Diagnosed in Aug, flaring badly

[Nuala50]

Hi all,
I'm new to fibro as a reality, though ill for 3.5 years with various 'diagnoses' e.g. IBS, depression. Feeling crazy, sore and mad as a cat the last few weeks and today was the last straw. My blurry eyes really affected my driving all day and I scraped the side of my neighbour's van with my car about an hour ago. So embarrassed and wondering if others find driving harder because of fibro pain, fogginess etc.? This is the lowest I have been with fibro, I feel it's ruining my life/sleep/happiness.

 

[sunkacola]

Hi Nuala, I can relate to what you are saying, as can many many of us. Being told it is essentially all in your mind is insulting and crazy-making. At the same time, however, my experience is that when I was put on the right kind of anti-depressant/anti-anxiety medication, it really helped. Not with the pain as such... I still have times when everything hurts, and I am in deep pain, and almost all of the time I have pain somewhere in my body, it just moves around.. But it helps me to deal with the considerable stress that having chronic pain inflicts on us, and so my suffering from the pain is less because I have a more positive attitude toward it. I don't think this would be possible for me without the anti-anxiety medication I take, and it doesn't have bad side effects for me.

When the pain is bad enough I simply cannot drive, and don't try to, as it would be dangerous. I try to look at the days that I have to cancel my plans as days when I can just stay home and relax with the dogs and cats and read, and not as Lost Days. this isn't easy, and it took practice, but I am better at it now. I found if I spent that day being angry or resentful or depressed about it, it only made the pain worse.

 

[Nuala50]

Thanks so much, Sunkacola, for your reply. I am struggling with the acceptance part, I guess. It just feels like all fun and joy have been taken from me with this bloody thing. I've always loved eating out, wine, travel and all those things are now difficult and/or not worth the aftermath. I am going to try to find a cbt therapist to shift my thinking. Meanwhile, I follow a fodmap diet, exercise as much as I can manage. I'm stll learning and a bit narky
I read somewhere that fibro is caused by stress. Is that accepted as truth?

 

[sjbrown]

I can completely relate. This "THING" has affected my life in a way that I truly hate. Never know one day to the next how your going to feel. It IS depressing often and emotionally draining. It has affect my vision, hearing etc. I am getting ready to try Cymbalta because gabapentin did not work for me. All this trial and error is like a rollercoaster out of control. I have to work hard every day to stay positive. I dont know about only stress being a trigger. I dont feel like mine is triggered by stress. I have yet to figure out why............I am thinking that maybe for me menopause is also a factor. Just be happy to get back to a happy medium. I feel like crap way more than I feel ok.

 

[Exqsmwa]

Thanks so much, Sunkacola, for your reply. I am struggling with the acceptance part, I guess. It just feels like all fun and joy have been taken from me with this bloody thing. I've always loved eating out, wine, travel and all those things are now difficult and/or not worth the aftermath. I am going to try to find a cbt therapist to shift my thinking. Meanwhile, I follow a fodmap diet, exercise as much as I can manage. I'm stll learning and a bit narky
I read somewhere that fibro is caused by stress. Is that accepted as truth?

I would say stress can make it worse but isn't particularly the cause because, after 25 yrs of it, Fibro is still there stressed or not.

 

[Nuala50]

Thanks so much. I'm trying to understand it all x

 

[Nuala50]

I can completely relate. This "THING" has affected my life in a way that I truly hate. Never know one day to the next how your going to feel. It IS depressing often and emotionally draining. It has affect my vision, hearing etc. I am getting ready to try Cymbalta because gabapentin did not work for me. All this trial and error is like a rollercoaster out of control. I have to work hard every day to stay positive. I dont know about only stress being a trigger. I dont feel like mine is triggered by stress. I have yet to figure out why............I am thinking that maybe for me menopause is also a factor. Just be happy to get back to a happy medium. I feel like crap way more than I feel ok.

Me too, so many wretched days, sigh.
My doc talked about menopause (peri) and I was annoyed with him. How does that explain the pain?! But, as time goes on, I wonder if the two are linked, somehow, peri and fibro. I dunno. I'm all at sea and quite peed off!
Stay strong, SJ x

 

[sjbrown]

I defintely think menopause is playing a role for me. My primary believes I have more than one thing going on. Most days my mood isnt the best but I try really hard to stay positive and proactive.

Sabrina

 

[Nuala50]

I defintely think menopause is playing a role for me. My primary believes I have more than one thing going on. Most days my mood isnt the best but I try really hard to stay positive and proactive.

Sabrina

Yes, more than one thing sounds right. Not helped by fibro having a gazillion offshoot symptoms! N x

 

[sunkacola]

Stress is definitely something that exacerbates the symptoms we feel. I can have a terribly painful day after a day in which there was a lot of stress in my life. I don't think any of the scientists studying this would say that it is caused by stress initially, though.

Your best defense is: eat well, Exercise very regularly, keep moving. And work out a way of having a positive attitude. the latter comes with time, but it won't come at all without working on it. Being negative, angry, etc. is stressful = more pain. I am not saying it's easy to stay positive, and no one is positive all the time. But you gotta do your best. It's best for you, best for anyone who is around you on a regular basis.

 

[Sezzyvibes]

Hi,

I am a tiny Dot on this planet and my outlook may help someone and it may not, but my outlook has helped me enormously on my journey with Fibro,

I treat my Fibro with the respect it deserves. Sure it has made my life Difficult or even stopped me from doing the things I love to do pre Fibro, but I don’t define my life on these past activities. I have learnt after 12 months of Fibro to accept my limitations and show gratitude that I am now in a life that has made me slow down, appreciate living in the now, appreciate my loved ones and really see them. I have Depression but my meds control this, I have fatigue but my resting and sleep help to eleviate this, I have chronic arthritis, swelling and pain in my hands but diet and a good lifestyle help my symptoms, I have headaches, leg pain and cramps but again my diet help me. I have vision problems now which limit my driving as with light and noise sensitivity, I also suffer from anxiety which again medications help me. etc etc etc.

My Fibro life has taught me to look at the water droplets on the leaves whilst being forced to have a slow walk instead of cramming in a fast 40 minute power walk into my day somewhere, to smell and really taste my foods, I listen to people talking to me instead of being distracted by what I have to do next.

Yes a lot of my days are filled with extreme pain/fatigue and inability to do what I used to do but wow, there is another world out there albeit from the one I have had for 56 years. I have time now to do all the things I kept putting off because I was too busy, I have read so many books, I slowly walk the shores of my hometown when I can and collect driftwood/shells/sea glass and I create sculptures with them, I draw my ideas and I also make lamps from some of my pieces. It is a slow process at times but rediscovering my talents would never of happened if it wasn’t for Fibro. I was angry at my Fibro for changing who I was but now I have made peace with it and I now see it manifested in my body for a reason and that for me was to stop, slow down, smell the roses, be grateful for where I am today and to listen to my body. I am proud of my ability to not let my Fibro define who I am, but to let it show me a hidden side of me that I had totally forgotten about since childhood.
Lots of love to all of you fellow Fibro affected people all the way from Sydney Australia

 

[sjbrown]

Hi,

I am a tiny Dot on this planet and my outlook may help someone and it may not, but my outlook has helped me enormously on my journey with Fibro,

I treat my Fibro with the respect it deserves. Sure it has made my life Difficult or even stopped me from doing the things I love to do pre Fibro, but I don’t define my life on these past activities. I have learnt after 12 months of Fibro to accept my limitations and show gratitude that I am now in a life that has made me slow down, appreciate living in the now, appreciate my loved ones and really see them. I have Depression but my meds control this, I have fatigue but my resting and sleep help to eleviate this, I have chronic arthritis, swelling and pain in my hands but diet and a good lifestyle help my symptoms, I have headaches, leg pain and cramps but again my diet help me. I have vision problems now which limit my driving as with light and noise sensitivity, I also suffer from anxiety which again medications help me. etc etc etc.

My Fibro life has taught me to look at the water droplets on the leaves whilst being forced to have a slow walk instead of cramming in a fast 40 minute power walk into my day somewhere, to smell and really taste my foods, I listen to people talking to me instead of being distracted by what I have to do next.

Yes a lot of my days are filled with extreme pain/fatigue and inability to do what I used to do but wow, there is another world out there albeit from the one I have had for 56 years. I have time now to do all the things I kept putting off because I was too busy, I have read so many books, I slowly walk the shores of my hometown when I can and collect driftwood/shells/sea glass and I create sculptures with them, I draw my ideas and I also make lamps from some of my pieces. It is a slow process at times but rediscovering my talents would never of happened if it wasn’t for Fibro. I was angry at my Fibro for changing who I was but now I have made peace with it and I now see it manifested in my body for a reason and that for me was to stop, slow down, smell the roses, be grateful for where I am today and to listen to my body. I am proud of my ability to not let my Fibro define who I am, but to let it show me a hidden side of me that I had totally forgotten about since childhood.
Lots of love to all of you fellow Fibro affected people all the way from Sydney Australia

Thank you so much for this!! You have the right perspective for sure!! This is a wonderful way to look at this. Thank you for sharing it!!

 

[Sezzyvibes]

Thankyou Sabrina, as hard as days can be, don’t let Fibro define you. That’s my motto and it has helped me enormously. I hope my sharing hasn’t trivialised the suffering we go through, it is just my perspective and how it has helped me.

 

[sunkacola]

Sezzyvibes, Good for you.
I, too, have learned to take a positive view on this, and Fibro really is not all bad even though at first it seems that way to most people.

Taking things the way that you do and that I do is actually very beneficial to us in a physical way as well as mental and emotional, because stress severely exacerbates the symptoms and pain we have, and taking a slow and positive view on it alleviates a large amount of that stress.

I wish I could just give this to new people who are focusing on anger and resentment. It's understandable, but so unproductive. Having fibro is not the worst thing in the world; so many people have it worse than we do. We all just have to take what we have and do our best with it.

Your motto has been also my motto. I am so glad to find another person here who is doing that. Maybe we positive folks can encourage the people who haven't been able to do this yet. I hope so.

 

[Nuala50]

'I now see it manifested in my body for a reason and that for me was to stop, slow down, smell the roses, be grateful for where I am today and to listen to my body.'

I only got my diagnosis in August, so am still learning and, yes, feeling resentful about the limitations fibro causes, but have also realised the above is true. I was doing too much and I need to slow down. It's hard to feel positive, it's something to learn, like any learning. I think we're all working on it, but it doesn't come overnight, so don't be too impatient with those of us still struggling.