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Which symptoms are the most distressing for patients?

Jul 9, 2019

In March we reached out to our members and asked them a difficult question, If you could get rid of one of your symptoms, which one would it be and why?. We received an overwhelming amount of responses and we were delighted to get so much feedback and insights into how our members feel. Despite everyone suffering from different conditions, many of the symptoms being experienced were similar.

Which symptoms are the most distressing for patients?

Fatigue

Fatigue and lethargy were the most cited symptoms that caused difficulty for our members. This isn’t surprising as we already did a survey and discovered that over 70% of our members are feeling exhausted on a daily basis.

>>Read the survey results here 

Several members, such as @Squidge‍, mentioned how they would love to “wake up even just once and feel like I had slept well and was able to kick start my day.” Another member, @Winnie1000, echoed this sentiment with a wish to, “just for once, wake up feeling refreshed instead of so awfully tired.”

Other members such as @babyspoon‍, @Danilou‍ and @ann2019 all agreed that fatigue was greatly hindering their lives.

Pain

The second most common symptom to be brought up was the daily, constant pain that members suffer from. Whether it is from multiple sclerosis or osteoarthritis, chronic pain is having a massive impact of on our members’ quality of life.

A member, @GLOJO1‍, tells us about how her chronic pain has made her “housebound for six years”. Living with chronic pain not only affects you physically but mentally too, as one member, @Mandy59‍ pointed out, “The pain makes me miserable”.

>>Join our forum about treatments for chronic pain 

Pain is a constant companion or many of our members, with @Bigj1969‍ declaring, "I would love one day without the chronic pain. I never get a day without it”. Other members, such as @Autumn Fairy‍, @LynnDoherty‍ and @JenniferGrace‍ ‍ with these statements about the life impacting element of chronic pain.

Depression and loneliness

Unfortunately, depression and loneliness can often be a companion to dealing with a chronic condition. Some members feel isolated because of their illness and having to put up a veneer of feeling okay. One of our members phrased this eloquently with, “For me, it's the withdrawal from socialising, the not wanting to talk about difficulties and having to pretend. Yes I feel the emotional impacts, I'm very, very lonely.”

For others, it is depression that they found the most difficult symptoms to deal with. A member described it as, “The hollow, gut wrenching, good for nothing feeling you get from depression.”

Brain fog

From certain side effects of medication, or from a certain condition, many of our members mentioned how brain fog is a debilitating symptom experienced.

>>Read our article about tips for fighting brain fog 

Brain fog stops sufferers from being able to think consistently or focus properly, as @Gentlemanmike‍ describes it, “The brain fog which stops me from doing things I like as it stops me being able to remember things”. This is repeated by @BrianMwith, “my severe emotional block to learning and performing normal work tasks.

Positivity

However, even though you all described your individual difficulties, you also impressed us with your positivity and hunger for appreciating the small things in life.

>>Join our discussion on life’s little pleasures

Even though every day you are experiencing pain, fatigue, brain fog and all the other different and nuanced symptoms of depression, there was also a resounding voice of strength from you. Here are some of the lovely words of strength and encouragement that our members said:

@Maggie-mae‍  “But, I wake up every morning so that I am very thankful of x”

@Izzyjamal‍  “Don’t give up!!!!! NEVER!!!!”

@Neil1964  “to all of you very brave people, never give up or give in just embrace your new freedom.”

 

Thank you all so much for participating in our discussions, you make Carenity what it is!

How about you? What symptom would you get rid of? Do you agree with all the feelings and opinions shared?

avatar JosephineO

Author: JosephineO, Community Manager

Josephine is the Community Manager of the UK with a Master’s in Publishing. She is a strong believer in the power of words and strives to make Carenity UK a comforting, vibrant and informative community for both patients and their families.

Comments

on 7/10/19

My heart goes out to all of you suffering as I know all about it... but now I have some great news, at the Hospital yesterday for my check up, had been feeling good for a while now , was told they think my R/H has burned itself out, are cutting down my Humria to once a month to see how I get on .Here;s  to more good news.

on 7/18/19

mine is always being breathless it's so worrying 

on 7/18/19

I would remove cancer from the system. Good hope to all. 

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