So sorry you are going through all this, could your doctor come up with a different pain management schedule? Please dont start drinking again you will only feel worse. You are in my prayers and I so hope you can get some relief. Dont give up. X

I understand the joint pain thing. My hands hurt all the time! Unfortunately I dont have any suggestions at this time but I do not recommend percocet. I like to drink and I struggle with not drinking. I don't have cirrhosis of the liver though just liver damage. Please dont give up. I will be going to my doctors again soon and will ask about the joint pain. My doctors are extremely helpful. I wll let you know what I find out. Stay strong and know you are not alone!

Have you tried natural ways. I.E. see a chiropractor you might be majorly out of allignment. Also see about adding supplements like fish oil, flaxseed oil, glucosamine and chondritin with msm and Super Cissus (hard to find... goto bodybuilding.com). When I take these in high doses prior to finding out about HH I felt like the tin man in the wizard of oz being oiled!!!! ;)

Don't go back to drinking...I drank everyday for 2 months prior to finding out I had HH to deal with stress at work and pain. Not worth it. I'm back in the gym and feeling great. Also hitting the hot tub 4+ times a week helps alot too.

Good Luck and be strong!!

I've been dealing with this for 21 years now. I had extremely bad joint pain in the beginning. But it is much more manageable now. However, I had to start thinking outside the box to avoid dying from pain and medication. I recommend a balance between contemporary medical care and alternative treatment. You obviously need your MD and Internal Med Specialist, but at the same time you can benefit from Chiropractic care, massage, acupuncture, and especially self-treatment: low impact exercise, Tai Chi, swimming, Qigong, Yoga, meditation, and walking. Don't discount these alternatives. There is in fact much research to support their efficacy. Keep fighting till you find the solution that works for you. I wish you the best of luck.

I don't think I can understand your pain exactly. My iron levels are not so very high as yours. But, I was in so much pain one time that I filled the tub with cold water in the middle of a cold winter's night and got in. I thankfully later found out that I was in a state of inflammation because of diet and food allergies. Vioxx and celebrex were my DOC's until I found out how the side effects can be very bad. Of course, pain pills have really tough side effects, especially on the liver. I have had success with tens unit from the chiopractor, epsom salt baths, hot and cold packs. Maybe you could find a therapeutic swim program?

@rodney, I TOTALLY agree with you! I constantly look for, and discuss with my hemo, any natural or alternative therapies to 'compliment' standard treatment.

I really think that the experiments I have tried have added to the benefit of my twice weekly phlebs. My ferritin has dropped from 10,363 to 299 in 13 months. I was reduced to weekly phlebs about 7-8 weeks ago. WooHoo!

zzzzzzzz

I have long thought that the joint pain, hair loss, choking, etc... are all a general result of the autoimmune system going haywire. I don't see any relationship between my ferritin levels and symptoms. Stuff just seems to happen, regardless of how high or low my ferritin is, or the barometer for that matter. The one thing that makes the biggest difference is rest. If I don't get a good night's sleep, or if I overdo it, all hell breaks loose in my body. I rarely miss an opportunity for 8 + hours of sleep, or a deserved coffee break.