How do you cope?

[sunkacola]

Hi Edit, and welcome to the forum. Your post is not too long, and you are welcome to tell us what is going on for you. Also, no worries about your English.

Stress pretty much always makes fibro symptoms worse, so one of the things we all need to do for ourselves is remove as much of the stress from our lives as possible. Is there a way that you can just not be involved at all with the relatives who are fighting? If they talk to you about it, maybe just tell them you don't want to hear about it any more?

I think losing a child to death is the worst thing that can happen to a person, so your not being the same since makes sense. My partner died 8 years ago and I have never been the same person since then. You can't be. But you can have a life. Just a different one. The loss and the grief never go away, are always there, so it doesn't "get better". But it does get different, and you learn to cope with it.

I am also one who contemplates whether continuing in life is worth it or not, at times. And for me also it is always my beloved animal companions who keep me here, as I cannot ever even think of abandoning them.

As for meditation, there are so many different kinds of meditation that the first thing you'd have to do is choose which kind you want to practice. There is one basic kind, though, called Vipassana, or Mindfulness meditation. In this, you just sit very still for however long you decide to do it, and you just watch your breath come in and go out, focusing on the breath. When other thoughts come into your mind, you just bring your attention back to the breath, over and over.

Whether or not this would help with pain is unknown; you would have to try it to see. You can go online to find out a lot more about Vipassana or Mindfulness meditation; there's a lot of info out there.

I would like very much to hear from you how it is going and if you start meditating regularly what effect that has on your symptoms.

 

[Auriel]

Edit I’m so so sorry for your losses and illnesses the fact your still here shows an incredible level of resilience health issues +bereavement is a hell of a thing for anyone to go though I’ve lost many family members and am at risk of certain cancers (which has always been my fear).you have people and animals in your life that depend on and love you(and the other way around) I find the forum to be more than just a connect of fibromyalgia, but a kind and supportive network too also wasn’t going to mention but both my suicide attempts only landed me in hospital leaving me very ill for a while after(I’d never do it again)not worth it .you will be ok .life brings adaption, heartbreak too and happiness but more so adaption .ive also been considering meditation not for the pain but for the horrid pins and needles nerve sensations.anyone love to you and your english is incredible by the way

 

[Jemima]

What I want you to ask, how can I learn meditation, and is it true, meditation is helping make the pain much less not that intense?

Hi Edit,

I can try to explain the way that meditation can help as my therapist explained it to me - massive disclaimer: I'm not an expert, but I'll try to do it justice! With fibromyalgia, we are all very vulnerable to stress. Stress can trigger a flare of pain and our other symptoms, and as we experience that flare we can then fall into a new stress response - creating a really unpleasant feedback loop that keeps self-perpetuating.

When we're in a stressed state, a system within our body called the sympathetic nervous system kicks in - this is the so-called fight/fight/freeze state. Our body diverts resources away from digestion, healing, and regulation, towards survival, and our brains flood with adrenaline, noradrenaline, and the stress hormone cortisol.

The opposing system within our bodies is called the parasympathetic nervous system - this is known as the rest/digest system. When our parasympathetic nervous system is activated, cortisol drops and our body goes back to getting on with all the things that it can do to make us well and healthy. Acetylcholine releases to slow our heart rate, and endorphins inhibit the activity of the sympathetic nervous system.

Interestingly, the parasympathetic system utilises norepinephrine, which is associated with pain signalling. The "N" in the SNRI medications that are prescribed for fibro is for norepinephrine - those meds inhibit the reuptake of norepinephrine in the brain. I don't think these mechanisms are fully understood, and I'm sure my understanding is really crude!

Practices such as meditation and breath work are resources that we can use to signal our body that it can switch from the sympathetic to the parasympathetic nervous system. By pro-actively slowing down, we can alter our brain chemistry, and interrupt the negative loop that is likely feeding our symptom flares. I believe that's the gist of it, at least - any docs on this forum can feel free to correct me if I've got anything wonky!

If you want to try meditation, I feel the best thing is to experiment with different approaches until you find something that feels right for you. Sunkacola mentioned Vipassana meditation. For me - someone whose brain just will not shut up! - I found the best thing was to create my own kind of transcendental meditation. In this case, the idea is to pick a word or a sound that suits you and repeat it in your mind over and over again with slow breathing. Focusing on a word helped me stop my brain going off on tangents. There are lots of other approaches and meditation apps to try, too.

You can also explore exercises to release your muscles. My therapist got me to do body scans where I connected with and then consciously relaxed each muscle one at a time, from my feet all the way up to my head - this works best for me lying down. He also helped me out with the idea that even if I noticed a body part was hurting as I went, I had to remember that fibro pain isn't a threat - even if I could feel it, I didn't need to panic.

Good luck - I'd also love to hear how you get on

 

[Auriel]

I’ve been put on a waiting list again for trauma therapy they taught us last time about the parasympathetic and limbic system. Next ones gonna be more intensive cos my nervous system doesn’t calm down tidy sometimes I feel like mouse being chased by 3 cats it’s just daft

 

[Hopeful7]

Aw, thankyou, it wasn’t so long ago I messaged a forum member telling them my first experience of going to hospital with fibro pain (I thought I had bone cancer!)he told me it was in my head too.you ever thought about writing a book about it all ? I’d consider it,anyway take care.x x x

I’ve been asked this by a few people, but for me, reliving the past in it’s entirety would be too painful at this time. It‘s been rough, recently lost my Dad and my Mum is ill. I wish I could though, because I think it helps people to know they are not alone and that all these weird symptoms are real…..we’re not crazy!

 

[Auriel]

Am so sorry what your going through hopeful7 I hope you and your mam will be ok and 100% we’re not crazy, millions of people all over the world can’t be wrong ,take care hopeful7 love and cwtches from South Wales

 

[LUPIN]

Hi Tiffanymarie,
Diagnosis is always a shock to the system , but let it sink in , you are still "you " , there is no easy answer to how best to cope with it, everyone deals with it differently, if this helps , try to pace yourself, give yourself tasks to do , congratulate yourself on achieving the task, some days you will , other days you wont , so what if you cant , there will be days when you have no motivation , everyone has those days , but there will be days when you have that energy to do something positive.
I know from experience how this feels , its hard , but you will adapt to how your life has changed , try to accept it as best you can and dont blame yourself , for how you feel and what you can and cannot do now.
I hope this helps you a little .
Take care

 

[sunkacola]

Hi Tiffanymarie,
Diagnosis is always a shock to the system , but let it sink in , you are still "you " , there is no easy answer to how best to cope with it, everyone deals with it differently, if this helps , try to pace yourself, give yourself tasks to do , congratulate yourself on achieving the task, some days you will , other days you wont , so what if you cant , there will be days when you have no motivation , everyone has those days , but there will be days when you have that energy to do something positive.
I know from experience how this feels , its hard , but you will adapt to how your life has changed , try to accept it as best you can and dont blame yourself , for how you feel and what you can and cannot do now.
I hope this helps you a little .
Take care

Please note that TiffanyMarie has not been back to the forum since the first post. So any replies to her are not going to be received.

 

[sunkacola]

I would like to suggest that we abandon this thread and start a new one to discuss the things we have been talking about here. People continue to respond to the OP, who has never come back here.

If you have further comments.....which would be welcomed...please start a new thread for that. thank you.

 

[Edit]

Hi Jemima!

thanks for your replay it was very helpful, I will try to find out which method is the best for me. I am like you my brain never "empty" maybe that is why is little bit hard to find a best way but I will try because anything is helping make me feel better and my symptoms are more bearable my whole day is better. I am very new here, can you explain to me what is mean + quota and replay with quota? I know maybe sound very dumm but I could not figured out what they are mean? Thanks and take care Edit

 

[Edit]

Hi Sunkacola!
Thanks for your kind word , I see your life was not just walking in the park;-( .I am very sorry to your loss, when we losing a loved one you right, our life is going on but we need to adjust somehow this new type of life. Sometimes practically when my general well being relatively fine I can find a joy in my life. I have a good husband and my beloved animals give me so much love and joy they are my sunshine. I am lucky because my HB is the same like me. that is why we have so many animals most of them rescued because he had amazing heart (and stable mind , because he can deal with me in the last 44 years marriage) and after when I was diagnosed with fibro he searched a lot on the net and everywhere , he want to not just understand my illness, but he want help me too. After I read your respond I decide I will take your advice and if my relatives try to took me in their fight I will not let them do it. Stress is the biggest enemy for fibro I HAVE TO close out every stress situation I can. I will searching the meditation technic you told me and try to do it different technic I hope I will find one is working for me.
What I find the massage therapee is excellent for me. I saw a Thai lady for one hour massage and I did not feel that good a very long time. next day my body was a little bit sore but a 2 nd day I felt amazing. We decided with my friend we will see her regularly from now one. Thanks again I will posting what happening with me in the future. I will see my psychiatrist dr next week she is very good, I did not see her a long time.

 

[Edit]

Edit I’m so so sorry for your losses and illnesses the fact your still here shows an incredible level of resilience health issues +bereavement is a hell of a thing for anyone to go though I’ve lost many family members and am at risk of certain cancers (which has always been my fear).you have people and animals in your life that depend on and love you(and the other way around) I find the forum to be more than just a connect of fibromyalgia, but a kind and supportive network too also wasn’t going to mention but both my suicide attempts only landed me in hospital leaving me very ill for a while after(I’d never do it again)not worth it .you will be ok .life brings adaption, heartbreak too and happiness but more so adaption .ive also been considering meditation not for the pain but for the horrid pins and needles nerve sensations.anyone love to you and your english is incredible by the way

Hi Auriel!
Thanks your kindness, yes I am feel this forum not only talking about our illness it is more, somehow we have connection with each other because here a lot of people has and had lot off painful experience in their life and that is the reason we can be sympathetic with each other problems.
After when I came back from the hospital I decided never ever try again, I saw how my HB was sad , my cats and my old dog was so frightened , if the can talk they ask me "mum promise you never let us alone again". I am lucky because I have a good HB and friends who love me and lot of people fighting alone in the life. I hope you find a solution for your nerve sensation , it is horrible. I have diabetes type 2 and my nerve problem sometimes is very uncomfortable practically at night with RLS. BTY my first 5 years was the hardest in the new country and no English knowledge. Because I did not worked I read a lot and watch TV with English subtitle, but I always was nerves what if the people don't understand me. Because I learned English most from book and audio(it was 34 years ago) I could read and wright before I could talk. My neighbor was an English lady with a very strong Yorkshire accent, I hardly understand her , but with her husband was much easier to talk. I love to read and because of that I put a lot of effort to learn English, I want to be a part of my new country, I want to read a lot of lovely English book, and that gave me strength to learn even it was not easy. Now I am Ok, but I have my accent, but people said don't bother because this is a part of my personality. love xxx take care

 

[Auriel]

Hi edit yes I agree this is why I like the forum because we talk about lots of other things (but obviously fibro) it’s nice to know about people and yes there’s a lot of traumatic experiences suffered from the forum members through the fibro the cause and effect and consequences of the fibro and general life experiences.im calming down my caffeine and sugar cos they are a definite trigger.also if you like reading English books and it makes you happy keep it up .anyway take care for now x x x

 

[Edit]

Thanks for your responding, I feel at last I find lot of nice people here with our same problem. I always get angry when people don't know anything about fibro or depression and said , "Oh this is only in your head, or pull yourself together..etc." because they judging people's life and health issues without the proper knowledge. I only have one coffee a day not very strong with sweeteners (hermestas) , if I have tea I just put a little milk in it. sometimes I feel tea is better for me then coffee. take care, have a lovely day xxx

 

[Auriel]

Same tea is my thing now .i do like coffee but the effects after isn’t worth it I bought decaf see if it will make a difference I drink green tea too I like the calming effect . ooh depression is horrendous I cope with it better now yes the forums a good little bunch ok hope you have a good day too