upset and need your help

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jilly
jilly Member Posts: 503
edited 21. Jan 2011, 04:22 in Living with Arthritis archive
Hi everyone i have been to the hospital today, they think i have sjogrens sydrome and raynards and fibromyalgia. I am shocked but i have known for 18months something was going on more than my OA . He gave me a leaflet to read and i have all the symptoms . I am pleased that i have an answer to why i have been so ill and strange things happening to me .
If anyone can give me any advise as to how it affects them i would be grateful.
I had you all in my pocket today but you didnt do much to help with the blood tests , I felt like tony was chasing me with the needles lol. it took 3 of them to get my blood , i did all the things you all advised me to , they almost gave up and used the butterfly but a small needle worked in the end. ..........jilly

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  • tjt6768
    tjt6768 Member Posts: 12,170
    edited 30. Nov -1, 00:00
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    at least now you know for sure what is going on... And I would have had the test for ya.... Me and needles are old friends, no, I'm not a junkie, lol... Just a sicko :shock: :lol:

    Hope that you are ok tonight...

    :grin:
    e050.gifMe-Tony
    n035.gifRa-1996 -2013 RIP...
    k040.gif
    Cleo - 1996 to 2011. RIP
  • traluvie
    traluvie Member Posts: 2,579
    edited 30. Nov -1, 00:00
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    Hi Jilly..

    I did post but it's dissapeared// :oops: :???: :???:

    Just wanted to wish you well, an altthough it was bad news, hopefully you can start right treatment to make you feel bit better..

    Take care
    Tracy..xxxx
    th_tn_TisFORTIGGER.jpgxxTracyxx
  • jilly
    jilly Member Posts: 503
    edited 30. Nov -1, 00:00
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    Hi Tony and Tracy , thanks as you say Tony at least i know whats going on . I need to make some life style changes , I need to stop fighting it and except i can't do what i could 3 years ago . i miss working but i will never be able to go back to that , i worked with my husband as a welder . I havent the energy to do the house work now. I am hoping it gets a bit easier now because i can understand whats going on in my body. ................jilly
  • tjt6768
    tjt6768 Member Posts: 12,170
    edited 30. Nov -1, 00:00
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    It's not an easy step to take Jilly but one most of us will have to at some point.... At least you know you have support on here eh?
    :grin:
    e050.gifMe-Tony
    n035.gifRa-1996 -2013 RIP...
    k040.gif
    Cleo - 1996 to 2011. RIP
  • minky67
    minky67 Member Posts: 2,328
    edited 30. Nov -1, 00:00
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    Hi jilly,Im sorry that you have been dx with these conditions. I was like you & took well over 2 years to get the Fibro dx. I was dx with OA first.
    I cant help with the other 2 conditions but i can with the Fibro.
    You will need to pace yourself,just set a small goal each day for what you can manage. when your tired rest, dont try to overdo things as you will pay for it. Dont beat youself up for what you cant do concerntrate on what you can do.
    Hot baths & showers will help reduce the pain & stiffness especialy in the mornings to help you get going. Soaking Hands & feet in hot water will also help.
    Hot water bottles,heat pads & heat rubs (deep heat)
    Exercise is also recommended for fibro but a physiotherapist is best to ask about this.
    Relaxation can be taught through groups or from tapes etc.
    Medication, I take pregabalins (For nerve pain) Tramadols & slow release tramadols, diclofenacs (anti inflammatory) Amptripyline (muscle relaxation to help sleep)& oramorph for the really bad pain.But of course we are all different & you may be on different meds already.
    The main problems for me are the pain,fatigue & sleep problems. I also get flu like symptoms,cold sores,styes when im run down & that quite regular.
    I have made quite a few changes to how i do things at home, equipment i.e rails, bathlift,perching stool, bed lever, wheelchair & crutches.Most of this has come through OT at hospital.
    I have also purchased extra hings for the kitchen, electric tin opener, jar opener, Hot cup (like a kettle but makes one cup at a time) Food processer & dishwasher.
    I have gone on a bit there havent i :shock: But if theres anything there i can help you with please ask or PM me.
    Take care, debs
  • skezier
    skezier Member Posts: 11,333
    edited 30. Nov -1, 00:00
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    Hi Jilly,

    that's a lot to take in in one hit flower. Give your self a bit of time to come to terms with it.

    I definitely got raynaud's as a secondary to its cousin.... depending on how badly its effecting you there are drugs to help. The most effective is iloprost.... its not always very nice but hell it helps. If it can do the cousin it can certainly do raynaud's. Like being filled up with rocket fuel actually.

    Prior to that i have some pink ones, I can't remember the name but the drip I have had for the last 10 years and it really does help.

    The fibro.... I might have it..... The rumo started telling me about another condition I had and I said if it was fibro could we leave it un-named and he said let's talk about your feet then...

    Pregabalin works well in conjunction with tramadol.

    Jilly its horrible to get a triple thump in one hit but hang in there cus your going to be ok. ((( ))) Cris xx
  • jilly
    jilly Member Posts: 503
    edited 30. Nov -1, 00:00
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    Thanks chis and debs , for the advise it is very helpful. I have had 3 years or more of horrible health problems, At least i can put a name to it. I am going to see a ENT specialist in febuary , i hope he agrees with the other doctor , i dont want anymore added .
    I need to sort a few things out in the house , i have to have a shower but it is in the bath so getting in is really hard .I am seeing a OT perhaps she can help. again thanks for the support it is so good to have other people to talk to. it makes so much easier...........jilly x
  • minky67
    minky67 Member Posts: 2,328
    edited 30. Nov -1, 00:00
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    Hi Jilly,I would write down all the prblems your having around the house ready for the OT appointment.
    They can help with certain things,i got the bathlift & perching stool through them & the rest from social services. I was refered to them through OT to, they so good.
    Im now waiting to hear about a disabled facitlies grant for a stairlift.

    Right i must go to bed now as i will be up & down all night then come time to get up i'll be fast sleep til dinner time :roll:
    debs
  • skezier
    skezier Member Posts: 11,333
    edited 30. Nov -1, 00:00
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    Hi Jilly,

    Flower when I was hit with the forth condition a friend of mine said ' nothing has changed and you have coped so far' its kinda true.

    I know it doesn't feel like it but the only thing that has changed is you have a name for them... hey i got some names for mine actually :wink:

    As debs says write down the things you have trouble with though I think they are quite good at noticing as well. It should really help you.

    I don't know what drugs they have given you but I promise you pregabalin (though it can mess with your head to begin with) and tramadol are very good for 'possible fibro' as well as oa.

    Keep sight of the fact the only thing that's changed is its all been named and also Jilly maybe now you will get some real help! ((( ))) Cris x
  • jilly
    jilly Member Posts: 503
    edited 30. Nov -1, 00:00
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    Thanks Debs , I wondered about a stair lift ,i have 2 handrails at the moment but it is getting harder and harder to get up.
    You sound like you have the same problem sleeping , up at this time is usual for me. ...jilly x
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Sorry jilly, I have only just spotted this, I'm not having a good day, one way and another. That is a lot to take on board, yes? but at least you now know that there are definite reasons for what has been happening to you: I do think that being able to give a condition a name does help one to fight it better, somehow - it must be a case of 'know thine enemy'! Give yourself time to comprehend this news, be kind to yourself, find out what you can - the helpline here may well have some info they can recommend/send you. I sincerely hope that despite the distress of the news, there may be a little comfort in the fact that all you have been feeling IS valid and NOT in your imagination - 'cos, let's face it, sometimes we all wonder about that, don't we? Take care. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • seamonkey
    seamonkey Member Posts: 323
    edited 30. Nov -1, 00:00
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    Hi Jilly,
    Im sorry youve had bad news and i hope you get some relief soon.
    I just wanted to say that the OTs have been absolutely wonderfull with me. Anything your having problems with the likely hood is someone else has had it too and a device etc has been made. Some of the things are so simple but work wonders.
    Take all the help you can from them, thats what theyre there for.
    take care and best wishes,
    seamonkey
  • jilly
    jilly Member Posts: 503
    edited 30. Nov -1, 00:00
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    thanks DD and seamonkey . I have been reading up on it the last couple of days , i cant believe they havent thought i had this 2 years ago , i lost my voice 3 years ago and saw a ENT he just xrayed it and said its not that joint , its just arthritis . since then i have gone down hill .
    DD you are so right about thinking it is all your head . I feel much better now i have a name for feeling like death. again thanks for your help and advise . hope you feel a litter better DD you are having a bad time at the moment , it just goes on and on does'nt it . .............jilly
  • julie47
    julie47 Member Posts: 6,041
    edited 30. Nov -1, 00:00
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    jilly just sending you some hugs (((((((()))))
    take care
    juliepf x
  • jilly
    jilly Member Posts: 503
    edited 30. Nov -1, 00:00
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    thanks juliepf i am in need of them at the moment , just need to get my head around it. .................jilly
  • chris7
    chris7 Bots Posts: 2,696
    edited 30. Nov -1, 00:00
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    Hi Jilly

    Just seen you on line and felt I needed to send a hug after reading this. Such a horrible shock to get your head round but I hope you get the help and support you need. Hang in there and keep in touch. ((( )))
    Chris
  • jilly
    jilly Member Posts: 503
    edited 30. Nov -1, 00:00
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    Thanks chris I need them at the moment , I am getting help from you all it really nice. This forum is the best place to be , doctors dont talk to people they just tell you and thats it. Its a good job i had found this site, they should give the site address out with the diagnosis . ....jilly