Hi lung buddies - I am wondering what on earth to do in getting a referral to a rheumatologist as I think I am getting the beginnings of RA. I suffer from Obliterative Bronchiolitis , mild bronchiectasis, and lung nodules so I am a lot going on in my lungs. However, suddenly out of nowhere my joints in only one hand are suddenly painful and my third finger is thickening locking and is not mobile. I also have to a lesser degree the same thing on one finger on the other hand. Besides that My elbow hurts especially when I lift anything or rotate it. More bizarrely, I seem to have a roving pain which is sometimes in my knees and other times in my wrists. I have had blood tests, and they have come back negative. But for the last two months the pain has increased and the joint immobility has increase.
Now here is the question, I went to the doctors today and they told me they cant refer me to a consultant. For it seems, now referrals have to go to a panel who assesses if I should be sent, and if so, they choose to whom. All of this I found at best a bit mind blowing bearing in mind I am pretty sure some inflammatory thing is going on. The best they could do is arrange an x ray on one hand and see what damage if any has occurred and go on from there.
Further more since these symptoms have appeared my lung function ( already severely diminished)as gone on a downward slide - but to a degree I expect some decline as what I have is basically a downhill ride and thankfully its been slow getting to this point.
So I ask dear buddies, is this the new NHS policy, or am I getting the run round?
Thank you
Written by
ledge
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Ah I have heard of this. It's a trial and some areas are doing it. The aim is to cut down 'unnecessary' referrals to save money! From what I have heard if it is really needed then they will agree to refer you. Good luck. x
Thanks - especially as it was such a speedy reply!
well at least I hope I will be referred should I need it, but sadly if I do, the length of time it will take, closes the window off early opportunity if it is RA.
Sadly thats not what I was told, that the waiting time for the referral is about 6 weeks. The result of my x ray will take 4 weeks, so that will be 10 weeks as from today. sigh.... I really hope its not RA, but in my heart of heart I think something odd is going on.
🤣 know all about meetings to arrange meetings. Hope you get sorted out soon x
You could ask this question on either the NRAS community healthunlocked.com/nras or the Arthrits Action community. healthunlocked.com/arthriti.... I have RA and know there have been many changes recently. Maybe your GP could do some blood tests for RA and then try referring you.
I have had blood tests but they are negative, but my lung conditions is deemed to be "immune based" so I think there is a causal effect going on. Hence my dilema.
One of the many problems with getting an RA diagnosis, is that many who have positive results don't have RA but some with negative results do. Which is why I suggested posting in the other communities, to get an opinion from other sufferers.
Hi ledge . I had RA a good few years before I developed Bronchiolitis Obliterans. It took AGES to get a proper diagnosis because it didn't show up on my bloodwork, but the pain was horrendous. In the end it got so bad I went to the emergency services. Finally , it started to show on the test results, but not before I could barely move from pain, joint weakness and fatigue. The thing is, they won't do a thing unless it's in black and white on your tests and in my case it took a good six months before they were "sure" and started aggressive treatment. Hang in there. I know it's so tough. xx 🌿
Thanks Caspiana... I guess its going to be a slow process a bit like the diagnosis of OB. I was rather hoping that I could stem the flow as it were by an early diagnosis and treatment. But on saying that I dont want Methotrexate as my lungs are damaged enough and my ice is very thin on that pond. Hows the village? Mouseville I should say!
I understand your concern with methotrexate. I had the very same quandary. I really had a good ho hum about it and consulted with three specialists who all agreed that the dose I was on would not further damage my lungs. Having said that, it's not for everyone and I completely understand your misgivings.
My village is slowly emerging into spring. Mouseville 🐁 is now green and flowering 🌷🍀🌼🌱🌻🌸🌿🌷. It's a working progress. Thanks for asking. Take care. xx
If you can afford it, you won't have to wait long for a private consultation. And they will organize tests etc. On the nhs for you. Ask doc. How much it costs. It might not be as expensive as you think. It doesn't mean you won't have to wait after that unless you pay private again, but at least it will get the ball rolling. Hope that helps. Pat xxx
Occasionally, pain in hands and other joints can be caused by prescription drugs. I've been on 2 drugs at different times that have caused me pain in my hands and arm. And I wore wrist splints on both right and left hands for several months even after I had come off the drugs for Osteoporosis.
I have thickening of a couple of joints in my hands caused by osteoarthritis due to mechanical injury, plus issues in other joints for the same reason. My GP just gives me pain killers for it. The original cause for many of the aches and pains was a serious road accident in 1977.
Shortly after my diagnosis of IPF I was referred to a rheumatologist to see if there was an auto immune link. The blood tests etc took a year before they finally gave me a diagnosis of osteoarthritis. This is a natural result of ageing. It flares up and often causes horrendous pain. I am managing this with occasional pain killers,gentle exercise etc. I had no problem being referred for this in 2017 so presume the criteria has changed? Hope they sort you out soon. The pulmonary rehab helps too.
Its nice to see that you at least had joined up thinking when you where first diagnosed with IPF. Nothing like that happened with my OB. even though its a very rare disease. Hopefully my is osteo. but its blooming painful. Yes rehab was good, although it was mid course this all started. But then I was throwing my self at it like a thing possessed.!
I saw my gp today as I moved up from mild to moderate COPD last year
and wanted to ensure the frequency of last years episodes were not repeated.
I was refused a blood test to check my vitamins ( as I have been on PPIS long term,) also refused a chest X-ray (I had 6 flare ups last year), also refused a scan, sputum test and basically told I could just exercise more to help minimise my flare ups.
I understand your comment about being given the run around.
Don’t see what other reason there can be.
Hoping things improve for you.
For me I think it is time to change to a more sympathetic gp.
Oh dear, thats weepable isn't it? Somehow a gp change may be what you need. I however, have the area health authority guidelines, dragging me by the short and curlies.
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