Mental pain?

[CopingwithEx]

We all know fibromyalgia amplifies our pain sensation. Do you think it amplifies our mental health? My brain sometimes feels like it’s been turned up full dial. My nervous system feels overloaded sometimes and my pupils dilate and my insides tremble like I’m on drugs!! (I’m not) I think I’m really struggling with my mental health due to not being able to work at 22 and just feeling low along with the fact I’ve had an anxiety disorder since I was 11. My mind/brain feels like it’s in pain too. Does anyone else really struggle mentally?

[Sleepyhead22]

Hello,

I was 23 when I had to stop working. It's hard being young and seeing people much older than me doing more than I can.

Before I got diagnosed with CFS and fibro, the dr thought I had GAD because I was having regular panic attacks and I was very anxious all the time. I felt like you did sometimes like my dial was turned up. For me it was because I didnt know what was going on and I was constantly pushing my body beyond what it could do and giving myself a hard time about it.

For me there is definitely a big link between overdoing it and my mental health. When I listen to my body it helps a lot. It also took me time and help from professionals to accept my situation and figure out how to live within my circumstances.

It was really hard for awhile and I also went through a phase of mourning for my health.

[CopingwithEx in reply to Sleepyhead22]

Hi thank you for your reply! I fell ill at 19 with cfs and fibro and had to stop working at 20. I’m really hoping to get back to work as that really affects my mental health. How old are you now? I feel I’m lucky as I can still do more than others can so I don’t want to complain too much. It’s awful enough having these illnesses but to have them so young is just devastating. How are you feeling? I have periods when I’m fine and then other days I’m bedbound! Hard when doctors don’t listen to you as all tests come back great. There is a link between Fibro/cfs and mental illness. Gentle hugs

[Painny]

The pain in my brain and head is so bad that it even goes numb …so in short the answer is yes and the internal tremors even worse. Wish you and everyone a good recovery but we all know with Fibromyalgia there is no light at the end of tunnel

All the best

[desquinn Partner Volunteer FMAUK Trustee in reply to Painny]

"but we all know with Fibromyalgia there is no light at the end of tunnel"

Cannot agree with this as I have known many people that have had their lot improve with changes of meds, attitudes, or approaches. Everyone's journey is different but if I take one of our staff members journey and meds and changes in approach allowed them to do a lot more in life, get into employment and contribute a great deal to our charity. I am sure she would not share your view and there are other stories on here and from my time at the charity.

However I share this one as I know she does not mind me talking about it

[Painny in reply to desquinn]

Thank you for the positive feedback Des, I’m happy for those who can overstretch; hats off to you for running this charity despite your own challenges. FMA U.K. is an amazing charity with amazing people running it. Thumps up 🆙👍

[Hazel_Angelstar Administrator FMA UK Staff in reply to Painny]

As the staff member who Des is talking about, I have to totally disagree about the being no light at end of tunnel and overstretching.

I've had fibro 28 years, and up to 10 years ago I frequently felt that life with fibromyalgia was existing not living. I felt a burden to my family, and didn't want to do anything or go anywhere. A change of medication, a realisation that doctors did not hold all the answers and I had to take responsibility for my own self management, small lifestyle changes slowly began to change things around.

I now enjoy a much better quality of life. I work part time for the charity as office admin - and when I started as a volunteer in 2010 (when I used to do work on laptop from my bed) I would have never have even considered that I would have become a member of staff.

I work my 3 days, enjoy crafts and hobbies and spend time with family /friends. There's very little that I let having fibromyalgia stop me from doing. This is all done without me 'overstretching' or pushing myself. (though do not get me wrong, I do still manage to overdo things, when I should know better)

So while I fully understand how it feels when there is no light at the end of the tunnel.... That does not mean that the light will never appear... and hopefully my story can help give others hope xxx

[Painny in reply to Hazel_Angelstar]

Hi Angel

It’s good to disagree. As I have said I’m glad it has worked out for you even without over stretching.

Personally I have not been sitting on my laurel, despite all the pain I worked for 25 years in my area of speciality and even managed to get two post graduate qualifications.

I still continue to do things in spite of severe deterioration in health (as I have no other choice) and from hearing the story of members it’s clear none of us managed to conquer the fatigue and pain.

Hope you continue to get better and better xx

[Hazel_Angelstar Administrator FMA UK Staff in reply to Painny]

I wouldn't say I've managed to conquer pain, fatigue or brain fog.... and I do still struggle with all on a daily basis - for me personally (and I fully appreciate that this doesn't apply to everyone) I have found a way of managing symptoms that allows me to do more and enjoy what I'm doing.

Part of what makes the fibromyalgia journey so difficult for everyone is that it is so individual in how it affects us. Xxx

[Hidden]

Yes my pupils dilate to its because of your nervous system being in overdrive along with no rem sleep and your body manifests symtoms of the body not being able to cope any more I did to much for to long then bam it hit me most days I feel like I'm on drugs and been hit by a car its horrendous definitely has a huge impact on our mental health get to know your symptoms so u don't be afraid of them there's so many I know but I was so afraid of this until I learnt to except it now I tell the stabbing pain to f off even though my head tells me is something it's internal and sinister I now no this beast x

[Dizzytwo Moderator in reply to Hidden]

Good for you xx

[Callyv in reply to Hidden]

Well done on telling the pain where to go. It is a fact that our pain is whatever our brain decides it wants us to feel. if we know that the pain is not the cause of physical tissue damage, that we aren’t going to bleed to death or be consumed by some horrible disease ( because tests and doctors already ruled those out), we can push the pain away . I don’t manage it every time, I guess we have to be in the right mindset, but I’m so pleased to see another soul who thinks in similar lines to me.

[Hidden in reply to Callyv]

Wow that touched me thank u yes it's a daily battle but u gotta over come or it will consume xxxxx

[ReciesPeaces]

I am so sorry you are going through this at 22. I started having symptoms around my late 20s, now I’m 40 and on the couch most days. Or bed if my fiancé is home. I hate just laying around in front of people, especially if they are doing the work I know I should be doing. I’m not sure if mental health or our brain amplifies it or not but it sure feels like it. Anytime you need to talk or vent you can message. It’s not like I have a lot going on anyway lol. In the meantime, try your best to find your happy place. It’s difficult sometimes but it helps

[chrissy30]

Having had Fibro for years and years I can say with all honesty I'm never surprised at the symptoms it comes up with and how the one experiences the horrid 'fibro fog', pain and various muscle spasms and feeling like one's brain is rattling around in one's skull. It is a good idea to check out any new symptoms with your doctor. Sometimes Fibro can mask other symptoms if one is so use to dealing with it. I'm 73 and developed Fibromyalgia in my early 40's but managed to battle through until a doctor diagnosed what the problem was. I had been through trauma and they reckoned it was that that could have triggered fibro off also I had other health problems which other doctor's had dismissed but then a good doctor found out my problem which was physical and not imaginary or due to 'stress'. I sympathise with you.

[LaurieLee]

Mine started before 20, I managed to continue til 28, by seeing a good chiropractor and keeping active as possible. If at all possible try swimming and/or reformer Pilates and your way of dealing with mental health, physical stuff helps Fibro and mental. However you have to find that line, you do too much, you pay the price, pacing is essential for everything. Get PIP if poss and work as long as poss, even if part time or working from home would be more ideal. I wish I had, back then. Good luck