Not Understood

[Shaz1972]

I've had a relapse of my fibro the last few days with the fact I've done nothing but sleep the clock round! My fibro has actually been behaving since I got started on Pregablin last year with the odd relapse here and there, previously it was constant. I think my other half has got so used to me being up and about more that when I do have these relapses he tends to (what i feel anyway) get a bit annoyed when I do, it's means he has to take our son to school etc, infact I had to give off to him this morning for what i believe he was taking out on our son what he should be saying to me! It then makes me feel guilty for lying down but I'm completely exhausted but I know I'll end up getting up and getting ready and pick my son up from school later just to save the atmosphere later, anyone else experience something similar?

[suzey26j]

not sure if it similar ,but my hubby works away from home all week most week ends he is home ,i get. upset. somtimes for him saying to me iv save all my pains for the week end , just saying im putting in on because he's home oh my god i wish i was ,not a lot you can say to that but it really upsets me . Suzey X

[mand65]

Hi Shaz1972 sorry ur not doing well at the moment , it must be hard when you have younger children as they still need you no matter how you feel , but it a lesson everyone has to learn sometimes people are not able to give what you want, trouble is we get so good at hidding our pain until we cant do it anymore. My hubby gets frustrated with me , but nothing like as mad as i get with myself , try and take it easy and rest while hes at school, hope your back on your feet soon .x

[carol789]

Hi Shaz52

Yes I have similar at home, my children are always asking when am I going back to work? My eldest thinks everything is mind over matter - because of this, I have started attending the charity MIND and seeing a counsellor. I have a good day and go overboard (which is still not anywhere near what I was capable of doing), then suffer for it for the next few days, where I cannot move without pain and and so fatigued even hard to lift head of pillow. If I could do anything about it I would. It is very scary and uncontroleable and people just dont understand - in fact how can they when I don't understand it either.

People say you will get better when the sun is out and the weather is warmer, I don't think it works like that to be honest.

Every day seems to present a different feeling and pain. I have developed a tremor in my hands, which has become less noticeable, unless I am holding a pen or cutlery. I dont like that bit, its a new experience for me and I hope it goes soon.

I have now got anxiety and depression, everything seems to make me anxious and everything seems beyond my control. i think this is down to people around me not understanding this crazy syndrome.

My bosses keep saying other people in our work have Fibro and they seem to manage - they cant understand how I cant. Thankfully they referred me to Occupational Health to see if I was fit for work - occupational health said I was not.

Luckily I have a doctor who understands about Fibro. When I told him what my bosses - including HR department had said to me on their visit - he had a good chat with me and told me straight that it is not in my head - I have an illness and we just have to find correct meds and such to help me. He then signed me off for 2 months.

Sorry rambling.

I know its hard, but try not to let their comments get to you. perhaps, you need to look after you more, a nice relaxing bath and listen to relaxing music - easy for me to say, my children are old enough to look after themselves. Isn't it funny how we can give advice to others in our situation, but not take our own comments on board.

I wish you well and hopefully you will have better days soon. Its a good job this forum is here, so that we can at least chat to like minded people to get information and a supportive website hug.

I have taken to leaving info on fibro symptoms lying around the house and even, make sure every now and then when husband moans that he only touched me lightly so it could not possibly hurt that I ask him to re read the symptoms on fibrouk web site! this works for a while, then as usual he forgets.

Very best wishes, hope you have a more energy pain free day - but dont over do things as we all tend to, as it will come back to bite us in the B-m.

Carol x

[TheAuthor]

Hi Shaz1972

I am so genuinely sorry to read that you are suffering and struggling and I sincerely hope that your pain eases soon for you. I want to sincerely wish you all the best of luck and please take care of yourself my friend.

All my hopes and dreams for you

Ken