New to all of this

Hi I'm new to all of this. I've been diagnosed with fibromyalgia found out about a month ago after years of misdiagnosis and weird pains and sensations. Two days ago I started getting cold feet but feel warm to the touch and weird sensations around my body like burning itching sensations and can't have anything on my skin as it's uncomfortable. I've been put on Pregabalin but doesn't feel like anything is working and I feel like I'm getting worse. I'm tired nearly all the time and in a lot of pain 99% of the time. Don't know how much more I can take tbh. Sorry for the essay

19 Replies

  • Hello ditdydoryand welcome to our gang . You will come to realise that we are prpretty much all in the same boat so we all tend to know or have experience with what you are going through , andyes what you are experiencing are all quite normal for fibro. But if any of your symptoms only started since you started taking your medication I would go and see your gp just on case they are not suiting you :-) , there is usually someone to talk to 24 /7 because a lot of us suffer with sleep depravation so you will usually find some of us online in the middle of the night if you have any questions or you just need to vent or you just want a chat there is usually someone here to listen . So once again welcome and a painfree weekend and sleep filled night are wished your way ♡♡ :-) :-) xx look forward to chatting to you xx

  • Hey star girl. Thanks for a reply. I've had these symptoms a couple of years ago before I knew what I had but it seems to of come back with a vengeance with what feels like painful goosebumps now. Nothing is helping me but I suppose I have to live with these symptoms and others that fybro will give me. Anyway thanks again. Hope you have a good weekend ☺️

  • Dont ever be afraid to ask questions there will always be some one who will probably ne able to help as you say you are new to all this and it can be very daunting do never be afraid to ask :-) xx

  • Just to say welcome to th forum. Have you had chance to look at the Fibromyalgia Action UK site as it has wealth of information.

    How long have you been on. Pregablin as it several weeks for it to start to have its full effect. Even with meds unfortunately the symptoms break through them for most of us. Cold feet that are hit to the ouch and strange skin sensations unfortunately are quite common with fibro. Look forward to your future posts.😄

  • Hi Ditsydory and welcome to the site, im sure you will love it, like we all do ☺ Irs all to familiar story with Fibro to be misdiagnosed. What strength and how many Pregablin are you taking ? Do you take anything else.

    Amitriptyline are very good and help with the pain, sleep, muscle spasms. Quite a lot of us take them.

    You have to give them a bit of Time to work but i thought the pain releif was pretty instant but maybe im wrong.

    They May not be any good for you, there is other meds they can give you if they don't work

    Hope you had a better night tonight

    Peace, luv n light

    Jan x

  • Hey sorry for late reply. I'm on 100mg a day but nothing is working right now and I'm on co codamol 30/500. Nothing is working esp when I'm stressed like I am at the moment. Joint pain and goosebumps and pins and needles all over its a nightmare but I'm trying to get along with it. All my doctor is saying I got to wait for physio. My depression is getting worse though which I can't cope with right now

    Sorry hope your ok though

  • That's ok my friend, I'm not always quick at replying, so don't worry..hmm 100mg is quite a low dose, I take 300 & i think you can take up to 600 (don't quote me on that though).

    I don't think any of the pain killers take all the pain away, they just take the edge off it all tbh..The sensations you are experiencing sound very much like nerves,

    Do you take an antidepressant ? These are very good for relaxing twitching painful spasms & help with the depression.

    Co codamol can cause itching & tingling sensations, I would keep an eye on this because a lot of people can't take them & take tramadol instead.

    Just a thought. I hope you are feeling better today.

    Luv Jan x

  • Hey Hunny. Yh I'm on anti depressants called lofepramine I'm on 140mg a day but don't think they are working, I'm feeling more down than ever and I've been to a see some mental health team but they just want me to sit in front of a projector for two hours which doesn't help me cause I just get bored sat there. I'm feeling really rough today tbh got joint pain and hands are burning still and dizzy spells galore and shakes plus I'm not eating well either so that don't help and I'm feeling really tired too. I'm going to try get into the doctors tomorrow to sort it out, that's if they sort it out.

    Anyway hope you have had a good weekend

    Luv Dawn x

  • Oh I am sorry Dawn, yes you really need to see a doctor tomorrow & hopefully you will get some help, let us know how it goes honey ☺☺☺

    Luv Jan x

  • Yh I will do thanks Hun xx

  • Hi ditsydory👋

  • Hi ditsydory 👋 I too am new to this and I know like everyone else on this site that the pain is enough to drive us mad...I'm just over the moon that I wasn't diagnosed as crazy and a relief that it isn't a figment of my imagination 😉

  • Yh I understand that I always thought that people was thinking I was lying about my pains and illnesses but I'm just glad they found it.

    Hope your ok btw

  • The future seems better because finally myself like you. ..will have medication to help ey!? Ouchy hugs x trayc

  • Hi Ditsydory

    Welcome to the forum and it is wonderful to make your acquaintance. I have pasted you a link below to our mother site, FMA UK which hosts loads of useful Fibro information:

    I am so genuinely sorry to read of how you are suffering and struggling and I want to sincerely wish you all the best of luck. Please remember that if your symptoms persist or get any worse then please talk to your doctor just to have other medical conditions ruled out of the equation.

    All my hopes and dreams for you


  • Thank you for the link

  • :)

  • I noticed your comment about itching and uncomfortable with clothing touching your skin. When I was first diagnosed the Dr put me on Gabapentin and those symptoms became unbearable. I was changed to Lyrica and those symptoms went away. Keep talking with your Dr until you find what works for you. There are several different medications available. Evrryone responds differently, so don't be discouraged.

  • I'm hoping to go to the doctors tomorrow. The burning sensation and joint pain is unbearable today my hands feel stiff today and been feeling really tired tooth is weekend. I'm on Pregabalin for the pain but it doesn't feel like it's doing anything tbh and the codeine I'm on doesn't touch anything. The only thing the doctor has said is to go to physio for my fybro they don't seem to do anything else for me

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