Ahoy Mateys, Wenches and scurvey scallywags!
Sorry yer dear Capt has been AWOL for so long, but here's my excuse........ha ha ha!!!
Typing on the computer for more than a minute or two has been really difficult, but is much better now. Around springtime, I started getting tingling and numbness in my hands and feet, which soon progressed to severe burning pain. I was also suffering from an allover body ache much like you get with the flu. I saw my GP, my neuro, my pain doc, and finally had to wait 2 months to get in to see a rheumatologist (errrrrrr
) Before I saw the rheumatologist , most of the docs I saw said I had fibromyalgia and one thought I might have ALS which of course scared the bejeezus outta me. Then the 2 month wait---why do they DO that to us?
? I finally got in to the rheuma and she ran a battery of blood work on me and ruled out the ALS, Lymes disease, RA, And a bunch of other weird stuff. She agreed with the fibro diagnosis and put me on Lyrica--this was the end of July.
Meanwhile, Eric bought us a place at the beach!! We now have a park-model 39 ft RV in Sea Level NC on Core Sound in the outer Banks. We have a view of the sound, a small dock and boat launch, and we dragged our kayaks and 18 ft Dagger sailboat down here.
We came down for the moth of August and I was totally unable to walk the 100 yards to the beach as the pain in my hands and feet was so severe. I thought, you know, hand and foot pain just doesn't jibe with fibro, so I got on the computer and started researching.............
In March, my GP had put me on a low dose of Lipitor to get my not-all-that-high cholesterol down--apparently they do that to everyone these days! Well, I soon discovered this website:
http://www.spacedoc.com/I read all I could on the side effects of statins, ordered one of Dr Graveline's books called "The Statin Damage Crisis" and threw my Lipitor in the trash. Of course I called my GP and told her what I was doing. It amazes me that all those docs I saw didn't pick up on this! I bring all my meds with me to every appointment and not one of them put it together that I was having a reaction to statins!! Needless to say I was pretty angry, especially when I read that the damage in my hands and feet could be permanent.
Almost immediately my foggy thinking and body ache went away, but the hand and foot pain remained.
I saw my rheuma when we went home and she agreed with me that I had statin damage, but she has yet to rule out the fibro.
We came back to the beach at the beginning of this month and my hands and feet are very slowly getting better, although I went through a period of severe all over twitching as the toxins left my system. Very weird!! I put myself on a vitamin regimine that includes a buttload of vitamin C and CoQ10, which is an element that cell membranes need to function and that the statins inhibit.
I'm still on the Lyrica, but will probably switch to gabapentin when I run out as I am in the Medicare part D donut hole.
Eric's doc put him on 80 mg of simvastatin following 2 stent procedures and he started feeling side effects, so he is on the vitamin regimine to counteract them and has been able to halve his dose and we got my 90 yr old Uncle off them, too (with his doc's permission) as he was having terrible problems with his feet, which was keeping him immobile and fogging up his still very sharp thinking. Just talking to him on the phone I can hear him not struggling to remember words any more, which is something I was going through while on them, too. It is really scarey when you have to describe "that big black thing that we keep the food in!"
Somehow I feel better when we are down here at the beach. A flat world seems more friendly to someone with a balance disorder. I have found a walking partner in a new friend who is recovering from back surgery who also has an RV in the park here. I'll attach some pictures when I get a chance. Eric is busy building us a deck and this morning I sat out on the finished part and watch pelicans feed with my morning coffee. Anyone who wants to visit--I'll put all my artsy -craftsy stuff up in my "studio" and you can have the bunkroom. An RV with a studio! The studio window is the sound view, too!
This area is Blackbeard's old hold-up and they've newly discovered the remains of his flagship "Queen Anne's Revenge" and are exhibiting them at the Maritime Museum in Beaufort which is the nearest large town. We are 10 miles to the ferry over to Okracoke Island, which has one of the most beautiful beaches on the eastern seaboard. If anyone wants to google earth us, we are at Styron Creek, Sealevel, NC. A short boat ride takes us over to Cape Lookout, the Core Banks, and all manner of small deserted islets. I am in heaven!!! Now to just get these feet and hands working!!!
I have missed you all will try and catch up on what is what by reading around the forum. A big hug to all the folks over on the headache threads.
AAAARRRR!!!!!
Capt Deb
