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Diagnosed (20) years ago, but now its hitting with a vengence
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niecy8492 posted:
Hello, I am new to chatting in a community. I was diagnosed (20) yrs
ago, at that time there was not information in the medical world. So for
(20) years I have suffered from various aspects of this disease. Chronic migraines, ear pain, joint pain, not sleeping a full night, I could go on and on...
This recent bout has affected my entire body. I ache all over, at first it was in my joints, then progressed to my muscles. I looked up the symptoms of fibro.. and it appears I have (58) out of (60).
I am self employed, so calling in sick is not an option. I have porphyria and hemochromatosis along with fibromyalgia. So I thought at first the pain was from an underlying condition of the other (2) but no... we had to add (1) more genetic disorder. Yes, I am being sarcastic, I want to feel better. I too was a super mom, I was fortunate I was primarily able to stay home with our kids. I homeschooled and kept an spotless home. My friends use to always say they could eat off my bathroom floors, and many wondered how did I do it? Well after many years of hospitalization I had to let it go.
The medication is seeming to takes its sweet time in relieving the pain. I had a great day yesterday, so I cleaned my house, then today,, well,,, I am paying the price. Does anyone have an idea on what works for you? I need some relief..
Thank you!
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msmary15 responded:
After 20 years you probably have more answers than I do, but I know the feeling that '.will this end'. My thoughts and prayers are with you. I try quiet meditation with Reiki music before I get up in the morning. It feels good while I'm resting. It's the rest of the date I haven't yet worked out. Resting a lot this AM I'm going for a 2nd opinion at a teaching hospital in the PM and I'm concerned I'll be wiped out .I can't find a support group in my area. so opening this site brings me comfort knowing I'm not alone. I hope it does for you too.
 
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booch007 responded:
Good morning,
You have a bit on your plate. Hemochromatosis is a tough but treatable thing. The iron stores in the muscles though can be a root for symtoms, I assume you go for phlebotomy.....

We follow patients in cardiology as well as the iron collection gets into the heart. Got an MD for that?

I think the bigest thing with this mess is accepting the great and active people we were is over. The new people are just as nice and loving and fun, but we are not the "super heroes of the past"

Loss of self is a sad realization. I have had many a cry. But the new me is OK. I do my best, I have a housekeeper to keep the place livable and I work full time as well. Work seems to help me with distraction in a bad morning and then the meds get me to a better place.

Learning the rules within the new body you have takes time. Be be sure you are doing all you can to be better. Diet and hydration, supplements and caring for your other diseases. Life will never be pain free for us, but it can be better and a life can be obtained.

I hope you have good days more than bad. Good doctors by your side. I think if I had those issues i would be at a large teaching hospital to be sure I am cared for on the cutting edge of what is happening in the field. I might even take a trip to the MAYO clinic or Cleveland Clinic to meet with the best of the best.

I am a researcher to find who is top in the field and then get a plan from them, get back home and present the plan to my locals....then once a year a trip for follow up. Your persistance at this point will give you longevity. Hugs from me, I wish I had more to offer you..........good luck, Nancy B


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