Finally starting to get some answers !

Well have had letter from rhummie ,telling me and GP's that I have undifferentiated conective tissue deaseas ,sjorgrens , fibro etc so now have more reading to do , he doesn't know about last weekends issues with my bowel problems ,so at least we are starting to get somewhere ,but I think my fibro is what gives me most of my problems my shoulders and neck are playing up today do you ever get the feeling that your body doesn't want you to forget it's there it's like it get jealous if you pay attention to one bit then another bits starts shouting for attention x

21 Replies

  • Hi Shadows-walker :)

    I'm pleased that you are finally getting some answers and I'm sure you'll get answers for your bowel issues soon too :)

    I love your description about your body being in conflict as if parts of it get jealous and yes when put that way it does all the time. I never know each morning what part of me will be giving me problems until I wake up and then get onto my feet. The walk to bathroom first thing usually makes me aware of what I'm in for! LOL :D

    Fluffies and smiles for you

    :) xxxsianxxx :)

  • Thanks for your kind words sorry for late response, I have also decided my brain is also in conflict ,it wants to go at 100 miles an hour and expects my body to do the same but because it only goes at 1 ( I have decided this speed as scooter goes at 4 ) all the things in the que to be done have decided to have a punch up to get the front hence my headaches , yes and I think I am going to have to go back to GP about bowel as I don't think this can be ignored and put down to what I eat anymore thanks for support I plan to go to cinema this afternoon and be a child malificent is on with my soon to be 21 year old daughter take care Chris x

  • Have fun :)

    Let me know how the film goes?

    xxx sian

  • Well it was the best thing angelina has done for a children's film it was beautiful shot , very pretty , and I enjoyed it ,my synical picky daughter (This is her decryption of her self ) says it was alright but nothing special , she found it bland . We will proberly debate this all week , we hope to go how to train your dragon next week ,and if I go to matinee I won't fall asleep and it will only cost £5 I didn't realise I can get a concession I love going to the cinema I might start going on my own when she leaves in September . Chris x


    Sounds like fun :)

    There's a number of things we can get concessions for, the theatre too, footy matches...... urm they're off the top of my head! ehheheh

    If you go onto the website for your local council there should be a section for it which will let you know where you can get concessions and what prices are too :)

    Some places have deals as well.

    Happy hunting :)

    How to train your dragon? heehehhhehh I love films like that :)

    xxx sian

  • Thank you. Going hunting now...

  • Hi Sarah-Jane :)

    I got all confused then for a second and then chuckled when I realised what you were hunting for LOLOLOL

    I wonder if anyone has come up with the idea for a directory of places with disabled access and for those that do concessions for people with disabilities?

    Happy hunting :)

    xxx sian

  • That's I good idea ,I am going to start looking , perhaps we could start a list on here for people I like being useful x

  • Yes so do I :-) my daughter is off to japan in September ( if I have already mentioned this sorry I forget ) and she has at300 DVD s in to silver storage boxes I am going to have so many film to watch you name the film and chances are she has it loads of Disney Pixar dream works super heros , my friend Judith had a box room full of audio tapes and discs so if I can't sleep at night I always have something to listen to and something to watch in the day ,as far as concession are we suppose to show something or do I just wave a stick at them:-). Thank Chris

  • That one I don't know I'm afraid I think it may differ from place to place, waving your stick may work but it might get you thrown out ;) LOL

  • Hi Shadows-Walker

    I am delighted that you are finally getting some answers, but I am sorry to read that you have Sjorgrens. I do not know a great deal about it, but I want to wish you well with whatever treatments they give you for it.

    I know exactly what you mean about your body playing up! And it isn't very nice. I am struggling somewhat at the moment. I am back at the doctors tomorrow as I keep feeling weird (like chronic fatigue) and having headaches, and then I suffer with a bit of confusion, it is so distracting!

    Take care and good luck

    Ken x

  • Hi ken sorry your feeling rough , I know what you mean it's not nice .You are sound like your getting U V sensitive my daughter has put up my gazebo so I get some shade outside we are going to leave it up till she leaves in September. It has made a difference I was able to sit and pot up some seedlings on Sunday , but back on subject I get confused and forget what I am doing or mix up my words ,my ex husband used to tell everyone I had a mind like a bear trap I remembered everything my long term memory is very good ,but my short term is awrful I start to do or look for things something and I can forget what I was doing ,or I forget what I am saying also I have to refer back to posts paragraphs at a time so I can answer properly ,or I miss out words ,do you have other conditions besides fibro ? I hope you feel better soon good luck with the doctor tomorrow it might be worth getting them to do some blood test just to make sure nothing else is going on take try and get some rest Chris x

  • Hi Shadows-walker

    I think you have summed up exactly what and how I feel. My long term memory is fine but short term it simply disappears and the confusion sets in. I have had a load of blood / urine tests for it, but not had any results yet. It very well could be UV sensitivity? I also have brittle asthma, COPD and arthritis. Mind you, every-time I go to the doctors or the hospital they find something else wrong with me!

    Thank you so much for your your kind consideration, I genuinely appreciate it.

    Take care

    Ken x

  • Hope you get some answers today , let me know how you get on

    Chris. x

  • Hi thanks for that. I saw the doctor and had some more blood tests so I have to wait and see what they say. I feel a bit better today, I am more my usual self, but as soon as I get fatigued the confusion will come back, so I hope the blood tests have an answer. She also gave me some more steroids, they always help give me a lift!

    Take care

    Ken x

  • Glad they look after you properly x

  • I have stomach and bowel trouble all the time, it's just part of the wonderful world of fibro. You should get a colonoscopy though to be sure. I just had one Monday with the scope down the throat also. They found 2 polyps, and some kind of fungus in my esophagus? I feel terrible but waiting on results. Plus they busted my top lip almost all the way across. The roof of my mouth is sore to. Hope you get some answers as the waiting is a pain in and of itself. xxxx Mitzi

  • Thank you sorry took so long to repond been a bit up and down this week , trying to answer everybody this morning ,do you find you get really bad head before your bowel starts ? And you get a bit of a temperature also funnie little lumps that go up and Down at the back of your throat depending on how you feel I told the rhummie he said they were nothing he could see at the back of my throat I am thinking I should mention them to GP ? Thanks for your kind words Chris x

  • Sweetheart, you really should get the scopes, sounds like you have more going on than the fibro. Don't let it slide, go get it checked out asap. Let me know how it goes!!! xxxx Mitzi

  • At least you have your sense of humour!

  • You have to, always smile they will walk away wondering why it keeps them guessing x x

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