Just Diagnosed

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BlueD
Regular Member


Date Joined Dec 2012
Total Posts : 28
   Posted 1/28/2013 2:24 PM (GMT -7)   
Hello Everyone:

I was just diagnosed with CFS. I kind of thought that I had it for a while, but I got the official diagnosis on the 24th.

What do I need to know? Any helpful hints on how to deal with this disease? Anything would be appreciated!

ladybugdreams
Veteran Member


Date Joined Jun 2008
Total Posts : 726
   Posted 1/30/2013 1:08 AM (GMT -7)   
BlueD, I want to welcome you to the forum. It is so sad that you have been dx'd with CFS. I am sorry. This is not a fun illness by any means but it is important to come to terms with it. It is very hard to deal with the fact that your life will not be the same as before & you need to live it within your means, within your energy envelope, so expect to grieve your old life. With pacing & really listening to your body you can have a life, definitely a different life from the old one. You will soon learn how much you can do on any given day. Some days I can do lots more then others, some days I am recouperating from what I did the day before but it is a trade off. Everyone is different with this illness & in having something work for them. I used to work, garden, make jewelry, loved to cook, I cleaned a four bedroom house, etc & never thought a thing of the energy I used. Now, I am on the computer, I crochet, I read, I visit & watch tv, I sleep 10 - 14 hours per night. Quite a difference but I am happy. I hope you can find your way.

For CFS, I use a muscle relaxer, Tizanidine & Trazadone for night pain & it helps me to go to sleep, stay asleep or go back to sleep if I wake up. I also, use Magnesium Malate for cognative problems & fog, I use 85% cocoa dark chocolate for alertness, energy & fog. I take a multivitimin & vit D3. I have just started the magnesium Malate & hope to see an improvement soon. My biggest problem is the fatigue, malaise & lack of energy. Please feel free to ask any questions you need to. Hugs, Denise
Fibromyalgia-dx'd: 2006, ME/CFS-dx'd: 2006, Holt-Oram Syndrome dx'd 1975, reduced lung capacity dx'd 2009, nasal allergies, food allergies, depression (lifetime problem) IBS, neuropathy in hips

I have 4 children & 7 grandchildren.

As apples of gold in silver carvings is a word spoken at the right time for it. Prov. 25:11

Recoveryme2day
Regular Member


Date Joined Jul 2012
Total Posts : 335
   Posted 1/30/2013 1:25 AM (GMT -7)   
Welcome to our little corner of the world, as much as we wish you didn't have to be here, we are glad you came. Have you you gone through the CFS resources at the beginning of out page? You could also try "surfing" our board, I like to search by "subject" even older posts can have great information, insight and hope. Everything jewelrylady said is right on target, I was just wondering if you have any other illnesses or issues, like thyroid probs, mental illness(there's a lot of us on this forum, so you don't have to worry about judgement)EBV or Fibromyalgia? Do you work, have kids, married, single etc.. I know I'm getting personal but All those things affect how we deal with this disease. Some of us can work full time or part-time or work from home and some can't work at all. Some can take care of the house, kids, spouse and some can't, I'm the latter in both those. I think I've gone on long enough and asked enough questions, hope to hear from you soon Angie
Crainiotomy Lg. Meningioma Dec.02, Bi-Polar 2004, SMI 06, Gluten/Wheat/Dairy Intolerance, IBS 06, Migraines w/pseudo-seizures 07, Dev. Septum Sur. Sept.07, 2nd Men./Tumor Gamma Knife Rad. Dec.08, Radical Hysterectomy Sept.09 w/instant Menopause, Fibromyalgia 09, Disability since 09, EBV/CFS 11,Vomiting/Multiple Ulcers, Vertigo 12, Chronic Fatigue Moderator 2013.No meds list I ran out of space.

BlueD
Regular Member


Date Joined Dec 2012
Total Posts : 28
   Posted 1/30/2013 11:51 AM (GMT -7)   
Yes I have updated my signature to reflect my diagnosed conditions. I will be back later, as I am currently fighting the flu.
I have: Fibromyalgia, Chronic Fatigue, Endometriosis, Myofascial Pain Syndrome, Irritable Bowel Syndrome, Chronic Pain Syndrome, Anxiety, Depression and Dissociative Identity Disorder.
I am currently on : Dilauded 2mg, 4 times a day, Oxycodone 1-2 every 6 hours, Tramadol, 1-2 every 8 hours, Valium 2mg 4 times a day, and Lyrica 50mg three times a day.
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