I know some of my fellow quilters suffer with this illness or know someone close to them who does. The CFIDS association of America is asking for our help with an upcoming FDA workshop. It's a five-ten minute survey and it will be a great help, here is the link...  https://www.surveymonkey.com/s/pt-focused-survey ..

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Comment by rogue quilter Queen of the WIVSP on March 23, 2013 at 1:23pm
yes....it do sucketh!
Comment by viki hagan on March 23, 2013 at 1:09pm

yep.. the loss of freedom is the worst I think..I used to take off with the dogs and drive cross country whenever I wanted.. it took a long time to just say.. ok, I have to learn to live with this..as horrible as that was for me, I think it was harder for those around me who had always counted on me for so much and now I have to count on them.. it sucketh

Comment by rogue quilter Queen of the WIVSP on March 23, 2013 at 1:00pm
the same w me viki. i started to respond to debbee's post earlier. erased it. sometimes it is so difficult to accept and be quiet about the course my life has had forced on me in recent years - the incessant pain, the light intolerance..especially on headache days..headaches - i never know if it is from the pinched nerves in neck from cervical spondylosis or cfids...so wait ..try this try that finally an aha moment ..can't do anything..it be the cfid thing..lay down ride it out. rides ...sometimes i feel like my wings have been clipped. no jump in the truck w dog. cam in hand. and see where that road goes. no hiking not even nice walks...i may not get back home.. yard work i can do...on my schedule..i take a week to do what a normal person can do in an hour, or a day at most. no, on second thought ....my wings ain't been clipped ...they been rrrrripped off!

..and i will be forever mad about it. i was too busy for this..i don't have time for this...i don't WANT to allow time for this....

oh well.....
Comment by viki hagan on March 23, 2013 at 12:13pm

If all you get with your migraines is dizziness, count yourself lucky, lol. I go through cycles of dizzy spells but with my migraines comes a light sensitivity so bad I can't open my eyes in a dark room, any sound at all is like a sonic boom and I tend to vomit a lot.. it's not pretty.. so grateful I don't get them as often as I did in the beginning. I'm pretty sure my stress level at the time was a contributing factor. A sauna sounds wonderful. I had a jacuzzi tub in my old house that I miss badly.. like your sauna, it seemed to be a huge help.

Comment by Debbee Carlson on March 23, 2013 at 12:00am
In may 2007 I got feed up and went off all pills! Prescrips and supplements. Within two to four weeks I hurt so bad I didn't want to get out of bed! I saw a rheumatologist, he diagnosed FM and put me back on topamax. Within days my pain level dropped to less than half. I still had the joint pain which lead to the RA. And of course the migraines - I even get some that make me dizzy!! thats a trip!! It's good to hear from others with the same issues. We had a sauna in our home where we used to live - that really helped me a lot. Sometimes I used it twice a day. The our first project in our new home!!
Bed time :)
Comment by rogue quilter Queen of the WIVSP on March 20, 2013 at 3:06pm
hmmmm...association, even indirect, with moi & with my verbosity... :))

i agree w the vit d - i take 4000/day, vit c - 1000a day. stress tabs, a b vit complex and few other things to help in maintain neuromuscular stability that were prescribed by one of my doctors. asa, celebrex and ultram all for pain, fever and "burning" ...that becomes soo bad i have dreams of being in a fire and then wake up clawing at blankets and coverings. then it is another night of no sleep. i am not talking about night sweats or hot flashes. this does not subside, there is no sweating it is like the worst sunburn you have ever had. all over your body, between your fingers & toes your face every where and then your skin hurts...to be touched is like recieving shock treatment every where dh touches..it is very hard on a spouse..on my bad days he can't even give me one of his "i wish you felt better" hugs. he is patient, has moments of frustration w the situation, but he has become very supportive and tolerant over the years. it took a long time tho :((
Comment by rogue quilter Queen of the WIVSP on March 20, 2013 at 2:51pm
bingo...you look fine..ergo...you ARE fine. here are some links. you are not alone here. viki and i have posted this sort of thing before. then as now, she is the brave one who takes the initiative & starts the dialogue. there is another here who had a close friend who suffered & it wasn't till losing her to another more catastrophic ilness that ahe understood what her friend had suffered thru. i have met a few more here who have relatives w cfids, or spouses suffering from fibromyalgia. there are some very informative and helpful links listed below. and my zapmeta search link that i have in my bookmarks, where i find more info links ocassionally. and viki has posted the one below and knows of more. i need to wander in the groups that she speaks of. i belonged to a support group for a couple of years. but it met in evening...driving brain dead in a mental fog along coastal highway is scary at best of times...in the dark? i dropped out :((. several of us wanted to meet days but i was one of the few who could drive myself. don't self diagnose. cfids, me, fibro are all very complex sets of symptoms that mimic many other diseases ie - RA, lupus, endecrine disorder etc etc. seveal years and several thousands of dollars in tests, studies etc, most of which insurance would not cover, and i ended up w two diagnosis' that when looked up had mostly identical symptoms. and one doctor told me that the whole set of issues w these illneses are too complex to simply state..."well, you have this".






...and more...

Comment by viki hagan on March 20, 2013 at 2:45pm

gee, I didn't realize I wrote a book.. oh well, lol

Comment by viki hagan on March 20, 2013 at 2:45pm

Debbee, I know that going crazy feeling well. I know my boss and co-workers thought I was just crazy or some sort of hypochondriac.  My initial symptoms were really constant migraines, horribly aching thighs when I climbed stairs, and seemingly constant nausea. And like you said, everytime you have to cancel or leave work or whatever because you don't feel well...yeah, after a little while even you start to think it might all be in your head and then...the fatigue hits, lol. If you weren't crazy by then, you definitely are now.  It took me a good three years to get a final diagnosis of CFIDS and then I had to hire a lawyer to get approved for disability.

If you haven't been diagnosed yet..you're going to go through a lot, they will test you for everything else first.. and I mean everything. My initial diagnosis was MS..but the brain MRI's showed no lesions, then lupus, again not the right blood markers, then it was Addison's disease..I didn't react properly to the hormone injections, 3 sleep studies, 1 endocrinologist, 2 neurologists and my gp came up with squat. Finally went to see the Dr. House (the infectious disease guy) of the local university, one year, three or four med trials, more blood tests than I could count and finally, what I knew all along.. CFIDS, lol. To be fair he was sure that was the case as well, but they HAVE to count out everything else first, or you'll never qualify for disability benefits.

So good luck on getting through the gambit. Please do go fill out the questionnaire, all help is helpful.

Some helpful tips that work for me.. nausea, take ginger pills, they are cheap and they work better than a p***********. Vitamin D (4000mg) and Vitamin C (500mg) religiously and you'll see a good decline in cold/flu sick days and your hair will grow lol, nice bonus. I just take motrin for muscle pain, but I imagine you have that covered since you have FM. Migraines I used to take topomax, the traditional meds had too many side effects..but I don't take anything now, I don't get them as often as I used to (which was 2 or 3 times a week) so I just usually wait them out now. As for the fatigue.. it rules your world.. sleep when you are tired and just accept that your plans are always going to be subject to change at a moment's notice. I think that's been the hardest part for me...I was always a go go go person and forcing myself to live much more leisurely has been horrible, the next worst part..making those close to you understand your illness. I date a physician and he totally thought I had something with a cure, it took a trip out of town for him to really see how little I can actually do in a day before the fatigue takes over.

So, if you need someone to drop some frustration on, lol.. me and rogue have probably dealt with it.

Comment by Debbee Carlson on March 20, 2013 at 12:54pm

Thank you ladies so much for this information!  I was beginning to think I was going crazy!!  I had an auto accident in 2003 and my life changed from that point on.  Migraines and constant pain.  In Sept. 2007 I was diagnosed w/FM.  Dec. 2007, RA.  Been on assorted meds for all the above.  Always tired - so very frustrating.  About six months ago I started with stomach issues.  After reading about CFIDS/ME it's like reading a book about myself.  The most frustrating part is people look at me, and I look "fine" so what's her problem???  I will be investigating this a lot further.  Thanks for the information.

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