It's getting beyond the ridiculous!: In reference to my... - NRAS


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It's getting beyond the ridiculous!

DWhite profile image

In reference to my previous post two month ago: I am now in the middle if a big flare up and tried to get an appointment with the rheumy as she asked me to . Alas the earliest they can give me is end if July . I explained that the rheumy wanted to see me whilst in pain and that we had wasted two previous appointment as they happend when I was ok . No lack!!! I am still not diagnosed after 5 years and I am a bit fed up as people don't take me seriously at cause if it , even my husband and friends often discount my pains by saying "everybody gets aches and pains at our age" . But these are not normal aches and pains I try to explain , I feel ill and extremely tired, I shuffle instead of walking , I throb and vibrate internally and I'm stiff . I feel so poorly at times that I cannot function and I end up in tears. But at other times I'm perfectly ok , full of energy and active. I'm seeing GP tonight and my husband is coming with me as we want a final diagnosis . Knowing what we got is half the battle as like this I don't receive any help , no physio , no pain management advice nothing . I have survived with only natural supplements but now its getting worse!

I have now seen the GP ( yet a new one) went with my husband for support. She does not believe it's RA as I have no swelling or distortions after 5 years. She thinks it's Chronic pain Syndrome and has prescribed me Amytriptiline 10mg and maybe some physio. She is also writing to the Rheumy to see if she can see me soon rather than later as they want to be sure it's not RA . Meanwhile I am in a lot of pain and can hardly walk. I'm so fed up!

9 Replies

How I feel for you. You don`t appear to be taken seriously at all. Has a blood test been taken to rule out RD, one that could give a reasonable indication including Rheumatoid Factor? You say that the GP doesn't believe that it's RD, how did she come to that conclusion other that looking at you to draw her conclusion & why refer you to Rheumatology if she doesn't suspect it's the cause of your problems? I would have thought if she considered it "just" a pain issue, not to make light of that as chronic pain is awful, she'd refer you to a pain clinic. AmitriptyIine I would guess has been prescribed as a muscle relaxant & may help short term, especially for a reasonable nights sleep if taken before bed but it's not the answer. I presented my GP with really sore feet & hobbling & her immediate suspicion having examined them was RD & requested a blood test to confirm. It can present as swelling often but not always. My feet weren't swollen but my big toe joint (where a bunion is) was definitely different to how it normally was. My hands at that time were fine as was the rest of me but she acted quickly & within a fortnight I had a definitive diagnosis of seropositive RA. It's possible you could be seronegative if it is RD or have a related autoimmune problem & needs to confirmed one way or another & sooner rather than later if indeed a simple blood test proves positive.

Have a look on the NRAS website if you haven't already & compare if any of the info there relates to you. Hope you get some proper treatment & soon whatever it turns out to be.

DWhite profile image
DWhite in reply to nomoreheels

Thank you NomoreH,

Yes had blood tests done at the beginning and they were bordeline. Had them done again two years ago and they were ok. I wish that they made up their mind once and for all!!

nomoreheels profile image
nomoreheels in reply to DWhite

Mmmm. It could be that when they were taken 2 years ago you were "settled". Or you could even have episodic arthritis which as the name suggests comes & goes. The ideal time to take it in your case would be when your in flare. Can I ask, you may or may not know, when you've had blood tests have your ESR & CRP (inflammatory markers) ever been included? As I said it's not necessarily an indication of RD if you have no inflammation to be seen & it's possible that there's something unseen going on. It's almost as if you need to start from the beginning again with tests to rule out or confirm which must be very frustrating for you as at the moment as she's concentrating on RD & in her opinion ruling it out & not investigating any other possible underlying causes of your pains. If it was me I'd be asking her what exactly she thinks is the cause of your problems. If she truly thinks it chronic pain syndrome then surely her referral would be to a pain clinic & not Rheumatology. She seems to be sending mixed signals.

Sounds like it might be best to just front up to emergency and say that your rheumy wanted you seen when you were flaring, and you haven't been able to get hold of them.

DWhite profile image
DWhite in reply to earthwitch

Can you do that?

I'm feeling your pain because I am getting severe fatigue from a big flare up. After working on Monday I am shattered for the rest of the week but my GP says there's nothing wrong with me. I hope you get your diagnosis soon because then you can get proper treatment. Hang on in there.

DWhite profile image
DWhite in reply to Mark_67

Thank you Didcot. So far all is quiet , I've heard nothing from the GP or Rheumy. I'm feeling better though and the inflammation has abated quite a bit.

Hi, I'm sorry to hear of the problems you have been facing. It is similar to the issues I faced when I was diagnosed. I started with joint problems when I was about 14, my gp didn't refer me, she just gave me steroid tablets, which I refused to take without a diagnosis as I knew they could be dangerous. I went to see a rheumy and he diagnosed joint hyper mobility syndrome. I always believed this was probably true, but I also felt I had RD. Most of my symptoms pointed to RD, but all my blood tests were borderline. This continued for over two years. My rheumy was a specialist in hms and I believe he saw the symptoms he wanted. I discussed this with my gp and they agreed that whenever I had a flare they would fit me in for a blood test there. The diagnosis finally came after a blood test done during a flare and I got referred to an RA rheumy. By the time I had my first X-rays there was significant damage to my hands.

If you believe you have RD my advice would be to look into the blood tests yourself and keep track of your symptoms. A positive RF points towards RD, CRP and ESR are inflammatory markers (during a flare mine shot up to over 100, but were otherwise usually low) and the test which finally diagnosed my RD over HMS was anti CCP. The anti CCP can show active RD or the possible future development of RD. If you see your gp during a flare, although they are not a rheumy, they can still examine you and write up a report for you to take to the rheumy.

Unfortunately the appointment issues never change, I'm currently off all meds due to a series of infections and was advised to go see my rheumy as soon as possible, my appointment is 29 July!

Good luck and I hope you get the help you need.

DWhite profile image
DWhite in reply to Natikins

Thank you Natikins for explaining things to me. Best of luck for you as well . X

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