2dizzy4now Posted January 27, 2005 Report Share Posted January 27, 2005 Hello to everyone ..I am so afraid of what I have been dealing with...I am 40 years old and I know that along with age comes some difficult times, However..I don't believe for one second that my age constitutes feeling like death ...This pots stuff really stinks as you all surely know..I have been on the pots wagon for 3 years now..My symptoms are normal pots symptoms and along w/ that I have CFS. Who really knows which came first...I am also being checked for fibro.Wondering why I am in pain all of the time, on top of everything else that seems to be going wrong. I am wondering if anyone knows about the connection between pots and fibro ..if any at all...And I may be dreaming here but would it be safe to think that it too may go away some day..And does anyone know of any great recovery stories ..and if you do please share them I need a ray of hope if not for me than atleast for someone else....Thanks all Quote Link to comment Share on other sites More sharing options...
TexasGrrl Posted January 27, 2005 Report Share Posted January 27, 2005 Hi Dizzy,I don't have fibro, but my sister does. She manages it quite well and has learned coping mechanisms for dealing with it. Hopefully you will be on the right track with that soon. I wish I could tell you what she does, but I don't know all of what she does except to stay warm, because cold seems to make it worse.As for the POTS & CFS, well, those are usually concurrent diagnoses when CFS is in the picture. Not all CFS patients have POTS, but many do. So they're probably linked.And as for CFS, my sister's ex had that about 10 years ago and it took a couple years, but he healed from it. He still tests positive for Epstein Barr but he doesn't have the symptoms like he used to. He leads a normal life without fear of what we go through every day.There is hope!And welcome to our group Quote Link to comment Share on other sites More sharing options...
blackwolf Posted January 27, 2005 Report Share Posted January 27, 2005 hi dizzy,i'm a POTS, CFS/Fibro dx. I hope you get some good answers, good docs and all the help you needblackwolf Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted January 27, 2005 Report Share Posted January 27, 2005 Hi dizzy,No recovery story. Those who have POTS secondary to CFS or Fibro seem to have a different process than the chronic dysautonomics that I have come to know. We chronic cases seem to never have it all go away. There is always hope.best wishes, tearose Quote Link to comment Share on other sites More sharing options...
Guest Mary from OH Posted January 27, 2005 Report Share Posted January 27, 2005 I too have POTS and Fibro. Yes, there is a connection. Migraines too. You might want to check out the www.potsplace.com site for lots of info. Also the www.nrdf.org site too!!No, it doesn't go away. But, there are good days, bad days and days you just don't want to discuss....Welcome to our "happy home"!! You'll find lots of support, good friends, lots of info and most of all a safe place to vent to people who really understand and will never get tired of listening!! Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted January 27, 2005 Report Share Posted January 27, 2005 While you may not come across many stories of "full recovery" at this forum, and perhaps elsewhere, many people do recover to a good to excellent level of health, with minor symptoms and/or flare-ups. This is the case for me. I was very sick with POTS postpartum--to the point of being bedridden. Now I am very well most days, and work part-time and am home the rest of the time with my 2-year old. Most people improve with medications and time.Katherine Quote Link to comment Share on other sites More sharing options...
EarthMother Posted January 28, 2005 Report Share Posted January 28, 2005 Dear Diz,I have POTS/CFS but not Fibro. So sorry dear for the pain you are in. There ARE success stories out there. I knew people with FM/CFS who made complete recoveries (or maybe we just call them long remissions.) Problem is many people when they "recover" they stop using the boards. So we loose track of those who do improve and move on.A quick google search (for what it is worth) produced the following pages that include successes:http://www.cfidsselfhelp.org/archive_success.htmhttp://www.healingwell.com/pages/Fibromyal...al_Experiences/Dr. Weil has a wonderful book called "Spontainious Healing" that I would highly recommend ... and there was this other book I read once called Healing Myths, Healing Magic: Breaking the Spell of Old Illusions; Reclaiming Our Power to Heal by Donald M. Epstein -- it was pretty cool as well.Good luck on your healing journey and welcome to the POTS boards. There are really GOOD people here.EM Quote Link to comment Share on other sites More sharing options...
2dizzy4now Posted January 28, 2005 Author Report Share Posted January 28, 2005 Thanx guys for responding...katherine, Mary, Tearose, Blackwolf, Texas grrl..And qnyone else who may read this and respond..I have learned that with this pots we are our own salvation sometimes...I have learned to listen to myself more than I listen to the doctors..I know me better than they do, I know what makes me feel worse and what sometimes helps...I have seen over a period of 3 years..13 doc.s....I know more about the pots than I wanted to and not anything about how or why I have it...And as far as the fibro, well, lets just say that it's just one more excuse I have for not wanting to clean out the cat litter box... Thanx again... Quote Link to comment Share on other sites More sharing options...
Rachel Posted January 29, 2005 Report Share Posted January 29, 2005 Hello Dizzy,I'm sorry I don't have any recovery stories for you. But don't give up hope. There will be better days and worse days and days that we just have to find pleasure in the small things in life. About the pain - have you tried an air bed? I don't have fibro, but I good friend of mine does. The air bed is what helps her the most with her pain. I slept on it one night and it was NICE! You don't feel the pressure on your body like you do on a regular mattress. Sending a smile,Rachel Quote Link to comment Share on other sites More sharing options...
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