Getting life balance

[NickyBriggs]

Any tips for how to handle pain and restlessness? I was only diagnosed last week and referred back to my GP I’m really struggling with fatigue and the summer holidays! Trying to keep active during the day with my 5 year old and then finding myself lifeless in the evenings. My hubbie just doesn’t get it all. Had any got any tips for balance and natural remedies for the exhaustion thank you

[dinkic]

I have had it for ove 10 years, had it longer only have had it confirmed 8 years ago. First you need your husband to read about the condition. It has a massive effect on the life of the sufferer and those around them, getting them to acknowledge the problem is one of the first things that will help you. Pacing is the most important thing have quiet time during the day it will do your 5 year old good as well childen should have time to rest/relax.

As for the tiredness I think many parents of 5 year olds would have tiredness without your illness, but he needs to support you when he is at home. Has he ever looked after your child on his own for a day, might be an idea for him to do so to find out how much it takes out of you. I am lucky my husband was my greatest support. But I did have those who thought it was laziness.

CDo everything the specialists tell you to do, they are really worth their weight in gold, even they have had to fight to have the condition recognised. Also might be a good idea to get a blood test to check you have no iron or other deficiencies I also have a lack of B12. If so get these sorted. Hope you keep in touch with the community if you have specific concerns I for one would be willing to give advice although this is all those experience.

Take care and be kind to yourself

[NickyBriggs in reply to dinkic]

Thank you for your kind words. My hubbie is very good with our son just think he struggles to understand. Would you know if a good description of Fibro I could share with him? I only ask as the NHS one is a bit fluffy lol

[phlebo123 in reply to NickyBriggs]

Hello Nicky, if you are looking for more information may I suggest that you look on the mother website for this forum fmauk.org and look under the section called "information", there you will find an information booklet, the section called what is fibromyalgia?, May be useful to show your husband. Also, you can try looking at the Spoon Theory, which you can Google. It is really useful for explaining to others about how we need to be careful not to overdo things and "pace" our bodies.

Welcome and if you have any more questions, there is usually someone who can help xxx

[dinkic in reply to NickyBriggs]

I described it on the forum previously and a few people liked the way I described it so here goes: -

CPS is chronic Pain Syndrome had it for years, simple explanations is that the brain send false pain signals but pain is pain and you have no way of knowing which are which.

I am,on meds etc and generally cope. My probems are usually at night when I am tired and trying to sleep but I have had it for years and have tried numerous coping strategies.

However also suffer from depression (and other things) and had a meltdown today which started the pain in a big way. Managed to calm myself down and that helped. I suffer foggy brain as result of the meds and lost my engagement ring and wedding ring - luckily my husband had gone a rare day out so was not around and I found them after a couple of hours)

I have tried gentle yoga which helped, doing things that distract also help I find reading and crafting are good for me, but watching a good film can do it. Also tried mediation (could not do it) mindfulness is the new CBT method and can work if practiced. Prehaps doing something like painting of making things with your child might be a good way of having some quiet time and distracting if you and they would enjoy it.

Are you with a pain specialist, if not get referred.

Take care and hope the weeknd is good for you.

[aud01]

Hi, and hope you're feeling a bit less today tired ... I have suffered a while too and I'm still getting my kids to understand ....

you have to give in to your Body when you can.. my doctor told me never to sleep during the day as it will stop me sleeping at night but when my fatigue was bad I slept 18-20 hours a day ..

I was lucky my kids were older . They still didn't understand now . More so since my stroke last week they now like ok you have to start getting yourself back together and moving on.. they just don't get it. I don't think anyone ever will until they go through it die themselves.

Get your doctor to test your blood cos a lot of us suffer with low iron and low vitamin B12 and vitamin D .. they can make all the difference honestly . I'm on vitamin D for daily now and will always be I think .

Good luck xx

[NickyBriggs in reply to aud01]

Gosh I’m sorry to hear about your recent stroke and hope you are taking care of yourself. I think my problem is I’ve always done everything for my family so now it’s difficult to step down. I’m such a

Fuss pit about how

I keep my home

Too so still wizzing around doing things and then feeling like I could sleep standing up lol. GP gave me tablets to sedate me at night but by 3 I’m dead on my feet again.

I guess it’s a massive learning curve for all of us x

[aud01 in reply to NickyBriggs]

Maybe your tablets that sedate you at night so that you can manage better during the day.

Just a thought. I'm on amytriptaline at night and I don't go to sleep til need to but i have myself in a routine that I take my tablets at 5 and go to bed at 10-1030 and when I wake up in the morning I am wide . But I do have my days that I will sleep constantly .... I have tried to stay awake when I have this and I can't so now I listen to my body .. good luck Hun xxx

[WorldOHurt in reply to aud01]

I do a lot of daytime sleeping also and have slept almost around the clock many times. Sometimes I think I don't want to wake up as I know it hurts so bad and I can't do anything once I'm awake anyway.

[dinkic in reply to WorldOHurt]

Been there so understand I am told that you should do the things that you enjoy. I started slowly but found having something I enjoy to wake up to helped. We all have to do it in our own time. If your body wants sleep you should not feel guilty about doing so.

Hope you are feeling better soon, I still have days that are a nightmare and sometimes go on for weeks. Had a meltdown today but hope tomorrow will be better.

Look after yourself and be kind to yourself (we often care so much for others we do not do so for ourselves its taken me over 50 years to realise this).