hi all

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richy
richy Member Posts: 55
edited 5. Sep 2012, 04:32 in Say Hello Archive
ive beed taking tips and absorbing info from your forum for a while now, i recently been diagnosed with ra, some mornings i cant walk, (ankles and knees cripple me sometimes)
after many trips to my gp and blood tests to confirm that i have ra, his best prescribed meds are ibuprofen?????

ive been referred to see a rumatoligist at a local hospital,BUT the waiting list is 8 MONTHS!!!!!!

i cant wait that long, or go through another winter with this, NO WAY! and its affecting my job as a carpenter,
so im going to see a private doctor on wednesday, i,l let you know how it go,s,

in the mean time ive been buying meds from the usa on line, (naughty i know) neproxen helps a bit, but the pain im in is unbearable
and the pain brings me down a bit,,
i sleep downstairs now as i cant do stairs first thing in the morning,,
my main worry is i may have to give up work, im 48,,,,,,
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  • friarygirl
    friarygirl Member Posts: 36
    edited 30. Nov -1, 00:00
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    hello and welcome,
    firstly sorry to hear of your pain and the lack of care.
    tell the GP the meds dont work and stop taking anything else as online purchasing of any such items could cause you serious illness and can lead to death as they are not always what people say they are or are not suited in full to your condition. you need to be honest with your dr about this ASAP.
    you can call the hospital and ask them if this length of time is normal and if so can you go on a short notice waiting list. your GP can also get it altered to a much more urgent appt if you are in medical need for this. Now that sounds dreadful but it will depend on what they feel you need and if you are not exact and spell it out they will assume you are coping well.
    maybe the helpline team here can help you as you might also need to see a physio, OT etc about ways of managing the pain and symptoms. Sadly there are no magic answers and sometimes medication side effects can be as bad as some conditions. its all about getting things as best theyc an be and atm you are far away from that. Sleep is essential and so looking at this issue with the health care teams and ways of enabling you to cope at home will be important too.
    welcome, take a look around and chat - the people are full of info and care for each other here.
    Its quieter at weekends but I am sure others will come along and say hello soon. FG
  • stickywicket
    stickywicket Member Posts: 27,713
    edited 30. Nov -1, 00:00
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    Hello richy and welcome from me, too. I’m sorry you’re having such a tough time of it. I’m afraid, with RA, the worst bit is usually the bit before you get established on the meds that really work for you and, as you’ve discovered, that can take some time.

    You’ve got some good advice from friarygirl so no point in my repeating it except to emphasise, as strongly as possible, that you should never self-medicate and definitely not on stuff bought over the internet as there’s no quality control on it.

    If you’ve not already done so please stop taking the naproxyn NOW. Apart from anything else it, like the ibuprofen your GP gave you, is an anti-inflammatory so, if you’re taking both, you’re likely to be overdosing on them. These meds can damage your stomach lining taken in the right quantities, let alone in the wrong ones. If you’re better on naproxyn your GP can prescribe it. Or there are other anti-inflamms he could prescribe.

    Your GP can’t prescribe the meds that will really help to get your RA under control – only a rheumatologist can do that. The best he could do would be to prescribe steroids. You would probably feel instantly cured on these but you wouldn’t be cured. They simply mask the symptoms and cause other problems and it’ll be better for you if the rheumatologist can see things as they are, uncomplicated by the steroids’ actions.

    I’m sorry. It’s not an easy time for you and I can see that work must be a big problem and a constant worry. Unfortunately, these things do take time. However, we're always here to share the worries and the bad stuff with.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • barbara12
    barbara12 Member Posts: 21,281
    edited 30. Nov -1, 00:00
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    Hi richy
    And a warm welcome from me, if you do have to take the naproxen please make sure you take stomach protectors with them.
    I hope to see you posting more very soon x
    Love
    Barbara
  • friarygirl
    friarygirl Member Posts: 36
    edited 30. Nov -1, 00:00
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    hi, just watching FAKE BRITAIN on BBC1 and thought of you!

    they are talking about the extreme dangers of fake drugs from such internet suppliers and the chap is saying they rarely see a genuine drug from any supplier when purchased online as you have done. They were saying most are made of poisons and substances such as brake dust :o and many other such substances. All very scary indeed.
    Please consider stopping ordering them and stop taking those you have today and see a Dr and get some proper much need help and care. FG
  • richy
    richy Member Posts: 55
    edited 30. Nov -1, 00:00
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    roll on wednesday,.im seeing a private rumatoligist, the constant pain has to go away, even if i cant walk and my hands are like balloons, the constant pain is enough to start me thinking is it really worth being alive????
    and my jobs on the line! ive changed my car for an automatic, as i cant push the clutch in anymore, and now i,l be lucky to walk to the car anyway, constant pain really changes your mind set!
  • stickywicket
    stickywicket Member Posts: 27,713
    edited 30. Nov -1, 00:00
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    I hope the appointment goes well tomorrow, richy. I'm afraid pain doesn't just stop no matter which meds you take but getting it to a more manageable level helps a great deal. If you look in on the Living With Arthritis forum you may find some posts from refereerick. He is newly diagnosed and (if I remember rightly) a builder so he, too, need his hands and strength for his work.

    I do hope you've stopped the internet-bought naproxyn. Please tell the rheumatologist of all the meds you're taking. It is important. And please let us know how you get on, though I'll be missing for a few days from Thursday onwards.

    Believe me, there is life after diagnosis and it is worth living. I hope you'll think so too.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Susiesoo
    Susiesoo Member Posts: 358
    edited 30. Nov -1, 00:00
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    Hi Richy - I'm sorry to hear you are having such a rough time. I just want to say I hope your appointment tomorrow goes as well as it can and they can do something to help you. Will be thinking of you.

    Please let us know how you get on. Good luck.

    Susie
  • richy
    richy Member Posts: 55
    edited 30. Nov -1, 00:00
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    stickywicket wrote:
    I hope the appointment goes well tomorrow, richy. I'm afraid pain doesn't just stop no matter which meds you take but getting it to a more manageable level helps a great deal. If you look in on the Living With Arthritis forum you may find some posts from refereerick. He is newly diagnosed and (if I remember rightly) a builder so he, too, need his hands and strength for his work.

    I do hope you've stopped the internet-bought naproxyn. Please tell the rheumatologist of all the meds you're taking. It is important. And please let us know how you get on, though I'll be missing for a few days from Thursday onwards.

    Believe me, there is life after diagnosis and it is worth living. I hope you'll think so too.
    builder!!!!! im a time served master carpenter!
  • richy
    richy Member Posts: 55
    edited 30. Nov -1, 00:00
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    Susiesoo wrote:
    Hi Richy - I'm sorry to hear you are having such a rough time. I just want to say I hope your appointment tomorrow goes as well as it can and they can do something to help you. Will be thinking of you.

    Please let us know how you get on. Good luck.

    Susie
    thank you all, seeing the doc at 2.45, i,l let you know how it gos,,, 8 months waiting list on the n h s what a joke!
  • frogmorton
    frogmorton Member Posts: 29,426
    edited 30. Nov -1, 00:00
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    Hi Richy

    I am so sorry i am late on welcoming you, but nice to meet you.

    I am also very sorry you are suffering and the GP has only prescribed ibuprofen. Not that I am knocking non-steroid-anti-inflams at all I'm not they are an essential part of our treatment for most of us. No pain relief at all alongside?

    8 months is FAR too long to wait to see someone who can help you more than your GP can and I really do not blame you for going private. If you are self-employed like my husband maybe you have private H insurance, but if you don't you may only need to see him this one time to get diagnosis and appropriate meds prescribed. When my back 'went' years before the inflammatory stuff started, I went private to speed things up, but the op was done NHS.

    You have obviously done your best to help yourself, buying meds, (I know you understand what a risk it is), changing your car. Now I am hoping the rheumatologist will help you with some disease-modifying-anti-rheumatic medication to dampen down the effects of the arthritis.

    Are you going alone to your appointment I wonder? It's just that it can be useful to have someone with you to 'hear' what you miss and to support you too. In your shoes I would prepare what you want to say/ask before you go if you have time so that you don't get home and think "I wish I'd asked....or told him...."

    Finally have you thought about ringing the helpline number at AC? Again this could be useful before you go to help you be ready for this afternoon's appointment.

    Can I wish you all the best for this afternoon.

    Love

    toni xx
  • richy
    richy Member Posts: 55
    edited 30. Nov -1, 00:00
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    thank you all for your support, it means a lot to know im not suffering alone,
    anyhoo! £250 later, seen a private doctor, (i had to honest) he had me told big time, stop the internet drugs, cut back on smoking and drinking, tho i knew that was comming, and he gave me a shot of steroids, and put me 1st in the queue on the local hospital list, in 3 weeks im seeing the same doctor as today thro the nhs, that beats 8 months on a waiting list! i have never been this ill before, (and i had to something about it)
    my boss says take your time getting treatment, and will hold my job open for as long as it takes, so thats a massive worry off my mind, tho i have worked there 24 years,,,,
    the doctor was disgusted ive let it go so far without treatment, or seeing someone about my condition, but thats men for you, scared of the doctors,,,, once again thanks for your good wishes and support, richy, x
  • stickywicket
    stickywicket Member Posts: 27,713
    edited 30. Nov -1, 00:00
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    Well, that sounds like not so much a result as several results in one, richy. I'm very pleased for you. I think that's a corner turned. Well done for having the guts to tell her about the internet drugs and the smoking and drinking. Honesty can be tough but you need to work as a team on this and it's the only way forward. So, if the former stubbornness was 'men for you', I guess you now need to find your feminine side :wink:
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • richy
    richy Member Posts: 55
    edited 30. Nov -1, 00:00
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    stickywicket wrote:
    Well, that sounds like not so much a result as several results in one, richy. I'm very pleased for you. I think that's a corner turned. Well done for having the guts to tell her about the internet drugs and the smoking and drinking. Honesty can be tough but you need to work as a team on this and it's the only way forward. So, if the former stubbornness was 'men for you', I guess you now need to find your feminine side :wink:
    6 foot 4, 12 stone skinny and stright, and in pain 24/7
  • frogmorton
    frogmorton Member Posts: 29,426
    edited 30. Nov -1, 00:00
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    Well done you Richy
    l am over the moon for you - it could well be that the jab helps you loads :)
    That rheumy sounds just like the orthopod l saw with my back - l only lost 210 quid too ;)
    What a great result! Now please do let us kno how you get on.
    Think your boss' attitude probably is testament to your skill - you are worth hanging on to :)
    Take care
    love
    Toni xxx
  • frogmorton
    frogmorton Member Posts: 29,426
    edited 30. Nov -1, 00:00
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    Well done you Richy
    l am over the moon for you - it could well be that the jab helps you loads :)
    That rheumy sounds just like the orthopod l saw with my back - l only lost 210 quid too ;)
    What a great result! Now please do let us kno how you get on.
    Think your boss' attitude probably is testament to your skill - you are worth hanging on to :)
    Take care
    love
    Toni xxx
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Hello, welcome to the forums and it's nice to meet you. You think eight months waiting is bad? Try five years. :lol: Although my left knee was growing and growing and growing my GP at the time kept telling me it would sort itself out. Needless to say it didn't. :roll: I was eventually referred to rheumatology by the physios at our local football team - I turned to them in sheer desperation thinking that if anyone knew about knees they would.

    I think the point Sticky was making about refereerick was that, like you, he too relies on his hands for his work - in fact many of us do. I work as a private tutor and my handwriting is now really affected but I muddle through. I have been on the meds for years now but the pain is constant and has been for sixteen years. It is important to adjust to the pain, it won't go away, but it will fluctuate. Tiredness is another factor with an auto-immune arthritis and that is something that shouldn't be ignored. Don't be afraid of the meds that may be recommended - the side efects sound awful but are not guaranteed. I hope you are soon able to get sorted with something to help - and it's time for you to be more conscientious about dealing with your health. I wish you well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • richy
    richy Member Posts: 55
    edited 30. Nov -1, 00:00
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    the drugs tho doc gave have kicked right in! no more pain! steroids! 1st timeive been to sleep without pain for ages..... feels good!
  • frogmorton
    frogmorton Member Posts: 29,426
    edited 30. Nov -1, 00:00
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    Fantastic result richy :D

    when you see the rheumy (on the NHS) I am sure he will be looking at some longer term meds to help you.

    I am so pleased you feel so much better.

    Love

    toni xxx
  • richy
    richy Member Posts: 55
    edited 30. Nov -1, 00:00
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    i see the stereoids are just a quick fix! couldent get the top off the conditioner bottle just now! expensive quick fix! now my heads back down in the dumps ! again!
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Steroids are a quick-fix and not good for one long-term. I love 'em but have weaned myself off them as I know I'm on for the long-haul with this (sixteen years so far!) As for the emotions, welcome to the roller-coaster world of arthritis, one moment you're up the next you're down and I think it's something that very few of us get used to. If you post on the LWA part of the forum you will gain more replies as more people hang out on there. It's not long until your appointment, the chap will probably ask for more blood tests to be done, maybe an Xray, and then you may possibly need further tests on your general health before you start the DMARDs (disease-modifying-anti-rheumatic drugs). DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • richy
    richy Member Posts: 55
    edited 30. Nov -1, 00:00
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    the doc, says sleep is important, i wake up 5 times a night in agony! in pain 24-7 ive never understood why people take there own lives, but im begining to!
  • richy
    richy Member Posts: 55
    edited 30. Nov -1, 00:00
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    dreamdaisy wrote:
    Steroids are a quick-fix and not good for one long-term. I love 'em but have weaned myself off them as I know I'm on for the long-haul with this (sixteen years so far!) As for the emotions, welcome to the roller-coaster world of arthritis, one moment you're up the next you're down and I think it's something that very few of us get used to. If you post on the LWA part of the forum you will gain more replies as more people hang out on there. It's not long until your appointment, the chap will probably ask for more blood tests to be done, maybe an Xray, and then you may possibly need further tests on your general health before you start the DMARDs (disease-modifying-anti-rheumatic drugs). DD
    your soooo right its scary,,,,, got it in one, more blood tests, and more xrays on my hands,,,
  • richy
    richy Member Posts: 55
    edited 30. Nov -1, 00:00
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    dreamdaisy wrote:
    Steroids are a quick-fix and not good for one long-term. I love 'em but have weaned myself off them as I know I'm on for the long-haul with this (sixteen years so far!) As for the emotions, welcome to the roller-coaster world of arthritis, one moment you're up the next you're down and I think it's something that very few of us get used to. If you post on the LWA part of the forum you will gain more replies as more people hang out on there. It's not long until your appointment, the chap will probably ask for more blood tests to be done, maybe an Xray, and then you may possibly need further tests on your general health before you start the DMARDs (disease-modifying-anti-rheumatic drugs). DD
    16 years!!!!!!!!!!!!!!!!!!!!! ouch 2 years ive been suffering, and i could jump off a cliff 1st thing in the morning!
  • richy
    richy Member Posts: 55
    edited 30. Nov -1, 00:00
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    im not going to, but the pain is second to none!
  • richy
    richy Member Posts: 55
    edited 30. Nov -1, 00:00
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    richy wrote:
    dreamdaisy wrote:
    Steroids are a quick-fix and not good for one long-term. I love 'em but have weaned myself off them as I know I'm on for the long-haul with this (sixteen years so far!) As for the emotions, welcome to the roller-coaster world of arthritis, one moment you're up the next you're down and I think it's something that very few of us get used to. If you post on the LWA part of the forum you will gain more replies as more people hang out on there. It's not long until your appointment, the chap will probably ask for more blood tests to be done, maybe an Xray, and then you may possibly need further tests on your general health before you start the DMARDs (disease-modifying-anti-rheumatic drugs). DD
    your soooo right its scary,,,,, got it in one, more blood tests, and more xrays on my hands,,,
    how very frank and honest, thank you i thought it was me being moody, roller coster ride really strikes home! the pain drains me tho! thank god im single! or my gf would have left me anyway! ,,, grumpy git
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