So fed up again!!!

[sue32]

I'm afraid I'm having a moan again guys!! I feel sooo wretched. My pain is at an all time high, I can hardly move around. If I could stay in bed forever I would! I have made an appointment to see my GP, but that's not till June 20th. She has no appointments till then. Every part of me is in agony, I have cracked skin on my heels, which is extremely painful, even my buttocks are painful. I can't stand for longer than about 10 seconds! I know that sounds a bit dramatic, but it's true! My weight is constantly creeping up, but nothing I do seems to work, I mean about losing weight. I want to do sooo much, especially in my garden, but I feel so damn helpless. My shaking has got much worse but there's nothing I can do about that, it's familial essential tremor, but even holding a mug is difficult nowadays as my shaking means I usually only get half a mug!! I had a bad burn a few weeks ago on my leg cos I dropped my evening meal on it - partial thickness burn, 3 visits to the hospital for dressings!! I am taking antidepressants - Cipramil - the highest dose I can take, but some days I feel in such a deep, dark place. I know I have to keep going, especially for my daughter and my beautiful 9 month old grandson, and, believe me, if I didn't have them I wouldn't care what happened to me. I need help with housework, but I can't afford to pay the rates I've been quoted. So that's me folks, fed up to the back teeth with not being able to do anything!! Love you all by the way. Thanks for listening and giving me a forum where I can vent my feelings! XXXXXX

[Hidden]

Sorry you are feeling so bad and are in so much pain... Re your anti depressant at the highest dose.... Have to tried any others ... As this one doesn't seem to be helping if you are at the max dose.... I had to try 4 and the fourth one suits me perfectly I take what I consider a low dose and I get relief at night and get sleep....

Day meds its been over 20 years now and the only thing I can tolerate is paracetamol so I just carry on the best I can ... I must say its easier to face the day after a good nights sleep though

Hope you get some help from your GP when you see them

Vg x

[sue32 in reply to Hidden]

I've been on Citalopram now for about 10 years! Maybe it's time for a change! XXXX

[Fibrofoggiest]

I too am sorry you are feeling so bad at the moment. Sometimes everything feels like its conspiring against us doesn't it? I too have essential tremor and it drives me nuts, I'm so sorry bout your burn, that must have been really nasty for you. It seems a very long wait to see your GP, but do try and make notes about what you need to discuss, so that you can cover everything you need to when you eventually get to see her.

Sending you healing thoughts.

Foggy x

[sue32 in reply to Fibrofoggiest]

I'll definitely be making notes fibro thanks XXX

[haribo36]

Hi there,so sorry to hear your in such pain and feeling so low.I too am at an awful low with my pain really bad and fm symptoms all flared up.I feel the same as you,I have periods of dark depression where I wish I would not wake up when I go to sleep.Maybe it will help you as it's helped me reading your message to know that Iam not the only one experiencing this.And it's my 10 year old and 4 year old that keep me going.AS stupid as this sounds Iam not helping matters by trying to reduce my painkillers as Iam so fed up with all the meds I take and want to come off most of them.Regarding the cleaning thing,I struggled with it for years and as my fm worsened I applied for help from social services.It took a while to get assessed etc and I get a personal budget where I can employ someone to do the things I struggle with and to help me.I was paying a cleaner from my DLA money but I can't afford it now so Iam going to pay the cleaner from my personal budget money as its part of the assessed help I need.Is that something you could consider doing?I hope this helps,you can message me if you want to chat more.I would like to chat with others with this condition as I find that no one else really understands,take care x

[sue32 in reply to haribo36]

I would certainly consider paying a cleaner if I got personal budget money haribo! How would I go about finding out if I were entitled to that? Thanks chuck! XXX

[haribo36 in reply to sue32]

Hi there,regarding the personal budget you have to contact adult social services and tell them that you have fibromyalgia and you would like an assessment as you need help with your day to day activities.It might be helpful to jot down beforehand all the things you struggle with like taking care of yourself,cooking,shopping,getting out and about,if you have kids then you should include whether you need help with looking after their needs,taking care of your home etc..Someone comes to you to do an assessment and they will take into consideration how much help you get(if any)into consideration as well.You can still get help even if a partner or someone helps care for you as they can't just assume that the person can give you all the help you need.It took me a long time to contact them as I was very fearful that they might think that I wasn't capable of looking after my kids but that wasn't the case at all.If you are entitled to help then a support plan is written by someone from ILA(I dependant living advocacy),with consent from yourself regarding how you would like it to be written and what help you need.You can either choose to have a personal budget which you can manage yourself or choose another organisation called Essex pass to manage for you whereby you can pay someone to be your personal assistant to help you with those things that you find hard.Or you can choose to let social services to use their staff to help you with your needs.Personally I find that where a lot of control has been taken away by this condition it's nice have your own personal budget whereby you can choose who you want to help you and how.If you want any further info then feel free to contact me,hope this helps x

[sue32 in reply to haribo36]

Thanx sooo much haribo! I'll get onto my local social services tomorrow. I used to work alongside some of the social workers locally so it should be relatively easy for me to contact them. How long the waiting list for an assessment is though is anybody's guess!! XX

[Hidden]

Hi Sue

sorry things are so tough for you right know.

Hold photos of your lovely daughter & grandchild close so you can use the focus you have to keep as strong as possible.they need you.

pain is so tiring and when it affects sleep everything seems hopeless

I have used a book at home to help with focus- Mindfulness -finding peace in a frantic world.Mark Williams-it comes with a CD to listen to.

keep safe and remember there are people on this site that know what it's like.

Try to tend your body as well as you can-I found tea tree foot soak for the cracked heels -it took a while to heal.then a tea tea foot cream to soften. then I had a pedipro for my birthday and feel much less scabby!

for me removing all the chemicals I can from my life is helping-no alcohol,no processed food /MSG at all,few cleaning chemicals.I have no idea if there is clinical proof or it is a sense of taking control over something that helps.My sleep is still poor but I feel I have grown in strength a bit.

by looking after myself in small ways I do feel a little better.

take care of you.

x

Gigi

[sue32 in reply to Hidden]

That's another thing that gets me down gigi, I'm having very poor nights. I'm having very vivid dreams, then waking up every hour from 3am. Then it gets to 8.30am and I think 'I'll just have another half an hour', and I wake up at 10.30am!! What's that all about?? XXXX

[Hidden]

that sounds tiring

my chronic fatigue is partly due to poor sleep and I have tried sleep pillow spray.staying of the computer late and hot chocolate drink before bed after a warm bath

when I wake up regularly in the middle of the night I do something I hate doing like loo cleaning

I also sometimes use a gadget called a mindspa -expensive bit of kit.flashing lights that send me to sleep-or wake me up-no use if epilepsy is a problem.

check with your GP about any meds and dreams

keep a sleep diary and compair the foods you eat and meds.the only way is to be detectives

it's trial and error as to what helps

xx

gigi

[sue32 in reply to Hidden]

Thank you, a lot of good ideas there gigi. I will certainly try them out! XXX