Pain and Fatigue

[mcglada0]

I hope that you don’t mind me posting again as I have posted about pain and fatigue before. I’ve had a few reasonable days and have now come crashing down again. Life has come to a 🛑 . Unable to do anything and feel utterly miserable. The pain is bad enough but the ill feeling- nausea, tired and generally yuck is so debilitating. I know that so many of you guys have similar symptoms. I was just wondering if anyone has good pointers to help avoid these awful crashes. I’m definitely more ill than well all the time. I really apologise for this moan when I know there are so many people suffering bravely.

[Hazel_Angelstar Administrator FMA UK Staff]

Hi.

For me pacing is the key to managing my energy levels. I need to ensure that I plan and prepare on a continual basis to make sure that I get enough rest in between activity.

Larger tasks can be broken down into smaller chunks of time with rest periods. If I'm doing something that will take more effort I try to arrange it so I can rest before and afterwards.

For pain, I use a combination of meds and pain management techniques.

I crashed and burned for several years until I realised that as long as I continued doing things in same way I'd never recover. So had to look at my lifestyle and make changes to help myself xxx

[mcglada0 in reply to Hazel_Angelstar]

Thank you so much for your helpful text. I know that I crash and burn all the time and I think this is my problem. I’ve had to pull back and rest much more as my body just won’t let me do normal things any more. I would love to hear about your lifestyle changes if you have time to message me. When you crash - do you feel really ill? I still find it difficult to understand this illness and how it can have such physical effects and yet blood tests show us as being healthy! I am glad to hear that you are managing the fibro well and hope that you have a good day. Xx

[Hazel_Angelstar Administrator FMA UK Staff in reply to mcglada0]

Hi I'm getting ready to go out shortly but will pm you later today xxx

[mcglada0 in reply to Hazel_Angelstar]

Thanks xx

[ninjananna]

Ahhhhh my friend!😟 Sorry to hear you'e not good. Do you still work? Or have a young family? These are massive hurdles for a fibro sufferer!🙁😕 Do you know about "SPOONS and "PACING" All I can say is "Be kind to yourself" this demon is bad enough without beating ourselves up!! Writing it down helps!! Get it out there!! We'e all with you!😁😁 Much love coming your way.......Ninja!..😍😍😍😍😍

[mcglada0 in reply to ninjananna]

Hi and thanks so much for your kind text. I am lucky that I retired last year. I have grandkids and have quite a lot of responsibility with them which is hard when I feel like this. My daughter has had to arrange for a friend to pick her boy up from school. I just hate when I let them down. In fact I just hate the person that I have become. Someone who is continually unwell and weak! I am just feeling sorry for myself today and will bounce back but as we all know - it is hard! I do know about pacing but still haven’t got it right. I really appreciate your support . Everyone in this group are so friendly and supportive . Just what we need to get us through the dark days . Take care and I hope that you have a good day . Xx

[ninjananna in reply to mcglada0]

I too used to look after my Grandchildren! One of the saddest days of my life when I had to stop "Working" for my Son and his Wife!😢 The problem with our generation is.....we are workers!! We Were wonder woman!We kept everything together! I still get very sad at the time I had to let *ME* go! And adapt to a new lifestyle!😟 We all feel your pain and emotion, but you will feel better and you will get through! Don't try o beat it though!!!.....it will come back twice as fierce!👹👹 Be honest and selfish with your time and let people in!!.....Ninja.....😍😍❤❤

[mcglada0 in reply to ninjananna]

Thank you Ninja. I can relate so much to what you are saying. I still have to recognise that I can’t support all my kids and be there for them in a physical way. I have been really trying to accept the new me but as you know it’s so difficult. I just hate letting people down and yet as you know, the crash comes and it’s a big let down. I really appreciate your kind response and support. Xx

[redmaple-5]

Hi mcglada0, Have you overdone things or felt stressed over the last few days? Fibro has triggers and boundaries. Listen to your body and accept and know your limitations. Hope you feel better soon. X

[mcglada0 in reply to redmaple-5]

Thank you. Xx

[redmaple-5 in reply to mcglada0]

I read this poem the other day, and it helped me, it's called : Love after love by Derek Walcott. Sometimes we forget to be kind and love ourselves. X

[mcglada0 in reply to redmaple-5]

I will read it. It is difficult to be kind to ourselves with an illness that most doctors haven’t a clue what it’s all about. However, this group of lovely people help so much. Thank you for taking time with me. Hope you are good today. Xx

[mcglada0]

Thank you for post . I think I so let things get to me and I’ll have to try to take your advice . Xx

[redmaple-5 in reply to mcglada0]

Have you tried mindfulness, meditation? I find it helps me to relax and clear my head. 🤗

[mcglada0 in reply to redmaple-5]

I’m attending Pain Management at moment and have been trying some of this. I’m finding that they are concentrating on movement / pain whereas my problem is more fatigue/ pain. Whatever I do seems to cause this horrible sick fatigue! However, I’m willing to try all suggestions so I’ll go back to the meditation tapes thanks. Thanks for your help. Xx

[Mandypandy1969]

I am the same and sympathise. everything you have said apart from nausea happens to me and yes, hardly any good days. so miserable and it is debilitating as you feel 20 years older than you are. people say pace yourself on a good day but easier said than done as you like to do things you should be able to do everyday and can't. xx

[mcglada0 in reply to Mandypandy1969]

Totally agree. Today I feel so nauseous and tired. And the pain keeps gnawing away! I’m sorry that you are going through this as well. It is so debilitating. All we want is to lead a relatively pain free existence with some energy to go with it. Sending you good wishes for better days ahead. Xx

[Mandypandy1969 in reply to mcglada0]

you too. xx