Carly from Manchester - quick intro

CarlyF
CarlyF Member Posts: 76
edited 7. Feb 2011, 15:26 in Say Hello Archive
Hi all,

After already meeting a few people from an eariler post who have had (are having) similar experiences then me. I thought I'd post here give a little intro and i'd love to chit chat with other people who feel their experiences are similar. OFC anyone can feel free to chat, i love to chat!

Me:
30 yo (well i'm 30 on 2nd March, but I've already accepted it!), live in Manchester with my Fiance, who I met online 6 years ago! My family all live in Newcastle so its just us around here. I'm a systems accountant.. which makes me a boring geek.. again already accepted this!

The arthritis
Firstly - my Aunt was diagnosed in her 20's with RA, which I constantly pointed out to any doctors I saw.

Aching hands/feet actually started in my late teens... by early-20's my mum was insistant of me having the doctors check for RA because of my aunt. Blood tests come back negative so they said nothing was wrong. So things carried on as they were, but a little ach on my hands/feet really didn't bug me too much if im honest.

From 26 ish I started complaining more about the aches, so off to docs again, and again bloodtests all negative so nothing wrong.

Around 27, I had an awful year - 25 sick days from work, constantly battling with the doctor about it not being 'all in my head'. Doctors advised me to do more exercise which I did - gentle walks around the block etc every night... after a few days I was off work a week in pain. Crunch time came, and the doc insisted on refering me to a shrink... and I said i'd be happy to go see a shrink if you first refer me to a rheumatologist.. which im so pleased he did.

Jan 2009 - Rheumy visit (was in Northumberland/Alnwick, can't remember the name of my Doc, but he was young(ish) and very very good with me). Told him my symptons, and aches since a teenager, i'll list some just so others can relate.

1. Exteremly hot skin most nights - I'd have windows open (even mid-winter), no blankets, and the fiance would cover my back in lotion and still the hot skin wouldn't let me rest.
2. Migraines - at least 1 day off work a month due to buring pain in my head
3. Hands / Feet aching and being constantly hot more so at night.
4. Tight, aching muscles, stiffness when still for too long.
5. Flares of pain in various places including knees, hips, lower back, neck.

He took bloods and waited for xrays, saw me again str8 after xrays and from that diagnosed me with mild inflamatory arthritis. I had some signs of wear on my wrists, and my feet had bunions, he said i had lost some movement of my shoulders and he prescribed me 400mg hydroxi - the wonder drug! After 3 months I went down to 200mg a day, and now I use when needed diclofenac. He also sent me to a foot doctor and I got insoles which really really help with some of the foot pain, i can't walk now without them.

Its been 15 months now, and I know I'm worse so I'm trying to control what I can - A gluten free diet has helped, but its hard to refuse cookies and muffins when your depressed! I've also started swimming, but i haven't found that balance yet as i do self-induce a flare. And i decided to 'baseline' myself so that when people ask me how I am... if its a norml achy day.. i am no longer as negative about stuff and tell them 'i'm great! And you?' I'm taking 1 day at a time... :)

Would be great to hear from anyone else... I am much a fan of online chat.. my life has been based online for over 10 years, now i'm just moving from online gaming, to online support groups for arthritis!

Comments

  • Rashine
    Rashine Member Posts: 33
    edited 30. Nov -1, 00:00
    Hi,

    I've only just joined too, but I can sympathise. It took me 3yrs to get a proper diagnosis.
    And I've been lucky that after and initiall period of get my flare ups under control I'm pretty good most of the time. I started getting symptoms in my early twenties (although looking back some of the stuff I put down to stress in my late teens could have been RA), but after over 15yrs I haven't gone down hill too much thankfully.
    Attitude has a lot to do with how you feel, as you have already noticed.

    I certainly spend too much time online. Like now I should be writing a report!
  • CarlyF
    CarlyF Member Posts: 76
    edited 30. Nov -1, 00:00
    Yea yea and I am 'working from home' - but a little break from that can't hurt right? ;)

    Nice to meet you Rashine!
  • katie5
    katie5 Member Posts: 242
    edited 30. Nov -1, 00:00
    Hi Carly & Rashine

    I'm Katie and have osteoarthritis in ......well all over now! I started with OA when i was 21 and am now 40 (where does the time go) it took me 16 years for a diagnosis - I was told it was all in my head too - think everyone got a shock when i finally had x-rays etc and there was the proof!

    Hope you are feeling ok today.

    see you around :smile:
  • need me bed
    need me bed Member Posts: 103
    edited 30. Nov -1, 00:00
    CarlyF wrote:

    1. Exteremley hot skin most nights - I'd have windows open (even mid-winter), no blankets, and the fiancé would cover my back in lotion and still the hot skin wouldn't let me rest.
    2. Migraines - at least 1 day off work a month due to burning pain in my head
    3. Hands / Feet aching and being constantly hot more so at night.
    4. Tight, aching muscles, stiffness when still for too long.
    5. Flares of pain in various places including knees, hips, lower back, neck.



    γειά (thats Greek) Carly and Rashine,


    Hope you are both well (ish) today I mean how ok is ok when you suffer with Arthur?? I count a well day as fairly low pain levels (its usually pretty constant) good mood etc, I'm not too bad today lots of pain but that seems to be the 'norm' with me at the mo

    I totally get how u feel with the numbers 1/2/4&5 Carly... I have the same problem, i'm guessing it's summat to do with the condition or the meds, some nights i get so hot it's like waking up in a swimming pool... I only have 9 tog duvet on too....

    I'm 40 (but think im about 25 in my head) and have suffered with this Arthur for a while, diagnosed 2006. Some days it really gets me down coz i used to be sooo independent and i can't even manage to open a pint of milk these days... gutted.... don't even get me started with them plastic 'rip off' lids .... 1 all well and good if you can actually grab somewhere to rip from... and 2 they don't rip off unless u want lots of little bits oh yeah and they give your your meds in bottles with a child proof lid which i can't open either.... aaarrrggghhhhh...lol :lol:

    i'm currently living in Middlesbrough but originally from the Portsmouth area. I'm being a fat [email protected]@rd todayand have ordered in a pizza coz i can't be arsed to cook!!

    Hope i see you both around

    Gentle hugs

    NMB

    xxxxx
    f055.gif

    There is no snooze button on a cat who wants breakfast.
  • CarlyF
    CarlyF Member Posts: 76
    edited 30. Nov -1, 00:00
    Bok! (thats croatian!)

    I love your nick! :) NMB!

    All those symptoms I had before starting any meds, the hydroxi stopped my migrains (i only get them now when i've fallen off the wagen and been so good at remembering to take my pills every night!) And the hot nights now are more occasional and probably also linked lately to my bad behaviour with the meds!

    Keep in touch!
  • need me bed
    need me bed Member Posts: 103
    edited 30. Nov -1, 00:00
    heilsa (icelandic)

    I think you've created a monster Carly :lol:

    Glad to hear things have improved since you diagnosis and treatment... wish i could get rid of these night sweats (have checked it's not 'the change') I hate them, it's almost at a point where im changing the sheets on a daily basis and its such a chore! Although i have just bough meself a whole new lot of bed linen, They have a sale on at sainsburys and their bedlinen is on offer so i thought why not!!! under £20 for a king size set, duvet, 2x pillow cases, cushion cover and bed runner.. dunno what im gonna do with the cushion cover or bed runner but hey ho, still cheaper than some i've seen and they feel like good quality too... :smile:

    I must admit im really bad at taking my tablets, I hate it, :x most days i have a combination of around 16 tablets and on the day i take the MTX it's 19... some days it's just too much effort trying to get them out of the packets fer heaven sake.... why do they put them in packs/bottles, you can't open coz you got arthur in ur hands... surely that defeats the object?? next rheumy appt not til April, so am writing a list of things i need to talk to him about otherwise i'll forget. I don't like the MTX it makes me so tired, (im currently working full time (40hrs) and am on the waiting list at work to go part time) and make me feel sicky fer 2 or 3 days after taking them... I hope someone can find a cure one day or even better pain relief would be a good start....

    Think i'm gonna watch a jason Statham movie and sit on the sofa drooling for an hour or so.

    Have a good day,
    Gentle hugs

    NMB XX

    I'm having a chill out day today in my jim jams, I'm not going anywhere so i thought 'why the hell not?'
    f055.gif

    There is no snooze button on a cat who wants breakfast.
  • suzygirl
    suzygirl Member Posts: 2,005
    edited 30. Nov -1, 00:00
    Hi Carly, I have inflammatory arthritis as well. I also have severe degenerative disk disease and cervical spondylosis. I take plaquenil as well, and am on steroids. I am hoping to start methotrexate in 2 weeks, as like you it is getting worse. I find it helps to talk to others online who understand what it is like living with arthur.

    Hope today is a good day for you!!!
  • charley3lou
    charley3lou Member Posts: 2
    edited 30. Nov -1, 00:00
    Hi everyone, i am new to this site..... I was diagnosed with Seronegative Spondyloaropathy and Billateral Sacrolitis about 18 months ago. I had been suffering with it for about 9 years before they gave it a name.

    I live in the High Peak, i am married with 3 children (13, 12 and 5), after my latest flare up which has lasted for 3 months now i thought i would start chatting to other sufferers. My husband is very attentive and caring, but to talk to other sufferers would be nice. :smile:
  • caterina57
    caterina57 Member Posts: 1,424
    edited 30. Nov -1, 00:00
    Hi charlie
    Welcome to our forum I hope that you enjoy it as much as I do. You will find that everyone is very supportive and helpful and good fun
    Cath
  • charley3lou
    charley3lou Member Posts: 2
    edited 30. Nov -1, 00:00
    Hi Cath, everyone around me is very supportive and loving. Even though they are i still feel alone in it. Reading the different posts on the forums i already feel great, it's not just me there are others.

    I am supposed to be writing an assignment for my OU course, but just needed a break. :smile:
  • tjt6768
    tjt6768 Member Posts: 12,170
    edited 30. Nov -1, 00:00
    Hi everyone, i am new to this site..... I was diagnosed with Seronegative Spondyloaropathy and Billateral Sacrolitis about 18 months ago. I had been suffering with it for about 9 years before they gave it a name.

    I live in the High Peak, i am married with 3 children (13, 12 and 5), after my latest flare up which has lasted for 3 months now i thought i would start chatting to other sufferers. My husband is very attentive and caring, but to talk to other sufferers would be nice. :smile:

    Hi Charley, welcome from me too.. Hope you are not suffering too much tonight...
    We are a friendly bunch on here and in form or another suffering a similar thing.. :roll:
    Be well hun

    :grin:
    e050.gifMe-Tony
    n035.gifRa-1996 -2013 RIP...
    k040.gif
    Cleo - 1996 to 2011. RIP