Please help

[Elephantmad]

Hi everyone, I'm in desperate need of help. Last year in June I was sent to Rheumatology as I had hand and wrist pain and a low positive ANA test result. The conclusion was that there was no rheumatic findings, which I agreed with. At the end of my letter from consultant it states that if any more symptoms occur to refer me back.

In Feb this year I started getting more joint pain and it gradually spread, now it's in both feet, ankles, knees, elbows, hands and wrists and i get swelling on and off too. I saw my GP 9 weeks ago and he wanted to try me on stronger thyroid meds to see if it helped, it didn't. I saw him again 3 weeks ago and he agreed that Rheumatology need to take a look at me again.

It took him 3 weeks to refer me and I found out today that the referral has been rejected and they are sending me to pain management!!!

I'm so lost i just want someone to tell me why I'm in all of this pain.

Any advice is so welcome

Laura

[Hidden]

I too was originally referred to a rheumatologist and told I didn’t have RA. 5 years later referred again diagnosed S- negative which doesn’t show in blood tests but had all the symptoms including swelling and fatigue.So much damage done while untreated.

Get a second opinion (GP) or go private. Don’t be fobbed of swelling????? Doesn’t need pain management.

[Elephantmad in reply to Hidden]

Thank you. The trouble is, the only Rheumatologist who works in my cities private hospital is the one who rejected the referral! I'm currently chasing a copy of the referral that was sent, it doesn't sound like my GP has done me any favours. I wonder what symotons he wrote down.

Sorry to hear u have had damage in this time. I don't u understand why this is all so hard

[Hidden]

I’m sorry that this has happened to you Elephantmad, it’s unbelievable that you can be referred by your GP who thinks you need to see a rheumatologist and then be rejected without them even seeing you !! Disgraceful. This doesn’t help you I know but I would be back at the GP’s. They really need to do something to help you. Whilst all this is going on you could be getting damage to your joints. I hope you get some treatment soon.

[Elephantmad in reply to Hidden]

Thank you, I will keep on at GP, and ask for copies of letters I think x

[helixhelix]

You need to go back to GP, ask for the blood tests for inflammatory markers and RA factor and anti-CCP be re-tested, and ask to be re-referred. Write down a list of your symptoms - so where the pain is, is it worse in the morning or evening, does it improve with movement or get worse, is it on both sides of the body etc. If there are joints which are hot red and swollen take photos. And nag to be treated seriously! Good luck.

[Elephantmad in reply to helixhelix]

Thank you, I will keep on. I have documented everything since it started in Feb, and I have taken photos of swelling. It's everywhere except hips and shoulders and on both sides of my body. Unfortunately my inflammation markers and rf are negative and swelling only lasts for 24 hrs at most which is why gp doesn't seem too interested i think. Thanks for your advice x

[Stowe]

I feel for you, I had a similar situation whereby the dr didn't think I had RA and said my xrays and blood tests were fine, even though I had carpal tunel in both wrists, tendonitis in both arms and shoulders, pain in my knees and feet, I insisted they referred me to a Rhumatologist at the hospital. I took myself to a&e as I couldn't even get out of bed. Then because the NHS appointment was still months away and they tried to push it back by months, I decided it was worth going private. Best thing i did app was 3 weeks later and had a diagnosis within 20 mins of seeing the dr. Now on medication and am 80% better. The thing is you shouldn't have to but you really do have to push for what you want as to be honest the drs don't. Good luck and don't take no for an answer as this is your health. X

[dembonesDAMNBONES]

Jumped through hoops for three years, constantly being told it wasn't RA and, finally, threatened to take legal action against both the Dr's practice and the Health Trust.

Was seen within a fortnight, diagnosed and finally began treatment.

The longer it goes untreated the more progressed it becomes.

Best of luck!

[Angels54]

Go back and get a second opinion, good luck.

[pd118]

saw foot specialist thus wear orthotics - love - I swim once a week a must that has helped me greatly