Hello, from Birmingham

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wends68
wends68 Member Posts: 5
edited 6. Apr 2016, 12:25 in Say Hello Archive
Hi all, I'm Wendy, up until approx 3 years ago i was what i thought was fine, i had chronic depression from an early age and epilepsy but it was only mild. every time i said owww that really hurt when i bumped myself i was constantly told "your such a drama queen". then 6 years ago i fell over (helped by captain rum i admit) at xmas and broke my upper arm bone my wrist on the other arm and dislocated my finger, after 7 months of leaving it to heal on its own as the drs thought that was best, i demanded to see a consultant and then refused to move out of his office until he agreed to operate and put a plate in . yayy me. i have almost no self confidence etc so for me this was a massive thing i had done. then at 45 i got a bit of a pain in my knee , which got so bad in the end i couldnt walk the dr said i had osteo arth in my knee and gave me co codamol. didnt work, this has gone on all through different pain meds at different strengths co codamol, co dydramol, tramadol, ibuprofen, naproxen. at one point i was getting up and taking 5 tablets for other things and 15 pain killers and i was still in so much pain i could hardly walk. so i was sent off for an mri on my knee which just confirmed i had osteo but not that bad it should be making me so bad. i had loads of blood taken. they tried to draw fluid off my knee which is quite swollen, but they couldnt get any off, im never letting them do that again . i also had 3 lots of steroid injections. the pain has spread slowly but remains centered around my knee mostly. my hips hurt my ankle hurts and it all seems to be down the right side. now they have decided i have some kind of inflammatory condition to go along with it all, but they cant make there minds up whether i have fibro, psoriatic arthritis, or maybe reactive arthritis. which are things that my brother and sister have and possibly my mom. while all this has been going on ive got water on my feet and ankles and ive put on loads of weight because i cant move. on one hand my dr tells me to exercise and in the same breath tells me i have to spend a few hours every day laying on my back with my feet in the air. at this point im so frustrated i cant put it into words. the last thing was my gp gave me a 10 day course of prednisone, omg i felt back to me of 5 years ago no pain no nothing. when i finished the course he put me on butrans 5mcg for 4 weeks the first week was great then it was back to the pain, i went back to the gp and now hes given me 2 weeks of butrans 10mcg patches to be followed by 2 weeks of 20mcg patches. right now im really down, he was really surprised the prednisone had worked at all, sometimes i feel like he doesnt want there to be anything wrong with me and im just a nuisense. my gp and the rheumo i saw are insistent i have to go to weight watchers or slimming world, i was over weight when all this started im now nearly 18 stone . things is i cant exercise because it hurts to much and i hardly eat anything anyway. i rarely eat sweets i eat lots of veg . im really frustrated writing all this down even.
thanks for listening. i didnt mean to write an essay lol . i just needed to get most of it off my chest . :|:D

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  • [Deleted User]
    [Deleted User] Posts: 3,635
    edited 30. Nov -1, 00:00
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    Hi wends68

    Welcome to the forum, you will find everyone friendly and willing to help. Have a look round all the forums then choose the ones you feel are best for you.

    Mod Bryn
  • Sapp50
    Sapp50 Member Posts: 22
    edited 30. Nov -1, 00:00
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    Welcome Wends68

    I bet you are glaad you got that off of your chest, sounds like you are really overwhelmed, I felt the same when I joined the forum some years ago.

    Don't worry you are among friends here so feel free to vent.

    Hope the Easter period is not too painful

    Sapp50
  • stickywicket
    stickywicket Member Posts: 27,719
    edited 30. Nov -1, 00:00
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    Well, you did get it off your chest and that's good. Well done! It can take an effort, can't it?

    I can understand your anger and frustration. The fact is, arthritis, of any kind, is a frustrating disease both to us and the docs. It's not always clear if we have it or what kind we have.

    You say your brother, sister and possibly your mother have fibro, PsA and ReA. (Presumably not all have all these.) There can certainly be a genetic element to autoimmune arthritis. Also there is a tendency for OA to set in at the site of a former injury.

    What exactly was the rheumatologist's decision, if any? Were you prescribed DMARDS. To be fair to your GP, he can only prescribe pain relief and antiinflammatories which he has done in rather large quantities.. Unfortunately, these and prednisolone bring their own troubles. Did you have water retention previously or is it caused by the meds? Arthritis equals pain. Alas, there's no getting away from it.

    Hard as it sounds, exercise is key whatever type of arthritis you have. It keeps muscles strong and supportive and so lessens pain. I have both RA and OA and have to do my exercises daily. Try clicking on the 'managing arthritis ' tab above. You might find some useful info. And keep talkingmto us as we do understand.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • wends68
    wends68 Member Posts: 5
    edited 30. Nov -1, 00:00
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    Thankyou so much for your support, to be honest i was expecting to read replies of your a right moaner lol . which is exactly how i feel and why i dont talk to people more. you know when you feel thats all you talk about ? the past few days ive been trying to do stretching exercises as i get out of bed and when i get back in again at night. i was asked if id had any injury to my knee and there hasnt been any at all i do keep wondering if its all something to do with when i fell though as before i was in pain but nothing along these lines. the rheumo said i was over weight and he wanted me to have an arthroscopy when i asked him he said if he had to make a decision hed say i had PsA . ive already seen a knee surgeon whos said i dont need a knee op. i can only do so much with my leg as i cant straighten it because i held it in one position so long to alleviate the pain its kind of stuck. the tendons etc have to be stretched back out . my sister has fibro and reactive arth and my brother has fibro and psoriatic arth. i had a tiny tiny bit of water retention before. Thankyou all so much again. human support is so important .
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    We never say that someone is a moaner, we all live under the arthritic cosh on here and there are times when it can all become very overwhelming. I have a creaky foot in both camps, I was eventually diagnosed as having PsA (but mostly without the skin element) and the joint damage that caused has led to OA in both ankles, both knees and my hips are beginning to join in. In total I have around forty affected joint and look back to the good old days of just the one with more than a degree of wonder. I began very nearly twenty years ago when I was 37.

    Exercise is important to help keep our muscles as strong and flexible as they can be so they better support the joints but it should be the right kind of exercise. I will later be forcing myself to go for a walk (once it's stopped raining) because I haven't been out of the house since Saturday and things are seizing up. Will it hurt? Yes. Will it help? Not much. Should I do it? An emphatic yes because if I don't I will only make things worse for myself and that is pointless. I will use my seated rollator because a nice sit-down is going to be absolutely necessary! :lol:

    I was born with auto-immune trouble so although the arthritis was a surprise it was entirely logical. Auto-immune troubles ran in both my parents' families but they dodged the bullets, instead they lodged in me. :wink:

    I don't talk much about my health or pain, when people tell me I'm looking well I always thank them. When they ask how I am I usually say I could be better but I'm pleased I'm not worse. There's nothing anyone can do to make things better but I can help myself a great deal by not being boring about it. My life has changed but so what? It wasn't that great to start with, in some ways I am lucky in that I have never had good health because I am sure that makes this malarkey far harder to accept and deal with for those who have. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 27,719
    edited 30. Nov -1, 00:00
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    We're here to help ome another so that's what we try to do.

    If your rheumatologist said you probably have PsA surely he prescribed a DMARD such as sulphasqlazime or methotrexate? If not, you really need to ask for one at your mext appointment.

    Why not also ask your GP to refer you to a physio who could give exercises specially tailored to your needs? It all helps. Really.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • wends68
    wends68 Member Posts: 5
    edited 30. Nov -1, 00:00
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    the rheumatologist was more interested in me losing weight to be honest. in fact he made me feel almost embarrassed (not even sure if thats the right word) as i felt he was quite condescending and judgemental, especially when he said i understand that telling someone who only eats a lettuce every day to only eat half a lettuce is hard but you have to try mrs lawrence. he said he didnt want to prescibe DMARDS as they were a lot of trouble having to get tested every week etc. however now the prednisilone worked my gp has written to him and now i have another appt with the rheumatologist. on my birthday , yayyy what a present lol :lol: my gp is making a referral for me with the pysio as well. the stretching exercises didnt go to well , i hurt the back of my knee doing them, i think i over did it. so for now im sticking to the meditation and breathing exercises and my circulation board. hope your all feeling ok.

    :deckchair: cant wait for the sunshine xxx
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    What an odd approach from a rheumatologist. They usually can't wait to get their patients on the DMARDs because the sooner one starts the better the outcome should be. Yes, there is initial testing (in my case fortnightly bloods for three months) but that's to ensure that the body is coping with the medication. My orthopaedic surgeon moaned about my weight and refused to do surgery because of it but my rheumatologist has only mentioned it in passing because my methotrexate dose had to be gauged on my weight.

    When you say the pred has 'worked' you mean no more symptoms ?If so then yes, it's done something but has not tackled the underlying problem. It never does. I took a low level daily dose of pred for three years then weaned myself off because it thins all the tissues in the body, not just the mis-behaving ones. I decided I could do better in life without adding thinner lungs, thinner heart muscles and thinning bones to my troubles. :lol: DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • wends68
    wends68 Member Posts: 5
    edited 30. Nov -1, 00:00
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    yeh he is a bit of an odd one, my orthopeadic surgeon on the other hand is a really nice man.. guess i cant have it all ways . my gp did mention something about giving me a low dose of prednisilone daily but he wanted to write to the rheumatologist first. when i say the prednisilone worked yeh i do mean it took away everything, no more pain at all , talk about feeling a million dollars lol . i didnt know it thinned all your tissues. ill have to see what they say at the hospital and have another chat with my gp. i really cant be doing with thinning bones as well i hate the thought that ill ever break a bone again after the last time. hope your all feeling ok today .
    net time someone says no pain no gain i might trip them over with my stick lmao !

    :cheers:

    wendy xxx
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    hello, it's good to hear from you again. Your GP was right, he shouldn't prescribe pred unless the rheumatologist is in agreement and no, it doesn't cure, it merely masks. I had a very thorough talking to from one of my rheumatology nurses who told me what the pred was doing to my whole body: don't get me wrong, it has a role to play, and a good one too, but it can all too soon go nastily wrong. I never responded to the injections but the tablet stuff? Ooooooh, lovely!

    Thanks to the clever adverts for headache pills people think these drugs target one specific area: they can't and don't. Is there a chance you could see another rheumatologist? The first I saw was coasting towards retirement and assured me I had nothing arthritic going on. I proved him wrong. :lol: DD
    Have you got the despatches? No, I always walk like this. Eddie Braben