What to do?

Hello everyone reading this

I have had a really bad three weeks with Fibro pain and Costochondritis. I have been put on Amitryptiline (10mg per night), 25mg BuTrans patches and Diclofenac (3 times a day). Im still in pain :( Not as bad but still bad enough. I am sure my GP wont believe me :( I am feeling quite sleepy and am not fit to drive like this.

Have been off work for three weeks and am signed off currently til the end of next week. I only work part time (25 hours per week) but am finding it too much. I am very stressed and highly anxious which is not helping the pain.

Am very down and depressed (understatement). We simply cant manage on my husbands money. I have applied for PIP but reading others experiences I am doubtful I will get it and any decision is months away as I only applied two months ago.

Im sorry - I dont expect anyone to wave a magic wand for me. I just need to speak where people understand what I am going through.

Gentle ((Hugs)) to all of you and thank you for listening.

xx

9 Replies

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  • Hi.

    just read your post and though I was reading my one from a while back (check it out) they are so similar.

    I am so sorry you are feeling like this. You are not alone, that much I can promise.

    I too am awaiting PIP. For all tge good it will do as like you, I know of so so many that have been refused.

    I met soneone tge other day who had just come back from her tribunal appeal thingy. She was sat infront of a panel of 5 people and had to justify why she thought they should reconsider. The irony... not 1 of them, not 1, was medically trained in any way. !!!!!!!

    The new system is a joke .

    one of them asked her about her ability to put petrol in her car tgen went on waffling about the possibility of jobs that she would be able to do because she could do that.

    Stupid.

    Anyway, I dont want to depress you further and want to leave you with knowing that her appeal was granted.

    it is unfair and cruel but that is the current system. You just have to keep at it. I am of the mind that they will refuse mine so am trying to be negative about it to prepare me for an appeal. Might sound silly but I dont want to get my own hopes up. That way if I get it...brill.

    We are really struggling. Was in court yest about council tax. They aren't very helpful either. Paid it on time for nearly 2 decades and now I need some support they couldnt care less.

    I do hope you feel better tomorrow. It is a terrible situation.

    Keep posting though as I have found so much support on here.

    Thinking of you.

    Em :-)

  • Thank you for replying to me Em :)

    I understand why you feel its better to be pessimistic about your PIP outcome - that way if you get it, its a nice surprise :) I am so sorry for your situation about your council tax - like you said, we pay it faithfully for decades then when we need help they couldnt care less :(

    Thanks for understanding but sorry its because you are in the same situation if that makes sense?

    Big ((hug)) to you hun xxx

  • Right back at ya xx

    keep in touch. You can private message me if you want. Sometimes its easier to say more over that.

    Anyway. Speak soon.

    big hug

    Em

  • Hi Claire2461

    I am so sorry to read that you are suffering so much, and I genuinely hope that you can find some resolution and relief to these issues. I have pasted you some links below that I hope that you find useful? I do not know what other benefits that you could apply for in the interim? But I have pasted some links below to the GOV.UK website on benefits:

    How to claim Income Support

    gov.uk/income-support

    How to claim a Crisis loan

    gov.uk/crisis-loans

    Browse other Benefits

    gov.uk/browse/benefits/jobs...

    If your Fibro symptoms persist or get any worse, I would definitely return and discuss this with your GP? As nobody should be left to suffer in this way! I want to wish you all the best of luck and I genuinely hope that you can find the answers that you so desperately desire and deserve.

    All my hopes and dreams for you

    Ken x

  • Good day. I start with good day because after 13 yrs of all my pain issues & two heart surgeries I have concluded that any day I wake up is a good day.

  • Thank you very much Ken - those links are very helpful :) Thank you for your kindness xx

  • Hello Claire2461,

    It may be the BuTrans patch may not be as effective as you & your Healthcare Professional may expect it to be.

    Research has suggested that opioid medications do not work as efficiently in Fibro patients as in healthy people because of a lack of available opioid receptors in the brain of Fibro patients. According to the EULAR Guidelines for the Management of Fibro, strong opioids - e.g. morphine - are not recommended for Fibro (Lindsey Middlemiss, Founder & Chair of FibroAction 2009)

    fibroaction-public.sharepoi...

    You may wish to consider reading our information about recommended treatment from our website and maybe download & print the factsheets to talk to your GP about other treatments.

    Here is a FAQ which contains all links you may need;

    healthunlocked.com/fibroact...

    You also may find other members talking about Opioids being ineffective for them too of interest;

    healthunlocked.com/fibroact...

    I hope you find some relief soon and I wish you well with your PIP claim. If you need a step by step guides for PIP, please email us at FibroAction using info@fibroaction.org and we'll be happy to send them to you via email.

    Best Wishes

    Emma ;)

    FibroAction Administrator

  • Emma thank you so much - off to look at those links now :)

    Thanks ever so much also for the details for FibroAction - email on its way :) xxx

  • Pleasure :)

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