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We want to hear from you: please tell us about your experience of the online community.

Hi, my name is 1488girl! Anyone else with ME or fibromyalgia?

1488girl

Hi everyone. I've just been diagnosed with M.E and fibromyalgia. Anyone else with these conditions?... would love to speak to anyone who can understand what I am going through.
Many Thanks!

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Comments

SueHeath

Morning @1488girl welcome to our great group, I have seen a lot of post's mentioning "fibromyalgia" so you on the right forum, there are lots of us with our own demons/illness/disability and we will talk about anything ha ha
I am sure you will be greeted from some of the other members today when the site wakes up.

In the mean time if your ready to, have a look around the site, any problems just ask some one is bound to be on line to help.

I look forward to seeing you around.

Tori_Scope

Welcome to the community @1488girl

It's great to have you on board! How's your day been so far?

As SueHeath has said, we have plenty of members with these conditions on the community, so you're in good company. Posts about ME and fibromyalgia tend to pop up in different categories on the community, but here are a few places you might be particularly interested in visiting:

Is there anything in particular that you're going through right now that you wanted to share with us?

Alex_Alumni

Hello and welcome from me too @1488girl and thanks for reaching out and joining the community today

Let us know if you need help with anything, and I hope you'll find the forum a friendly and welcoming place to spend time.

Alex

Binky1234

1488girl said:

Hi everyone. I've just been diagnosed with M.E and fibromyalgia. Anyone else with these conditions?... would love to speak to anyone who can understand what I am going through.
Many Thanks!

Hi I also have fibromyalgia and imho it is a truly horrible illness I was diagnosed in 2020 but more than likely had it for many years before diagnosis as I have other health conditions that mimic fibromyalgia.

I also have Crohns disease, b12 deficiency, crohns arthritis among other stuff going on what I would say about fibromyalgia is just go at your own pace, rest when needed and do not be afraid to cancel friends and family at the last minute, you must put your health first and do everything the Occupational therapist, rheumatologist advices.
As for pain relief very little helps on my bad days with my fibromyalgia but everyone is different plus a lot of meds for fibromyalgia I cannot take because of my Crohns.

What seems to work for me is a combination of two antidepressants.

Pain management helps me a huge amount but I think your GP or rheumatologist if you have one needs to arrange this, if offered I would advise taking it up.

With my fibromyalgia it seems a uphill struggle that you can't make sense off. Feels like you've pulled every muscle in your body by overdoing the gym...yet all you've done is put the kettle on...just can't make sense of what and why we're feeling what we feel, and don't get me started on Fibro fog that is when I thought I was going mad when that 1st happened.

My occupational therapist gave me a huge loads of NHS leaflets on fibromyalgia. My rheumatologist sent me away with a booklet called Fibromyalgia versus arthritis that was informative at the start of my journey. This website has booklets that you can download it helped me and my family understand fibromyalgia. I feel the least we can do is to try and understand our condition.

https://www.versusarthritis.org/order-our-information

Hope posting this link is allowed if not please remove and accept my apologies.

Tori_Scope

Thank you so much for sharing all of this @Binky1234! I hope that @1488girl finds it helpful! I'm glad you two have linked up.

That kind of link is allowed, yes, don't worry @Binky1234

Mslincs55

Hi I have fibromyalgia and arthritis, my days are just a nightmare, here to talk

Tori_Scope

I'm sorry to hear that @Mslincs55

I hope that connecting with these other members will be a positive outlet for you to share your experiences.

What do you think could change that'd make daily life less of a nightmare for you?

Jo_2022

Hi @1488girl! 😄 A warm welcome to you on the online community. I am so sorry to hear about the Fibromyalgia and ME. That sounds like a lot to cope with.

I personally have chronic pain following a back injury. I feel your pain and I have lived experience of how pain can reduce the quality of life.

You may find the links below helpful, they certainly helped me:

https://www.vidyamala-burch.com/

https://painconcern.org.uk/

How is your pain today? Finding time to do things that help you relax and make you feel happy are essential. Take care 😄