Why so much pain without diagnosis

[Adalisone]

I actually feel like I'm going mad...the pain wakes me up every single night with my wrist and leg throbbing, then the first few hours of the day the most awful pain in my feet, ankles, wrists and kneck. I completed a trial in January for RA and have been left to it since, I wake up every single day in pain, but because I have minimal swelling I'm not diagnosed with anything...so why so much pain? My blood tests show inflammation and high ccp levels. I take naproxen and co cocodamol just to ease the pain through the day. I'm fed up of crying....feel like I'm going mad because I haven't got a clue what the problem is. Sorry for the moan on, just needed to have a little rant....xx

[AgedCrone]

I’m sorry you are in so much discomfort. What sort of trial did you complete? Did you see a rheumatologist? Did your GP not get a report back?

I’m afraid with this disease we have to be very proactive ....if you haven’t heard the results of the test .....you have to ask for them.

It seems as if the medics aren’t going to come forward with any answers unless we ask for them.

I don’t think it’s lack of willingness from the doctors .....it’s just that there are so few rheumatologist and so many people being diagnosed they are just snowed under.

But do gets an appointment with your GP and see what he can suggest ....at least he may be able to prescribe some more effective painkillers for you.

[Adalisone in reply to AgedCrone]

Thank you for replying...I did the epipra on abatacept for a year, the results of the trial haven't come out yet, I have to wait for the last person to finish. The doctor sent me for blood tests and came back with inflammation and he said to get tested again in two weeks. I'm not sure if its linked but the pain has been relentless since I've been diagnosed with underactive thyroid and since being On the medication for that.

[Hidden]

Rant way

We need to vent because we are not getting the help we need . NHS is running on air the poor staff are inundated.

Saying that when I told my consultant s registrar about waking in pain she said RA doesn’t cause pain while sleeping only OA. Tell that to my toes ,fingers, wrist, neck and ankles.

[Adalisone in reply to Hidden]

I feel lost do you?? I can't seem to get any help that I need, my wrists and fingers throb in the night on my right hand and I can hardly straighten them when I wake up, and when I put any pressure on them I have like electric shocks in my fingers. It eases off a little during the day but that's the naproxen and cocodamol.

[Hidden in reply to Adalisone]

Yes I feel like I’m running through quick sand. Clinic nurse is in constant touch she is trying desperately to get me seen. I now take photos of my hands and feet. Whether it’s a good day or bad so I can show consultant. Whenever that will be. I’ve even emailed some of the worst ones. ( I’m turning into a bunny boiler) 😂🤣😂

If your hands are stiff and clawed when you wake you or someone else take a photo and time how long it takes to uncurl.use these at your next appointment. Wish there was a map to help us navigate this disease.

[JFlay in reply to Hidden]

"Doesn't cause pain while sleeping" is that doctor correct? ☹️ I have horrible nights where my feet, toes, ankles and knees wake me up aching and throbbing, as far as I know I don't have OA in them.

[Stowe in reply to JFlay]

I know my pain and joints were the same, before I was on my medication. The optician as well said something to me about a symptom for my eyes and when I said I at times have pain in my eyes she totally dismissed it, which really annoyed me at the time. 😣

[Mmrr in reply to Hidden]

Oh for goodness sake, RD doesn't cause pain when sleeping ?!

What an absolutely uneducated ridiculous thing to say. My feet, hands, wrists, ankles wake me regularly with heat, aches, and shooting pains.

That's one for the chronic illness bingo that is.

[JFlay in reply to Mmrr]

Definitely! but if that's what some registrars think it's not good for when they become consultants 😒

[mccaffs2014]

I was diagnosed with severe ra. My inflammation levels are always high. At night I wear compression gloves and wrist supports and this helps. I have also had carpal tunnel surgery and the relief from this was huge so perhaps you could get tested for this. I was also prescribed amitriptyline for pain during the night and this helps a lot as well. You need to discuss your condition with your GP as I got an urgent appointment with the rheumatologist because my inflammation markers were high. I hope that you get diagnosed and treated soon.

[Adalisone in reply to mccaffs2014]

Thank you...I have made an appointment to see my gp on the 22nd August, this was the earliest I could get. I'm convinced its carpel tunnel, before my pain wasnt too bad but this feels different, and doesn't subside. Thanks again for your help 🙂🙂

[Kerensa21 in reply to Adalisone]

They should be able to get you in as emergency appointment if you’re in constant pain; that’s ridiculous 22 August? Mine will always do that x

[alexask]

I did have quite a bit of pain, but only one swollen finger. I took a food reaction test, which showed a reaction to wheat, oats and egg yolks. Cutting out these foods (especially oats) and taking a third of a teaspoon of Bircarbonate of soda generally resolved my symptoms. Got a bit of discomfort in my ankle at the moment which I put down to eating a slice of toast this am. Also make sure you keep your teeth clean.