Newbie feeling guilty!

[Tiswot]

Hi, having just joined the forum I thought I'd see if anyone else feels guilty that they can't do as much for their family as they feel they should? I was diagnosed with fibromyalgia in 2003 after a car accident, I am on Amitriptyline and BuTrans 35mcg for the pain which helps a lot. But the thing I struggle with most is sleep. Either I cannot sleep, or I cannot wake up. This weekend has been a serious struggle to stay awake, consequently I've managed only two to three hours out of bed. I feel so sad/bad hearing everyone in the house getting on with life - I want to too, but I just can't. I am also taking anti-depressants to help me feel better, but this weekend nothing seems to have worked...

[BlueMermaid3]

Hi Tiswot

Welcome to the forum I have had Fibromyalgia, ME, Hypermobility and other chronic conditions for over 30 years.

It is certainly not an illness that is easy to deal with.

Have a look at our mother site. You will find a wealth of information on there fmauk.org

As far as your question goes, yes! I feel incredibly guilty about the things I am unable to do, although I think "Guilt" is built into those of us who are mothers, the minute our children are born!

The main cause (not symptom) of Fibromyalgia is lack of Restorative Sleep. People who do not have Fibro go to bed at night, sleep all through the night and awake refreshed the next day.

With Fibro sufferers we wake up constantly throughout the night and have huge trouble either getting off to sleep or staying asleep. To reach REM Stage 4 Restorative Sleep you need to sleep solidly for four hours. You then need to stay asleep for a further 2 hours without waking up.

During this time all the cells in the body are renewed and the general healing process takes place. This is exactly what we are lacking and why we have Fibromyalgia.

I hope this makes sense! My Rheumatologist explained it to me in detail, but I don't have the scientific parts as I have forgotten them!

At the end of the day we can only do what we can do. We know that if we overdo things we will pay for it.

You may be interested in Googling the Spoon Theory. This can work well for some people.

Many of us, when we have a "good" day over do everything because we do not know when the next good day is going to be.

Apologies for waffling! If you need any help navigating the forum, please let me know and I will be more than happy to assist you.

Wishing you less pain and more peace

Lu x

Administrator

[bluebell99]

Hello Tiswot and welcome to our lovely community where you can find information, advice and support and of course the odd giggle.

For further information and help see our mother site fmauk.org

There is no right or wrong with Fibro, we are all different and what works for one person may not for another. Many of us frequently feel guilty we are not pulling our weight, others soldier on and feel the worsening effects the next day.

I would advise you see your GP and get your medication looked at again. It could be that you need to take the amitriptyline earlier in the evening to stop you feeling so groggy the next day. I have no answer for the times when sleep is elusive, you only have to come on this site to see the numbers of people posting late at night or in the early hours. Unfortunately sleeplessness is a bugbear for we fibromites.

Wishing you a better tomorrow.

[angiesmith50]

Hiya welcome to our family. You will find lots of help and support here. I know the feeling of guilt at being so inactive but there really is nothing we can do. We just don't have the energy and we are not the people we once we're. I'm currently going through the 'can't stop sleeping' phase again. I have been in bed since Friday. I feel really guilty and I live alone so not really letting anyone down. However my cleaner will come tomorrow and items that were delivered Thursday still lie unopened in the hall as they were on Friday when she came but I just don't have the energy or the interest to move them. So many lost days!!!! But what can we do???? We're not in charge anymore. Take care

[Janet28]

Hi Tiswot welcome to the forum, I'm sure you will love it as we all do.

I'm sorry you are feeling so bad at the moment & i completely understand where you are coming from, I remember feeling the same way many yrs ago. As BlueMermaid3 has said, "mother's naturally feel this way."

It is very difficult when you have a family & they are all getting on with their lives and it feels lonely sometimes, I remember feeling lonely.

Oh if only I had this forum back then, all those yrs ago. I'm sure you will find a lot of friends & people to listen & understand what you are going through because of their own experiences and i hope you feel better very soon.

I look forward to chatting with you.

Peace, luv n light

Jan x

[Tiswot]

Thank you all so much for replying, the bit about Mothers guilt definitely rings bells. Both my children are disabled so when I cannot get up my partner is having to deal with them and their carers - I feel so bad about it. I shall try to educate myself more, thank you again x

[TheAuthor]

Hi Tiswot

I sincerely hope that you are feeling as well as you possibly can be today? Welcoem to the forum and it is wonderful to make your acquaintance. I do not personally feel guilty about not being able to do things but I often wonder what others think of me now? Mind you, there is little that I can do about what they think? I do believe that if folk genuinely love and care about you then they should understand?

I want to sincerely wish you all the best of luck, and please take care of yourself.

All my hopes and dreams for you

Ken

[Hidden]

Hey Tiswat sorry to read you are feeling low at moment - but I've got spondylosis since 34 years of age along with Fibro just recently diagnosed and I also get frustrated when I can't do what I want and used to do but having had the spondylosis for so long I have learned that you really have to go with the flow - when you feel fine do what you can do without overdoing it as this will make you feel worse - when it's aggravating you take it easy I am sure your family will understand and help you at these times - it is hard for folks to understand how you are feeling talk to them - these conditions we have are not visible like a broken arm/leg that's in plaster but keep your chin up - don't let it be your master think positive - take Care out there 😘😘😘

[angiesmith50 in reply to Hidden]

Hiya I like your comments on spondylosis. I've had it for 25 years and yes we were already trained to limit ourselves and listen to our bodies before we had fibro. I thought that was my lot having 1 chronic illness was quite enough but no........ take care x

[Fra22-57]

It may sound blunt but no I don't feel guilty.I think my family should feel guilty not doing anything for me.I used to do all n look after grandkids but now can't as you know it's so hard.

Now they hardly even visit but when I get upset they just say they will do more and they don't

[Linjack]

Sorry you are unable to sleep.I find the amitriptyline helps me.

What dosage are you on?I take 3x10 mg.Maybe you need a higher dose.