New to this !!!!! And scared

I am scared to death with all this that's going on, my doctor has said he is sending me to see a reumatalogist thingy, as he says he thinks I have fibro all the symptoms I have read and the medication I am on is like reading a book on me .... The pain is unbearable and put me in hospital as my ribs were inflamed but the doctor I saw who actually sent me there thought I had a blood clot on mymlung has had five T I A s .... I have been reading all your blogs and thought i would pluck up the courage to do this as ia have lost my esa and got to go to anotherntribunal and sort it all out aginn as this will be the second time but don't know where to start as my brain n memory is shite . I have chronic headaches and neck n shoulders go into spasms which is awful which you all properly know, i got vitamin d defincey now to just to add on and rashes on hip hand leg n toe just to keep me going to bloody stuff, I feel i am spiralling downwards n for me kids sake got to get myself back up again but it's hard, sorry for spellings and if I am rambling and vg u crack me up!!!! Xxx

8 Replies

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  • first of all welcome to the forum, great place for advice to rant to be scared and ask for help and to have fun. You are with people who understand

    I read your blog and thought how can I answer this and then I saw my name at the very end.... That in itself should give you hope .....Yes fibro is very scary very painful but we can have a life with it..... Not most likely the one we imagined or hoped for but still one with fun, friendship and family.

    The rheumatologist is usually the first person you get sent to, I have worn out 3 , they usually rule out things like rhematoid arthritis and other things but I can't remember .., fibro fog.. Takes your words away regularly ... My favourite word for most things is wotsit... My poor family then take turns to guess....

    I am not qualified but the pain in your ribs bad enough to hospitalise you with symptoms like blood clots or even a heart attack sounds like chosochondritis , the first thing I developed with fibro, basically the ligaments that attach your ribs to your body front and back become inflamed.. The more you breathe the more they have to move and the more they hurt... I,m afraid painkillers and no bra tend to be the best answer there , very undignified but hey if it works....

    I also have the neck and shoulder spasms that cause headaches my GP referred me to my local pain clinic and they give me injections in my neck and shoulders every 3 months slightly uncomfortable for a day then for me no headaches... Gone from 3 days every week in bed with the pain to twice in the last year....

    Now I am rambling on ..... :) But if you want to chat anytime .. Click on my fish piccy and send me a message

    Hugs VG x

  • Hi Marcia

    I am sorry you are going through all this, but welcome to our forum. As you will a have already realised you can find information, support and insanity here!

    It's positive that you are getting a referral to a rheumatologist. Hopefully they will be ale to give you a clear diagnosis which is the first step to getting treatment.

    Try and make a list of all your symptom, before the appointment, so that you can make the sure the consultant is aware of everything that is bothering you.

    Also, try phoning or visiting your local CAB office, who will be able to help you with your benefits.

    I know it's hard at the moment, but make sure you are getting support, and things will get better in time.

    Take care

    Kaz

    x

  • Hello and welcome to our lovely forum Marcia, you are most welcome here!

    Take a look around our Questions, Blogs and Tags, there is a wealth of information there, advice, support, personal experiences and friendship too! Please read our FibroAction Guidelines, you will find these under Blogs at the top, please select FibroAction Blogs and then scroll down. We ask all our new members to read these, many thanks.

    There is also lots of info on our main site at FibroAction, please click on the link below to take you there -

    fibroaction.org/Pages/A...

    If you have any worries or concerns, please do not hesitate to ask us, we are always only too happy to help. We all understand, we are all in the same boat here.

    If you would like us to send you the Benefits and Work info sheets on ESA and DLA, we can send you these for free if you email us on info@fibroaction.org. They contain lots of helpful information on completing forms, assessments and appeals.

    I am sorry to hear about how you are feeling at the moment, please be assured that we will do all we can to help and support you along the way.

    I hope you enjoy your time at FibroAction! :)

    Libs

  • Thanks for replying,I will be going to see the c a b people as soon as I can as it's a joke how these people can treat people they lied in mine by saying I can make my own breakfast and I don't even eat breakie! She even said to me your heart beat is very fast as I said to her maybe cos I ave anxiety and being here is killin me and she put I didnt have any anxiety issues but she agreed with me that I had. The ribs are a nightmare at the moment and defo no bra lol glad I don't have a other alf but do have kids that help bless their cotton socks and as they I am a stubborn b..t h as I don't ask for help as I try to do it myself which ain't working as I forget when I am cooking or whT I am cooking but I do say to them charcoal is very good for you, so my 15yr old daughter does a lot of the cooking now.... But hopefully I will get to see ts rhumo person soon as i can't cope with this pain I want to cry which ain't me I don't do crying or maybe should I don't know..... And will have to write that down vg and glue it somewhere to say to my gp that word u said that began with c ....and will write everything down now as I will only forget when I get there....and hopefully dont forget where I write it down cos thts me....... I have read quite a bit on ere that helps me and to help my kiddie winkles to understand as it's hard on them, as well as me for understanding whT and y umu can't get out of the bed or have to help get out of the chair ot start shaking me left leg as the pain goes through my shin and then goes numb....but thanks for listening xxxx

  • Believe it or not Marcia people with fibro cry more easily.... Sorry yet another symptom, but you will get through this ....write everything down I have lists everywhere... Hope to see you making yourself comfy on here

    VG x

  • Welcome my lovely! Looking back I've had this condition for a fair long while now but it was a routine trip to my Rheumatologist for my autoimmune arthritis that got me diagnosed two months ago and for the first three weeks I was in a head spin and very down but soon got things into perspective. I saw the pain consultant within two weeks and he changed my meds and referred me to the pain clinic physio, acupuncture, hydrotherapy and CBT for fibro pain management with the pain clinic psychologist. I now feel there is a light at the end of the tunnel. Push for all the referrals you need and start telling trusted people. Once I started telling certain people, the support was amazing and I now know, when I feel like i'm getting on my family's nerves, I have certain friends I can turn to. You'll get through this my lovely and good luck with the Rheumatologist XXX

  • Hi Marcia I'd also like to welcome you to the forum , I've only just found this site myself even though I've had fibro for 13yrs!!!!! I've had to give up work and went through the mill trying to get diagnosed then getting long term sick which with this new system they are now saying I can work in two yrs time ???? Needless to say I'm appealing I know I can't ever work again

    I would love to but I'm not able to ! So please try not to worry get to a rheumy and get it official then ask Togo on a chronic pain management coarse I found it really helpful it made me realise that even though I'm ill I'm not dead yet !!!!! I'm now able to pace myself and live a better life I choose my battles and not worry about things or people I can't change !!!

    I'm able to say no , some people can't or won't understand but others bring love into your life there's such a complex amount of symptoms with fibromyalgia so knowledge is good to make you understand your not going mad !!!! But with knowledge comes an amount of sadness when you realise your liabilities ! Take it one step at a time and use this site to gain control of life wishing you all the best x. Welcome to the pain gang !!!!!!!!

  • Thanks hunnys,makes me that I am not as mad as I feel and very overwhelmed and can't wait to see if I can get further help xxx

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