well farewell everyone I don't have RA

Went to rheumy registrar today who tells me the MRI on my right hand showed no inflammation so I don't have RA. They have no idea what is wrong with me and all he could come up with is a pain syndrome and would I like to go to the pain clinic and do cognitive behavior therapy. No I said I don;t believe in it and it is rubbish. So I will just go away quietly now and just put up with it now as no one can figure out what the hell I have. The arava gave me rare side effects and as I don't have Ra I can stop it. He will see me in a month and consider antidepressants I won't take them as I am already fat and don 't want to put on any more weight or feel dozy. It has been lovely to chat to you all and I hope you all can get to pain free place I apparently never will.

67 Replies

  • Oh no ....this sounds ridiculous you poor thing ..I would defo get a 2nd opinion and don't put up with this , almost like they are saying u are depressed and imagining it all - what an insult ! Yes it's good news u have no inflammation but u don't always have inflammation with RA all the time .....Please please don't go anywhere just yet ...whatever it is you will get better really , please think about a 2nd opinion , thinking of you xxx

  • No he said as I don't have any antibodies or inflammation I don't have any arthralgia but then why did they tell me I have hot spots all over my body in the full body scan. I have already been down the road of all in the mind and I said well if it is all in my mind then why do I have swelling? Why do I feel in so much pain? why am I so fatigued. I cannot stop crying and feel so totally let down and alone now and SO FED UP

  • ask for a second opinion from a spondyloarthritis specialist - you may have had RA ruled out, but not spondy. If you have hot spots at enthesitis sites then they will light up like a christmas tree on the bone scan in very specific places. If there are any hot spots at all in the spine or sacroiliac joint areas or around the breastbone, or the heels, then definitely insist on seeing a spondy specialist, as those areas are classic.

  • I don't know what lit up my GP told me I had hot spots all over my body and now registrar says no arthritis because of MRI result on right hand. WTH??? I have costiochronditis not sure what other areas lit up apparently it was impressive. We have very few specialists here and the rheumy does everyone.

  • You mentioned a pain syndrome, was it fibromyalgia? It is really important to talk this out before you take off! I have RA and fibromyalgia, the symptoms are similar but treatment is different!

  • No it was inexperienced registrar who tried to re diagnose me with fibro and I refused to accept it as I do not have the symptoms of fibro.

  • Didn't realize this was an old post lol. Do you have a proper diagnosis now?

  • It was RA and now PsA until it changes again I guess

  • Well is that good news you don't have RA or not, I am sad for you still being in limbo, after trying the strong mess you must be gutted. But pain is pain RA or not ! So u are most welcome to keep chatting anyway ! Xxxx let us know how ur getting on too xx

  • Yes I am glad about that but I am also gutted as I am back to stage one again after 18 months of testing etc and being told one thing then another and now well we have no idea what is wrong with you. I am more than gutted I am feeling very very very alone and let down

  • I can totally understand that, who gave u the diagnosis was it gp or Rheumy. Did u feel in pain when u got the MRI or was it settled on that day?

  • rheumy registrar. I go back in a month and he said I can take antidepressants to try and block nerves but I don't want to take something that will make me dozy and out of it.

  • Ok so a few things that I am sure you have thought of. They might be wrong or right but leaving you is not an option. You can ask the Rheumy team to let u speak to a consultant, stand firm cos they will say registrars are competence. But tell them you are so badly affected by this decision that you really need to speak to a consultant urgently. You could also go and speak to your GP, tell him what's happened, and see what they suggest. It is possible if they agree with the rheumatology that they immediately refer you for more tests or to a pain specialist. I think being honest with them and trying to be very direct with them at the moment will be helpful for you in the long term. Antidepressant drugs take a little while to Kick in however they are useful for pain relief in some people. But if rheumatology think it's something else, it's the pain you need to deal with. I think there are too many unanswered questions for them just to tell you to take one tablet and go home. Don't feel alone, we are all here for you, and you really need to go and get some proper advice from the head of the rheumatology team or from the GP today.

    There is also a chance that you Ra had cooled down That day and also they need to find out what hotspots are about, and any other symptoms you have if they are not rheumatoid arthritis, they definitely needs investigation.

  • I will try and get to my GP tomorrow I am in Oz. I cannot get in to rheumy you only get to see registrar. It is BS as blood tests show raised levels indicating inflammation, I have a high calcium level and you can see the swelling in my hands, legs, feet etc. They operate on if we don't know we will shuffle you along to someone else and wash our hands of you, I am over it I give up I have had enough.

  • Well that just proves that there is something that is causing your body to be stressed. I think today give yourself a break be kind to yourself and tomorrow have a good chat with the GP. Maybe today get your thoughts together and write down a list of everything that has been causing you problems? Because when you see him tomorrow you may be upset and forgets what you wanted to say in the long run.

  • I just don't understand also, why after all this time on rheumatoid arthritis drugs and after the original diagnosis that now they have changed their minds. Do seek help today please, if I were you I just wouldn't sit on it, and please don't feeling alone, you have had enough of that with this illness. Hugs A xx

  • I have only been on arava for 5 1/2 weeks it has taken them that long to do anything. There is no one else to see as it takes a year to get ion to a rheumy here if you can even get an appt. so I am not starting all over again. I think I just need to accept that there is nothing anyone can do as they have no idea what is wrong with me. I will just live on panadol osteo til it kills my liver and then I will at least go out soone. I have no quality of life now so I don't care if I die younger at least I won't have to put up with the pain any more

  • Well you could do that I suppose , or if you could give you GP ring then and see them tomorrow because seriously in sight seeing you can live with pain and live on Panadol but clearly that isn't the way to go. I know you're really upset today and so would I be and I feel really sorry about how you have been treated. So maybe rest today take time to think about things at the end of the day you are a lovely person, you have said you have a lovely family, you just need to find out what's causing your illness. The only way to do that is take time to restock, get some help from your GP, and a good idea maybe is to talk to their NRAs helpline. When I have had to days and weeks where I felt like you I have phoned them rather than talk to my family and they were terrifically helpful. The other thing they have is telephone volunteers who are people with rheumatoid arthritis who have been through similar situation to yourself. I think this will really help you get through the next couple of days until you decide to get some help with your pain and try and get some sort of diagnosis. It has obviously hate you between the eyes very hard and I'm sure it does to a lot of people when they either first get the diagnosis or are told that this isn't the real diagnosis. But then after a few days I really feel getting in touch with your GP and asking him where you go from here would be really beneficial to you. I don't think it would be possible for a long to just keep taking Panadol, I think this would cause you too much pain and misery. You are far too lovely and popular on here was to let you go without talking to you and at least saying okay this has happened but there are ways around it. Xxx

  • You may have to also look at the timings of some of these replies, as some of the replies are before the ones that are shown on the text.

  • Hi Allanah thank you for your support I really appreciate it. I will talk to my Gp tomorrow, we have no NrAS or supports in Oz and as I don't have it it would be a bit pointless talking to them anyway. I am just going to have to suck it up and live with constant debilitating pain and swelling unable to have a normal life and that is what I have to look forward to. I can only take panadol osteo and have been taking for 18 months now. My Gp knows how hopeless they rheumy is so I feel that I have exhausted my options except to accept the fact that I will never know what is wrong with me and I will never get treated properly I just have to get that in to my brain. I am just too devastated tonight to have been told once again after thinking I finally had an answer that there is no answer,

  • Hey don't give up. It's not something you have to live with at all! Rest up tonight and tomorrow give you GP a call. There's obviously something wrong isn't there so what you need to do otherwise it will be very hard for you, is to have some more tests. I know that something you probably don't want to hear right now that, but at the end of the day they will either decided that the MRI wasn't showing what you should or that there is something else going on that need some help in your body. I don't think the osteoporosis pills u been taking have helped that much have they? So be strong tomorrow, push them for more help, tell them you need to find out what's wrong and what's causing the differences in your blood tests and other results. And tonight and relax try and be kind to yourself, they will eventually get to the bottom of it I am sure there, it's just such a shame you need to be patient for a bit longer. Okay? Sending hugs all the way to oz xx

  • thanks Allanah I won't see rhuemy registrar until next month now. My Gp won't be able to do anything and I really think I just need to give up and accept I will get no help

  • Ah Allanah is so lovely and she she is right ...you stand your ground and it's your body only you know how you feel ..Yes stay strong and they will get to the bottom of it all and things will get better . Just keep pushing and don't go anywhere , we are all here for you xxx

  • Thanks Claireyj I cannot push any more I have come to the end of the road or rather gone in a circle I am done and there is nothing more to push for they don;t know what is wrong with me and probably won't look any further now,they are not willing to do anything more so that is it.

  • Hi well maybe the rheumatology won't but there are other specialities mate, don't assume nothing can be done please, get some rest and make your decisions tomorrow. Lots of love Ax

  • Oh poor you for having this happen - it's my dread that they change their minds about me so I completely understand. It is hard when you have a more cut and dry case of RA to comprehend how anyone can want and need this label I feel but I dread being told I have Fibromyalgia or ME because of the lack of medical support and the fact that there are no drugs to help or stall these conditions so they feel like the last frontier. But if your doctors did say Fibro or ME then at least you know what is going on and can join forums and research these similar conditions which also cause huge amounts of pain and fatigue and uncertainty. It's the not knowing that is so very hard to bear I feel? So perhaps, when you are feeling a bit less despairing, you could do some research into other similar conditions that don't necessarily affect the bloods, such as Palindromic Rheumatism and Fibro - but do cause sufferers just as much pain. And then if you do feel you relate to some of them you could ask the rheumy registrar next time you see them? I

    But if your inflammatory markers are elevated then this must mean there is some inflammation going on even if it isn't in your joints? I was told that I had no inflamed joints last time I saw my rheumy in July and yet he insisted that if I stopped taking MTX it would all come back with a vengeance. I have been off it for 7 weeks and have decided to behave as if it has gone away each day although I'm actually in quite a lot of very generalised pain presently - especially on waking - so this is getting harder. But without swollen joints to show for myself I feel disbelieved - although they all believe me because of my inflammatory markers and because I had such classic RA swelling when I was diagnosed.

    So hang in there somehow please - I know exactly how you are feeling because I would feel the same in your shoes but things will get better when you've rested and recovered from the shock. There are other inflammatory autoimmune diseases such as Lupus and conditions like Lyme disease which often take years to be diagnosed and people are dismissed or told they have hypochondria - only to find that they do in fact have a serious disease that had been going undiagnosed and untreated for decades. So keep reading and learning and pushing for yourself and for others in your situation when you feel you can again.

    As Allanah so rightly says you don't have to go - there several others in your situation too on here - John Minka , JoJo and Mistymeana (I think?) and Earthwitch to name but a few. The site is richer for having them around I feel. Tilda xx

  • Hi Tilda I don't have Lupus either apparently and we supposedly don't have lyme in Oz I have never been bitten by a tck and I tested negative to that/ What I don't understand is that yoiu can see the swelling in my hands and knees and I have high calcium in my bloods as well as inflammatory markers. with fibro etc you don't have that you just feel like crap nothing shows on any tests.

  • I agree entirely. My GP and I discussed Fibro yesterday and she said that my ESR is always too high to indicate Fibro. When diagnosed I had quite classic synovial swelling. I don't think you should just lie back in pain and misery and give up just because some registrar is getting above himself. I didn't really mean that you might have Lupus but a consultant rheumy can diagnose many other conditions such as Lupus, Lyme and Vasculitis - which comes in many different forms too - not to mention PsA, Ankylosing Spondylitis, Stills, Sjogrens, thyroid conditions, Pernnicous Anaemia etc etc.

    What I'm trying to say is that there are many different types of inflammatory arthritis - some of which come with swollen hands but some of which have little visibly inflammation. So simply looking at a person's wrist (only one wrist at that?) is not enough to determine whether or not you have RA - let alone ruling out one of the other many different types of inflammatory arthritis. Only a consultant rheumatologist can rule these things out or diagnose them and I really hope you can find the strength to keep pushing for better treatment and proper answers. Tilda x

  • I am angry and that will motivate me. A year has now passed since I started at the hospital, 18 months since this all started so I am well and truly over being told with a smile on their faces Oh you don't have this and now to be told oops we put you on toxic drugs that gave you a rare side effect so stop taking them and BTW you don't have RA and we have no idea what you have. I do feel that they will give up and really I just keep taking high levels of paracetamol so I can get out of bed and go to work it is such a wonderful life I have!

  • Be angry but also be sure to focus on where and how to channel your anger. Otherwise you will end up snapping at the hand that is trying to help and support you Someonesmother.

  • Oh I am never snappy at them I am calm and precise and and very focused. I just keep stating the same thing over and over. I look them directly in the eye and don;t waver. It really unnerves a lot of them as women aren't supposed to behave like that apparently

  • Test showing nothing isn't always true for fibromyalgia! I was diagnosed over 7 years ago, and there are treatments for it! The first med that is generally tried is Cymbalta, then if no luck it's Lyrica, Savella, gabapentin, wellbutrin, amatrptilline etc.

    If you give up now you will definitely not find any relief!

  • Hi Mandy8175 I fought the diagnosis with that registrar and in fact had to do the same thing again with another new registrar last year who also decided I had fibro, due to laziness in diagnosis. They get baffled and try and label you with fibro so you go away. I fought back both times and went to the head of rheumatology who I also see. Unfortunately I cannot take any of the drugs you mention they screw with my head so badly that taking them has no value for me. I tried lyrica and it was evil. I would never touch it again. I recently tried endep for nerve issues and nearly went in to a coma due to the sleepiness it caused so that is out too. I have been re-diagnosed for the moment with PsA so that I can try cosentyx, which I am waiting to work. Head of rheumy said it may take 10 years for my disease to show itself properly and in the meantime he will treat me as though I have RA or PsA.

  • I am glad to hear you have a rheumatologist that tries to help! I will say that fibromyalgia is not always a junk diagnosis, I have received the same diagnosis from about 15 doctors in 4 states! I agree that some doctors say that just to fob you off, but not all cases are false! When I see a new doctor I do not say anything about fibromyalgia until they do!

  • It would have been a junk diagnosis for me as the registrars would have just fobbed me off to a pain clinic and I would have never received the proper care again.

  • you've had some amazing support, what a wonderful bunch! I'm also so sorry for what your going through, its worse when you don't know what your dealing with. please feel free to tell me to shut up and mind my own business but the CBT, what do you have to loose? there must be some evidence of this being successful if it's being suggested, okay it's a long shot but if it were me (yes I am a little gullible) I would give it a go..... well to be truthful I did give it a go many years ago for what may have been fibromyalgia and what I got was 7 pain free years until RA came along!

    What helped was it that it was explained to me exactly how it would work before I started so I had an understanding of how the body/mind can and does cause us so much pain. It changed my life.

    please, when you have got your head round this news, have a think and do some research?

    all the best xx

  • CBTis a cop out for them and then they will just pass me along and not look or try and find out what is actually wrong with me, I will not even go there I don't believe in it and I am not going to be told if I change my way of thinking that I have nothing wrong that I will be fine. Sorry same reason I won't take anti depressants adn go away and be quiet.

  • ok, apologies and good luck

  • Sorry if i sounded a bit rough there apologies it is just my frustration because 12 months ago I was in the same position with another specialist who told me it was all due to depression and anxiety both of which I don't have and he wanted me to take anti depressants and have CBT. It was his way of fobbing me off and so I would go away as he had no idea what was wrong with me,.I have been to a psychologist who told me I have very good coping skills and am not depressed.

  • I think I may be in the same boat as you! I was at the rheumy this morning & they are wondering if I have severe inflammatory osteo arthritis rather than RA!! It's because I haven't shown any real improvement & my bloods are normal. I had more bloods taken today & a back xray & have got to have a hand scan.

    I'm not sure I want the diagnosis of severe OA as I'm not sure there is any treatment & I think it could only get worse :(

    I've already had one knee replacement & am waiting for the other knee to be done in the next month or so.

    I think you need to ask for a second opinion & not get fobbed off with antidepressants, although I do wonder if they want to try Amytriptilline - which is used for neuropathic pain (nerve Pain) I'm on it & it does help.

    Don;t disappear from here until you've got a better diagnosis & I think there's a lot of very good support here!

    But I know how you feel - I'm feeling the same today!

  • Pauline I don't want to go on anti depressants I cannot afford to put on any more weight and I don't want to feel like a zombie. It is their easy way out because I will then be too docile and complacent to fight them for a proper diagnosis. My blood work shows inflammatory markers adn hugh calcium. I do not have parathyroid or thyroid problems either.

  • I have to say that, having recently started antidepressants, I'm having to fight like mad not to eat more with the increase in appetite and I do feel dulled and slightly zombified so I'm with you on this although I do know that I was becoming fairly self-destructive and do need them to get back into some sort of sleep pattern somehow.

    How high were your blood markers in relation to your lab's normal levels do you know? What my GP practice considers to be raised and what I and my rheumy consider raised is a bit at odds and I think the normal range can sometimes be very general. The normal range depends on your gender and age too.

    Amitriptyline isn't used as an antidepressant any longer - it is used at lower doses to reduce neuropathic pain and I found it really helpful in the run up to my diagnosis. Otherwise I have to say that I have found my anger quite useful to harness where the medical profession is concerned.

    And I don't want to take drugs that give my doctors a let out either. If they want to test whether or not my current pain is caused by RA or is just something else, then they can use ultrasound or MRI. I will not just take steroids again in order to prove or disprove that my RA is returning now I'm off RA meds. So on the soft soaping I'm with you all the way! Tilda x

  • It was rheumy who do bloods and say raised along with high calcium, no thyroid or paarathyroid problems. I could not work feeling like a zombie I have enough trouble with how I feel already. He says to me yesterday well steroids didn't make any difference so you cant have arthritis I said No that is wrong. when I took them time before last they were like magic bullets I felt great, last time I developed a reaction to them and they made me feel so unwell I would have had no idea if they worked as I felt so unwell. My GP not keen on me taking amiltirp I am huge already and can;t afford to put on more weight but not sure what rheumy regsistrar is wanting to put me on.

  • I'm not on Amitriptyline anymore but am now on a proper antidepressant. Amitrip doesn't make you fatter at all - unlike the one I'm on now - it just helps with horrible neuralgia type pain for some people. It can make you very tired the next day but if you take it early enough this is something you can get around.

    Do you have print outs of your blood results? If not can you get them perhaps because it might help you to further investigate what is happening and provide you to prevent them dismissing your issues as psychological next time you meet?

  • My GP told me last time the previous specialist told me it was all in my head and wanted to put me on amiltirp that it causes weight gain and was not happy for me to go on them he is the only one that has been constant through out this. I have no results the hospital won't give them to you. My GP has some but not all.

  • Your GP sounds good and I would see him and also ask if he can give you some print outs of your ESR and CRP - I don't know about calcium levels but if they are relevant then get then too? Good luck. X

  • Thanks Tilda I am going to try and see GP before work this morning feel like taking the day off but I don't think I can. I am not sure how many of the test results he has

  • Good luck! I'm just off to bed now - its getting late here for one such as me! X

  • 7.30am here off to GP shortly. Have a good sleep thanks for your support I need it ATM.

  • Well GP is horrified by what i was told yesterday and is now testing for spondlarthropy and retesting for Lyme disease and some mozzie borne diseases. I asked him to call the rheumy and talk to them

  • Sorry, I'm late to your post but heartily pleased to hear that your GP is on your side and not taking no for an answer! If there's inflammation etc then there is something going on. Do you have the option of a 2nd Opinion? - I'm not sure how your health service works apart from that you have to buy insurance. Don't disappear from this site - you need and deserve the support to be found on here:-}

    Cece x

  • Thanks Cece yes thank heavens he is intelligent. it is hard to find a rheumy with open books here.

  • Oh I feel for you... if you feel there is something going wrong with your body THERE IS... and dont let them tell you different. You dont choose to be ill, but there is a definite correlation between not being believed, not finding a diagnosis (whatever it is) and getting depressed.. what a surprise. Have you tried anythig more holistic like acupuncture or cranio-sacral therapy.. worth a go. After I had meningitis and still felt ill 2 years later I saw an acupuncturist |(trained in the UK by a registered body) and it was like night and day. She helped with my anxiety, pain nausea and general well being. Similarlhy cranio-sacral therapy, it was life changing for me and I am not easily fooled and as a physiotherapist question everything thoroughly before allowing anyone to treat me. It has to been drugs hands down! I guess the bad news is that none of this is free or at least not in UK, I used my precious savings for these treatments whenever I needed them, and still do, its worth every single penny. I wish you luck and eventual resolution to this.

  • Thanks Canada I am not going to accept I may have a pain syndrome and be fobbed off to a pain clinic I want to get to the bottom of why I am having all these symptoms. Not in to natural therapies really adn very expensive here so I don't have extra funds to pay for it.

  • Glad your GP is on the case. Hang on in there in what is an awful situation. xxx

  • I am trying to at least I know I am not imagining everything which is how you feel after being told that twice now. glad my GP is an eminently sensible person

  • I am so pleased that at last sombody is listening to you ....that's a start at least and hopefully now they can help you x

  • well my GP does not sure about the rheumy. I think my GP will call the rheumy and have a chat to him

  • Hi, just wanted to say that this is terrible the way you have being treated by the Rheumy and I am glad that your GP is going to try and find out what is wrong with you.

    I just wanted to ask you about the "high calcium in your blood" , if they are saying it is not your thyroid/parathyroid glands then what is causing it. Its not normal to have high calcium in your blood so why are they not finding out why this is the case.

    I have Hyperparathyroidism along with RA and I can never tell which of these are causing me pain. I really think your doctor should be persuing this.

    Thinking of you

    Mary x

  • Thanks Mary. Yes my GP is pursuing it they have been high since last year some time but no one can pin point why.

  • Hi Someonesmother

    I'm really sorry to hear about the problems you're having and it must have been a real shock to suddenly be told this isn't what you have!! I can completely understand how negative this made you feel, but it's really good to hear that your GP was shocked by what you were told and it sounds like they are going to look into this for you. It can make such a difference having a healthcare professional who is on your side.

    Whether it turns out to be RA or something else, don't feel you need to stop using this forum any time soon, as even if it isn't RA, you clearly have symptoms in common with others on here, and we really want you to get the support you need at such a difficult time.

    I hope something positive, such as a firm diagnosis or more promising treatment options happens soon!

    Kind regards


    (NRAS Helpline)

  • Thanks Victoria my GP is pursuing spondylathrapies? now.

  • Hi Someonesmother. I am really pleased to learn that your GP is on your side and will hopefully get to the bottom of things with you soon. Inspired by your attitude I have spent the morning being proactive about myself too. I can feel my inflammatory levels rising just now and am not happy that all I'm being offered at this stage is a steroid injection when there are still tests that my GP won't take for Vitamin D, T3 and MMA - all of which might explain my parasthesia and rise in aches and pains and stiffness. I know the likelihood is that in my case my feeling of general unwellness is probably due to RA coming back but as I am hypothyroid and my levels are only on the margins of normal and as I still have a lot of tingle going on I feel that my rheumy and GPs should be doing some ultrasound and imaging and also testing for these three things more thoroughly because it would be so much easier and cheaper to take a bit more Levothyroxine, some B12 suppliments and some vitamin D than to have to get my RA in such a state that I qualify for anti-tnf drugs. I also feel they should be looking at the Spondyloarthritis family and doing an MRI of my spine to rule out inflammatory issues there too as your GP has suggested for you as well.

    So I'm using this drug-free time (well apart from anti-d's and levo) to go to a private clinic and am taking advice on which tests might be useful in relation to my symptoms and most recent blood results. I can ill afford this but for my own peace of mind I'm splashing out on this one occasion on things that my GPs should really be taking routinely for me I feel!

    So thanks for giving me back some of my mojo inadvertently! And take heart please from all the lovely and supportive comments you've had. As Victoria says above do stay please around with us. Tilda x

  • Yes Thanks Tilda and I am glad you are pushing back too. I sort of felt like I was a kid telling on the rheumy yesterday but to be dismissed like that was just devastating. He originally said oh I think we will get you to come back in 6 months and I said well I will have topped my self by then and meant it so he changed his mind to a month,. Good luck and yes sometime to get listened to we end up paying exorbitant prices. That is my next step private rheumy it may take a year or so to get in though

  • Awww u poor thing I know how u feel just keep pushing for further treatments I know it's soooo frustrating all my kind regards deejojo xx

  • They should not on one result say you do not have R A ,it isn't always active, my Immflamation was 100 plus when I was referred to a Rheumatologist 7yrs ago Earlier this year after a bad fall my level was 200! but it as also been as low as 29/ another result was 69 so just because it is not active at this time is not i would have thought a definite conclusion to say You do Not have R A. Good luck.

  • Thanks Janice it was a lazy registrar who tried to re diagnose me. This post is more than 4 years old and I have been through the same thing again with another new gung ho registrar. I just go straight back to the head of rheumatology now and make a complaint about them.

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