Waiting Diagnosis

SheilaD

A big hello to everyone.

16 weeks ago I started with swelling under the skin and the back of my right hand. It looks like it is water as I can move it around. My right wrist is very painful I can't grip or lift weights also sometimes it feels like something twangs in the wrist and accelerates the pain. Then 2 weeks after my right wrist started my left wrist and hand is now the same. 2 weeks ago I woke in the morning to find both my knees and ankle are very painful and both hands, wrists, knees and ankle are very stiff and painful on a morning although my knees and ankle do seem to ease slightly as the day goes on. Also over the past 4 days I have noticed that I can't open my mouth very wide as the Jaw joint is becoming painful too. I am under the Rheumatologist at hospital but he seems baffled by my symptoms. I have had 2 blood tests recently and they also seem to be confusing. I am due another blood test on the 17th Nov then I am going for a Ultra sound scan on my hands on the 22nd Nov. Then I have to see consultant on 24th Nov. I am currently taking Naproxsen and Co Codamol but neither seem to help. All these symptoms have come on within 16 weeks! Can anyone please advise if they had anything like this. Your replies would be most welcome.
Apologies for the essay but wanted to get most of it down. x

tillytop

Hello SheilaD and welcome to the forum. Hopefully you will find it a great source of advice and support.

As for your symptoms - I am really glad that you are already seeing a rheumatologist, but I am surprised that he is finding your symptoms baffling because to me, and I am sure many others on here, what you are describing sounds very familiar and possibly suggestive of one of the many types of inflammatory arthritis. Inflammatory arthritis can be very difficult to diagnose and, unfortunately there is no one single blood test investigation or examination which can confirm it or rule it out. I have had Rheumatoid Arthritis (RA) for nearly 16 years now and was "lucky" in the sense that mine followed as near "typical" a pattern as exists so diagnosis was pretty straightforward. Mine started in my feet and progressed to other joints within the same sort of timescale you are talking about (although looking back now, I can see that there were signs before which I did not recognise). And the "morning stiffness" you describe which can ease up during the day, is, in my experience fairly typical. You mention that your recent blood tests seem to be causing confusion too and I wonder if that it because, despite your symptoms, they are still considered "normal"? I know that my blood tests did not show anything unusual at the beginning, even when I was very unwell and there have been several posts recently on the forum saying a similar thing.

Hopefully the forthcoming tests will help the rheumatologist to find out what is going on so that you can have the appropriate help. If it does turn out to be inflammatory arthritis of some sort, there are lots of drugs out there which aim to tackle the underlying inflammation (rather than just trying to deal with the symptoms which is what meds like Naproxen and Co-codamol do).

I know that there are other forum members in the early stages of diagnosis too, so hopefully they will see your message and reply.

Thinking of you.

Tilly xxx

barbara12

Hi Sheila
Tilly has said it all really, if I were you I would ask for another appointment to clear things up, the blood test can be unreliable.
Wishing you well with it all

dreamdaisy

Hello SheilaD, it's nice to meet you though I am sorry you have had to find us. Diagnosing an inflammatory arthritis is not easy, there are so many weird and wonderful forms of this disease (Strewth! Did I just type wonderful? Cripes, I need my head examining. :roll: ) and it can take a while to narrow things down. You are doing all the right things at the moment, you are already under a rheumatologist and that is a very good thing (it took me five years to see one and then he told me I was an orthopaedics problem, twerp), I can understand your frustration but hang on in there, you are on the right road. I wish you well. DD

SheilaD

Hi

Thank you all for your replies and warm welcome. At the moment it is all confusing and very scary not knowing the unknown, being limited to movement and constantly in pain. :???: I am still working and hope to do so. Each day is becoming more of a challenge but I won't give in (I work in a pharmacy and love my job).

I am looking forward to meeting more people in the same unfortunate position and becoming good friends.

Thank you all once again X

scozzie

Welcome SheilaD, the time scale sounds right to me too, not that I would've agreed two months ago ... lol! Now I have any more aches than before, hence why I now agree.

It can all be a bit wearing at times, but enjoy the good days and don't overdo it when they do come.

Good luck
Scozzie

stickywicket

Hello Sheila and a belated welcome from me too. As Tilly, and others have said, it sounds par for the course. I don't know why your rheumatologist should be baffled unless it's with which particular brand of arthritis you have. That can take a bit of time and effort to work out. Anyway, I hope you soon get a proper diagnosis and onto some decent meds.

frogmorton

Hi

welcome to the forums from me.

l am with Tilly too!

Those symptoms sound so familiar.....

l too am glad you have a rheumatologist and hope that he gives you treatment very soon. You may need to start to apply pressure on him

Love

Toni xx

traluvie

Hi and welcome from me too,,

Like you my symptoms came on very quickly,, what started as a pain in my finger lead to swelling of one hand then the other along with pain in elbows wrists, ankles, feet shoulders ..really scared me,, my rheumy i think was a bit baffled with me too as my bloods were ok but my symptoms were showing signs of inflammatory arthritis,, it was a bone scan that confirmed inflammatory arthritis and osteo arthritis..i still do not have a definitive diagnosis but am on treatment and am in a better place now than i was a year ago in regards to that horrible sharp pain..
Hopefully things will get moving and you shall be on the right road to feeling better, it can take time, but we are here to help you on your way..
Take care..xx

Sass99

Hi SheilaD,
I am awaiting diagnosis too - my first rheumatologist appointment is next week. My symptoms began in August while away on holiday with my right forefinger and thumb. They spread to most of my fingers, my shoulders and my knees. I find a pillow under my knees if lying on my back helps to stop them locking.
A good friend lent me a book and I decided to go on a strict diet, cutting out anything possibly causing allergies - particularly as I was unable to get a nearer appointment. I have to say that when I was strictly on this diet, things definitely improved and even now, when I am a little more flexible, things are not too bad. I still ache in the morning, but I have more energy and less stiffness through the day.
Just have to see how the first appointment goes!

Good luck with yours!
Sass x