Joint Pain

Everyone reacts differently to having high iron and the following is my experience:

I was diagnosed 1 year ago at age 40. I had sought out medical attention because I had basically gotten to the point where I couldn't lower myself to sit on the ground without being in immense pain. My whole body ached. Mainly my hips and lower back but I also had pain in my ankles, knees and elbows. My fingers also had swollen joints. My pain was constant there was no relief without ibuprofen.

Now this will surprise you. When I was diagnosed my ferretin was only 264 but my saturation was 94%. I was falling asleep on the lounge every night and I was a healthy normal weighted active person (prior to my decline in health).

I had my Mirena (female contraceptive) removed and started menstruating again and also had just 4 venesections and I am back to running and doing weights 1 year down the track. I am so thankful my doctor ordered that blood test! I am homozygous C282y

I still have mild pain in my hips but I find rolling out my leg muscles really helps me and basically following a really healthy diet and drinking lots of water. And of course monitoring my levels.

My entire spine is affected, I have so many bone spurs they block my nerves as they try to exit through the vertebrae causing neuropathy pain. I also have inflammatory arthritis all along the spine causing my spinal cord to be literally crushed in my neck. I started my painful journey with low back pain in my late 40s and was surprised by the amount of disease on my first MRI, that was when I found out that some hemochromatosis patients also get horrible arthritis from a related genetic defect.I have been treated in a pain clinic since my first MRI with various injections- the most succesful being epidural steroids to reduce swelling and inflammation in the spinal cord area. I have also had good success with SI joint injections. I happen to respond well to TENS units so I have two spinal cord stimulators- one for my lumbar spine and one for my neck- you have to play with these to get the stimulation just right, but these are little miracle workers.I have to say heavy duty narcotics are NOT the way to go, my original pain docs got me hooked on vicodin and later dilaudid, that was unnecessary and unpleasant. I am now on belbuca, a sublingual form of buprenorphine and it works great for the pain. I take a number of drugs for the neuropathy pain and also just the chronic pain in general that round out my regimen along with a presciption cream( gabapentin/prilocaine/lidocaine). The other meds are memantine( a ketamine like medication), oxcarbazepine, methocarbamol( muscle relaxer for those pesky muscle cramps), mexilitene ( an oral lidocaine). This combo saved my life! I was a total vegetable on the damn dilaudid and still in pain! Now I have minimal neuropathy pain and I am going to the gym, taking Pilates, Tai Chi, yoga etc. BTW I am a board certified Pain doctor myself....