Hello I am new

Discussion in 'Fibromyalgia Main Forum' started by redchud, Feb 3, 2006.

  1. redchud

    redchud New Member

    Hi to all
    I have been reading some of the messages you have posted,
    Only now have i had the time to write this is a little about myself and my family,we live in Swansea wales UK I have 3 boys 15, 13 and 7 i have a partner of nearly 3 years and we are getting married on 7th July this year, we have had many problems, when i met my new partner 3 weeks later we were both assaulted my partner left with brain injury, myself with back problems amongest many other illnesses, I first thought i had SS went to see the rheumy and she looked and my list of problems did eye test touched tender points,and said you don't have SS you have FM gave me a leaflet and said i don't need to see you again, I have had to find OUT everything from the INTERNET.
    I was put on 2 waiting list to see two separate rhumys I have received the other apt for Thursday next week I am hoping that i will get a better response from this rheumy, is there any questions I should be asking the rheumy as i have very little experience, thanks for listening to me and thanks in advance for anyone one replying to my post.
    Best wishes and warm hugs to you all
  2. Rosiebud

    Rosiebud New Member

    I'm glad you found this board, you will get lots of info and support here.

    I'm so sorry to hear of you and your partners problems.

    I'm up in Scotland, have CFS and Fibro. I'm sorry to say that I havent had a great deal of help from any doctors. My doc is sympathetic and he gives me excellent pain control and a prescription for B12 injections that my husband gives me on a daily basis.

    Unfortunately we are not given the multitude of tests and help that our American friends here are given. On the other hand they have to have insurance and we dont.

    You should be looking at the benefits that are open to you, depending on how incapacitated you are.

    I dont know what questions you should ask your rheumy, my doc refused to send me to one.

    But someone here will tell you.

    love
    Rosie

  3. redchud

    redchud New Member

    Hi Rose
    Thanks for your fast reply

    My pain dose not seam so bad as some of the group on here my pain is my lower back my knees my arms they throb deep ache nothing gets rid of it my shoulders get really painful, I get tired easily concentration brain fog all the time i write everything down other wise i forget.
    I get terrible migraines i cant move have to sleep.
    I get long term IB and low rate DLA but I think I should get high rate mobility as some days my hips feel like they are going to pop out and i cant walk with out my walking stick my kids laugh at me but i do need it, my son is on high rate mobility for problems with his feet he had operation on both feet last August, they have just sent me the renewal form he only had DLA for a year so have another fight on my hands with that, took for ever last time.
    Thanks for letting me rant on
    Take care
    Love
    red[This Message was Edited on 02/04/2006]
  4. Rosiebud

    Rosiebud New Member

    I'm sorry your son has such problems with his feet.

    DLA, I've always had to appeal except for last year but they only gave me it for two years, I had it for 4 years and 5 years before that. They are obviously clamping down.

    My old GP told me that 80% of applicants are automatically turned down in the hope that they wont bother appealing.

    Let us know how your visit with the rheumy goes.

    love
    Rosie
    [This Message was Edited on 02/04/2006]
  5. Fudge43

    Fudge43 New Member

    I am Canadian EH ! .. I try to be a little "light" on here , but it doesn't always work .. warped sense of humor ?
    I have an excellent GP but even she admits it is good to keep in contact with a specialist rheumy .. BECAUSE .. they are more knowledgable in new medications that are available for FM ..our GPs don't have the time to investigate new meds or techniques to make us more comfortable .. this is a rhuemy's specialty ..
    BUT .. I will be honest about my experience .. when I was first diagnosed I was in a state of confusion and stress ..I could NOT collect my thoughts to ask the right questions for me.

    Now a few years later I am seeing the specialist again and I have so much more knowledge about how I feel .. about the flares .. about the lack of restorative sleep .. in other words I know much more about what my body goes through to be able to EXPLAIN it far better than when I first went. I needed time to feel what was happening !

    Try not to go on information overload when you see the doctor .. it will overwhelm you .. write down specific points that you need help with FIRST .. fine tuning comes later .. ask about what you are really concerned with initially .. it takes time to try meds out .. to try different things that help YOU .. everyone is so different.

    I wish you the best of luck and hope that you get good pain management !
    Fudge : )
  6. Sheila1366

    Sheila1366 New Member

    When yo do see your reheumy. make sure they check all the pressure points for FM.He/she needs a very good medical background so check with relatives about any unknown disese there maybe.Be completely honest on hwo you really feel.Don't hold back.Let them know how it is effecting your lifestyle or work.You will need to get some bloodowrk done to check for some other diasese that mimic FM like RA and Lupus.If they try and tell you it is all in you head and you are just depressed get angry and let them know that your pain has nothing to do with your emotions other than it makes you mad that you hurt all the time.SOme dr.'s will get you to take an antidepressant anf for some of us it has helped.It might help to bring your partner with you so you can have 2 sets of ears listening and he may also have some questions for the dr. that you may not have thought of.

    Most importantly....you are your only caretaker.Fight for your wellbeing and don't let the dr. intimadate you.He is not above us so be out and out honest and don't take anything off from hom that you feel is stupid.

    Let us know how it goes,
    Sheila
  7. redchud

    redchud New Member

    Thanks to you all for replying and giving me your support and knowledge, also for sharing your experiences with me.
    my other half will be with me taking everything in i hope, all i have to do now is write some questions out to ask him on Thursday, one thing do you suffer from being cold all the time i am always cold.
    thanks again
    red
  8. Fudge43

    Fudge43 New Member

    The cold feeling sounds like a thyroid problem .. I have Hashimoto's .. hypothyroid .. you can be cold all the time when your thyroid is not functioning well .. make sure they check that as well !
    Good Luck !
    Fudge : )
  9. redchud

    redchud New Member

    Thanks Fudge

    I have had half my thyroid removed i had large nodules on it. It was removed year after my last son was born (1999)
    But will get it checked again, i had a blood test done 4 weeks ago and it came back OK that was with my own GP.

    Thanks again
    Red
  10. ritatheresa

    ritatheresa New Member

    Just wanted to say hi.

    These boards have been a godsend for me, hope you have the same experience, take care, Ritatheresa
  11. pemaw54

    pemaw54 New Member

    My advice is do not be too cheerful when you go. I made that mistake with my first rhumy. They should do lots of blood work the first time and usually everytime you go. I have wonderful drs here in Tennessee, It took 3 to find the charm, They should do all of the pressure pts. Write down every symtom you have even if you dont think it has any thing to do with FM.ex. fatigue, pain and where, do you get dizzy? do you have brain fog, depression. when I first got symstems, I was first sent to orthopedic where they ran lots of xrays. He was the 1st to say Fibromyalgia. Then my GP sent me on to Rheumy. Good luck. Let us know how it goes

    Suzette
  12. redchud

    redchud New Member

    Thanks for the welcome
    been watching the rugby wales just lost to england... :(
  13. redchud

    redchud New Member

    Hi Suzette
    Thanks for you advice will take everything you have said on board. last time i took a list of problems i have got she just looked at it... as if to say hypo aaaaaaahhhhhhhhh it makes you mad.
    Thanks again

    Take care of yourself
    Red
  14. redchud

    redchud New Member

    Hi Amanda

    Nice to meet you I am so glad i found this site you are all very friendly

    Hope you are well

    Take care

    Red
  15. MamaR

    MamaR New Member

    Just wanted to welcome you here.

    Hope you will find this site helpful as I have.

    There are so many caring people!

    Mari
  16. redchud

    redchud New Member

    Yes very caring

    Thanks for the welcome

    Hope you are well

    Take care
    Red
  17. 1horse

    1horse New Member

    glad you found us... this is really a good group of people.. lot of information to be had.. anyway welcome to the board ~hugs~ peggy
  18. Anitamj

    Anitamj New Member

    Hi, I'm from Canada too eh!! Good luck to you and don't give up hope. I've been still getting the runaround from several rheumys here but I'm trying to keep my head up.

  19. redchud

    redchud New Member

    Hello Peggy

    Thanks

    Take care

    best wishes

    Red
  20. redchud

    redchud New Member

    Hi Anitamj

    I will keep fighting thanks for taking the time to welcome me

    Take Care

    Red