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BECCABOO127's Photo BECCABOO127 Posts: 17,990
1/12/19 5:42 P

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Modified Fatigue Impact Scale (MFIS):
Measures the impact fatigue takes on a patient's daily life.


www.mdcalc.com/modified-fatigue-impa
ct
-scale-mfis


I may take this test and then take it to my doc. I am supposed to see a neurologist to rule out MS.



Edited by: BECCABOO127 at: 1/12/2019 (17:53)
If the mind mends, the body will follow.

Gluten free is working for me!

"If we did all the things we are capable of, we would literally astound ourselves." Thomas Edison


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BECCABOO127's Photo BECCABOO127 Posts: 17,990
1/12/19 5:37 P

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www.healthline.com/health/multiple-s
cl
erosis-ms-gift-guide#technology


Gift ideas for ppl with MS

Good links too including apps that help find a supportive community.

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Gluten free is working for me!

"If we did all the things we are capable of, we would literally astound ourselves." Thomas Edison


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BECCABOO127's Photo BECCABOO127 Posts: 17,990
1/12/19 5:13 P

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PoTS

www.ncbi.nlm.nih.gov/pmc/articles/PM
C5
819886/


Quoted in part:

"In our practices, we frequently encounter chronically fatigued patients who also report symptoms of dizziness, lightheadedness, nausea, vomiting, sleep disturbances, pain, altered mental quality (sometimes described as “brain fog”), or altered temperature sensations as well as changes in sweating and purplish skin discoloration in dependent extremities. Many of these symptoms are autonomic in nature and suggest some sort of autonomic dysfunction in this group of patients. There is increasing evidence that chronic fatigue is often accompanied by significant dysfunction in the autonomic nervous system. It seems likely that chronic fatigue and autonomic dysfunction are often overlapping conditions."

If the mind mends, the body will follow.

Gluten free is working for me!

"If we did all the things we are capable of, we would literally astound ourselves." Thomas Edison


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BECCABOO127's Photo BECCABOO127 Posts: 17,990
1/12/19 5:08 P

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PoTS

www.potsuk.org/fatigue_management

Keep activity diary
Pace
Adapting Activity

Quoted in part: "Many people stand in the shower. Surely that is what everyone does!? For some people with PoTS the heat of the shower combined with standing in one place can trigger palpitations and dizziness, which is unpleasant and often frightening. The resolution to this could be to open the windows, turn the heat of the shower down or to consider equipment such as a shower stool to sit on. This could be self-purchased relatively cheaply, or an occupational therapist could carry out an equipment assessment.

Occupational therapists consider all needs- physical, psychological, social and environmental and aim to increase function and quality of life. They use a number of techniques to do this, including equipment provision (grab rails, wheelchairs, perching stools, bath boards), graded rehabilitation, fatigue management and improving community access. If you do not feel you are managing your activities of daily living and this is impacting on your quality of life, your GP will be able to process a referral to your local community occupational therapy team."

****

Top tip for adapting activity- think hard about how you can make each activity a little easier and try it out for a minimum of two weeks,

*****

I've done physical therapy, but may need occupational therapy too.

Hey, I am very much into making thing easier!!



Edited by: BECCABOO127 at: 1/12/2019 (17:09)
If the mind mends, the body will follow.

Gluten free is working for me!

"If we did all the things we are capable of, we would literally astound ourselves." Thomas Edison


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BECCABOO127's Photo BECCABOO127 Posts: 17,990
1/12/19 5:01 P

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Thank you for posting. I feel for you. emoticon

I am posting different types of fatigue/causes in this thread, but please post your own stuff too!

I am still struggling with the mental element of fatigue.



Edited by: BECCABOO127 at: 1/12/2019 (17:03)
If the mind mends, the body will follow.

Gluten free is working for me!

"If we did all the things we are capable of, we would literally astound ourselves." Thomas Edison


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WFCHCHCGG's Photo WFCHCHCGG Posts: 90
1/12/19 4:36 P

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�Have to rest after just getting out of bed! Fatigue so deep it�s indescribable in mere words.� � Kevin M. This defines my battle with fatigue. There are times when I am so exhausted I can barely lift my arms. It's horrible.

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BECCABOO127's Photo BECCABOO127 Posts: 17,990
1/12/19 4:32 P

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Fatigue and MS

How these bloggers cope:

www.healthline.com/health/multiple-s
cl
erosis/my-ms-mantra#2


Quoted in part: Alene Brennan

Alene Brennan works with individuals living with MS and other autoimmune diseases to create a diet and lifestyle that will support their healing and disease management. She holds four certifications: nutrition coach, yoga instructor, personal trainer, and natural food chef. You can learn more about her work and follow her blog, recipes, and more at www.alenebrennan.com. Check her out on Instagram and Facebook, too!


What is your MS mantra?

I was diagnosed with MS as an active and single 36-year-old fitness professional. I had done all the right things for my body, yet here I was with MS. I had a choice: focus on the fear or focus on the positive. The words I had shared as a yoga instructor, “That which you focus on gets bigger,” echoed in my mind. That mantra empowered me to bring a greater purpose to my diagnosis, so I dedicated my nutrition coaching practice to those living with MS and created an MSIndependent Anthem. It’s my battle cry to stand up to MS… to contradict what this disease and the world expects of me (and you!).

What happens when times get tough? What activity makes you feel better?

I’ve always been one to lace up my bootstraps and dig deeper… until MS broke my “dig deeper button.” It stripped my reserves. So for me, when the fatigue sets in — or ideally before — I give myself permission to rest. It has become one of the greatest gifts MS has given to me. I’ll diffuse essential oils, grab a comfy blanket, and give my body the time it needs to rest. What I found most interesting is that by creating space for this rest, my body recovers much easier. It’s as though my body began trusting me again."

****************************************
*

I can so relate to giving myself permission to rest!! See the other bloggers in the article and what they do. One couple listens to music a lot, like Tom Petty and Bruce Springstein

Edited by: BECCABOO127 at: 1/12/2019 (16:33)
If the mind mends, the body will follow.

Gluten free is working for me!

"If we did all the things we are capable of, we would literally astound ourselves." Thomas Edison


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BECCABOO127's Photo BECCABOO127 Posts: 17,990
1/12/19 4:17 P

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Good article regarding fatigue and MS.

www.healthline.com/health/multiple-s
cl
erosis/community-tips-multiple-sclerR>osis-fatigue#1


Quoted in part regarding ppl's tips for coping with fatigue:

"Well, I am breaking one of my rules now regarding fatigue, but generally I need quiet time without any electronics to disturb me. I may not necessarily sleep, but a siesta will get me a bit more energy." — Kelly T.

“I find that taking my showers before bed, braiding my wet hair, helps me the next day. And I can just drift off to sleep afterward.” — KristenAnn F.

“Getting ‘ready’ to leave the house is a two- to three-day process. People assume that I am fine because I look put together (even if just wearing a hat and easy-type clothes). They don’t know that it takes literally days to get there, and will have the ‘after’ effects for days to follow. I’m not talking about going to a social gathering or anything special, this is just for groceries, errands, doctor appointments, etc.” — Shelley H.

“Have to rest after just getting out of bed! Fatigue so deep it’s indescribable in mere words.” — Kevin M.

I can really relate to these statements, especially, Shelley's statement. I look put together but ppl don't realize how much it takes me to get there.

If the mind mends, the body will follow.

Gluten free is working for me!

"If we did all the things we are capable of, we would literally astound ourselves." Thomas Edison


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GRAMMACATHY's Photo GRAMMACATHY Posts: 24,243
6/19/17 1:00 P

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emoticon I did get some salt in me yesterday.

I want to mow the lawn, but it is already hot. Think I better get busy.

Cathy
LALOgriefsupport

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www.facebook.com/ModeODay

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BECCABOO127's Photo BECCABOO127 Posts: 17,990
6/18/17 5:38 P

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try chicken broth with a little salt. you really need the salt if dehydrated.

If the mind mends, the body will follow.

Gluten free is working for me!

"If we did all the things we are capable of, we would literally astound ourselves." Thomas Edison


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GRAMMACATHY's Photo GRAMMACATHY Posts: 24,243
6/18/17 4:30 P

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Just finished weed whacking the yard. Muscles all aquiver. Drank some water with vinegar in it trying to balance me out again.

Cathy
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BECCABOO127's Photo BECCABOO127 Posts: 17,990
6/17/17 2:47 P

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Thank you for the electrolyte info!



If the mind mends, the body will follow.

Gluten free is working for me!

"If we did all the things we are capable of, we would literally astound ourselves." Thomas Edison


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GRAMMACATHY's Photo GRAMMACATHY Posts: 24,243
7/12/16 2:02 A

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draxe.com/electrolyte-imbalance/

Edited by: GRAMMACATHY at: 7/12/2016 (02:03)
Cathy
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GRAMMACATHY's Photo GRAMMACATHY Posts: 24,243
7/10/16 1:31 P

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Two things I can do now to help keep the blood pressure from dropping and causing the CFS symptoms per Nancy...

increase blood volume with electrolytes (gatorade and propel fitness water)

strengthen core muscles to keep circulation good in body.

Cathy
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GRAMMACATHY's Photo GRAMMACATHY Posts: 24,243
7/10/16 1:14 P

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I really like Nancy Klimas. Thank you for the links.

She is currently talking about bio markers. I know that the Brits have a theory that CFS is caused by micro-organisms. It will be nice to have some proof. However, the pharmacy industry will probably push some drug to make big money rather than work on better immune system through healthy living.

Nancy also talks about clusters of these symptoms over history called by different names.

Cathy
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CTUPTON's Photo CTUPTON SparkPoints: (196,793)
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7/10/16 12:42 P

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Now, why didn't I think of looking here for help!!

thanks becca... for pointing this out.

chris

I have to be diligent about caring for myself. 100 DAYS OF WEIGHT LOSS is a great way for me to keep focused. Day 1 is July 1, 2017. Build habits to produce success. Most of these habits I have at least tried before but did not sustain. First habit: delay eating by using a timer.
LONG TERM GOAL: Reduce A1C,BP,tryglicerides,and weight.Evening Eating Sabotage Myself Frustration ..Help! www.sparkpeople.com/myspark/groups_i
ndividual.asp?gid=51755


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BECCABOO127's Photo BECCABOO127 Posts: 17,990
7/7/16 8:50 A

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Nancy Klimas, MD video on YouTube about ME--Myalgic Encephalomyelitis.

www.youtube.com/watch?v=Qxb356oX6cI

There are many videos on YouTube featuring Nancy Klimas. Do a search for her name through YouTube.

Edited by: BECCABOO127 at: 7/7/2016 (08:53)
If the mind mends, the body will follow.

Gluten free is working for me!

"If we did all the things we are capable of, we would literally astound ourselves." Thomas Edison


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BECCABOO127's Photo BECCABOO127 Posts: 17,990
7/7/16 8:47 A

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Edited by: BECCABOO127 at: 7/7/2016 (09:06)
If the mind mends, the body will follow.

Gluten free is working for me!

"If we did all the things we are capable of, we would literally astound ourselves." Thomas Edison


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BECCABOO127's Photo BECCABOO127 Posts: 17,990
7/7/16 8:46 A

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Here is another good article about CFS/ME from womenshealth.gov:

www.womenshealth.gov/publications/ou
r-
publications/fact-sheet/chronic-fatiR>gue-syndrome.html#


It is a faq sheet about CFS/ME

If the mind mends, the body will follow.

Gluten free is working for me!

"If we did all the things we are capable of, we would literally astound ourselves." Thomas Edison


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BECCABOO127's Photo BECCABOO127 Posts: 17,990
7/7/16 8:35 A

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Here is a great article about CFS/ME which was written by the U.S. Department of Health and Human Services. Scroll down to the bottom for information that physicians use in diagnosing CFS/ME. It is written for the physician, but was quite helpful to me in understanding my condition.

www.guideline.gov/content.aspx?id=38
31
6


It was especially helpful in understanding PEM--Post-Exertional Malaise.

Note: The helpful hints under "Sleep," which includes but is not limited to "pacing."

Note 2: The Major Outcomes Considered Are:

Symptom reduction (supportive care like physical therapy) and

Quality of life

Edited by: BECCABOO127 at: 7/7/2016 (08:40)
If the mind mends, the body will follow.

Gluten free is working for me!

"If we did all the things we are capable of, we would literally astound ourselves." Thomas Edison


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GRAMMACATHY's Photo GRAMMACATHY Posts: 24,243
8/28/11 12:18 A

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getwellfromme.com/2011/1-introductio
n/


I love it. The first thing he does is tell us this is his opinion. I am anxious to check out more of his website. Thank you for sharing. I think I will add it to the links connection in the stream too.

Cathy
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SUNNYMADDIE Posts: 188
8/24/11 7:22 P

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I found this website. I like the video formats as understanding words on a not so good day is a problem for me. I also like the pages explaining to friends. I'd be interested in your view.
getwellfromme.com

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GRAMMACATHY's Photo GRAMMACATHY Posts: 24,243
3/19/11 8:03 P

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Chair exercise:

www.sparkpeople.com/resource/
fitness_a
rticles.asp?id=720


Cathy
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GRAMMACATHY's Photo GRAMMACATHY Posts: 24,243
2/17/11 8:33 P

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A resource from Cat. Thanks for the link.

www.anh-usa.org/httpwww-anh-u
sa-orglym
e-disease-misdiagnosed-underr
eport
ed%E2%80%94and-epidemic/


Cathy
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GRAMMACATHY's Photo GRAMMACATHY Posts: 24,243
1/10/11 11:29 A

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www.endfatigue.com

Edited by: GRAMMACATHY at: 1/10/2011 (11:31)
Cathy
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JWOURMS's Photo JWOURMS Posts: 825
1/8/11 5:39 A

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My recovery is based on this book.
I'm not recovered, but I am recoving.
All the best everyone.
Jo
www.amazon.co.uk/gp/product/18490113
2X
/ref=s9_simh_gw_p14_d1_i1?pf_rd_m=A3R>P5ROKL5A1OLE&pf_rd_s=center-2&pf_rd_
r=
1MYV31P8PD9J4WKTKKRC&pf_rd_t=101
&pf_rd
_p=467128533&pf_rd_i=468294


..you may not be able to really feel compassion toward others until you are able to feel compassionate toward yourself. Margaret Paul


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GRAMMACATHY's Photo GRAMMACATHY Posts: 24,243
11/24/10 5:08 A

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www.prohealth.com/me-cfs/symp
toms.cfm


Cathy
LALOgriefsupport

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GRAMMACATHY's Photo GRAMMACATHY Posts: 24,243
11/20/10 5:57 P

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Please add any links, articles, helpful ideas here.

I am going to start with that wonderful link one of our team members shared a while back.

www.cfidsselfhelp.org/library
/2-find-y
our-limits


This is where I got the idea for taking pre-emptive rest breaks.







Cathy
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