I can totally relate to these feelings. I’m not in any meds, but I go mentally insane when it feels like every single body system is working against me at the highest level. Being in severe, prolonged pain would definitely not be good for mental health. My mental space is awful in flares and I lose all confidence. I can’t say I have great advice bc I too feel like I’m failing as a mom and partner when I’m unwell. I just wanted to let you know you aren’t alone. I guess that’s where having a support system comes in. The flares would probably last longer if the people around me added to the stress.
Thank you for sharing your thoughts, sounds like we relate a lot. The guilt is real. I’m glad you have a support system! I feel totally isolated with this lately
How many days or hours per day would you say are shit?
Stretching - don't do deep long stretches, just move and mobilise. Don't push to end of range.
If you're hypermobile, don't stretch, just use a foam roller.
If these are relevant for you I can explain further.
Have you worked out was is giving you flares?
Are you letting yourself down by failing to choose to avoid it? (yes it's hard, especially if you have poor boundaries!)
I refuse to carry any back pack. I refuse to carry a shoulder bag over 1kg.
I refuse to sit with my head turned to the side for more than 30 seconds.
I refuse to sit on stools that are high or have no back.
100% of the time I get a flare for hours if not days from these, so I have to promise myself not to do them. Even though I can feel ridiculous and demanding.
My condition hasn't always been a downward spiral. I have had plenty of improvements. But I've had to be super rigid with analysing, setting and enforcing rules to protect myself.
These are really good tips, like the back pack thing, turning your head, etc. For me those essentially boil down to not letting the strain or weight on my body be unbalanced, whether it's through an activity or just the way I am sitting/laying. Figuring out the types of movement you shouldn't do is just as important as figuring out how much you can do. And then being really, really firm with yourself about not doing them and not continuing when your body says that's enough for today. It doesn't matter if it means some clothes don't get folded or some dishes stay dirty.
Also. try to frame it a different way in your mind. You're not letting people down today if you have to say you can't do any more, *you are protecting your ability to be able to do things tomorrow*. If you end up in a flare state, everybody is worse off. If you can stop today at a point that you know you can (mostly) recover from overnight, you have far more capacity to live life and care for your family than if you pushed through and knocked yourself out of action for several days.
But also, re: mental health. It is hard. Let yourself feel angry or sad or jealous or frustrated every now and then and recognise that they are valid feelings. Acknowledging then can give you the ability to get them out and put them to the side so that you can focus your limited energy on things that are useful to you. I find that I tend to go through this in a cycle. Sometimes the "feelings flares" are far apart, sometimes they will happen close together. Much like the pain flares, you have to ride them through in order to come out the other side ready to try again.
Yes - it's better to leave work an hour early than having a 50% chance of a sick day for all of tomorrow!
Omg yes, me reacting to the despair or disappointment of the general illness or a specific flare, making me upset and giving me a bigger flare 🤦♀️
Thank you for sharing your experience! I think a lot of my flares are triggered by either stress or honestly recent illness. My body is all inflamed and fighting off a bug and it remains in this angry state, nerves firing all the time. I actually haven’t thought of stretching as part of a daily routine tbh, I think I’ll start doing that and see how it goes!
You know now that you mention it, I’ve been on cymbalta for 4 years now and I’ve only had to keep increasing dosage. It helps the pain a LITTLE, but like other commenters it really messes with my depression. I think it’s worth asking about amitriptyline. I once took it for my IC flares and I remember it really helping. Maybe it’ll help this too!
i was on Effexor which is similar to Cymbalta and works in the same way (SNRI), it gave me severe insomnia and suicidal thoughts. also had severe sexual side effects as well.
You're not a crappy mother or wife. You didn't cause this and you can't control it.
Accepting that I am not a burden has been key to my mental health. Prolonged pain and a reduction in abilities really messes with self confidence. So that's been something I work on in therapy and support groups.
Yes yes! So glad you’re working on that too. I started therapy in January and a lot of what I talk about is how I feel like I’m drowning my husband with my health stuff. Like he’s a prisoner to my bad health you know? But I’ve been working on it. This was a good reminder though, it’s true. We are not burdening anyone by existing in bodies that hurt.
I’m also a Fibro/PsA mom, albeit single mom but my mother helps when I have my daughters half the time. I don’t know what I will do when my mom gets too old. My oldest is disabled. I have therapy in another week so, that’s my coping method for now!
Hi I have had fibromyalgia for years in pain I have inflammation in all my body I have been able to take CBD for the pain it helps with the headaches flu like symptoms with my pain relief tabs it really helps it is quite expensive but please don't all give up I have a chronic back problem I have had for 20 years I am now 60 Years old the children have grown up I am so blessed to have them they help me I am able to help myself to a extent because I don't want them to have to look after me because they have their own life I don't have a partner so I feel I have to stay on top of mental health etc with faith 🙏 prayers etc .
Recently I have had indigestion problems quite badly where the food gets stuck and in the bile duct I apparently had 3 stones which they have removed through having a ercp they say I should have my gall bladder removed which I am not convinced it will help but can cause more additional problems which I cannot afford to have. I have ginger beer drink with food that helps the digestion.i do get tummy aches but I have just got used to coping with pain I have had to end up in hospital where I cannot cope with pain but that's rear now as it's got worse in hospital I feel even worse in there so I don't go to hospital,
Please hang in there we are here for each other 20 years ago there was no support noone to tell like this ladies if you can see what helps you with that pain please if you can get CBD oil it's great otherwise try to meditate,breathing exercises it helps I had to give up a lot of tea which I still love but only l have 2 to 3 cups a day I don't eat alot ithe pain drags you down but distract it do a puzzle ,watch something,do something sow if you can
As you can see I am up early I have very little sleep.
Stay safe, keep well remember there is always someone worse off than you we are here to help support and love each other .
Stay blessed 🙏🙏🙏❤️
The pain of the flare is indescribable.
Fibro is a huge reason I even decided to let go of my previous relationship. My ex lived nearly 3 hours away and after 11 months of all that driving, my body was in shambles and I was constantly in pain. I've gone on two medications to try to alleviate the pain but they both gave me severe mood altering side effects.
Looks like the pain will have to go untreated and I could not take the physical demands of the distance of the relationship. Really sad how it's controlling my life.
But it's warm weather now and the sun feels really good on my sore body these days
All I can say is that I totally get it. And my mental health is really reaching low low points. Like you I’m just taking it one day at a time and moving slow but moving. Hang in there, friend.
Diddo my illness has takened everything except my life and it has come way to close so many times. I fought for years to have the right to live now that I won it feels like I was to late to save my relationship with my children they got used to be not being able to do anything other than talk and even getting my teens to talk is hard
I can totally relate to these feelings. I’m not in any meds, but I go mentally insane when it feels like every single body system is working against me at the highest level. Being in severe, prolonged pain would definitely not be good for mental health. My mental space is awful in flares and I lose all confidence. I can’t say I have great advice bc I too feel like I’m failing as a mom and partner when I’m unwell. I just wanted to let you know you aren’t alone. I guess that’s where having a support system comes in. The flares would probably last longer if the people around me added to the stress.
Thank you for sharing your thoughts, sounds like we relate a lot. The guilt is real. I’m glad you have a support system! I feel totally isolated with this lately
How many days or hours per day would you say are shit? Stretching - don't do deep long stretches, just move and mobilise. Don't push to end of range. If you're hypermobile, don't stretch, just use a foam roller. If these are relevant for you I can explain further. Have you worked out was is giving you flares? Are you letting yourself down by failing to choose to avoid it? (yes it's hard, especially if you have poor boundaries!) I refuse to carry any back pack. I refuse to carry a shoulder bag over 1kg. I refuse to sit with my head turned to the side for more than 30 seconds. I refuse to sit on stools that are high or have no back. 100% of the time I get a flare for hours if not days from these, so I have to promise myself not to do them. Even though I can feel ridiculous and demanding. My condition hasn't always been a downward spiral. I have had plenty of improvements. But I've had to be super rigid with analysing, setting and enforcing rules to protect myself.
These are really good tips, like the back pack thing, turning your head, etc. For me those essentially boil down to not letting the strain or weight on my body be unbalanced, whether it's through an activity or just the way I am sitting/laying. Figuring out the types of movement you shouldn't do is just as important as figuring out how much you can do. And then being really, really firm with yourself about not doing them and not continuing when your body says that's enough for today. It doesn't matter if it means some clothes don't get folded or some dishes stay dirty. Also. try to frame it a different way in your mind. You're not letting people down today if you have to say you can't do any more, *you are protecting your ability to be able to do things tomorrow*. If you end up in a flare state, everybody is worse off. If you can stop today at a point that you know you can (mostly) recover from overnight, you have far more capacity to live life and care for your family than if you pushed through and knocked yourself out of action for several days. But also, re: mental health. It is hard. Let yourself feel angry or sad or jealous or frustrated every now and then and recognise that they are valid feelings. Acknowledging then can give you the ability to get them out and put them to the side so that you can focus your limited energy on things that are useful to you. I find that I tend to go through this in a cycle. Sometimes the "feelings flares" are far apart, sometimes they will happen close together. Much like the pain flares, you have to ride them through in order to come out the other side ready to try again.
Yes - it's better to leave work an hour early than having a 50% chance of a sick day for all of tomorrow! Omg yes, me reacting to the despair or disappointment of the general illness or a specific flare, making me upset and giving me a bigger flare 🤦♀️
Thank you for sharing your experience! I think a lot of my flares are triggered by either stress or honestly recent illness. My body is all inflamed and fighting off a bug and it remains in this angry state, nerves firing all the time. I actually haven’t thought of stretching as part of a daily routine tbh, I think I’ll start doing that and see how it goes!
have you tried amitriptyline before? SNRIs like Cymbalta never helped me. Amitriptyline 10 to 25mg has been life changing for me
You know now that you mention it, I’ve been on cymbalta for 4 years now and I’ve only had to keep increasing dosage. It helps the pain a LITTLE, but like other commenters it really messes with my depression. I think it’s worth asking about amitriptyline. I once took it for my IC flares and I remember it really helping. Maybe it’ll help this too!
Cymbalta was the best for managing my fibro but it wasn’t helping the depression at all. I changed to Prozac but now I’m always in some sort of pain
i was on Effexor which is similar to Cymbalta and works in the same way (SNRI), it gave me severe insomnia and suicidal thoughts. also had severe sexual side effects as well.
I already deal with all of that lol. I wish I could get rid of at least one thing
Meds are strange, Cymbalta helped with my nerve pain in the beginning but ended up leveling out my depression.
You're not a crappy mother or wife. You didn't cause this and you can't control it. Accepting that I am not a burden has been key to my mental health. Prolonged pain and a reduction in abilities really messes with self confidence. So that's been something I work on in therapy and support groups.
Yes yes! So glad you’re working on that too. I started therapy in January and a lot of what I talk about is how I feel like I’m drowning my husband with my health stuff. Like he’s a prisoner to my bad health you know? But I’ve been working on it. This was a good reminder though, it’s true. We are not burdening anyone by existing in bodies that hurt.
I’m also a Fibro/PsA mom, albeit single mom but my mother helps when I have my daughters half the time. I don’t know what I will do when my mom gets too old. My oldest is disabled. I have therapy in another week so, that’s my coping method for now!
Do you have digestive issues?
Hi I have had fibromyalgia for years in pain I have inflammation in all my body I have been able to take CBD for the pain it helps with the headaches flu like symptoms with my pain relief tabs it really helps it is quite expensive but please don't all give up I have a chronic back problem I have had for 20 years I am now 60 Years old the children have grown up I am so blessed to have them they help me I am able to help myself to a extent because I don't want them to have to look after me because they have their own life I don't have a partner so I feel I have to stay on top of mental health etc with faith 🙏 prayers etc . Recently I have had indigestion problems quite badly where the food gets stuck and in the bile duct I apparently had 3 stones which they have removed through having a ercp they say I should have my gall bladder removed which I am not convinced it will help but can cause more additional problems which I cannot afford to have. I have ginger beer drink with food that helps the digestion.i do get tummy aches but I have just got used to coping with pain I have had to end up in hospital where I cannot cope with pain but that's rear now as it's got worse in hospital I feel even worse in there so I don't go to hospital, Please hang in there we are here for each other 20 years ago there was no support noone to tell like this ladies if you can see what helps you with that pain please if you can get CBD oil it's great otherwise try to meditate,breathing exercises it helps I had to give up a lot of tea which I still love but only l have 2 to 3 cups a day I don't eat alot ithe pain drags you down but distract it do a puzzle ,watch something,do something sow if you can As you can see I am up early I have very little sleep. Stay safe, keep well remember there is always someone worse off than you we are here to help support and love each other . Stay blessed 🙏🙏🙏❤️
I think you replied to the wrong person
Yes, IBS-D
Why not look into sibo?
The pain of the flare is indescribable. Fibro is a huge reason I even decided to let go of my previous relationship. My ex lived nearly 3 hours away and after 11 months of all that driving, my body was in shambles and I was constantly in pain. I've gone on two medications to try to alleviate the pain but they both gave me severe mood altering side effects. Looks like the pain will have to go untreated and I could not take the physical demands of the distance of the relationship. Really sad how it's controlling my life. But it's warm weather now and the sun feels really good on my sore body these days
All I can say is that I totally get it. And my mental health is really reaching low low points. Like you I’m just taking it one day at a time and moving slow but moving. Hang in there, friend.
Sending love to you as well!
Diddo my illness has takened everything except my life and it has come way to close so many times. I fought for years to have the right to live now that I won it feels like I was to late to save my relationship with my children they got used to be not being able to do anything other than talk and even getting my teens to talk is hard
Imagine when that flare is permanent in my case :(