Help!!!

[smiley613]

Hi everyone I'm 23 years old and I have been diagnosed with osteoarthritis in my ankle I also have painful hands and wrists but nothing obvious on any scans my hand surgeons are telling me that everything is just a pain problem and my foot surgeon believes it maybe RA or another inflammatory arthritis but the rheumatology department at the hospital wouldn't look at me as I'm serum negative but a lot of my joints are hurting my I constantly very tired I don't have as big an appetite as I did and I finding it very hard to cope does anyone have advice

[allanah]

I'm sero negative too but I got diagnosed as The inflammation levels in my blood test ( CRP) was high.

Go see your GP maybe and ask him if he could do it check your blood tests.

Sometimes it does take a while to get diagnosed, so meanwhile keep a pain diary and write down pain and swelling and where it is. Also maybe get some photos or swelling if redness photos on your mobile for them to see .

Hope they can get it seen to soon for you x

[smiley613 in reply to allanah]

thnx I'm doing a pain diary I had blood test and my inflammation levels where high end of normal

[allanah in reply to smiley613]

And that's the problem smiley , they usually diagnose on blood tests, ultrasound scans of hands and medical examination. So what happens is they only see you the day your not too swollen or inflamed.

So when u get a bad day go armed with the diary etc to the go initially who can redo the bloods etc and write a longer letter to rheumatology and ask if they will see you. It's sad but they won't want to treat until they are very sure of the cause !

Be patient and have a look at the Nras website for more information xx

So annoying for you at your age !

[smiley613 in reply to allanah]

I've started writing a diary I have spoken to Nras and they advised me to keep a diary. but also my hand surgeon has made life difficult as when I say anything is hurting my they tell me its just a pain problem. but on Tuesday I go to my foot surgeon who is very nice and I will talk to him. My other problem is because of my age they don't think its possible for someone to have it.

[allanah in reply to smiley613]

That's common that they think you are too young! You can tell them children unfortunately get it !

Have a good chat with the foot doctor.

There's lots of causes tho of foot and hand pain . Often with RA but not always you get both ankles or both hands , symmetrical pain . So I hope you get some help next week. Write down your questions and if y can take someone with you as you tend to forget what they say!

[smiley613]

thnx will do

[allanah in reply to smiley613]

🤗

[smiley613]

I sure hope so

[farm123]

Neither your age or being sero negative should be used as excuses to investigate further. I was sero negative at 19 when issues first started and still am 30 years on - many DMARD's, biologics and one knee replacement later. You need to pressure your GP for referrals. Farm

[flow4]

I'm sero negative too, smiley - all my blood tests are normal, not just the rheumatoid factor - but I was recently diagnosed after an ultrasound of my hands showed synovitis and small erosions. It took a long time, though - 3 or 4 years.

It's strange that any doctor is saying you're 'too young' for RA, since it isn't a disease of old age; it makes me think that doctor doesn't know much about it! It IS unusual, however, to have confirmed OA at 23, because OA is a disease of wear and tear, and so usually gets worse with age. One thing that can cause early onset OA is hypermobility syndrome, so I wonder whether you are 'bendy'? The symptoms of hypermobility syndrome overlap with the ones of RA, so it can sometimes take a while to disentangle them. If you think this is a possibility, it's worth checking out hypermobility.org/ for more info.

[smiley613 in reply to flow4]

Thnx you've made me feel so good that I'm not alone. A few of my joints are bendy but not enough for them to think its hyper mobility syndrome but I believe RA can also cause osteoarthritis

[flow4 in reply to smiley613]

No, you're not alone - there are lots of us round here who had trouble getting diagnosed, sadly.

I don't know about RA causing OA - I haven't heard that. It's interesting that they have considered hypermobility syndrome already - it's very under-recognised and under-diagnosed, so it does seem like something you should keep in mind as a possibility.

The other thing worth reading up on is enthesopathy. It's a condition where you get inflammation at the points where your tendons attach to your bones, including particularly wrists and ankles. It can be part of inflammatory arthritis, hypermobility syndrome and other diseases, so it won't help with an underlying diagnosis... But to me, it feels like the explanation for a lot of my pain, and it helped me believe it wasn't just "all in my head". enthesis.info/ was where I got my initial information.

[smiley613 in reply to flow4]

thnx will read it now!

[Cal66 in reply to smiley613]

Hi Smiley613

Have you been checked for Fibromyalgia or Lupus (SLE)? I have both as well as OA & RA, I must be very greedy. All these are autoimmune diseases can be very painful & pain in it's self can cause tiredness. Fibro causes you to have patches of pain in your body & SLE can cause pain & inflammation any where in your body.

I was 24 when my GP kept saying that I couldn't have Arthritis because I was too young, he wouldn't refer me to see a Rhumatologist & so I changed practices. When I did get diagnosed with it I told him what my diagnosis was.

I often still keep a pain diary as it reminds me what I want to tell my Rhumatologist when I see him.

[lainee]

Hi sorry to hear you are getting these pains at such a young age. Don t give up though, my blood tests, crp and rf took ages to show positive even though I had plenty of pain. I did test positive fir anti cpp though so it could be worth asking if they have tested for this xxx

[Hidden]

RA and other types of inflammatory arthritis certainly can cause osteoarthritis in affected joints. And there are some forms of inflammatory arthritis which do occur quite often in young people and don't necessarily show any signs at all in blood tests. I suppose the next most common form of inflammatory arthritis after RA is psoriatic arthritis. Do you have, or have you had any skin rashes, even small ones, or even slightly manky toe or fingernails? These things can be signs of psoriatic arthritis.

When you go back to your GP it might be worth flagging up that you know other types of inflammatory arthritis exist. It can rub doctors up the wrong way if we stride in declaring "I've got x disease!!" but I think if we just show some awareness of possibilities that can prompt them to start looking outside the box.

[smiley613 in reply to Hidden]

thnx will do

[flow4 in reply to Hidden]

I think it's definitely true, postle, that "knowing too much" can rub doctors up the wrong way. However, I struggle with the fact that some of the doctors I've seen are just not well informed or even *interested* in some of the things I think might be significant. For instance, I have (and/or have had) odd skin rashes, scalp rashes, thickening toe nails, flaky finger nails and a few little nail pits, but neither the GP nor the rheumatologist are interested, whether I have just enquired about their possible significance or directly talked about PsA... They're not interested in my enthesitis either, although the GP at least agrees that's probably what it is... It's hard to know what to do about that... And meanwhile, my diagnosis is RA not PsA...

[Hidden in reply to flow4]

It sounds like GPs are more aware of RA than other forms of inflammatory arthritis. Well, more knowledgeable about RA than PsA anyway. When I was diagnosed in 2012, GPs didn't even consider RA and PsA didn't seem to be on their radar. However that has changed so much and these days, though I rarely see the same GP twice, they do seem to be very PsA-aware. So in my limited experience PsA does seem to be becoming more well-known amongst the medics.

Given that things are changing - I think they are - it makes sense to look for more well-informed doctors, whether GPs or rheumatologists, because chances are they are out there. That isn't easy, but it is possible. There's the risk you might transfer to a new GP practice only to find the same brick walls or get referred to a new rheumy who doesn't, for example, seem to know that tendon involvement might, possibly, indicate PsA. Though at least with rheumys you can check out their profiles online and see which forms of inflammatory arthritis they are particularly interested in.

At the end of the day, if we're getting nowhere fast with one doctor, then there's not much to lose by changing to another one. I wish it was easier!

[flow4 in reply to Hidden]

Unfortunately, my GP seems more aware than my rheumy! A bit, anyway... Changing rheumies is not straightforward, since there are no filled consultant posts at my local hospital (I'm seeing a locum) and the next hospital is almost 30 miles away, in a city, with all the challenges that brings (getting myself there when I have no one to take me...) And of course, you can only get referred to a particular department, not a particular doctor... It's an option, but definitely not an easy one...

[mountainlady]

I don't know what serum negative means. I will look it up later. I don't want to lose the website. I'm not too tech savvy. Sixty yrs old. Diagnosed with systemic lupus-SLE AT THE AGE OF 50!!! Was constantly Sick with sinus infections. Life was hard. I don't know how I did it .it was rough. I did not know what was wrong with me. People don't understand.

Sleep helps also. Lessens the depression alto. Its the answer:sleep. My doc. Psych gives me an antianxiety/sleep which helps me get sleep during the day when I feel terrible.

I used to have stomach problems all the time when younger. Probiotics might be a help. Itvwas a queezy, bloating problem,. I felt like I had the flu mm the time. Of coursevthr head is dizzy & foggy. Forgetful. Cartilage feels painful when pressed!. On front of chest area for example. Soreness in the inner thigh area.

Purple, raised a bit, round skin lesions on my legs. Only a few, 3 maybe, aproximately 1/2 inch in diameter, will talk later if I can get onto site again

[Stephenlangtonriley]

This sounds very similar to my symptoms. It took a lot of very persistent requests to get an answer. I was finally diagnosed with fibromyalgia by rheumy and that made me angry, since it is a brain induced pain, I have suppressed the pain in my feet for 50 years and when I spoke to my GP I said I must be schizoid since my brain is doing 2 opposite things at the same time, it made him smile.

Seriously though I went on my own search for an answer and spent a lot of time researching, starting with my osteoarthritis, diagnosed when I was 12 and all record of it has vanished from my GP files. My research was conducted on medical sites and universities not wiki and the rheumy consultant I finally saw accepted my conclusions and reported them back to my GP. You probably have Fibromyalgia, but it is just another symptom of what is going on, without prompting you to draw a conclusion the few symptoms you have mentioned are indications of Enthesitis which is very long term, in my case it took 50 years to finally cause me major problems. The following site may help enthesis.info/

There is very little information available due to the time it takes for the individual symptoms to appear and there are only 2 consultants in the UK that specialise in it and they both deal with it from a paediatric perspective. You might want to contact me privately to discuss all diseases or medical conditions that you have or had in order to get a better picture.

On the downside there is very little they can do except treat the individual symptoms and when it comes to rheumatoid issues virtually zero, all that can be done is pain management although Osteo issues can be dealt with they tend to ration operations until it is a terminal issue.