Struggling!

[Starryp]

Hi everyone,

So sorry to moan! It's 2 years since I started with shoulder neck and back pain. I've had MRI s , emgs, bloods for everything 😳 The pain since then has spread all over my body and weakness on left side mostly. I'm on maximum dose of pregablin 600 mg a day and it only just takes the worst away. I have terrible muscle twitching all over all the time. Doctors have loosely bounded the words fibromyalgia ish!, chronic fatigue, anxiety disorder but no one wants to pin it down. I feel I'm getting worse and it's scary. My family think it's all anxiety and if I just do this that and the other I'll get better. So frustrating when you can barely brush your teeth some mornings! Can anyone relate to my story? Feel so alone with it. Sinuses playing up this morning too which doesn't help! Sorry to dump this on you just fed up with it all! 😞

[YASMINTINA FMA UK Volunteer]

No worries your not dumping your need listening ear ,go back to gp and be heard they really are equipped to get you a diagnosis there is a waiting list nhs but asked to get a referral for check for m e , mine has just come through 4mths . I've got fibro but want some answers if m e is following as well . He /she can do the pressure point test my doc diagnosed me on that alone I know some send people get sent to rheumatology to tick a box as well/ as for your anxiety that is very real for you and needs accessing too, don't suffer in silence I'm sure your family mean well but it's you that needs the help. Pick up the phone get that appointment today and lets us know how you get on , ask to keep the same gp {you mite already done this] then they are much better equipped to follow your personal history lots of love Yasmin Tina

[Starryp in reply to YASMINTINA]

Hiya Yasmin, thank you for your lovely reply. I have seen so many specialists and they seem to have given up on me! They all don't seem to believe in fibromyalgia and am convinced it's anxiety depression linked to my traumatic past. I'm going to ask for a rheumatology referral as it's probably the only consultant I haven't seen! So fed up with all these random symptoms and pain! X

[Hidden]

Hi hun- yes i can big time, fibro comes along with chronic fatigue, M.E.( myalgic encephalomylitis) my teeth have started to hurt recently it cost me £26 to find out its nerve pain related to all 3 illnesses, Ie been advised to buy sensitive toothpaste and rub it on the sore areas as well as brushing, I find my electric brush is too harsh at the moment, you will get anxiety trying to deal with all this, my shoulder and neck are a pest too I,ve had to learn sitting and sleeping properly, got a Down only pillow, and I sit in a dining chair with a high back more than an arm chair for good posture. I just didnt get on with pregab or gabapent Ive stuck to conventional pain relief I use Tramadol 50 with 2 paracetamol 4 times daily although now its settled I,m slowly decreasing the dose and with 2 steroid injections this week for knee and shoulder I should be in good spirits for a while..

[Starryp in reply to Hidden]

Hi, thank you for your lovely reply. I hope you do find some relief now. I need to work on my posture I think too. It seems here no medics want to give a diagnosis until you've had pain for about five years! They keep saying doctors don't really understand fibromyalgia, and it's just a collection of symptoms! X

[rosewine]

Don't worry you rent dumping sometime you have to just get it out of your system. Not having a concrete diagnosis can't be helping you. It sounds as though you need some other meds on top of the Pregablin to help bring your pain levels down to a more manageable level. I think you need a referral as your GP sounds very undecided what to do. I asked to see a Pain specialist and they might be able to help with some suggestions. Let us know how you are.x

[Starryp in reply to rosewine]

Thank you! It's frustrating gp, consultants think it's anxiety/depression as I've been through a lot of trauma but finding it difficult to believe it would cause this much pain. They are all sick of seeing me! Thank you for your lovely reply 😘

[rosewine in reply to Starryp]

From what I've read it is often the case that fibro starts after some kind of trauma be it physical or mental.x