On top of that, how come the results are back early, when I was told they'd take 2 weeks if all was normal? I only had them done a week ago! So now when I see the doctor next week, I suppose I'll be told the pain is "all in my head", that there's nothing wrong with me. If that's the case, my pain killers can all go back to the pharmacy! After all, why would I need them for "imagined pain"?
As you can probably tell, this whole thing is getting me down. X
RA is unlikely to show up on x-rays unless you have joint erosions. So, IMO x-rays are bloody useless. I had a nuclear bone scan - they injected radioactive iodine into me, scanned my whole body an hour later and then the scan lit up where they was inflammation. Those scans tend to be expensive as do MRIs (which I've had privately) but more and more hospitals are getting on board with ultrasound scans - cheap, quick and effective. A clear x-ray doesn't mean you don't have RA, it just means that fortunately, you do not have any bony damage. Getting a dx is hard, I feel for you. x
I can pretty much guarantee that I won't get a referral on the strength of the x ~ ray results. The NHS here in South East England is awful at times, and I can see me being in my 60s with gnarled games and feet before my pain etc is taken seriously~I'm only 44.
I've had enough, and just feel I might as well suffer in silence. It's not enough that Naproxen is working where morphine has failed to reduce the pain. I've not taken oramorph since starting on Naproxen, as I've not needed it. Obviously because morphine does nothing for inflammation!
If I don't get a referral next week, I'll just give up trying. X
Where abouts in the SE are you, if you don't mind me asking? Btw, you are entitled to a second specialist opinion on the NHS - not everyone knows this.
Bexhill, East Sussex hun. The doc I've been seeing about the joint problems isn't my usual doctor, as he is definitely crap. I don't know if I'd be able to see a doctor at one of the other two practices locally. I've thought of calling the hospital myself and seeing if I can talk to someone in rheumatology for advice about referral. X
the fact that naproxen (an antiinflammatory) works and oromorph (an opiod pain killer) doesnt is a big factor in proving that it is actually inflammatory arthritis of some kind rather than OA or fibro.
My thoughts exactly. I've been considering stopping the MS T continus as well, as they do nothing for me (despite being on 80mg a day. Says it all really). The downside is the Naproxen affect my asthma and bit. Itold the doc this, she listened to my chest and said I'ok to keep taking them. X
Hi Sarah don't give up I had the same problem as you , I was told after xrays there was nothing wrong with me, but I didn't give up u must just keep on at your gp ask them about a ultrasound scan, it took a year of me just keeping on to my Dr to get diagnosed with RA after having a ultrasound scan, they do make you feel as if its all in your head, but you no your own body . Good luck don't give up . X
I'm feeling like they use my depression as a tool with which to label me as a faker. I wish there was a test that shows how much pain a person is in, or how fatigued they are. Clearly the fact that my inflammatory markers have been elevated was not enough, coupled with the fact that they were slightly lower on the last blood test. Why should we wait til the damage has started being done before we get treated? X
I have a set of xrays that the NHS said was totally normal, and two private radiologists and a private rheumatologist have all agreed show enough damage to diagnose ankylosing spondylitis. Make sure your rheumatologist has actually looked at them themselves, preferably in consultation with a musculoskeletal radiologist.
I'm still waiting for a doctor to get off their bottoms, see that i obviously have symptoms of rheumatoid arthritis, and refer me. They all seem to think they're experts and can diagnose me themselves, but all the time they're playing Big Chief, they're wasting time. The truth is they don't know, but referring me would be admitting that. X
I've used the private route twice in my life, once when I was getting nowhere with the initial diagnosis and once to clarify a skin reaction which it turned out had nothing to do with RA. If you can afford it a single consultation might get you an examination and a report which could help things to move. The hospital drs tend not to like you going for a private consultation, but many of them have private clinics. I've not regretted it - so far.
Sorry you're being messed about, it's frustrating and depressing
Oh my goodness you sound like me, although I have seen the rheumy who told me I had sero negative RA and then on Wednesday after being in immunosuppressants for 5 weeks and havng a rare side adverse side effect, told me no you don't have it and they have no idea what is wrong with me. Offered to give me anti depressants next month as that may help if it is a nerve problem. NO WAY I am not going to be fobbed off on antidepressants and go away and shut up, Good luck, keep pushing, I intend to.
Oh Sarah I really do feel for you. I'm in similar boat in a way. Although I do at least have a rheumy diagnosis of RA but now I've failed/ not tolerated 3 DMARDs I'm off all drugs and it's coming back - but not in the form of swollen looking joints or excruciating pain - just as a flu like ache - particularly in my feet which means I'm hobbling about like an old lady now.
I know that for me the next step is anti-tnfs but also know that with pain this vague and invisible I am very unlikely to qualify. I have had two lots of x-rays of my hands in the past 3 years and both have shown no erosions. As with you the radiographer said that she could see stuff in the x-rays hint hint (she was hinting at OA though) and told me my hands didn't look like RA hands to her which flummoxed me. The rheumy looked at these x-rays with me and said that he could see nothing definitive at all but he assured me that erosion doesn't show up until it's quite advanced with RA. The whole point of early diagnosis and treatment is to avoid erosion so it's crazy when it's used as a diagnostic tool for heaven's sake?!
I'm pushing for ultrasound or MRI rather than agreeing to have a steroid injection now. I have also just started on anti-depressants for severe secondary depression. It's hardly surprising I'm depressed as the GP acknowledges - I've had burning ants (peripheral neuropathy) and numbness for 7 weeks just starting to fade at last - all because of Methotrexate it seems. So I too am worried that when my rheumy learns I'm being treated for depression he will dismiss my aches and pains as fibro or something to do with my state of mind.
I am getting private blood tests done without my GP's knowledge to eliminate vitamin or mineral defficiencies or thyroid (T3) from my mind finally. It is a kind of hell I know. I'm trying not to get myself worked up but when I read of you being in the same place I was in a few years ago and am back in now (almost) I do get so mad!
Take care and hang in there. Tilda x
Doctors seem to have a monopoly get out of jail free card with me, as I have an under active thyroid (it was someone at N R A S who at last told me that is an auto immune condition in itself), and fibromyalgia (really?). So they get to use those as excuses for my symptoms. That's why I feel i'll never get a referral and appropriate treatment. It just makes me feel they think I'm imagining some of the symptoms. X
I have learned a lot in my 3 years since coming to this site and also joining other communities for arthritis and various conditions on here. I think knowledge is the answer but it's also a burden because we can end up knowing more about our conditions than GPs and at the same time we also learn about the conditions they give us when they can't find a more specific label. I'm sure fibro does exist and ME too but I think it's all too common for people to be told they have these when in fact something else is actually very slowly but surely affecting our immune systems. However - given that we both have hypothyroidism and that is a fact then perhaps you need to go to Thyroid Uk's healthunlocked community for some support and find out whether your hypothyroidism is the autoimmune one or not. I've never actually found this out for myself either - it is just presumed to be I think. There is an antibody test that can tell you which type you have Sarah so perhaps you should start there for the time being and then build up your case as I'm trying to do. If you do have Hashimoto's then you may well also have other autoimmune conditions so this would be a very good way of proving them wrong about the Fibro? Although you need to bear in mind that it is very possible to have secondary Fibro with RA too. I think that's probably what this flu-like ache I am suffering from is - and in a world bound by labels it has just been put down as a common symptom of RA. Tilda x
Confession. I've never heard of Hashimoto's.
What is that? Just goes to show how much doctors keep from us sometimes. And once one doctor puts something on your file, every one after seems to treat you the same way. Mud sticks as they say. I just hope they're quicker at diagnosing my inflammatory arthritis than they were with my hypothyroidism. X
Go to Thyroid UK's HU community (look at green bar above this post and click on communities and find the thyroid uk one. Hashmito's is the autoimmune type of Hypothyroidism. I'm really hopeless on this matter too but one of the tests I'm paying to have soon is called the T3. I believe a lot of aches and pains in joints and elsewhere can come from being insufficiently medicated or incorrectly medicated for thyroid conditions and this is very common indeed. Do some research into this - Dr Toft's book on the Thyroid is very cheap and easy to read (BMA publication) and worth gemming up if you have this too because it might account for some of your symptoms, if not all. GPs are really hopelessly out of date where the thyroid is concerned so you may have to do all this yourself and medicate accordingly for a while to see if it makes a difference. I am still too ignorant about it myself to advise you but I do know it's worth finding out about while you are in limbo just now re diagnosis. Tilda x
Thanks tilda. It's great to know someone is totally on my wavelength. I have a memory of my paediatric endo (cousin of the~is it former now?~president of Egypt and an ardent Arsenal supporter lol) telling me I was way too sparky to have been suffering for the first 11 months of my life without diagnosis. I wish that were on my file, then doctors might actually take me seriously. Do you happen to know if being hyper mobile could have any bearing on my joints problems? X
Sorry Sarah that's really an area that I know nothing about. There were some hypermobile people on here when I first started but perhaps worth asking as a question too and others might come forward? I know there are loads on here with thyroid problems too. Tilda x
That's okay. I put a question on thyroid UK, so maybe I'll get more ammunition with which to attack my doctor lol.
I have a colour face theme for expressing the level of pain, stiffness, fatigue etc each day. Today is a Blue Face Day; pain is at 8 1/2/10 and I feel wiped out. I never really get rid of the stiffness, it just reduces to a manageable level. X
What X-ray was it. Was it your feet? I sometimes think like that when I see my Professor. He is very good but I feel a little intimated sometimes. MyGP is wonderful though. I am on tramadol and morphine and pain is so awful as you well know. I hope you get the answers you want when you go...let us know. I wish you well.
They were on my hands. Do doctors think as soon as people start getting rheumy symptoms, erosion miraculously appear on the first x ~ ray, or what? I've had symptoms for about 4 months (really bothersome), in which time I've had 3 blood tests, but no diagnosis or referral. X
I have tyroid trouble too I'm on 75mlg a day. From what I've learned, (I think I've got this correct) is that tyroid adds to feeling horrible and tired. The fatigue is phenomenal.
I'm on 200mcg thyroxine daily. The doctor puts my fatigue down to fibro, but the fact that I'm anaemic down to my hypothyroidism. It just seems very convenient for the doctors to have other conditions to blame symptoms on! X
Oh dear poor you..it's really horrible when you're not sure. I'm sure sometimes they think..."why is she complaining of pain she's on all this medication". But no one would make up these symptoms. I think I had R/A for quite a few years before they found it. I used to ride horses and fell off quite a lot so put pain down to that and for a couple of years when I ended up having X-rays I was told is was arthritis, it was a lady Locum doctor who said to me 8 years ago I think you may have R/A...lets check it out, so I do feel so sorry for you to be in this position. Is your own GP good? I am very lucky in that department.x
He's awful! Although the doc I went to for a second opinion is
Lovely, and very understanding, she's none the wiser about rheumatoid. My inflammatory markers go down
Just a bit, and it's definitely not R A.
I feel like I'm going round in circles and banging my head against a brick wall. X
Weight to blame
Bad pain under bottom, can't walk properly.
Something on another thread, got me thinking
Gutted
Fran Takes the Bulls (Rheumy, Chest, GP Docs) By the Horns
