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Date: 12.01.2010
From: Nadine

Subject: Any pointers for a newbie in pain

Hi All,
Firstly wow great webiste, I have been suffering from swollen joints mainly hands, knees, ankle, neck and shoulder! for approx a year. My doctor says he doesnt want to rush and put me in the wrong cat for which arthritis group im in. I have had 2 appointments with a specialist who also refuses to give any answers. I have a family history of several forms of arthritis all of whom are now immobile. I'm 28 and kinda feel the docs and specalists are not doing much. My family are telling me I should pay to be seen by a private consultant to at least try and get a diagnosis but I dont even know where to begin. Some days Im fine but my joints normally wake me in the early hours which means I dont get proper sleep. I constantly feel exhausted and I'm in danger of turning into a grump. The only thing Im taking is Tramadol 50mg from my doc. For as long as I can remember I have had sore knees even as a child. Any advice would be great as to be honest I am frustrated and a bit overwhelmed by a sense that nothing is being done.
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Date: 12.01.2010
From: Verity

Subject: Re: Any pointers for a newbie in pain

Hi Nadine, Im surprised they haven't put you on anti inflammatories and/or MTX because Im sure these are used for all types of arthritis? It sounds like you need to keep hassling them. I started with Chronic juvenile arthritis and apparently Ive had RA all along (this is what they have decided now). Im not too bothered the correct name as long as Im getting the meds for it (which you aren't). Definately go back and speak to them about starting better meds.
Im sure others on here can back me up in that we all get grumpy because of pain and frustrations. To be honest, I don't know why my bf is still with me. I can be sooooo horrible sometimes when its not his fault. this forum is great for getting things off your chest.

Have you looked into going private? Ive never done this before so dont know prices or benefits but would be interested to know if anyone has info.
xx
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Date: 12.01.2010
From: Angela

Subject: Re: Any pointers for a newbie in pain

Hiya Nadine,
Have you had any blood tests at all?
If not I suggest you ask for some pronto as if they come back abnormal they can give the gp a fair idea that somethings going on, then he can write to your specialist again.
I would also ask for the results to for my information,and research them, and keep nagging them until you find out what you have got.
If nothing in the blood shows then ask for any other tests available like scans or xrays on your joints. You really have to keep on at them and be firm to.
I was lucky enough to be told that on this forum early on in my condition (had it now 2 years)and I think when the rhummysees me these days he probably thinks oh no she's back with her armslength list of questions, but I dont care, I am looking after myself, he is looking after hundreds at a time, so mistakes can be made he is only human afterall.
Its alright your gp saying he doesn't want to cat you to soon, but if it turns out to be RA like me their protocol is to get the disease surpressed asap so as not to allow it to damage you to much so I dont think that is a good enough reason.
I am sure you will get some good support if you need it,and advice on here, everyone is smashing.
Take Care
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Date: 12.01.2010
From: nadine

Subject: Re: Any pointers for a newbie in pain

Hi Verity,

Snap as far as im concerned they can call pink and purple but I just dont seem to be getting any where with the doctor and my specalist at the hospital. I do feel sorry my BF too as I work in a warehouse and sit by an automatic shutter which opens all day currently I am wearing 6 layers of clothing to work plus gloves and a hat at all times but the cold is becoming too much. Im so stiff and as a result really tired all the time. He keeps telling me to change job or request a transfer on medical grounds which I'd love to do but until they can confirm anything medically I'm sort of stuck. I had severe knee pain and trouble as a kid which I took anti inflam painkillers for years as a result i am not very responsive to painkillers. Will make an appointment and keep pestering.

Thanks
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Date: 12.01.2010
From: Verity

Subject: Re: Any pointers for a newbie in pain

Pester pester pester! Like Angela said, who cares what they think, you have to put your health first. My rheumatologist thinks Im a pain in the arse (I have given ehr grief tho in the past. Its been a battle over the years because I was so young) And the sooner you change your working situation the better! That sounds bloody miserable. Im rubbish with the cold. Just getting up in the morning upsets me at the mo!
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Date: 12.01.2010
From: kylee

Subject: Re: Any pointers for a newbie in pain

hi i suffered with symptoms for 7 yrs my doctor did a number of test for RA but they kept coming back negative so he put it down to growing pains. as i was 13 years old. i knew in the back of my mind that the pain i was in wasnt growing pains. and i was in a and e nearly every week as i could not put weight on my legs at times. then one night i was in a and e and the doctors looked at my records and saw how often i was there and sent me to see a specialist thats when i was finaly told i had seronegative artheritis it waqs such a relief to know i wasnt going mad. the point im trying to get acoss is please f you are conserned that you have a joint problem and your doctor isnt doing anything i would get second opinion and just to make you aware not all artheritis shows in blood test so if yours are negative it doesnt mean you dnt have it
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Date: 13.01.2010
From: nadine

Subject: Re: Any pointers for a newbie in pain

Thanks guys, Its great advice. I've had blood tests which have only shown small abnormalities, I have been for several xrays, To which my doctor states there is no significant deterioration. I have been pushing thepoint that I am only 28 and how much do they need to see before anything changes. As I'm sure you all know not everyday is a bad day, but it feels like this is what they want to see when Im at my appointments. Luckly I have a good GP who I will now be chasing round the clock. I have asked an aunt of mine to supply me with some info on my other family members with it. As she has Lupus. My concern is that all family members who have it took years to a diagnosis and are now struggling with mobility which at 28 doesnt fill me with joy. I'm soo glad I found this website as to be honest I was beginning to think I was going mad and getting know where. I'm also convinced the Tramadol are not doing much in the way of helping the pain. Will updates you all when I get anywhere
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Date: 13.01.2010
From: bsk

Subject: Re: Any pointers for a newbie in pain

Hi Nadine,

Sorry to hear of your predicamet. You have every right to ask your GP to refer you to another consultant for a second opinion if the first one isn't doing anything. It doesn't matter, as far as I know, what category you are in, they can give you drugs to either dampen down the inflammation or modify it, unless you have osteo.

I tested negative for RA and my bloods were only mildly abnormal when I actually couldn't move, couldn't walk, use my arms and was hospitalised for 10 days. Recently, they were within normal range and I've still got swollen joints. With some people this is the case. It took 5 months to get a diagnosis of seronegative arthritis (ie test negative for Rheumatoid factor) and I am fully aware that this could change. During the 5 months it took to get this I was on steroids which dampened down the inflammation adn I was largely out of pain. I am now on Methotrexate. My x-rays didn't show anything it was only with ultrasound they could see my joints were full of fluid. There is a lot they can do for you and they should be doing it! Hope this info helps support whatever decision you decide to make. Keep us posted.
Sally
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Date: 13.01.2010
From: bsk

Subject: Re: Any pointers for a newbie in pain

p.s. You could pay for a private consultation with a rheumatologist and then ask to be transfered to the NHS for tests etc. I know it is possible as I did it once for back pain. He knew I could not afford private treatment/tests etc and was happy to refer me back to NHS under his name. What I got out of the consultation was his opinion that there was nothing seriously wrong with my back. Cost me £175 but worth every penny. If you don't get anywhere armed with all the info you've got from this forum :) then you might want to consider it. Your GP might be able to help, you could ask them for a recommendation. I'm not generally in favour of private health care but sometimes it is useful!
Good luck.
Sally
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Date: 13.01.2010
From: Dennis

Subject: Re: Any pointers for a newbie in pain

Hi Nadine,
Read my personal story under Dennis.May give you a little guidance.
Good luck.
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