful friend who was from Queensland.. she passed away last year, it was Heart breaking.. Sorry to hear that you are dealing with such insensitive people,I hear you though. I get " well you know that the liver can rejuvenate it's self". Like I'm a friggin Starfish. haha. I haven't​ told to many people it's hard to describe the pains of Hemo with out sounding Dramatic, which is what a good friend called me.. ps. I didn't speak to her for awhile.. We finally had a conversation that ended with her in tears. I say Educate your self before running your mouth.. I think a Rheumatologist would really be helpful to you, I'm seeing mine in early May, he is gonna be blown away by my Hemochromatosis diagnoses. I live around the Chicago area so I have access to some​ pretty good Doctors. How is health care in Australia?? Let's keep a positive attitude, I do hear you about the old lady stuff though.. no no no .. Let me know how you are doing, I'll send some prayers your way. Take care, Blondiegirl*:)

I live in Victoria. The bottom of the country. Health care in Australia is pretty good. We have Medicare. This has been around since 1972. They used to pay about 85% of any medical bill. It has decreased over the years as different govt. come in. It was a Labour Govt who introduced it. I suppose that is your equivalent to Democrats. The Liberal Govt alias Republicans when they have come into Govt have slowly eroded the refund. We have a waiting list for people who have what they term as elective surgery. So if it is not life threatening and you don't have private health Insurance you go on the waiting list. There is always uproar (politically) about the waiting lists. I have private health Insurance. I find that you still pay out of your pocket. My husband had a stroke in Feb. If he went in as a public patient we would not pay anything. They rang me to ask if I would register as a private patient for him. I said we cannot afford any more medical bills. Last year was expensive. They said if you do they promised we would not pay anything. So I agreed. You can nominate to be either. I have actually been on a Hemo drive, to bring awareness. I wrote a story of my journey for a magazine. To my surprise they rang me and have said they will print it in May. I think the more people are aware of this the better. In Australia, you are not automatically tested for the disease. I was told by a Doctor I got HRT from, that it is tested in many other countries. HRT hid all my symptoms of Hemo. I emailed the Doctors I got HRT from to bring awareness. I told them that they were in the perfect position to screen women who are going through menopause for this disease. They just might save someone's life. The Doctor emailed me and said that they would consider doing this. After all its just another tick on the box.(blood test)
So I never hold back in telling people about this disease. I don't go into detail about pain etc. I just tell them to have a genetic test. More people have this than they know. I see my GP this Wednesday. I will ask to see Rheumatologist to be properly diagnosed for Psoriatic Arthritis. I am the type of person who needs to know, so I can deal with this, and what do I have to do to help myself. I really am not depressed or anything. You just get fed up of having pain. Naively I thought that once my levels were back to normal everything would be OK........

Hi Brinski, So sorry to hear about your Husband. Hopefully no permanent damage has been done. That's wonderful that you are going to be published, I would like to see your writing if possible and thank you for being a Advocate for us Women.. If I had been tested 10 years ago I probably wouldn't be in the shape I am in now. Hind sight is 20/20 I guess. In the USA iron serum ferritin are not routine.. They will test your Hemoglobin with a CBC and of course if it is low then you are Anemic, women seem to be plagued with low iron in the USA.. bad eating habits and poor diet.. I was diagnosed with Severe Osteoporosis also in September when I had a DXA scan, I had lost 2 inches in Height.. Thank God I'm​ tall. My Mother and several Aunt's have Osteoporosis but insurance would not cover DXA scan unless you are over 62 year.. a little to late for some of us. I wish my twat Doctor would have been more active in my care. but I guess it's my own fault for not pushing the issue all those 10 years ago.. Now I tell younger women get your calcium and your bones checked. I am starting my weekly phlebotomy sessions now, so I hope I can get some relief. I'm sorry that you are still having pain and symptoms. How long has it been since your maintenance started?? You are kinda a Prototype for me and I would appreciate any information you can give me as I start my journey.. Let me know if you get a Rheumatologist, that is the Doctor who can really help you if you have Psoriatic Arthritis.. which I pray that you don't. Keep me posted about your article. Great job!! May the Universe surround you and your family with love and healing light.. Blondiegirl*

Hi Blondie girl, I saw my Doctor last Wednesday. Yes he has diagnosed Psoriatic Arthritis. Has put me on Methoblastin 1 tablet a week and Megafol 2 tablets a week to be taken same day. Methoblastin must be taken day after. The medication is to help slow down the arthritis and give pain relief. This is also consistent with another Doctor I saw a few weeks ago. I have 2 tissue tears in my left shoulder so I was claiming on work cover. This has now been rejected as I seem to have a degenerative disease called arthritis. I think I saw someone else say that tissue tears were common with Hemo. I have not seen that listed anywhere but who knows. I said to my Doctor I thought that once all my iron levels were in normal range, my body would be back to normal. How naive I am. The Psoriatic Arthritis has just taken the place of the joint pain caused from the Hemo. You do know that if you are ill at any time, your Iron can increase. This happened to me a couple of times. Once it goes up, does not come down so easily. They would not take my blood weekly as they thought it would be stressful on my body and cause to much fatigue. It was tossed around a bit to say how often. Mine was fortnightly 500mls. Did you know your body makes 4 times the Iron as everyone else? My maintenance only started from last November. I am being tested every 3 months then its decided if I need to have blood taken. Tell them if you are finding once a week to much. You have to stay functional. If it took 18 months for my levels to come down with fortnightly venesections, then you might get to normal range in about 10 months. Good luck, hope your pain is minimal. You sound like you are trying to stay positive. That's a good start. I take myself for walks in the forest, its good for your soul.

Hi Brinski, I hope you will get some relief with the new medication that has been prescribed to you. I can't take any medicine due to my liver issue. Just trying to tough it out as best I can. Did you hurt yourself at work?? The shoulder tears? I'm​ only working 2 nights a week, I'm in the Restaurant Biz it's a very physically demanding job.. My Husband wants me to quit my job and go on disability. After my two nights of work I can barely walk and lift my arms the next day. I feel like I'm pain regardless so I should keep moving.. Thank you for the support and guidance, I feel alittle better knowing others have gotten through this craziness.. I sent a letter to all my direct relatives ( aunt's,uncles, cousins) and was met with some pretty interesting comments..like I'm making this up. I feel like I did my best to make my family aware what​ they do with the information is up to them I guess.. My Mom is going to be tested, my Father died in 1962 age 27 hunting accident also have 2 brothers and 1 Sister. They are my biggest concern. Do you have any Siblings with Hemochromatosis?? I have read that my Son will at least be a carrier, do you have any children? What's going on with your Magazine article?? I would love to see it when it comes out.. maybe online.The Forest walks sound wonderful.. I love Nature. Sending you healing thoughts.
Take care, Blondiegirl*

I have 3 brothers, 2 have the Carrier gene 1 has C282Y. When I found out, I thought it my moral duty to let as many family members know as possible. Some shake their heads and think nothing of it, while others took it seriously and were tested. I know of 2 cousins who have Hemo now as well. One is a female about 40...... So she can now deal with it before it becomes a problem. My brother knew for 12 months before I found out and it was not because of him. He told no-one. One of my brothers was telling his daughter he had nothing wrong with him. She asked her mother to see the report. Ahh idiot, you have the carrier gene. My brother, I don't think knows much about his disease. His was found out by accident. He was in hospital for something else, when it was detected. Not sure when the magazine article is coming out, have yet to hear from them. They said they would contact me. I think the tears in my shoulder are work related. The independent Doctor WorkCover send you to, does not. He thinks it is Genetic, age and degenerative body.. I have sent his report to my Dr and the Orthopaedic specialist asking for their opinion about his report. Depends on what they say if I appeal the decision. Shoulder has not been to bad the last couple of days. Depends on what I do. I work in aged and disability care for a Council near where I live. Have been doing that for 23 years. Only 1 of my children have been tested, he is yet to hear the result. My husband is not a carrier. My Dad died 1989. age 62. They were not testing for this back then. He died from Heart failure. He may have been a carrier or had C282Y. Both my parents had it because I have. I am so fortunate that my liver was mildly compromised. It is better now. You and I, our levels were nearly the same and yet you have the liver problem. Everyone is different. I know the pain you are in, not even the Doctors understand. My feet would kill me. Mornings they still do, or if I sit for at least 20 minutes. Then it takes awhile to get normal. Best to keep moving. You know when you read other peoples stories, many say as you did that they have Psoriasis and arthritis, just different forms. I told my Doctor that this has to be linked to the Hemo. Take care.