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karina77 (@karina77)

Working with a Chronic Illness

Just Want to Talk | Last Active: Apr 9, 2019 | Replies (13)

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@sundance6

Karena, I understand a really feel for you. I have followed This Mayo Thread or whatever it is called now for several months now looking for help myself. Last July I came down with what I still feel I Lyme Disease. But after chasing it around with incompetint doctors in my state, New Mexico, rated last in the country, no one would give me an exact diagnoses.
So I have reseached it and many thinigs that fall close to it. Chronic Fatugue, West Nile Virus, Fybromyalgia, Lupus and many others. Lady Gaga is the Leader in the Fybromyalgia right now. They all have very similiar triats.
One of the most comon I have found is REST, REST& MORE REST!. I know that my doctors and I are masking many of my problems or hurts and soreness with certain medications that allow me to conduct a somewhat normal everyday live. But other than me skipping a med at a certain time that will put me down as you describe is the not getting rest. I am 72 and have been an active hiker, fisherman, skier, played golf for 65 year and many other things. I tried playing 9 holes of golf the other day. I was down for a week. Maybe I got off track a bit. What I am trying to say is you can't live life as you normally have. You have to cut back at least for now and watch what you do. Plan your live around your work and social schedule. That may sound harsh but that is the only way to address what you have. I am self employed and run my own business. I have to plan the days so I know when to rest the day before and hope I wake up feeling ok. There are days when I don't but I go ahead and see my customer, which can take 2 -6 hours. When I come home I usually go stright to bed. Last Thursday I had to travel 600 miles round trip the same day. I slept just under 30 hours this weekend and just got up from a two hour nap on Monday.
Sorry for sounding like a lecture but you have to go through it. It dosen't seem to want to go away from us! By the way where did you here about Othorstatic Intolorance because that happens to me quite fequently.
Thanks,
Sundance

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Replies to "Karena, I understand a really feel for you. I have followed This Mayo Thread or whatever..."

Good Morning,
I am so sorry you have not been able to get a definitive diagnosis on what is going on with you.
I am not in the medical field in any way, but with all your outdoor activities, you MIGHT have been bitten by something causing these symptoms.
However, my concern is that some of the things you mentioned, with which I am familiar, can cause long term issues if not dealt with.
Fibro and Chronic Fatigue will not cause permanent damage if not medicated, but Lupus will.
If possible, I would certainly continue to pursue finding out what is going on so that you can receive the appropriate treatment in order to prevent any long term issues.
I know what you said about doctors in New Mexico. Is it possible to go outside New Mexico to one of the states???

I wish you good health!
Ronnie (GRANDMAr)

Hi! I honestly appreciate you sharing your story with me! It means a lot to me! It most definitely is something very difficult to cope with! Whether it sounded like a lecture or not! It was helpful! Thank you! I heard about Orthostatic Intolerance from my POTS specialist-Dr.Fischer Mayo Clinic Rochester!

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