WHAT'S THE POINT .....

.... Of having a useless body and mind? Every time my daughter wants to go do something I'm too tired, in too much pain. Why is life so hard and difficult? All I've ever done is try to be a good person. I keep crying, I'm more depressed than ever. Can't sleep, being sick. Just had enough :((( Don't want to be here anymore. Pointless seeing my GP. I'm already on enough meds to knock out an elephant

[ladymoth]

Hi Coz,

I'm sorry you're feeling so low at the moment. Reading between the lines, it looks to me as though your medication may be the problem - maybe you are taking too much of the wrong stuff!

Good pain relief is absolutely central to dealing with fibro, or you will have no quality of life. It's important to have the right medication, and to adjust your lifestyle to suit your condition.

You say that it is useless to visit your GP - well, if he's really uncooperative then maybe you should change doctors, but on the whole, if you write a list of your problems, and what you would like as an outcome, most GPs will be happy to do what they can to help. You don't say if you've been referred to a rheumatologist - if not, maybe you should insist on a consultation.

Life isn't fair, it never has been, and being a good person doesn't make you immune to getting a tough deal. You can be treated, however,so please don't give up hope. Take charge and insist on your doctor exploring some more avenues for your treatment.

You seem to be quite depressed, which is fairly common when suffering a chronic pain disorder. We have all been there, I'm afraid, but most of us come out the other side, and find that life is a bit different, but still very good.

There are plenty of options available to make you feel better, though it may take a while to find the right one for you. Until such time as you manage to find yourself in a happier place, don't be afraid to call Samaritans. They are trained to listen to people in deep distress, and to help them through their crisis.

samaritans.org/

UK: 08457 90 90 90

ROI: 1850 60 90 90

I hope that you will soon feel much better and that we shall hear good news from you!

Love, Moffy x

[Hidden in reply to ladymoth]

Thanks for your message Moffy. Everything you've said makes perfect sense. A doctor, about 20 years ago said he thought I might have something called Fibromyalgia. He was a locum doctor. When I asked my regular doctor ~ he laughed at me and said no, I most certainly didn't have it. Fast forward 20 years and two house moves out of my County later and my GP referred me to a Rheumatologist due to my horrendous back pain. He did the pressure point test etc (didn't know what it was at the time, but I got 18/18). He diagnosed me with Fibro in June. My wonderful GP has just left and been replaced by a man who just wants to get me off ALL of my meds FAST but doesn't want to replace them with anything else. I've tried talking to him but I'm not getting anywhere. I know I have to find another surgery.

My new GP sent me to the wrong pain clinic. I queried it with him when it said Back Pain Clinic on my appointment letter. He said "back pain, pain management, same thing". I assumed he knew what he was talking about. Two buses and quite a walk and wait later. I was called in by the Consultant and he said, I think you may be in the wrong place. I said, I thought I was in the wrong place too. I now have to be re-referred. So, another 6-8 week wait. The Consultant was lovely though and started me on morphine patches. I started them last Friday. I'm feeling and being sick but even those aren't killing the pain

You're right ~ life isn't fair.

Thanks for your good advice

Coz x

[Hidden in reply to Hidden]

i agree you sound so depressed. i have had similar childhood abuse and because of that i believed everything is my fault. no matter what happes its my fault. when my father worked late shift he would put the key in the lock and my tummy would turn over. its no wonder i have this illness. its because of extreme stress. i do so try to like myself. so when i have a negative thought i try and put a positive one in its place. i have found it does work to a point. i have been on the patches. yes they made me sick but after some time they settled down. went back to the dr he increased dose and now for the first time in years i am virtually pain free. i do however have a reaction to the patches. i know its not the adhesive because the reaction is mainly on the medicated part and not around the edges. after i take off i thoroughly cleanse the area gently and put on cream 1% cortisone and take antihistamines. hoping this works. still waiting for permanent relief. x

[Hidden in reply to Hidden]

Hi there

I was so so sad for you when I read your message.

Especially where you wrote about your father coming home.

I guess the whole blaming ourselves for everything is understandable. I like the thought of putting a positive in. I will try it.

Do you mind telling me what mcg you are on now of the patches? I appreciate we all need different dosages but its good to know what kind of dose I would need to be looking at. I'm in so much pain right now I could cry. Because of a mess up that my GP surgery made I now have to wait until NOVEMBER for my Pain Clinic appointment

Thanks again for writing to me. It can't have been easy for you to write about your personal life to me.

I'm very glad to hear you have some relief from your pain at last.

That's a good positive

Take care

Gentle hugs

Coz x

[hamble99b]

oh coz, I am so sorry you are feeling this way.

are you on any anti-depressants?

pain can worsen depression without all the other things that go with fibro.

you might need a change of pain med's - getting the right balance can take some time.

what is important to your daughter is that you are around, you are in her life.

there might be small disappointments over things you haven't been able to do - and they can be huge at the time, but when you both look back on it in years to come, it's the time you shared and not the amount of things you did.

when I grew up we spent most of the summer at home and had to help in the house, but, I was happy and remember it with fondness.

you will have good days and share many happy times together.

regards,

sandra.

[Hidden in reply to hamble99b]

Hi Sandra

Thanks for your lovely message.

Yes, I've been on anti depressants for over 25 years now.

I had a dreadful childhood, being mentally & physically abused, so have wanted to give my children the best childhood I could.

Their dad died (my partner & husband of 28 years) 3 years ago when they were 9 & 13.

That was coming up for 3 years ago.

My son is a very angry young man and my daughter is my carer on days I really can't cope. She never feels sorry for herself.

That's why I hate disappointing her so much.

Thanks again for your kind message.

Best wishes

Coz

[Ginsing]

Morning Coz, I hope you feel a nit better this morning. Do get an appointment and go talk to your doctor. perhaps a different medicine will help calm your teares and your fears. It is really all about finding a mix that will help you As you can see we are all here for you so dont hesitate to chat with one of us that can be helpful and cheering!

Let us know how you are today and what you have decided to do please xgins

[Hidden in reply to Ginsing]

Hi gins

I guess I have to sum up the energy to find another doctors practice.

As Moffy said, I'm probably taking too much of the wrong stuff.

Thanks for your message.

Coz

[mimiwen]

Dear Coz, you say it is coming up for 3 years since your husband died and it is such a difficult time when the anniversary of a bereavement is coming up. 3 years isn't very long at all, so I think you must be really low and vulnerable at the moment.

Sadly, it all makes the pain and exhaustion worse. I think you need to try to be very kind and gentle to yourself and get all the help you can. I'm sure your daughter understands your health problems, and I bet she appreciates all you've tried to do for her to give her a happy childhood.

I send you loving thoughts, Mim

[Hidden in reply to mimiwen]

Thank you so much Mim. Your loving thoughts are seriously appreciated. I'm not in a great place right now. In my head and how we are living. I lost everything when my children's father died. I worked for 34 years until I caught Pneumonia the Christmas before last and was in hospital Christmas Day. Then I had a severe kidney infection and ended up having to resign from my job. I'm now living in a tiny 2 bedroom flat with a kitchenette and sharing a bed with my daughter. We are surrounded by boxes. My poor son can't even walk around the side of his bed due to our cramped condition. Just when you think things can't get worse something else happens.

I desperately want to go back to work, but until I can get my pain under control I just can't manage it.

My panic attacks have started up again as my GP is desperate to get me off Diazepam.

With all of that, the anniversary ~ which feels like yesterday, plus the constant pain, I'm awaiting my Tribunal date with absolute dread. How are you supposed to prove that when you get up in the mornings you can't even stand upright for at least 10-15 minutes?

I have to take 3 breaks between drying my extremely short hair because my hands ache so much.

I'm 52 and feel 152!

I can't remember the last day I had a good day.

Thanks for taking the time out to read this. I'm just feeling v sorry for myself.

Thanks again for your kind message.

Gentle hugs to you

Coz x

[mimiwen]

I'm so very sorry you've had such a terrible time, Coz, I'm not surprised you're feeling so bad! It is an awful lot to have to cope with. I do hope things get easier for you. Try to concentrate on one thing at a time that might help - like changing your GP and finding a better one. I don't think it's the right time for him to be making you come off your meds, that can't be helpful, it's just another stress for you. I wish I could suggest something really helpful - I wish that for all of us!!

Thinking of you.

Mim x

[Hidden in reply to mimiwen]

Thank you Mim. You're so kind.

I did tell my GP that now was not a good time to come off some of my meds. His answer was "we don't prescribe that here". Helpful huh?!

Telling my 9 year old daughter that her daddy was going to die, was probably the hardest or worst thing.

He was diagnosed with cancer in the July and was dead by the end of August ~ so our children had 2 weeks to get used to the fact that their dad was going to die.

Sometimes I think that if I wasn't here anymore, my children would "get it over and done with" as it were whilst they are young.

Then by the time they're older they would have had time to come to terms with it all.

Don't worry ~ I'm not going to jump over a cliff!

I truly feel for everyone on here. We are all struggling in one way or another.

Thank you. It was good to talk to you.

Thinking of you too

Love

Coz x

[lynnie2010 in reply to Hidden]

sorry you have had such a rotten time of it all and ya so low etc... but i was wonderin if some of your meds could be causin you more trouble than there are worth...(not sayin this is just whats wrong as i know its not) with fibro you can become so hyersenstive to madication that you might actually be gettin some of the more rare side affects .. this has happened to me.. i came off a lot of em due to this and to be honest i do feel a ikkle better... not much but my heads a ikkle more level (thank god as i was havin severe absences as well as lots of other things), i dont feel like i am sat in the fast lane of the M5 now lol x dont get me wrong i still feel bloody awful but i feel cos my heads clearer i am able to cope better x x n dont get me wrong it wasnt easy comin off or cuttin back on my meds as i had severe withdrawals ( some i had to come straight off of) but to be honest it was worth it. at the time i couldnt see it but all my friends and family noticed it and noticed when i reduced my meds n seen a diffence in me. hang in there hun day by day things will get easier with ya grievin etc and maybe talk to ya docs bout slowly reducin them so its not such a biggy to notice even if ya just reduce it by half a tab for a few weeks then reduce again to whole tab etc. if this doesnt help you can always increase again if you need to.. will take time hun to do but if ya can persavere ya may find ya be in a better place and be able to cope with everything better. x x still its all trial and error as not everyone is the same but i have tried everythin aand have had bad highs and lows where i didnt wanna live no more etc but now i have a balance ...sort of lol and i try stayin poso on my really bad days to keep me goin x anyway we are all here for you and ya not alone hun even tho ya may feel it ,as you have all of us x x just talkin and gettin things off ya chest makes a big diffence tooo saves ya bottlin it all up. have you seeen a berevement coucillor since ya husband died maybe that would help too x x sendin love to you and ya children and i am sorry for ya loss too. n heres a big hug just for you x x hopin better days come real soon x x

[Hidden]

Hi there lynnie

Thank you so much for your lovely message. You've certainly hit the nail on the head on several things. I get the most horrendous reactions to the majority of meds that I have been put on. Do you also find that some meds work for a short while and then after a few short weeks/months their effect wears off really quickly? I was quite taken aback when you said about "living in the fast lane of the M5". I've been trying to explain that feeling to my children for ages. I kind of feel like I'm on fast forward whilst everyone/thing else is going at a normal speed. Also when on tv they flick between scenes really quickly I can't bear it. I guess the constant migraines aren't helping with that.

Staying positive is the thing I have the hardest problem with. I am truly thankful for my children and count my blessings that I have them every day.

I had Counselling for a short while, but couldn't afford anymore.

Thanks again x Especially for the love for my children ~ and the love and special hug for me x I know I've been feeling sorry for myself x And to anyone at all reading any of this ~ I know you are ALL struggling in some way or another. Please don't think that I have forgotten that or that I don't care, because I do.

Love, thanks and gentle hugs lynnie xx

.... and my thoughts go out to all Fibro suffers out there xx

[lyndia in reply to Hidden]

Hi Coz. So sorry you are feeling as bad as you do, but, to some extent, I agree with the others, sometimes you can take too many meds [ I`m not really on anything myself, just painkilers when I really have to, as I get bad reactions,]and they make you feel worse, but through everything that is going on PLEASE PLEASE, try and stay as positive as you can, if only for your daughters sake, she needs you, and I`m sure others do as well. I know [ like so many of us ] so well the feelings you are going through now,but darling it will get better, and you will learn to live with it, because I`m pretty sure you`re not a giver up, so Kick this fibro up the backside, and don`t let it beat you.

Here is something that I repeat to myself now and in the past when things have been unbearable, and hopefully it will give you strength to.

GOD GRANT ME THE SERENITY TO ACCEPT THE THINGS I CANNOT CHANGE

THE COURAGE TO CHANGE THE THINGS I CAN

AND THE WISDOM TO KNOW THE DIFFERENCE

This has bought me through many situations, I am 76yrs old now, and proud to say I AM STILL HERE. Lots of love and hugs God Bless keep going

Lyndia x

[Hidden in reply to lyndia]

Hi Lyndia

Thanks so much for your lovely message and the wise words.

I guess at the end of the day it is all down to acceptance. I'm not very good at accepting what's happened to me ~ not just the Fibro. Also accepting I can't do all the things I used to be able to do.

I've had such amazing support from the kind and lovely people on here.

I'm going to type up the wise words above and then laminate them and put them on my fridge.

Thank you Lyndia

Love and hugs to you and God Bless you for helping me xxx

[Cookie72]

Hi coz, I agree with everything all our fibro friends have said so I won't bore you and write it all again, il just say keep your chin up coz, we are all here for you and thinking of you and I'm sending you a huge gentle hug just for you, .....hope things start to go right for you soon...Luv n God bless Dee xx

[Hidden in reply to Cookie72]

Thank you Dee

And special thanks for the gentle hug

Coz x x x