So Frustrated

All your fibromyalgia experiences, questions and answers.

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So Frustrated

Postby aziriphale » Thu Aug 28, 2014 11:34 am

a bit of background

So I got diagnosed last year after about 20 years of the symptoms and being told i was faking it or just lazy for that whole time, I have lost everything due to this condition over the years so I also have chronic depression with suicidal tendencies as well, at first everything was put down to my scoliosis so I was over the moon when i got diagnosed


so now, last 18 mths or so I've had very few good days, had a spate of around 3 mths last year when i could barely move and to be honest i am just not coping very well with this, every day is a battle fighting the pain, stiffness, pins and needles, numbness ect and the urge to end it all, I can't manage everyday tasks, cleaning, shopping, feeding myself ect, and I find myself having to choose what things to do, for example its small things like do i get some shopping in or do some housework

I just am in such a crisis state right now and I don't know which way to turn for help
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Re: So Frustrated

Postby rich44 » Thu Aug 28, 2014 12:00 pm

Hi

Have you got any friends/family/neighbours who might be able to lend a hand?

Just little things like if they're going shopping anyway picking up something for you? It's not nice needing to ask but it might be one less thing?

Are you currently being treated by anyone? If nothing else please talk to your gp about your feelings as they can help you.

You sound like you need to be referred to a pain clinic if nothing else.
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Re: So Frustrated

Postby aziriphale » Thu Aug 28, 2014 12:09 pm

I have no one

seeing my gp tomorrow plan to talk to them about how things are at the moment, not sure what they can do to help

and done the pain clinic thing, was unable to attend my last appointment however because i couldn't make it down the stairs
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Re: So Frustrated

Postby ..:: lisa ::.. » Thu Aug 28, 2014 12:23 pm

Hi
sounds like you neee to speak with your gp quite urgently.

Have you contacted occupational therapy?

I referred myself through my local council website.

Also ask your gp about different talking therapies that may be available to you.

I know when I am in so much pain and still have to try and run a house it all gets on top of me and I have the feeling that ending it would be much easier than this constant battle!!

It becomes a vicious circle!

I also know its easy for us to say go and get this help and that but as you just said its not always possible due to physical limitations.

There is also adult social care services I think they offer support within the home but again thats something youd have to look at through your local council.

Im not sure if there is a helpline that can give you some better suggestions.....

I hope you find some support as it sounds like you really need it right now x
Hope you can find some support
—(••÷[ I may ramble at times as my train of thought has crashed. Please be patient and bare with me ]÷••)—
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Re: So Frustrated

Postby Tally1068 » Thu Aug 28, 2014 12:30 pm

Can they not put in a Care package for you? You sound as if you more than meet the needs.
I too cant walk, cook or lift anything. I cant bend either. The number of things that I'm finding I cant do is growing. In the last 3 weeks I cant change my duvet cover, for instance.
From the start of this year I've had a Carer who comes in every day to do everything I cant. I couldn't exist without them.

Asking your neighbours works well for short periods of time, but if you haven't got family then you need someone else to help out.

I have a regular army now. Besides the Carer, I employ a cleaner, an ironer and a gardener. Plus dog walkers for my dog (though I realise this wasn't what DLA was awarded for.) :-D He's essential for my mental health and keeps me going!

I cant remember who was instrumental in arranging my Care package as I was out of it on morphine, but it was set up very quickly and has been a lifeline.

Ask your GP or Specialist. I'm sure they will have the details. All the very best

EDIT: Just seen that lisa has replied along the same lines. One thing I've found about fibro is that you have to shout your needs from the rooftop.
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Re: So Frustrated

Postby FluppyPuffy » Thu Aug 28, 2014 12:58 pm

Sorry to hear how things are currently for you :grouphug: :grouphug: :grouphug:

With you not being able to make your last Pain Clinic appt, are you still under them, or have you been discharged back into the care of your GP??? Just asking as some areas have volunteer helpers and drivers who tend to go out to patients that struggle to attend clinics and help them get there. It's not available in every area, but might be something to consider looking into.

When you do see your GP, explain in full detail how things are for you, if you don't give them the full story, they can only act on the info you have given them. If it helps, write things down, as well as acting as a reminder of what you want to say, if things become somewhat fraught for you, you can just pass your sheet over for them to read. You could also print up your post on here and do the same with that.

Wrt to shopping, are you in a position to use supermarket t'interweb shopping??? Doing that means you wouldn't have to go out for things, and as things like bread, butter, milk can be frozen, you could possibly buy enough to last you a good while.

For everyday tasks, could you try prioritising what needs to be done??? Then, when you have your list of things to do, take the task/chore that you will be tackling and split it into smaller, more manageable segments. You can do a bit, have a break, do a bit more, have a break. I know it's a faffy way of doing things, can seem like you're just wasting time and getting nowhere, but when you look back and can see something that you have done, no matter how small it may be, that accomplishment can help lift things a little.

A good number of us have been in our own dark, bleak places, so understand where you are at the moment. Altho the blackness seems to be overwhelming, there does tend to be a faint glimmer somewhere in it, it's just taking that first step towards finding it, and ultimately a way out of the blackness, can be one of the most exhausting and :yikes: :yikes: :yikes: :yikes: :yikes: things to do.
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Re: So Frustrated

Postby Annie54 » Thu Aug 28, 2014 1:15 pm

I'm so sorry that you feel so bad. I also suffer from chronic depression and was greatly helped by the proper medication. I so agree about writing down everything you need to say to your GP and take it with you. Everything you have put into this post you need to tell your GP. Someone else has said that if you need to, just hand over what you have written and make sure they really read it and address all your needs. I do hope you get the help you need. Keep posting on here, everyone understands as we are all going through it too, one way or another.
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Re: So Frustrated

Postby aziriphale » Thu Aug 28, 2014 1:30 pm

Thank you for all the great suggests, its so wonderful to find people who understand so bad its because we are all suffering

I will write down what i want to say tomorrow

I do sometimes do internet shopping but i am without a freezer and only a small fridge so find i am having to get basics in every couple of days

I did have an assessment from an OT, but there wasn't a lot she could do she referred me to a place that should be able to help me get rehomed to somewhere more suited for my needs but not heard anything back from them yet
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Re: So Frustrated

Postby rich44 » Thu Aug 28, 2014 2:13 pm

Sorry to hear about you being on your own physically with this but there's always people here that will listen and offer help & ideas.

Are you in social housing since you mention getting a house move? If you are they will have advisors who should come out and talk you through benefits getting social services involved if you need support things like that even if you aren't your local council will have these advisors too and they are definitely worth talking too.

If you have a phone or tablet there's a useful little app called FibroMapp and it's a very easy way of recording medication, pain etc without needing to write.

Have you applied for Pip? It sounds very much like you'd qualify and the money would help you pay people to come in and do some of the jobs for you.
It's awful to feel so bad and be in your situation, I know I've been there but with the right approach and the right meds I'm sure you can gain some more control over this and get some of your life back.

Good luck with your gp and don't let them fob you off.
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Re: So Frustrated

Postby marie marrison » Thu Aug 28, 2014 6:39 pm

I , firstly I know where u coming from , I had a symptoms on and off for three years while I was still trying to hold on to a full time , then one day I couldn`t do anything , went to the GP, she prescribe me galapatin and amatrypline, these drugs help me quiet a lot , I can`t do anything energetic put I can do a little bit during the day, you need to go to your doctor and ask her the medication for the illness, I whis you good luck and let us know how u getting on xxx :-)
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Re: So Frustrated

Postby kayhealey » Thu Aug 28, 2014 11:53 pm

This is a lovely, caring group of people here who know where you are and how to get out. I have nothing to add to all the suggestions. Everything I thought of was mentioned before I got to the end of the posts. Just wanted to say you got to a good place for helpful ideas and that I hope your GP will make some referrals that will be helpful, that some of these suggestions will help, that you will make friends with one or two of your neighbors (if you are having a decent enough day to go to the market, maybe knocking on a door and asking if you can pick something up for them too, this may not be practical but since I don't know you it's hard to know what is feasible)or find friends some other way (FB is one way) maybe through common interests even online if you are even able to think about that, maybe a church if you are so inclined- certainly a phone call to a church might provide a ride to church and lead to other help. Anway you will be in my prayers and ck. back and let us know how you are making out. Things can get better. You obviously really need some proper medical advice and treatment and some practical help. God bless and soft hugs.
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Re: So Frustrated

Postby hazely » Fri Aug 29, 2014 1:54 pm

Hi sorry to hear things are really bad for you at present. If you contact your local framework they maybe able to help you get a freezer. hth
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Re: So Frustrated

Postby aziriphale » Mon Sep 01, 2014 11:16 am

Saw a doctor on friday, told him everything he was insisting my symptoms must be down to something else and took a load of bloods he tried to lower my dose of painkillers instead of giving me something else at first, i put my foot down since i can barely manage on the ones i have so been left on them and hes given me Naproxen

asked about getting referred for practical support and got nowhere
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Re: So Frustrated

Postby rich44 » Mon Sep 01, 2014 11:53 am

I don't understand why Dr's are so hell bent on giving people blooming Naproxen which is an NSAID like ibuprofen.
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Re: So Frustrated

Postby aziriphale » Mon Sep 01, 2014 12:19 pm

I know i was taken off diclofenac a while back because of the risks, so i now get stuck on a stronger one makes no sense to me well he said it was stronger, not picked them up yet to see
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