Just when I thought things couldn't get any worse

All your fibromyalgia experiences, questions and answers.

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Just when I thought things couldn't get any worse

Postby rashi » Mon Mar 24, 2014 1:33 am

Hi all

It's been a long while since I posted on here.

I have been living with fibromyalgia for over a year now as well as joint hypermobility syndrome. Instead of getting better I am getting worse.

I am on 13 tablets a day including the highest dose of pregabalin and a slow release morphine. I work full time as a self employed childminder. I am also married with 3 daughters aged 10, 7 & 3.

I have been exceptionally poorly which led to a diagnosis of serotonin syndrome and being put on beta blockers.

I ask all the time "why me?" as I am sure many of you do.

I am so scared about dying or being bed ridden with pain.

I feel I would have more support and sympathy if I had been diagnosed with cancer because everyone knows what it is. No one understands my illnesses and just tell me that I will be ok and no point worrying about it.

Life sucks!!!!!
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Re: Just when I thought things couldn't get any worse

Postby FluppyPuffy » Mon Mar 24, 2014 10:31 am

Life certainly does suck at times :tongueout: :tongueout: :tongueout:

Most of us have similar times to what you're going thru at the moment, so understand how it is making you think and feel. I used to wonder and think "Why me??" in the earlier days of being dx'd, it's one of the steps it seems that we have to take, along with the worries about what the future could hold for us and how we might end up. Unfortunately what might happen in the future is pretty much out of our hands, and worrying about it drains precious energy out of us that, quite often, we can't afford to lose. Because of this, most of us tend to live day~by~day, taking whatever comes at us and trying to find the best way to live/deal with it. If you're finding these thoughts and worries are beginning to swamp all other areas of your life, it might be worth considering looking into whether some extra help could help you get things back to a more settled and even level.

It's not unusual to find that you have quite a list of ingredients for your daily meds cocktail, along with additional things that we may take as and when they are needed. It is :yikes: :yikes: :yikes: when you consider how many we are popping each day and how they may affect us, such as how Serotonin Syndrome came about in your case. On the flip side tho, there is the realisation of just how much more our cocktails actually help us. Without mine, getting out of bed would be nigh on impossible, and I definitely wouldn't be able to do the things I do manage to tackle.

Altho things seem very bleak and overwhelming at the moment, there is a way out of the blackness for you, it just needs a bit more finding to locate it.
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Re: Just when I thought things couldn't get any worse

Postby painprincess1 » Mon Mar 24, 2014 11:07 am

Most of us here at times sit and think omg all these pills. I live with someone who never take pills unless there nearly dead so I feel really bad taking them.like I. A fake. I take four Tramadol four paracetamol anti depressants two of them and gastro pill and Zantac two of them. That on a good day bad day I take six tram, and like Fluppy said with out them I couldn't even move. I stopped asking why me as know one can ever give you a answer to that apart from god and I'm not ready for that yet :lol: .dont beat yourself up about how you feel you have a busy job and your doing better then most of us who can't even work anymore .so be proud of yourself your doing great xxx
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Re: Just when I thought things couldn't get any worse

Postby rashi » Mon Mar 24, 2014 12:17 pm

I am very lucky to be working but I put on a huge front. If I am honest I cannot cope working as much as I do and without my meds I would not be able to move. I am crying inside but need to have something of a "normal" life and earn money to provide for my children.

Most days I just want to give up and nobody I know understands how I am feeling. My family seem to be in denial since I was diagnosed with serotonin syndrome and put on the beta blockers.

My fears are that I will end up bedridden or in a morgue. It's just not fair and worst of all ppl don't take it seriously because there is not enough awareness out there for my illnesses and this isolates me further.

I ask myself all the time what have I done so bad that I deserve this.
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Re: Just when I thought things couldn't get any worse

Postby bikerbabe35uk » Mon Mar 24, 2014 5:29 pm

I know how you are feeling.I work as a auxiliary nurse on a busy hcop ward .and just doing my job sometimes kills me .my hubby dont understand .i think because i try to block the pain and carry on as normal he dont get it i feel so alone x
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Re: Just when I thought things couldn't get any worse

Postby humphreys » Mon Mar 24, 2014 10:40 pm

I agree there's not a lot of help for people with Fibro, it stinks. I have fibro, osteoarthritis, rhumatoid as well, I put a front on with most friends and family as well, people say I look well, I wish i could say, If you could only look inside, you wouldn't say that. I had an appointment with a Rhumatologist this week it got cancelled though, and 6mths ago I had an appointment that also got cancelled. I was so annoyed I asked why, they said we don't have enough doctors. I don't know if that's the case where anyone else is, I live on the Isle of Man. If I said I would pay to see someone, I would get an appointment straight away, I've paid my tax and insurance for 40yrs.
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Re: Just when I thought things couldn't get any worse

Postby denys » Tue Mar 25, 2014 12:11 am

I agree with Flup we do all have these times of why me, but we cant afford to stay in that place as all it does is drag us down. Maybe talking to your doc about how you are feeling and seeing if there are any other therapies that may help, perhaps one of the talking therapies would help you to come to terms with your conditions and give you some coping strategies.
Denys

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Re: Just when I thought things couldn't get any worse

Postby rashi » Tue Mar 25, 2014 2:26 am

I currently have CBT sessions once a week as well as taking 600mg Pregabalin, 80mg slow release morphine, 200mg sertraline, 30/50mg co-coda mol, vitamin D and 300mg tramadol.

How much more could I be punished???????

Ppl tell me to rest but I can't. I can't sit or lay still because of the pain. I just feel so lonely :(
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Re: Just when I thought things couldn't get any worse

Postby jayj » Tue Mar 25, 2014 3:00 am

Hi rashi, I thought I had replyed to this post but I can find my reply, I know how you are feeling im in pain all the time I cant sit in a chair only to eat a meal and im rushing the meal so I can stand up Dr dont seem to understand I have had the same thoughts as you, friends dont want to know anymore, if you would like to chat sometime please feel free to pm me, please dont feel lonely
Take care
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