I don't have RA but fed up as I still have joint pains

Kazzab123

I had my first RA appointment on 3 March, my hand is swollen and my fingers on both hands and the base of my thumb are very sore after use (I work on a pc all day which doesn't help). I was given lots of blood tests, a hand x ray and a hand ultrasound. I was told that if they were clear I would be called back in 9 months and given an appointment for Nov. I have only just got my results back today and I'm glad to say everything is clear but I've been discharged and referred back to my GP and my Nov appointment with Rheumatology is cancelled.

Although I'm relieved not to have RA I'm really frustrated since I have OA of my right hip, which was diagnosed 2 years ago, but I still have extremely painful fingers, swelling at the base of my thumb, my left shoulder is painful - though that was clear on xray, my left hip is increasingly painful, my knees hurt especially when walking upstairs and stiffness and pain in my lower back. I'm only 41 which I keep being told is young for OA.

I'm just really frustrated as I've been suffering for over a year, I was told that my vitamin d is dangerously low so I've been on tablets for the last year, but what do I do next? Do I go back to my GP? I'm really unsure as to whether or not I will get answers to my problems, especially as my x-rays come back clear. I just put up with the pain and have painkillers when needed as I feel I'm too young for a life of medication. I'm beginning to feel like a hypochondriac but I know that something isn't right.

I'd love advice as to what I should do next. I hate pestering my GP but I feel that apart from putting me onto strong anti-inflammatories there is nothing else he will do. Should I make an appointment with him or leave it until the pain progresses and gets that bad that I have no option but to see him.

Thanks Karen

Mat48

Hi - sorry you are having such a lousy time of it at present. It is quite possible to have sero-negative inflammatory arthritis - there are other diseases which are equally painful and debilitating as RA and just as serious such as Psoriatic Arthritis and Ankylosing Spondilitis (sp). It has been said in various forums that these conditions are underdiagnosed because of the blood tests showing sero negative.

Anyway just because your bloods are presently not showing anything it doesn't mean you should be dismissed - but that said if they think you have Fibromyalgia or OA rheumatologists do often refer you back to your GP to treat. There are others on this forum who have been told that they have OA but who have later found that their problems are more complex and of an inflammatory/ autoimmune nature.

If I were you I'd go back to my GP and speak to them about this. You aren't making a fuss- you are in pain and whatever the reason this needs to be addressed. If your GP thinks you might have some other type of autoimmune arthritis then he or she can always refer you back to a rheumatologist for a second opinion.

Be persistent - many of us have to be and it does eventually pay off.
Good luck! Mat x

stickywicket

I agree with Mat that you should go back to your GP and have a chat about it all not least the cancelled follow-up appointment.

However, you do know that you have OA elsewhere and, I'm afraid, it does find other joints over time so, as you have no fluid on the 'new' joints, it might be that it is simply more of the same ie OA. Unfortunately, there's no such thing as 'too young' for it. It's a popular misconception. There's also no such thing as being “too young for a life of medication”. Just check the 'My Child Has Arthritis' forum if you doubt that.

I presume both your GP and rheumatologist are aware that you work at a P.C. all day as Repetitive Strain Injury surely needs to be ruled out. This is what the NHS website says about RSI. “The condition mostly affects parts of the upper body, such as the forearm, elbow, wrist, hands, neck and shoulders. The symptoms can vary, but often include:
pain or tenderness
stiffness
tingling or numbness
cramp “ http://www.nhs.uk/Conditions/Repetitive-strain-injury/Pages/Introduction.aspx
Your GP is definitely the right person with whom to talk over these things.

dreamdaisy

There is obviously something up but finding out what is not going to be easy. There are close on 200 kinds of auto-immune arthritis and it can take a deal of time for things to be ruled out rather than in. People in their teens and twenties can have OA but the trouble is that, because it's so common in the older part of the population, people assume it can only affect the elderly. On-going research is considering that there is a genetic link (such as there is with the auto-immune kinds) so my question is this: is anyone else in your family circle similarly affected? DD

Kazzab123

Thanks for your replies it has been a big help, I'm going to make an appointment with my GP, the problem is I get put off easily, I feel as thought I can't question a doctor as they know best...

Dreamdaisy - My grandparents died when I was young and so i don't know if they had arthritis, my mum has OA in her hand and knee but she is 71 so I don't know if that's a factor or not.

Mat 48 - thanks, I have heard about seronegative arthritis which is why I was surprised that I was discharged, I thought I would have gone back in November for more tests to see if the bloods showed anything different.

Stickywicket - my gp looked at my hands and muttered that it probably is arthritis and gave me some gel for pain relief, and the doctor at Occupational Health told me that I'm doing the worst job and could I do less hours!

Sorry for letting off steam, but I'm really fed up with the lack of a firm diagnosis, it's been going on for so long

Thanks for all your help :-)

Mat48

I have to say that I agree with StickyWicket about your age not being that relevant here. My GP discounted OA quite early on because of my age and I was 48 (same age as him!). But when I said that on this forum plenty who were younger said this is not so at all. And anyway there are always the odd few people who have early menopause and early heart problems and early almost anything - so you are obviously unlucky as we all are to a greater or lesser extent.

And many with inflammatory arthritis - much younger than either of us - will have to rely on very heavy duty medications for a lifetime - me included.

But you are right to worry about your line of work and once you feel confident in your diagnosis (and sadly this can take a long time for some) you will be able to access equipment and advice from Occupational Health and get physiotherapy etc so this should significantly help you as well. The support is usually there - its a question of learning how to access it. And you have made a great start coming on to this forum

Take care,
Mat x

stickywicket

This is our 'safe place' for letting off steam so please don't feel badly about it. We all need to do it from time to time.

As for your first sentence, I think there's a big difference between asking questions of a doc and interrogating them on the basis of 'facts' gleaned from the internet. I've had a lot of docs during my 53 years of RA and I can't think of one with whom I had a bad relationship. I ask questions all the time but I always assume that they know more than I do though mostly I find them humble about the day-to-day living with RA. If I don't understand their replies I say so. I think it's vital, with a long-standing problem, that we and our docs deal with things together and that there is honesty on both sides.

Please don't feel bad about going back to your GP. I see mine very rarely but I have, on occasions, made an appointment purely to discuss a specialist visit or, once, to check again, exactly what was said at a previous appointment. In your case I'd want to ask if the rheumatologist had conclusively ruled out any auto-immune form of arthritis and, if so, whether the new problems were likely to be osteo or something else, what the treatment would be, if there would be a follow-up appointment or not, given you were told there would be. These are all perfectly valid questions and the answers will help you to take control of your illness, whatever it is – always a good thing in my view.

dreamdaisy

All doctors are human beings, albeit reasonably knowledgeable ones. The main thing to remember about GPs is they know a little about a lot whereas you sound as though you need to meet someone who knows a lot about a little. The first rheumatologist I saw told me to go away because I didn't have any form of arthritis (I proved him wrong ), the second grudgingly conceded that I might and my current one knows that I do. She deals with my psoriatic arthritis (PsA, a sero-negative kind) whilst my GPs deal with the osteo. My PsA did not begin in the traditional way which threw everyone off the scent for a good few years. DD

DebbieT

Hi,

I was 37 wen I was diagnosed with PsA in my ankles & pelvis etc as well as OA in my knees so ure age isn't that young, I've certainly heard a lot younger.

I was 44 last Saturday (3rd) & it's progressed into my shoulders (OA) with other issues in them as well, my neck & SI joints have PsA, knees still have OA, wrists n hands PsA .... To be honest I get confused which parts have what

My point is that we have arthritis. It affects us all in different ways & at different rates ... Mine is pretty slow, I'm lucky & know it!!

If you suspect you have an autoimmune type & ure inflammatory markers in ure bloods support that theory then definitely ask if you could be sent for a second opinion.
Keep a record of how ure feeling & wen in the day to see if a pattern is forming & also so you have a record of ure pain & swelling!! It's these type of things that can help a Rheumy.
I was weird, I had one swollen ankle, (it's the ONLY time I've had swelling too) I got referred & diagnosed straight away ... Weird coz I was so simple most aren't that lucky!!

Regarding pain meds, my opinion of them is .... if you hurt take them!! Start with as little as possible ... Paracetamol, early on, daily is surprisingly good!! An anti inflammatory may be added at some point but always ask for a tummy protector if you use them!

Good luck & please us posted.

(((Hugs)))

Xx xX

barbara12

Hello Karen
I am with the other you go back and say you are not happy has , you are still in a lot of pain..there is something going on ..arthritis is so complex..and like Mats says blood test do sometimes come back negative but other test should be done.or re.peated
Its not easy keep having to go back to your GP but its something you will have to do..good Luck with everything and please let us know how you get on

Kazzab123

Thanks for all of your advice it's been a big help I went to see my GP this morning and he explained that I was discharged by rheumatology due to there being no signs of inflamation. He also said that my joint problems, left hip, knees, shoulder, hands, back are likely to be the early stages of OA since I already have it in my right hip and as such it will not appear on x-rays yet. He told me to take ibruprofen and paracetamol and when the pain does get so bad that it effects my everyday life I'm to go back and I will be referred to orthopaedics, I'm assuming for joint replacements. Fortunately I don't feel like I'm at that stage yet so I'm just playing the waiting game knowing that the day will come when I am seriously effected by it.

Karen

barbara12

Hello Karen at least you are now a bit clearer..just do moderate exercises to keep your joints supple ,look on the net for hip exercises.. and don't worry for the future, I had a THR 10 months ago and its fine...just wish the rest of my joints were ..mind you I am nearly 64..x