Needing information

[Crazycatlady_101]

Hello, I’m 30 yrs old and for the past 5 years on and off I’ve suffered with joint pain in both my knees and elbows.

Some mornings I take ibuprofen before I get out of bed because I’m that stiff and in pain. I’ve probably took ibuprofen everyday since Christmas.

I’ve been to the drs a couple of times about it but it seems no one is willing to help or listen to me. A few years ago I was referred to a rheumatologist where I was diagnosed with hyper mobility syndrome and discharged so that was that I just carried on. He suggested some trainers to me that are the best things I’ve ever worn really helps my knees, the only shoes I ever wear.

Recently I was off for Christmas I then caught covid so was off work for a couple of weeks, over this time I’ve had some kind of flare up stiff and unable to move, nothing has caused me to be like this no injury just a onset of stiffness and pain like all the other times I’ve had this. I thought it was because I was off and isolating and not moving much around the house, I thought when I returned to work and got moving again I would be ok but that wasn’t the case.

I went to the drs ready for her to examine me, I sat down and she started a covid questionnaire, I said to her that this had been on and off for 5 years so I know it’s not because of covid she didn’t even look or touch my knees and only looked at my elbow because I took my coat off where she said it was tennis elbow and would send me for physio, as sad as I was she didn’t listen to me I was happy she referred me for physio but he told me I wasn’t hyper mobile so I’m confused of what to believe. I had a blood test where everything came back fine I have an underactive thyroid so thought that would be contributing to my joints and was surprised to hear my test results were fine.

I went out last Friday night into town I didn’t do much dancing but for the past 5 days I’ve been so stiff and unable to move it’s just not normal. I am overweight so I know this won’t help my joints but I believe it’s more than my weight affecting me.

I work in a hospital and work has referred me to occupational health, I have a phone call on Friday. I don’t know much about RA or what to say to them does this sound like a possibility?

[Mmrr]

Unfortunately your story of joint stiffness and feeling unwell yet not being taken seriously is not unusual.Have you asked your GP directly 'could I have seronegative RA' ?

If they say no....ask how they know ?

If they say possibly...as for a further rheumatology referal.

It might also worthwhile writing to the GP practice with your concerns.

Many GPs have little knowledge about anything rheumatological. In my own situation it was a private physio whom I saw who wrote to my GP suggesting a rheumatology referal.

[sylvi in reply to Mmrr]

Listen to Mmrr she is talking sense.xxxx

[Crazycatlady_101 in reply to Mmrr]

Thank you for that that’s helped me already!

[Mmrr in reply to Crazycatlady_101]

😎

[AgedCrone]

Try to see another Dr at your GP practice and definitely ask to get some blood tests done. A lot on here were ignored for a long time before we were eventually diagnosed and I’m afraid the only answer is you have to stand your ground and politely say you would please like some tests done.Also…it is definitely not a good idea to take nonprescription ibuprofen for a long period ….mention that when you were asking for the referral.

[Crazycatlady_101 in reply to AgedCrone]

Thank you! I am uneducated when it comes to ra so don’t want to say I have the symptoms etc but I just think I should be looked at to rule it out. Everytime I Google things ra always comes up so does make me wonder. I really try to not take ibuprofen everyday I tend to take it in the morning when I’m really stiff and try and work through the pain for the rest of the day luckily I have the option at work to sit, stand and walk about when I want to but just lately I dread getting up for work in the morning.

[AgedCrone in reply to Crazycatlady_101]

Don’t suffer in silence..,.be fair but firm that you would like tests to rule out RA.Mention you have spoken to people with RA & you really need reassurance because if it is RA…you need to start taking Disease Modifying Anti Rheumatic drugs( DMards) ASAP.

I was diagnosed 20+ years ago in my 50’s….& I’m doing fine because I got treatment very quickly.

So Big Girls Knickers on …& make that appointment.😂😂

This underlining must be to do with HU…..some others have had it happen..& we can’t get rid of it!!!

[Mmrr in reply to Crazycatlady_101]

I come from a medical family and have several friends in the medical and paramedical professions, everyone including Dr Google ( and the dog 🐶🐕🐩.....lol) kept saying has anyone considered RA ? Except the GP, then the rheumatologist floundered around for many months before agreeing I had seronegative RA. Don't be afraid to ask direct questions, but with politeness.

[AgedCrone in reply to Mmrr]

I was told “everyone gets aches & pains in their 50’s…..take an aspirin”!Thankfully I ignored her…got the name of a Consultant Rheumatologist …..but remember f2f appointments were easy then….& just placed an envelope addressed to him in front of her,& said I wanted a referral…Please!

The rest as they say is history…a lot of which I prefer to forget!

[nomoreheels]

Hiya Crazycatlady_101, welcome to the NRAS site. Firstly let me address the two types of RD, seropositive & seronegative, determined by a blood test. The first forms part of the diagnosis when there are markers in blood of Rheumatoid Factor (an autoantibody, but not a specific for RD as it can also be present in normal people & in other conditions) & anti-CCP (a more sensitive test, for an antibody working against your normal ones) are positive or very high, along with 2 inflammatory markers ESR & CRP. The second is when the reverse happens, low or no indicators, except that GP's aren't well versed in Rheumatological conditions & may read negative or low values as meaning there is no active disease, delaying a referral. If your bloods showed the latter then examination of painful or swollen joints should still have been carried out, & dependent on responses (& in generally, symmetry) from there a referral made. As you've probably gathered a seronegative diagnosis is often misunderstood.

Typical symptoms are stiffness, pain, swelling & redness around the joints plus fatigue. Something else, if you have one autoimmune condition it can follow others are diagnosed. As you have listed some of them I think another trip to the GP is needed, except try & make it with a different on to who you've seen before.

Some reading for you, so you're well versed in RD, diagnosis & treatment nras.org.uk There is also a helpline if you'd like to speak with someone 0800 298 7650 Mon-Fri from 9:30am to 4:30pm. Anything we can help with we will of course, we have plenty of experience between us. ☺️

[Crazycatlady_101 in reply to nomoreheels]

Oh my goodness thank you for this information I feel abit overwhelmed already with all this help and information from people I’m so grateful! I feel confident now to make another appointment, because I’ve been back and forth over the years I’ve just think what’s the point but I really do have to push! I’m going to do some reading tonight and make some notes ready for my phone call Friday! Thank you!

[Lolabridge in reply to Crazycatlady_101]

Yes we all find we have to push sometimes to get an appointment and then “make some noise” to be heard. The more clued up you are in advance of your appointment the better so do go on the NRAS.org site and do your homework!Incidentally - it’s best not to take ibuprofen on an empty stomach so if you feel you need them first thing in the morning keep something to nibble by your bed. I like the cheese flavoured oatcakes! Have some in your desk/locker at work too.

[Deeb1764 in reply to Crazycatlady_101]

Great advice here and keep a notebook as at the beginning lots of info and lots of questions you will want answered. Remember it is your body and being in pain is not normal for this length of time either. The one thing you will need is resilience to keep pushing for answers and you will get frustrated but keep pushing and come on here for a rant or even WOW someone listened!

[nomoreheels in reply to Crazycatlady_101]

You're welcome. I'm pleased we've helped. I just thought of this nras.org.uk/resource/gettin... It might help you prepare for when you see a GP again. If you can manage it might be an idea not to take ibuprofen or pain relief for a couple of days before you're seen, just so you're joints are at their ouchiest when examined. One more thing, if the GP suggests it's Osteoarthritis (wear & tear arthritis & not autoimmune) I'd still politely request that he/she arranges the blood tests. Good luck. Will you let us know how you get on?

[Sheila_G]

I agree with Mmrr. Good luck.

[Whezziewhoozie]

Get a blood test that involves rheumatoid factor at the very least. That’s how I was diagnosed after a year of physio etc

[Crazycatlady_101 in reply to Whezziewhoozie]

Do I have to ask for anything specific or the seronegative/positive test?

[Whezziewhoozie in reply to Crazycatlady_101]

Hi, no just ensure that there is a rheumatoid factor. My was low but still elevated but by the time I saw a rheumatologist it had gone crazy. It may not show anything but it’s worth a go

[Magician-be]

I was eventually diagnosed with RA at the age of 44, 30 years ago. Initially my GP said arthritis, however after a year of noting my symptoms particularly those with symmetrical pain, detailed bloods showed RA activity. The good news is that treatment has meant minimal joint damage over time, but do not ignore other symptoms as it is a systemic disease. Brain fog and fatigue with night fevers featured in my symptoms and can be more persistent than the joint issues.Good luck with a competent diagnosis.

[Crazycatlady_101 in reply to Magician-be]

I defo have brain fog and fatigue so I will mention it on my call tomorrow ! I’m feel quite hopeful with this call and confident I can ask about ra now

[Leics]

Hi and welcome some very good advice already given and unfortunately so many of us have had your experience getting tests and diagnosis done. The only thing I can add is you mentioned that you work at a hospital and have a occy health appointment. When I worked at the hospital before I had to be medically retired in my 40’s I found occupational health were amazing if it was me I would ask if you could have a F2F with one of the docs there. A letter from occupational health will go a really long way to getting your GP to listen refer and do the tests. Use occupational health they’re there for you and will help you to get the advice and maybe treatment you should get if you suspect rheumatoid disease / arthritis. Good luck keep us posted.

[Crazycatlady_101 in reply to Leics]

I am hoping they will help me as my drs haven’t, I don’t know to what extent they can help but I’m going to explain how I feel I’ve not been listened to and give them my symptoms and history x

[Leics in reply to Crazycatlady_101]

Well hopefully they’ll be great. They are independent of the hospital but if nothing else they will be able to help you at work but in my experience they were terrific at informing my GP and giving them the info they needed to get something moving. I do hope they’re as good for you. I’m actually astounded that I saw my rheumy yesterday and I’m going for a CT scan today so the NHS can move when prompted. Good luck.

[Sweetandsour82]

Is there any way you can go private? Think you would get answers. I know you shouldn’t have to but I think 5 years of no answers is horrendous for you. Private might be much cheaper than you think. My sister suffered with horrific herpes simplex all over her mouth constantly as she was always stressed. In the end she paid £100 fir a private dermatologist appt and she prescribed her tablets that her GP has never recommended all her life and guess what. Never had a cold sore since. Just a thought x

[Crazycatlady_101 in reply to Sweetandsour82]

I never thought of that, I’ll see how my phone call goes tomorrow and if I feel like I’ve not been helped I’ll look into it x

[Sweetandsour82 in reply to Crazycatlady_101]

Now she gets that exact prescription each month by her nhs doctor. x

[liveinwoods]

You are getting a lot of very good advice from a lot of well-informed people. I wish I had known about this website before I got so much joint damage. I never dreamed that I had RA even though I was under the care of a rheumatologist at the time. It was always considered osteoarthritis until I got an MRI and that prompted the RA diagnosis. Do not be afraid to be politely assertive. Good luck!

[Crazycatlady_101 in reply to liveinwoods]

I am really overwhelmed with all the comments, advice and information I have received, i was abit unsure to post on here as I went to dr google and my symptoms always came back to ra but I’m glad I have posted to help me diagnose or rule it out xxx

[Crazycatlady_101]

Hello sorry for the late update but I had a report through from the occupational health dr, work wise there’s nothing much he could do which I expected but he has wrote to my gp! I’m not expecting them to call so I will gather all my pictures I have of my joints and what dates and prepare some questions and make an appointment. My pictures aren’t great but will show some of my swollen joints.

Letter

[Crazycatlady_101]

These photos from 2018

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[Crazycatlady_101]

2018

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[Crazycatlady_101]

2018

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[Crazycatlady_101]

2018

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