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Any Fibro/CFS/Autoimmune forum members?

fibro CFS Autoimmune

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#1 Abbybearsmom

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Posted 04 July 2014 - 04:28 AM

I have fibro and fibro related stuff. I just wanted to see are there any Fibro/CFS or autoimmune forum members here?  :)



#2 Patter

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Posted 04 July 2014 - 09:23 AM

Not myself but one of my daughter's has POTS which is an autoimmune disease. She also has a Chiari Malformation, and POTS and Chiari tend to go hand-in-hand. She lives in pain daily. It's hard for a mama to watch. I am sorry you suffer too. Hugs!


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#3 Scrappy Carrie

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Posted 05 July 2014 - 10:46 PM

Me! Hello, I have Fibro. Patter I'm sorry to hear about your daughter. That must be so hard to see. Abbybearsmom PM me if you want xox



#4 mmmbisto

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Posted 07 July 2014 - 07:41 AM

I have ulcerative colitis. Patter, I couldn't imagine how hard that must be for both you and your daughter :(


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#5 Janet White

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Posted 07 July 2014 - 12:31 PM

Chronic pain is so hard. I feel for you and your daughter.

I've had FM/CFS all my life - and in a way, that's a blessing because I don't know 'normal.' Diagnosed in 1988, I finally learned what it was like to sleep well. I'm virtually pain free/symptom free if I take good care of myself and exercise regularly. I learned as a child to manage the pain by focusing on a task at hand. There's very little pain when you get into Flow Mode. Because of this, I have projects going for whatever energy level I have, and I rarely pay attention to the pain since it's not worthy of my attention. ;)
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#6 Patter

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Posted 07 July 2014 - 12:53 PM

Thanks so much girls. It is hard to watch her go through this but she trusts God with the plan. I am sorry y'all are suffering too. Hugs!


Patter, Mom to identical triplet girls in college
Asst. DT Coordinator for Blue Fern Studios

#7 Abbybearsmom

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Posted 07 July 2014 - 01:46 PM

 

 

Patter-what is Chiari Malformation, and POTS?

mmmbisto- I sorted of understand what you're going through. My sister had it 33 yrs ago and ended up with an ostomy at 14. 

Janet-please share what activities you do to divert the pain!



#8 Patter

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Posted 07 July 2014 - 03:27 PM

Patter-what is Chiari Malformation, and POTS?

 

POTS is Postural Orthostatic Tachycardia Syndrome. She has a racing heart rate which causes her to faint, feel dizzy, etc. She is on meds to help with it. A lot of Chiari patients also have POTS as in my daughter's case. 

 

A Chiari Malformation is a condition where the cerebellar tonsils (lower part of the cerebellum) of the brain and the brain stem are pushed into the spinal canal. She has dizziness, numbness, daily severe headaches (different from migraines), vision problems so she can no longer drive, intestinal issues, and many other symptoms. Every day is different in regards to her pain level. It basically a dreadful diagnosis.


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Asst. DT Coordinator for Blue Fern Studios

#9 stampartiste

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Posted 10 July 2014 - 07:12 PM

POTS is Postural Orthostatic Tachycardia Syndrome. She has a racing heart rate which causes her to faint, feel dizzy, etc. She is on meds to help with it. A lot of Chiari patients also have POTS as in my daughter's case. 

 

A Chiari Malformation is a condition where the cerebellar tonsils (lower part of the cerebellum) of the brain and the brain stem are pushed into the spinal canal. She has dizziness, numbness, daily severe headaches (different from migraines), vision problems so she can no longer drive, intestinal issues, and many other symptoms. Every day is different in regards to her pain level. It basically a dreadful diagnosis.

 

I am so very sorry your daughter has to suffer in this manner.  I had never heard of this condition, so I can't even imagine the pain she must go through or the mental and emotional drain this must be on you and your husband to watch your much loved daughter suffer so.  My prayers will be with you and your family, Patter!  Many blessings...


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Shirleÿ


#10 Patter

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Posted 11 July 2014 - 03:05 AM

Thank you SO very much Shirley!!!! God is teaching us all a lot through it for sure!


Patter, Mom to identical triplet girls in college
Asst. DT Coordinator for Blue Fern Studios

#11 Janet White

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Posted 11 July 2014 - 06:33 AM

Janet-please share what activities you do to divert the pain!


Pretty much anything - reading, writing, scrapbooking, photography (taking and processing), sketching, baking and cooking, gardening, etc. The trick is to get your mind off of your body. When the pain is bad, that's hard to do. My rule when that happens is to get going on something for at least twenty minutes - and usually that's all I need to focus my mind elsewhere.

I've written a post on what works for me that tells much more here. http://www.fieldjour...t-works-for-me/

Basically, I simply work to enter life as fully as possible each day. Learned that from a friend of mine with Traumatic Brain Injury who only remembers about a day or so at a time, and embraces life so fully that he's an inspiration for me.
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#12 Kdgdiane

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Posted 11 July 2014 - 06:45 AM

I have Crohn's disease

#13 Patter

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Posted 11 July 2014 - 08:42 AM

Janet, I like how you deal with the pain. I will share with my daughter! Thanks!


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Asst. DT Coordinator for Blue Fern Studios

#14 Abbybearsmom

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Posted 11 July 2014 - 09:26 AM

Janet,

I loved reading your blog post. Everything you wrote is right on target. One other thing I do is take supplements and drink green smoothies with veggie protein and flax seed if I am feeling extra hungry. 

I know when I usually have the most "energy". I try concentrate on necessary tasks or go to the doctor, salon, store, vet. What you wrote about the pedometer is also on target. I will walk by # of minutes. Depending on how I am feeling, I'll walk at an average or slow pace.  If's it's more painful that day, I will write a schedule for myself for the day-with regular rest periods. Getting out and seeing people really alleviates pain. 

Again, you were right on target regarding nature. I love going to the park with my dogs and meditating when few people are there. It has to be early in the am as it quickly becomes hot and humid where I live. At night, I go to my screened in patio with my dogs and read. I've grown plants so it feels sort of like a garden. Listening to the birds sing or the frogs croak is music to my ears. Reading is one activity that really, really relaxes me.

One thing that has been known to help fibro (or hurt) is sitting in the sun for a few minutes each day. It seems to work for me.  I'm glad you posted. What you wrote here and on your blog applies to many other illnesses.  



#15 Janet White

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Posted 11 July 2014 - 06:27 PM

I'm glad the post helps. Since I wrote that, I've also added in a couple of Airborne chewables to my diet - one in the morning and one in the evening. It has magnesium and selenium in it, and at one point someone told me of a similar disorder they had trouble with in sheep. They acted like they were in pain and just refused to move. The cure was an increase in magnesium and selenium. Can't say I'm noticing a huge difference, but we're doing so much right now with our move/remodel that I'm not sure what works and what doesn't.

Interesting what you say, Abbybearsmom, about the sun. My whole life I've loved being out in the sun. It does help getting warm, and I'm sure the extra Vitamin D can't hurt either.

I really think focusing on the pain becomes a habit, and the only way to break that is to replace it with focus elsewhere.

#16 Abbybearsmom

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Posted 13 July 2014 - 05:33 AM

I'm glad the post helps. Since I wrote that, I've also added in a couple of Airborne chewables to my diet - one in the morning and one in the evening. It has magnesium and selenium in it, and at one point someone told me of a similar disorder they had trouble with in sheep. They acted like they were in pain and just refused to move. The cure was an increase in magnesium and selenium. Can't say I'm noticing a huge difference, but we're doing so much right now with our move/remodel that I'm not sure what works and what doesn't.

Interesting what you say, Abbybearsmom, about the sun. My whole life I've loved being out in the sun. It does help getting warm, and I'm sure the extra Vitamin D can't hurt either.

I really think focusing on the pain becomes a habit, and the only way to break that is to replace it with focus elsewhere.

 

Ah, Airborne! Yes, I did that. It became an expensive habit. I may have to go back to it. I would put it in my water and would drink more water. I'd buy it in bulk at Costco.  

                                                                                                                                                                                    

My RA said fibro people have a problem with GERD. He put me on Nexium. I've since learned Nexium can deplete magnesium in the body.

Luckily, i'd already been taking larger doses of it. My mag. levels are good. The sun is good for Vit. D. I think it also helps people relax.

 

 You know what? I agree that focusing on the  pain can be a daily habit. If I have pain, I focus on doing my best to bring it down to tolerable levels. The trick is to use the energy you do have to learn about and engage in reducing pain. It's not easy-especially for someone who is at rock bottom or suicidal. Unfortunately, suicide rates for those with fibro are higher than they should be.                                                             

 

I love your posts. It's nice to read about someone who is on track!


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#17 libbyg

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Posted 12 August 2014 - 01:39 AM

I have psoriatic arthritis, psoriasis, Sjögren's Syndrome, fibromyalgia and celiac disease. I was diagnosed about four years ago with most of them. I had a rough couple of years and had to quit working full time (I was a kindergarten teacher in a public school) . Now I work part-time as a preschool teacher and I feel like I have a grip on all of it finally. I still get really exhausted sometimes and hats the worst part honestly.

#18 WallyAgain

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Posted 12 August 2014 - 11:53 AM

I have Multiple Sclerosis and muscular dystrophy. I also have to watch my activity level, if I get overtired, the MS makes it even worse. I hate the crushing exhaustion, I have a hard time just going to bed.

#19 Scrappy Carrie

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Posted 11 September 2014 - 12:58 AM

I love the distraction techniques and do try and apply it as much as possible. But there are those days when the pain is un-ignorable, today is one of those days. Gentle hugs to all xoxox

#20 JulesP

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Posted 08 May 2015 - 07:35 AM

My father swears by this book and the deoxyribose supplements he describes.

http://www.amazon.co...nd fibromyalgia




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