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Date: 19.05.2009
From: Neve

Subject: Pain in knees and fingers (not yet diagnosed)

Hi,

My name is Neve and I am 30 years old. I work in admin (for 4 years now, previously in retail) and in the recent years have developed aches in my knees and hand.
2 years ago I had trouble with my left knee (pain, swelling) which left me unable to walk properly for couple of months. I went to my GP, had blood tests and x-rays taken (all came back clear). They confirmed no fluid in the knee, no sign of damage to the bones or cartilage. In order to treat my condition called őthere‚s nothing wrong with your knee‚, I went to physio and found it helpful (although I have always been quite active, I go swimming and do a lot of walking / jogging and enjoy dancing!). My knee eventually got better and I was able to get my more active life back, although occasionally the knee would get sore and swell again (I thought it could predict the weather!).
Last year I started to develop pains (dull ache, stiffness) in the joints of my left hand and wrist, you could clearly see and feel tiny nodes in the joints. I kept dropping things and really had to put a lot of effort in clenching my fist. I went to see a GP who asked me to keep an eye on it which I did, only to go back couple of months later as the pain had got worse. She thought it was bout of reactive arthritis which I must have developed after a recent cold or flu (I had not had cold or flu for a long while before that) she clearly felt it was not worth fretting over.
Then, both my knees started to ache as well and I could see slight swelling, mainly on the inside of the leg. Went back to the GP (different one this time) who recognized my suffering, gave me anti-inflammatories and advised me to have blood tests done. Tests, yet again, came back clear. Brief holiday in warmer climate seemed to help (not sure if it had anything to do with me feeling better as such, but certainly didn‚t make matters worse! :D ).
About a week after coming back from my holiday, pain returned. I went back to the GP as I didn‚t find the anti-inflammatories helpful, GP said would refer me to a rheumatologist, although doesn‚t seem to think I have any sort of rheumatoid condition, also considering blood tests were negative for this. Now waiting to get to see rheumatologist
I have tried őeverything‚ I can think of, paracetamol, ibuprofen, anti-inflammatories, co-codamol (currently on this, as per GP‚s advice), herbal remedies, heat rub, cold packs, even diets nothing seems to make a huge difference.
I‚m in a lot of pain at the moment with my knees, they ache a lot and get very stiff. Difficult at work as I can‚t seem to be able to keep my legs in one position for very long. So I keep stretching them and then bending again, keep standing up and going for short walks. Sitting is difficult and I get very stiff after a day at my desk. Walking seems to ease the pain somewhat (or the pressure) although it is very slow and stiff and at times quite painful. Keep having this burning feeling in my knees! I can manage to sleep at night quite well (occasionally wake up because of the pain) and mornings are always a little easier than later on in the day.
Doc seems to think it is joint-related rather than muscle-related. I have been unable to ődiagnose myself‚ yet and thought I would post this note here and see if any of you would have any suggestions / advice etc?
I would be very grateful for any advice you may have to offer! At times I think it may be some sort of arthritic pain but not sure if it fits the picture (GP and tests seem to suggest it doesn‚t)? Hate to admit but I‚m feeling quite frustrated with the pain and being unable to őfunction normally‚ and sometimes can‚t help but feel sorry for myself!

Thank you and take care everyone
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Date: 19.05.2009
From: Elaine

Subject: Re: Pain in knees and fingers (not yet diagnosed)

Hi Neve
Sorry to hear you are going through all this.
For eight years now I have had joint problems but like yourself all my blood results have been normal. That doesn't mean you don't have arthritis or inflammation. I was diagnosed with Palindromic Rheumatism (PR), which is a reasonably rare, intermittent type of arthritis, within about 9 months of first symptoms by my Rheumatologist. All my bone x-rays were normal too, except an MRI which I had about 2 years ago. That showed that I had inflammation in the joints. From that he then changed my diagnosis to just Inflammatory Arthritis. To this day I don't know which type it is as there is over a hundred types of arthritis. I only know that I have a sero-negative form of arthritis. Since the MRI I was given Hydroxychloroquine, a disease modifying drug to slow down the condition which is helping alot.
I know it's easy for me to say but hang in there until you see your Rheumatologist. They have far more knowledge about these things than your GP.
The burning pain you are experiencing sounds like inflammation. I get this in my hands and feet when I am in a flare.
Hopefully you will get to find out soon.
Take Care
Elaine
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Date: 20.05.2009
From: Neve

Subject: Re: Pain in knees and fingers (not yet diagnosed)

Hi Elaine,

Thanks very much for your kind response and encouragement! I am hanging in therehoping to get my appointment letter soon!
I had a read about PA and sero-negative arthritis and must say certain facts do sound familiar, however, I shall wait until I see the specialist and hopefully will get a confirmation once and for all (so until then, will try to stay positive!). It was good to read about those conditions anyway, havent seen them mentioned too often many thanks again for your advice. Good to hear that you have found the medication helpful.

All the best
Neve
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Date: 20.05.2009
From: Sharon72

Subject: Re: Pain in knees and fingers (not yet diagnosed)

Hi Neve

Mine started in one finger and all my blood tests came back clear docs tend to go by your inflam levels but they do not always give a clear indication of what is going on in the joints (i was told this by consultant) i know its hard and it can get you down but try and stay positive. The sun also helps my joints too.
Hope you dont wait too long for app.
Take care
Sharon72
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Date: 25.05.2009
From: val h

Subject: Re: Pain in knees and fingers (not yet diagnosed)

hi sorry u r going through all this. i put off going to c the doc. as i thought she would say it was all in my head. but the blood test showed inflimation she said to try ibuprophen did not help she gave me some anti inflam. after that which worked great so stay with it its hard and u dout your self from time to time and the pain gets u down but they will sort you out its great when the flare ups r under control so keep smiling and let us know how u r getting on.
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Date: 08.07.2009
From: Neve

Subject: Re: Pain in knees and fingers (not yet diagnosed)

Hi all,
Long time no chat, hope youre all coping ok (i can see some of you have been very busy on the forum, it will take me quite some time to catch up with whats been happening!).
Had my first rheumatologist appointment today and had some blood tests and xrays done too. Doctor had scribbled 'polyarthritis' and 'early RA?' on the papers I had to give to the nurses at the lab and xrays. quite keen to find out what it actually is. Just wanted to see how those of you who have RA started to get the symptoms? Im having aches in my knees and fingers but they come and go. Havent forgotten about your suggestion Elaine, so if I end up having to argue my point when I go to see the rheumatologist again, I will pull out the palindromic / sero-negative card.
Take care everyone.
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Date: 08.07.2009
From: Lynne

Subject: Re: Pain in knees and fingers (not yet diagnosed)

Hi All started the same way as you Neve, did take a while to get my diagnosis. There is no specific test for RA just indications that it may be that. It is a complicated illness to diagnose as we all suffer different symptoms. The meds are pretty decent now at controling the symptoms but they do tale some months to kick in. As we have said to many newcomers to this forum you have to be persistant with your Rheumy or they will just fob you off and tell you to come back in six months time (I've had RA for 20Yrs so have good idea how the system works,
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Date: 08.07.2009
From: Lynne

Subject: Re: Pain in knees and fingers (not yet diagnosed)

Check out the post on Anemia there are a couple of gals on there who are in the same position as you all,, some good advice on that post for you all. Take care
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Date: 14.07.2009
From: Neve

Subject: Re: Pain in knees and fingers (not yet diagnosed)

Hi All,

Thanks Lynne for your advice. Yeah will need to be tough with the rhummys. Got a letter from the hospital for my next appointment, in October! So I think I will be phoning the secretary to see if they can change the appointment or at least send the results to my GP. I appreciate there are others who are worse off than me when it comes to pain so I try to be good and not complain about the "service" too much! However I would like to know the test results before October!
Pains been on and off and on and off again, achy burnin knees and cold ache in fingers.

Anyway, stay strong everyone and keep smiling!
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Date: 14.07.2009
From: Lynne

Subject: Re: Pain in knees and fingers (not yet diagnosed)

Hi Neve
If it's the results of the blood test.. they nearly all computerised so your GP should get a copy as soon as they have a result. Like you say give him a ring in a couple of days. However he may not be able to give you a diagnosis off those blood test, because there is no specific test for which type of arthritis you may/maynot have, They are just an indication and your specialist best guess according to what sympton's you have, sorry I could'nt be more posative for you. I know it's hell waiting and not knowing. sorry hun
take care
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Date: 14.07.2009
From: val h

Subject: Re: Pain in knees and fingers (not yet diagnosed)

make a list before u go as u always forget things and some u might not feel have anything to do with it but does, do u get exausted or limbs feeling like lead(most of us get this) when having flare up joints feel hot hope they sort u val
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Date: 15.07.2009
From: Neve

Subject: Re: Pain in knees and fingers (not yet diagnosed)

THanks for your support everyone, yeah its not easy not knowing or having to deal with the aches. Sorry to hear that youre having a rough day Val, hope you feel better soon! Is yours RA too?
so good to have all y'all who understand what its like, we know were not going mad or looking for sympathy / attention!
I do feel a bit like wasting my time contacting my GP about the results but I guess it has to be done and then keep on waiting to see my rhummy again. I will make sure to write everything down, as you said Val, you always forget to mention something or think its not important. What you described is exactly what I have when I have a flare up, tiredness and heavy limbs - i walk around like a little robot with my stiff legs!
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Date: 15.07.2009
From: val h

Subject: Re: Pain in knees and fingers (not yet diagnosed)

no doc said it oa not bad until get flare up then not at all nice but meds work so at least i know can get relief. i hope u get sorted soon and get some meds that work 4 u.
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Date: 16.07.2009
From: Lynne

Subject: Re: Pain in knees and fingers (not yet diagnosed)

Hi neve also keep a list of people like Docs,nurses,physio etc and treatment. Times and date of appointments. It will be use full should you wish to claim disability living allowance. You can claim this benefit even if you are working. Nobody tells you these things. Take care
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