Struggling....: I don't post much on... - Fibromyalgia Acti...

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Struggling....

soozy1984 profile image
18 Replies

I don't post much on here.... but I just wanted to write down how I am feeling at this very moment.

I have fm, currently on the edge of having a flare up. Can feel myself getting worse every day. I work 25 hours a week and I struggle with that. I have a 3 year old daughter. I am finding every day a struggle at the moment. Nothing is getting done at home cause im exhausted but then I don't sleep well either.

Im seem to be on some pretty low strength pain relief compared to others but then I cant take anything thay sedates me cauee it doesn't agree with me.

I applied for dla in July 2012 and it went to tribunal and it was the worst experience of my life. Ive now re applied and I fully expect that to fail as well.

I feel like im fighting a loosing battle against my fm. I am extremely depressed and currently gettimg CBT sessions. In the early stages of that so yet to see a huge impact.

Just feel like im at a dead end and putting on a brave face atm. Every day is a blessing that ive made it through but im tired of the battle now. It's just not getting any easier :(

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soozy1984 profile image
soozy1984
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18 Replies
bernie1 profile image
bernie1

Hope you feel better soon you should go to doctors

gentle hugs Bernadette xxxx

hamble99b profile image
hamble99b

I'm sorry to hear you are having such a rough time soozy, are you on any anti-depressants? some can also hep with the pain too.

re dla, have you got the benefits and work guides? they helped me.

sending you a gentle hug (( :) ))

sandra.

Ginsing profile image
Ginsing

Hi Hun,

Sometimes life does seem on a downward spiral at this point do go have a chat with your doctor, as Sandra says he may help by prescribing anti depressants they are very good pain blockers and they can also stop those feeling of wanting to cry all the time. They help me infact very much so! :) xgins

soozy1984 profile image
soozy1984

Hi thanks for replying it's appreciated. I take citalopram 40mg which is the highest dose. I don't feel they're working anymore. I am overdue a visit to my doctors and definitely need to go see her.

woodie60 profile image
woodie60

Hi Soozy,

I was in your place at your age, I am now 61 and have learnt to live with this terrible condition. My own view is get off the medications, in my experiance they just send you on a downward spiral. I know its not easy with children, no DLA, at having to work, but believe me Citalopram 40mg and work or looking after kids just wont work. Have you thought about gentle yoga or relaxation Cds. Try and get your mind of the worries of life as this I found was the biggest cause to feeling like your getting. Sorry to be a bit negative but thats FMS I'm afraid. We are all out here rooting for you. DOCTORS on the whole are not much help!

Hi snoozy ,

It could well be that that is not the best med for you I had to try 4 antidepressants before I found one that helps me to sleep and help get me out of the black hole that fibro can put you in... I take 75mg of that at night..... As I can only take paracetamol I am in pain in the day, but sleep at night does help

Please go back to your GP and tell them how you feel and your pain... Working and looking after a little one is so hard at the best of times but with fibro not controlled properly its a nightmare ... I have been there ....

Your GP may offer councelling CBT or a pain clinic , please consider any of these as I have had councelling at my worst time with fibro and a young child and now I am under the pain clinic as well as my GP for pain relief

Good luck

VG x

Hello soozy I am not going to ask how you are because i know ..... One thing you could do is go to the doctors and ask about stronger pain killers that do not sedate , I am on a cocktail of drugs for one thing or another and take it from me i am not sedated i do not even feel tired , there are so many out there that one of them must suit you.

Have you tried all the herbal remedies and relaxation methods , once your little one is in bed you take time for a hot bath lots of lavenda about etc.

I totally understand about the DLA unfortunately they are so negative about Fibro because of their lack of knowledge , did you know you can ask for an assesor that is trained to recognise Fibro and so can relate to you and your symptoms ?

The problem being with Fibro can be with the good days , bad days issue they look at it like well if you have a child and are looking after them then you are well enough for work , ridiculus i know because you are coping only because you have to.

I have a multitude of health issues some serious but one IS Fibro and to be honest they are not all that concerned with it when i go for medicals.

I am so sorry you have been left in this situationn and i empathise with you , keep fighting don't give up ok !

bye for now Katheryn

Messi profile image
Messi

Hi snoozy Ii know how you're feeling I have had fibro and me for 3 years I can't take drugs as I have an intolerance to them but I do take sertraline for the anxiety I don't think I could cope without them some times the exhaustion isover wellming try to keep going and I hope you soon feel better x

tulips123 profile image
tulips123

You sound very low, trying to work and looking after a 3 year old, you need more support. I agree with others, you need to talk to your dr. There are so many different meds. out there, sometimes takes a while to find the right ones that suit you. Is there anyone, family or friend, that could help out in the meantime with the little one? Do they have a nursery place yet?

This condition is bad enough, without all the other worries going on as well. I hope you can find a way to manage things, make life a bit easier. 1st step may be talking to your gp

Take care. xx

ladymoth profile image
ladymoth

It sounds like you're doing too much, Soozy - it's amazing how much better you can feel after a break from work - maybe you could take some leave and rest up a bit?

I do hope you feel better soon!

Moffy x

Lizzywizz profile image
Lizzywizz

My heart goes out to you. I was a single mum and suffered with auto immune conditions all my working life and then developed fibro. I am 69 now and have just been diagnosed with cfs. This is just to let you know that you will survive this. I agree with the other comments, a good chat to your doctor is needed. Also some support for you, especially with a 3 yr old. Friends? Family? could they help to give you some 'you' time. I agree listening to calming music is wonderful if you are not disturbed! Relaxation tecniques are good - gentle hugs, hang on in there.

suffolklass profile image
suffolklass

Hi Soozy

Keep up with the CBT, it gives you good ideas, strategies as they call them, on how to manage things.

It's difficult to work, look after a child and a house; I eventually had to stop work and am now slowly going through 5 years of housework.

Do you have a union you can contact for help and advice? If you do then use them. As a last resort would you be able to reduce your hours? (Only consider this if you can't get dla or pension, if you suggest this then ATOS may push you down this line.)

You're taking the right steps, stay strong, for you and your daughter.

Hugs for you both.

Is

soozy1984 profile image
soozy1984

Thank you all so much for the replies, its so nice to be able to speak to people who can relate to how I am feeling. A lot of the time I am told to get a grip and toughen up which makes me feel even more down.

I am under the care of psychological services now, I have been seeing a clinical psychologist for 3 weeks now and having CBT sessions. He gave me some relaxation CD's to try and they do work but I struggle to stay asleep, I usually find myself waking up around 3am every morning and that's me up for the day.

I used to work 42 hours a week Ive now reduced down to 25 and I cant go any lower otherwise I cannot afford to live. My daughter is in private nursery and she's been there since she was 11 months.

In an ideal world I could only work 16 hours a week or something similar but I just simply cannot afford to do this. I didnt know about requesting an assesor that is familiar with FM and I will bare that in mind as no doubt I will go to tribunal again.

I have a doctors appoinment today at 2.30pm and I have managed to get an appointment with the good doctor! Hopefully something good will come of it as the pain is unbarable today :(

rosaann52 profile image
rosaann52 in reply tosoozy1984

You poor thing....not easy even when your 'well' to work and bring up a little one...but when you go to the Doc's ask him to run a few test , thyroid , thrush, iron levels....all these things can impact on your energy and pain levels...they may not agree at first but keep trying. It seems that problems in these area's can all be connected to 'fybro'....Pacing yourself to do things can help...and your going to have to make some time just for you....even if it's just to have a soak in the bath....try to keep away from anti-depresants and strong pain killers..they seem to cause more problems than they solve. eat lost of fresh foods stay away from to much 'off the shelf' foods..drink lots of water...helps get the toxins out of your body....

I've been a suffer for many years and there's no easy cure..just controling the symptoms. I have recently... reluctantly started taking Nortriptyline and I hate to admitt it has helped with my restless sleeping patterns.....I also was recently diagnosed with Oral thrush...(candida)....which can cause a lot of problems similar to 'fybro' after a corse of treatment I have started to feel a bit better....

on the benefit side if you work 14hrs ...you would I think qualify for a lot more benefits and being a single Mum with a young child ...you may qualify for a lot more... ring the benefits office and ask them.....you have to ask 'are there any benfits I qualify fore'.... Once you've asked that question and told them your circumstances they have to tell you what you qualify for ....

in the Equality Act 2010...odi.gov.uk?equalityact ...

.page 8 fibromyalgia is classified as a disabilty...... hope this helps....best of luck with everything....

On a personal level I think the right antidepressant is a wonderful thing ... I have had fibro 23 years and lack of sleep is horrendous ... Since finding the right antidepressant for me I get 7 hours quality sleep a night and that makes the day so much more bearable... Antidepressants are not just for depression they can help scramble the pain signals to the brain and help you sleep if you have night ones

Take all the help you can get and we are always here

Vg x

jeannie3 profile image
jeannie3

Isn't it horrible what we have to suffer. I hope you had some success at your doctors? I've found my doctors second rate, and that everything I have learnt about pain management has been on this Forum, or one of the other Fibro forums. None of what the doctor prescribed helped, even the painkillers didn't work for me.

'Trial and error' is the best way as different things suit different people. I have to say I have been taking CherryActive Juice for the last ten weeks and I feel soooo much better. A little pricey but well worth sacrificing other things (like chocolate and sugary things that are not good for us anyway), and I've also being trying to keep to a low oxalate diet (tho I keep forgetting whats not good for us). I have not had a migraine in ten weeks - I used to get at least one a week - and I have the energy to get by ok and not totally exhausted. It may not sound like much but I'm not in pain nearly as much, if fact I don't really notice it now.

I did have a flare up with the LOW PRESSURE a few weeks ago, and I felt like giving up, but these things happen. I've learned to pause everything, and just rest. A hot bath and a sleeping tablet can also work wonders. (the only pain relief that works for me is Solphedine and NOT the MAX strength, its dangerous)

I hope you are feeling better, and that you can see a little more light today!! Some times you just need to rest xxx

soozy1984 profile image
soozy1984

Well the doctor has increased my Tramadol up from 100mg every 4-6 hours to 200mg every 4-6 hours and im also on 300mg pregrabalin twice a day and it's not even touching the sides. Have just fell out with my mum because I told her im probably not going to work tomorrow and she said the usual abiut how im lying down to it and im putting my job at risk etc. I feel awful :( what I need is support and not grief. Im at a dead end just now x

soozy1984 profile image
soozy1984

I just wanted to update.... now off Tramadol and on dihydracodeine. Got it from a locum in my practice on Monday. Went back today to get a sick line for work and was told I shouldn't have been prescribed pure dihydracodeine and should have got co-dydramol.... apparently my practice doesn't prescibe dihydracodeine on it's own. It's against practice policy. ... joys. On another note been given a weeks sick line....

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