Open - Minded: This forum ( for me) has and is a... - NRAS

NRAS

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Open - Minded

Shalf profile image
21 Replies

This forum ( for me) has and is a lifeline in what I am going through. I literally shook with my diagnosis of seropostive RA and the debilitating Fibromyalgia that makes my muscles feel like they have done a marathon when in reality, they have simply walked up some stairs. That is hugely difficult for a person who has hiked and walked the majority of my life! I am 50 now. A young 50 in everything I do! I am a person who is receptive. I wear my heart on my sleeve and I care! In every environment, there are different personalities, different opinions. I get that. My aim on here, ( for myself) initially, was to gain understanding. I felt very misunderstood in the outside world of RA/RD and every other Inflammatory Disease. I soon realised ( on here) the vast amount of people who were in the same situation. My empathetic nature kicked in! We are all different people with the common ground of Inflammatory Arthritis. I am not here to upset anyone. On the contrary, I stay here in support of myself and others. Please - be open minded to every comment. As I have said before and I will say again, my health and wellbeing mentally and physically has been helped in the beginning by Sylvi ( A warmhearted supportive diamond) Helixhelix ( a fantastic knowledgeable woman who has everyone's interests at heart) NettieNet - (An upbeat inspirational woman) Nomoreheels -( A woman who dedicates so much of her time helping others) it doesn't go unnoticed NMH) and so many others. Stay open minded to what is true and real.

Signing off - Suzie X

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Shalf profile image
Shalf
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21 Replies
VeronicaF profile image
VeronicaF

I understand what you go through I have Fibromyalgia for years and just recently got told I now have RA too and sometimes its even hard to hold a brush to my hair,so sending you big hugs, know how you feel and what your going through xx

Shalf profile image
Shalf in reply to VeronicaF

Thanks so much Veronica. The change in me physically has been quite dramatic! An uphill struggle and all that! X

sylvi profile image
sylvi

We are always here for you darling. I love a good laugh you only have to look at my hair and nails to know that darling.xxxx

Shalf profile image
Shalf in reply to sylvi

I must love a laugh too then. I will spare you the photo! 😂 Xx

sylvi profile image
sylvi in reply to Shalf

Coward darling.xxx

Shalf profile image
Shalf in reply to sylvi

Meeee- Never! ;) X

sylvi profile image
sylvi in reply to Shalf

Typical never has any nerve!!!!!!.xxx

Shalf profile image
Shalf in reply to sylvi

😁 xxx

That's kind of you to say.

You'll be Ok. People care you knows. :-D

Have a good, and don't get up to any mischief...unless it's fun.

barbieg profile image
barbieg

I was diagnosed with Fibromyalgia 28yrs ago , and RA 15yrs ago so I understand how you feel. I joined this forum years ago, but mostly read the posts as I don’t always feel like joining in. Life is tough sometimes with constant pain and the fact that people just don’t understand RA or Fibromyalgia, which is why I joined this forum. I have very good friends who always make me laugh and for that I am very grateful. The problem is you feel so alone when you are always in pain , life is tough, so this forum is a life line. I also have Oral Lichen Planus (another auto immune disease) which luckily I have got under control so I’m grateful for that. I say to myself, these are the cards I’ve been dealt , so I have to just get on with my life as best I can. Having lost my beloved hubby very suddenly 2 yrs ago in front of me, I’ve learnt to cope and make the best of my life. I like to think hubby would be proud of me .

Shalf profile image
Shalf in reply to barbieg

Where are you ? I travel a lot. If I can, I will.

Would love to pop in if passing by. In the meantime, stay strong pet Xx

barbieg profile image
barbieg in reply to Shalf

I’m on the Suffolk / Essex border.

Shalf profile image
Shalf in reply to barbieg

Think your hubby would be very proud of you! RA plus Fibro is very hard to deal with. The chronic fatigue is just awful. X

marie66 profile image
marie66

Hi I'm another with the double whammy of RA and Fibro - it's not an easy one as either in pain or fatigued. This forum is a fount of knowledge and caring and I'd be lost without it! ((hugs)) M x

Shalf profile image
Shalf in reply to marie66

Absolutely right. Pain or fatigued and a lot of the time, both! How do you cope with the exhaustion?

marie66 profile image
marie66 in reply to Shalf

With difficulty! lol It's a challenge that's for sure! I'm finding since I started an aquafit low class at my local swimming pool I seem to have a bit more energy. Only down side is it makes my ankles swell that bit more but I'm enjoying it so I'm persevering! ((hugs)) M x

Mmrr profile image
Mmrr

This forum has been so helpful in so many ways.........a real lifeine with many understanding comments and support.

nomoreheels profile image
nomoreheels

How kind of you to single me out with other admirables on here! We're each our own character & some just don't meld sometimes, but we're each here because of a common bond so just have to try to rub along, goodness knows there's enough going on outside of the forum to deal with. I've been challenged too but if you've tried to explain & still fail you've to just let it wash over you, some people are never wrong. Life's too short to hold a grudge, get on & move on. 🙈🙉🙊😚x

Shalf profile image
Shalf in reply to nomoreheels

Your welcome 😄

Damaged profile image
Damaged

Not sure what you mean by signing off. It sounds like you are leaving because someone said something about a post ? I hope that is not the case. This forum as with all health forums, should be aimed at supporting each other.

As with many autoimmune diseases, we often have many labels. Whatever they maybe the end result is the same. We feel awful most of the time. There is always hope. New discoveries are made on a all the time.

I have tried to cut out the people who are negative. I let it float past. People will find their own way to cope. The sad part is that can often be negative. All you can do is keep yourself positive and focus on the good days.

Shalf profile image
Shalf in reply to Damaged

Noooo, not at all. Needed sleep! and been checking out holidays in the sun! 😎 - looks like Cyprus! 😀

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