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Fibromyalgia Pain out of control

Jan 11, 2019 4:42 AM

Hi everyone l haven't been on here for a long time but I am in so much pain right now I don't know what to do. I take slow-release tramadol four times a day along with paracetamol; but the past two days have been horrific. I cannot walk properly nor dress or undress myself at the moment. I saw my GP on Wednesday and we discussed my pain medication which has been very affective up until yesterday. I have just called my surgery and I am waiting for a call back to see if there is anything at I can take for the break through pain.

What upsets me so much more is that I have applied for person independence and after being refused twice I know have to go to a tribunal as the powers that be do not believe that I am in need of this help. I also have Complex PTSD and severe anxiety.

Thank you to anyone who reads this, I think I just needed to get things off my chest.

Sending you all positive thoughts and love as our struggles continue.

Jan 11, 2019 4:54 AM

I'm so sorry to hear how much pain you're in Amy. I hope that the GP calls soon with a solution. I'm sorry to hear about your troubles with PIP too. I had to go through Mandatory Reconsideration and submit multiple new pieces of evidence and they gave me PIP but only for a limited time and at the lowest possibly rate despite my disabilities. Unfortunately the disability benefits system in this country has gone to 💩 but hopefully you win the tribunal. Remember you can get advocacy and they can speak on your behalf

Jan 11, 2019 8:45 AM

I'm sorry you're having such a bad sorrel of pain. Is this a flare up or your every day fibro pain?

It sounds like when my fibro was first diagnosed in 2009. It worsened with each flare up. In 2012 I was dx with Sjogrens which causes joint pain/inflammation & dryness. When my rheumatologist started me on the plaquenil it also helped my fibro pain. In 2014 another doc started me on gabapentin, but due to genetic sensitivities to most meds I can only take up to 600 mg a day, so over the last few years I've taken 300 mg at bedtime and I take 100mg extra as needed up to 3x a day when I'm in a flare. I was having really bad muscle spasms in my spine and neck after surgery in 2016 & 2017, so the spine surgeon has my taking Baclofen to relax the muscles at bedtime (again I'm sensitive to it and can't take more without quickly becoming a blubbering idiot). I was surprised at the relief in all my muscles (fibro knots included) that allow me to get more rest than ever over the past 9 years. Maybe your doc can look at trying something different for you. And they definitely should check to see if you have other conditions that are adding to the fibro pain; most on here with fibro have multiple coinciding pain issues. Hugs love & prayers your PIP review goes in your favor, to get assistance, and you can get your pain under better control! 🙂❤🙏🌼

Jan 12, 2019 2:39 AM

Thank you so much for your kind words I really appreciate your input. My Gp is testing me for other things like lupus and any rheumatoid conditions. I hope you are ok and that you have as good a day as possible 😊

Jan 12, 2019 2:43 AM

I was tried on gabapentin about two years ago but the side effects where so horrible I just couldn't continue with it. Yes I totally agree about our benefit system it horrendous and when you feel bad already all they do is make out to be a liar and that there is nothing wrong with you. Thanks again 😊💜

Jan 13, 2019 8:29 AM

Well I'll be praying that they find out if you have any coexisting issues so they can be addressed as well, and you can better cope with the pain. I remember being where you are and it felt like it would never end. But try and stay positive that they will get answers and give you the right treatment to help. Take frequent rests as much as possible, and take it one day at a time, one step/hour at a time. 🙂❤🙏🌼

Feb 14, 2019 2:28 AM

I was the same with gabapentin... the side effects made my life even worse than the fibromyalgia does.
I'm currently on the 12th month since my PIP application and waiting for a tribunal date.. I feel your pain. Hope it eases a little soon! ❤

Feb 14, 2019 5:08 AM

Bless you and I hope you get your PIP. I was going to tribunal however they called and offered standard daily living allowance but nothing for mobility. I accepted the SDL and I am still going to appeal for mobility. As I also have very complex mental health issues I am getting help from my local Money Advice Unit and they have been great. It's such a relief for me as I have been unable to work since November.

Gabapentin isn't even licensed for Fibro pain but it does help some people. I have refused both gabapentin and pregabalin and although my pain is very very bad at times I would rather manage with the pain killers I have than go through those side effects again. Wishing you all the best and I hope things improve for you 🤞

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