So frustrated

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Message between Irene66 and Rossy66

Mea few seconds ago

Hi I'm at a bit of a loss I went to see a rheumatologist yesterday I've fibro and subacute discoid lupus I've been prescribed gapapentin for pain which isn't working and my gp said personally she thinks there no good for people with fibro as there for nerve pain...the rheumatologist just said most of my pain was fibro and wear & tear arthritis see you in 5-6 months I feel like I'm banging my head against a brick wall ...anyone else having or had problems getting any help with pain management maybe because I have coronary heart disease I don't know but my mood is really low and my pain as you know is unbearable sorry for ranting I feel like they think it's all in my head x

6 Replies

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  • Hi, I'm sorry you are in this position and getting no support. Sadly that's very common from the health professionals re people with chronic pain. I found gabapentin marginally helpful but did remove pain completely. It took me years to find support and I know other here have experienced the same. Have you seen a pain management consultant? Talk to you gp again. Please be assured we understand how you feel. Remain blessed and as well as possible. X

  • Hi Irene, I have had no follow up with my Rhumetologist nor would I if invited! A letter from my GP and an ear bending from mother consultant was how I got my fibro diagnosis from him. My wife works in ICU at the same hospital and on talking in confidence to his staff found out he doesn't believe fibro exsists! I get on fine without him.

    I have a great forward thinking GP who prescribes my drugs, we have experimented with different ones and doses to get to where I am now. He has referred me to the Pain Clinic for a second opinion on neck and shoulders as I have three bulging discs and a check on my Meds. I have also been referred for physio and one on one CBT. There is nothing I can see that the Rhumetologist could add, if I did I would see the other one at the hospital who apparently is a lot more supportive. Given the nature of our illness I personally think we would be better seeing a neurologist rather than a Rhumetologist anyway!

    So I would firstly talk to GP about pain Meds then if no joy asked to be referred to Pain Clinic at hospital. Many hospitals run a PAin Management course which I found very useful, your GP can refer you to this also. I picked up the practice of 'mindfulness ' which works alongside my Meds and helps greatly.

    Keep pushing

    Patrick x

  • Hello my lovely, I use pregabalin and butrans patches for pain supplemented with opiates when neccesary, couldn't tolerate gabapentin as upset tummy and did very little, but there are other options, sertraline is one that's supposed to be good again I can't use. Lots of people use all sorts of different stuff, give your GP the info pack from the fmauk site, and have a look for a Rheumy who specialises in Fibro on the NHS webs.and then ask to be re referred, you are alloed to do this under the patients charter I beleive. Your lupus is treatable and not in 6 months! Above all be pushy and don't give up. There is also a cream that's recommended by arthritis uk called ZACIN (capsaicin) that you can get on prescription, I have no idea how it works but for localised pain it's brilliant, several of us use it but it can cause reddening of the skin for a while , it's a last resort for me and you do have to reapply several times, it's made from capsicum- peppers. Good luck and so sorry you're having this problem. Gentle hugs xx

  • No Irene66 it is not in your head if only, these people ought to suffer with this they would only have it an hour if that and would be screaming for help, you are now part of an elite club so don't lose heart, someone on this site can always help with advise or just listen while you get it off your chest we all have days like that. so my friend try and smile and say to hell with you someone somewhere down the line will be able to help you.

    Love & Hugs

    Xx

  • Hi Irene66

    I really am so genuinely sorry to read this my friend, I want to sincerely wish you all the best of luck and please take care of yourself my friend. Please can I assure you that your Fibro and arthritis are not all in your head, as they are genuine and real illnesses.

    All my hopes and dreams for you

    Ken x

  • Thank you all for your supportive replies I went to see a OT yesterday and I start a fibro programme which is coping strategies and gental exercise may i could be referred from there to pain management hope you all have a lovely and pain free day 😘 Xx

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