I have been diagnosed with Serro negative RA about a year ago and went on meds like methotrexate, plaquinil and prednisone...meth made me sick so I stopped taking it about 6 months in and continued with the rest...the rheumy was pleased with results as the inflammation had gone down in my joints but I was still in constant daily excruciating pain that was even worse then when I started taking the meds...about two weeks ago I got some sort of flu and I was wiped out for a few days , just sitting on the couch even breathing was a chore and I was totally out of energy with fainting spells. I also had shooting pains in the upper right side of my chest and back. I was really worried so I decided to go see a GP just to check me out and see what was going on with me as a whole not just RA related.
I went in, explained my medical history and also the symptoms that brought me to see him that day. The doc did a very quick exam and then told me I am totally healthy, a perfect picture of health and that he doesn't even think I have RA because I don't have any stiffness in my hands. He told me I am probably depressed and that's what's causing the pain.
I left bewildered and if I wasn't depressed before I sure was now!!!
Don't get me wrong....ever since I got diagnosed with RA and having to take all the God awful medication, all I wished for was to be healthy and for this to go away. However, now this guy tells me I'm fine and healthy and I can't believe it and I think he is full of it...very strange situation!
I am in a lot of pain daily! Mostly in my hips and feet. Other joins hurt as well . Although my hands have so far not hurt me or felt stiff I did have inflammation in the finger joints that has gone down now...how can I not have this? And if I truly didn't have it then why was I diagnosed and put on all this horrible medication that can wreak havoc on my body??? Not to mention that my Rheumatologist is a highly respected professional with many years of experience. The GPs logic was that since there is no stiffness in my hands and the pain comes and goes and isn't always present in the morning then that cannot be RA...but then what is remission if not a period of absence of pain and healing???!!!! And the doc didn't even order any tests to check what was wrong with me that week and why I was so ill!!! No chest X-ray no bloods no nothing.
Anyways, it was time for me to lower the dose of my prednisone from 7.5 to 5 mg so I did that and I stopped taking plaquinil... I wanted to test this theory of being healthy and imagining it all. It's been almost a week and I only had one really bad day where actually my hands hurt for the first time I'm my life... but other than that I can't say it's any worse or better than before the meds.
I try to tell myself that there is nothing wrong with me and that I'm healthy and I want to see where that leads me.
Did anyone go through a similar experience? Could this really be I'm my head? Was I led to believe that I had this condition and the symptoms just started to take that form?
I know that emotional pain can lead to all sorts of physical issues. I do have my personal life struggles that get me down at times but I don't think it is so powerful to cause all this physical agony?! And when u r sick and can't walk and always feel tired you will get depressed no matter how happy of a person you naturally are... I'm so confused.
I will make an appointment with the Rheumatologist now and see what's next...but if anyone out there has a similar story please do share...
Gentle hugs to all
Izabella
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Izabella81
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Izabella report that dr to your practice manager as they don't know what they are talking about. Yes contact your rheumy and get to see them asap and get them to contact that ruddy gp and put them straight darling. If you have the flu it will knock you sideways and it will hit you harder as you have ra and it will take longer to recover from. Go to see your chemist and see what they can give you with your meds and don't stop your meds from the rheumy as it will interfere with your ra . Hugs darling.xxxx
Your doctor says you are healthy. What exams and test has he done? Has he checked your thyroid function and hormonal balance? With all your symptoms there is something going on for sure.One thing you can always do that you don't need a doc for is leave out gluten from your diet,helps many, and take high doses o vit.D together with K2. High dose of vit B3 ( niacinamide) is also good to take, takes your stress down and calms symptoms.I can well understand your frustration. What seems also to be a fact that sero negative RA is much harder to treat with Dmards. I hope you will soon get something working for your pain. xxSimba
Oh bless you, Izabella. Your GP did a brief exam and decided on that basis alone that you were depressed but healthy? An eminent Rheumy has done tests, examined you and diagnosed RA. That is lousy rotten luck and I'm sorry you have to live with it. Your GP is totally wrong. If you are with a group practice make an appointment with another GP in the group for better treatment and talk to the practice manager about this doctor's behaviour. Maybe a call to the rheumy or NRAS helpline would help ease your mind. Huge gentle hugs
Hi, From being in my twenties (now in my 60’s), I experienced excruciating neck pain and headaches from this pain, along with symptoms of vertigo and this would leave me feeling down. I was back and forth to the GP who sent me to audiology, but then became dismissive of my symptoms. On one occasion as I was leaving, the GP commented “I dread to think what you will come in with next”, which has remained a comment that stops me expressing properly how I feel when meeting professionals. On going into the menopause, I experienced anxiety and depression, which was treated initially with antidepressants and then HRT which solved the problem. Because of the anxiety and depression diagnosis, I felt symptoms of RA (neck problems) were not taken seriously and as I became really unwell, one GP said could I not go back to work and ask to do something different, another on asking if he thought it was a flare of arthritis, just stared at the computer screen, looked quickly at me saying, I wouldn’t think so. Things speeded up very quickly after this as the feeling of being really unwell was prevalent at this time too as well as pain. My husband, so worried bundled me in the car and I saw a registrar ( GP in training), who asked what I thought it was. On saying Arthritis, she asked if I knew anything about it. I did, was a nurse and aunt had it. Sent for blood tests mid week, by Friday informed tests showed borderline sero-negative RA. Was referred to Rheumatology and I have to say never looked back. Although things not tickety boo all the time, I received the right treatment. When I found NRAS online, I actually cried with relief as there were people who not only understood, but we’re experiencing the same. I have never told my story before, but I continue unable to be truly honest at consultations because of past experiences with GP reactions and cannot shake feelings of it’s in my head and just get on with it. I’m writing this in the hope that your experiences will not stop you from being honest with GPs and to keep on returning until you get the resolution you need. Take care. Candy
Well Candy I for one, am happy you shared your story. The sad truth is , even when you are seropositive GP’s can be WRONG.
Mine kept changing my meds and stopped testing. He insisted it was Fibromyalgia. I literally refused to leave without lab requisites. I also insisted that if they came back negative I wanted an MRI. I also brought my spouse with me. It is important to have a witness. They are not willing to risk refusing. Fortunately the labs were eye popping . Since that date July 2015 I have been to endless specialists and a Miriam of tests. Trying to get pain management is more problematic now than before.
Ironically, he use to prescribe OxyContin 250 at a time for more than fifteen years and now he worries about addiction, seriously. The good thing is I have always been very good at managing pain and drugs. I stopped all opiates and drugs for months. This is with CRP of 85. I also refused Prednisone. It is my way of controlling the situation. I do not recommend this approach but works for me. I have been compliant for two years , mostly, lol but am saying no to drugs yet again. My body simply does not respond well.
I , like many of you, am tired of defending myself. The truth is they are frustrated. They feel powerless to help us.
You have managed pain the same as I did, after being prescribed Tramadol and codeine, to which I had a terrible response to, I stuck to Paracetamol and anti-inflammatories. Offered morphine on one occasion after diagnosis by the same GP who commented, what would I go in with next! I declined. I do think GPs do not know enough about RA and once referred to Rheumatology they will always refer back to them. I’ve just downloaded the app RheumaBuddy which is now helping to document my days. Please stay strong and get the treatment you need. Don’t let it cloud your judgement as I did and still does. Candy
If you do not use Fitbit I recommend it. I track all tests, drugs, genetics and now biometric data. I also avoid all Natropaths Ext I have enough education to navigate research on my own. I cannot afford outside help. I also avoid all excess. Whole foods and clean air ( air defender) and monochromatic light sauna is working for me. I STRESS for ME. I am NOT recommending anyone else follow my lead. Everyone needs to do what works for them. For many MTX has been life changing. If it worked I would continue taking it. What I do strongly recommend is being an active participant in your own health care. Trust that you are the expert when it comes to your body. Learn to communicate effectively with your doctors. They are not mind readers they only know as much as we tell them. They do not know what to look for unless we can direct them. So I am trying to learn to listen 👂
Believe me, meditation is the biggest challenge I have faced. Being ADD, triple A whatever the label, relaxing not my strong suit. The universe Rae gave me no other option. Perhaps when I have mastered it life can begin again.
Hiya Izabella. It sounds as though your GP has confused you, but what you need to be aware of is he's not your Specialist, your Rheumy is so you do not stop your meds because your GP says you don't have RD. What your GP is seeing is the result of taking your meds, that your hands aren't inflamed because of your specialist meds. A GP doesn't have the in-depth knowledge or experience of specific conditions, they're General Practitioners, this is why they refer on to Specialists as they have maybe only two weeks training in any one condition before becoming a GP, in this case Rheumatology. That could have been many years ago, depending on the age of the GP, so any knowledge that he gained there's a chance less is recalled than it did when he first qualified. Did it not occur to him to check your records either, look for the reports from your Rheumy confirming RD, the prescribing of DMARDs & such? That would have given him all the info or confirmation he needed. Can I also suggest you don't see this particular GP again, choose another the next time you need to be seen. You're probably best making appointments from now on with the GP who referred you to Rheumatology. Seems to me he/she is more on the ball with autoimmune diseases, or at least is more clued up than the one you saw who said you didn't have RD because your hands weren't stiff (?!) & that pain was causing depression. So you're a picture of health with pain & depression, I don't think so. As you quite rightly say your Rheumy is a highly respected professional with many years of experience, hang on to that & dismiss what your GP has told you.
By stopping your meds you're risking going into a flare so please try & wipe what you've been told from your head & reinstate them. Can I ask, is your Rheumy aware of the pain you're in? If you've not told him then please do so, ring today or if you can't do that contact your Rheumy nurse, you should have been given the number of a helpline when diagnosed. It sounds as though you could be undermedicated since your MTX was stopped & your meds could need some tweaking if you still have disease activity going on. Have your feet ever been examined? I ask because they're not included in the DAS 28 they're often ignored. Mine were for 2 years & it's caused many problems.
If you would like to speak with someone today about your confusion & concerns please do as Gnarli suggests & call the NRAS helpline today, they'll confirm what we've suggested & ease your mind... Freephone Helpline: 0800 298 7650.
get second opinion hun I got told pain in my legs was cos I was to fat until I had to be carried into the doctors ask for a inflammation rating test its meant to be normal between 6 and 14 hun mine was 325 at its worst hun don't take no crap with you doctors would be out of there job tell them what you want they wont like it but be assertive
GP's are not the experts in RA (unless they have a special interest) and many of them do not understand the fluctuating nature of the condition or the complexity of the symptoms.
Definitely call the help line. I was diagnosed with anti-ccp positive RA in 2016 and put on triple therapy which I couldn't take. After a horrendous year of pain I have now been told they think I may not have RA as despite bloods and symptoms they can't see any inflammation. The rheumy does at least say he believes I am in the pain I say I am and inflammation was noted early on but not now (odd as I am worse now)
I have the opposite. All my GPS are convinced I have it. I'm now on pain killers and nerve pain drugs as there is nothing else they can do.
When my symptoms first started I went to see my GP. A few years before I had to see an out of hours GP at my hospital because I had terrible pain in my shoulder, really painful, couldn’t move my arm at all. He thought I had RA and told me that if it ever happened again to go to my doctors to get tested for it. So, I asked my GP to do a blood test for RA ....his reply.....let me look at your hands....no, you’ve not got RA. After several visits and getting nowhere, not even pain relief prescribed I was getting desperate and ended up going private and yes, I’ve got RA, sero positive so it would of shown up in a blood test. The consultant did say that GPs get about 30 minutes of training on RA.
It’s really such a complexed illness and from what I’ve learnt these past few years it effects people differently. I’d really push to be referred to a rheumatologist if I was you, can’t understand when the doctors who first thought you had RA didn’t refer you then. X
I once saw a GP who told me that the pains in my ankles were due to my age! He had not looked at my records, not examined me, not done any blood tests (or even listened to the history given). He got a right dressing down by me, I can tell you, and I don't think will EVER tell anyone it's their age again. OK, he was tired, not paying attention and just looked at this poor old woman staggering into the surgery, but that was just not good enough. Everyone has their off days, but sometimes they just get lazy thinking.
I had a similar problem. I think the issue is more common than folks think.
I was in absolute agony for well over a year. All my toenails fell of and I got bilateral achilles tendonitis. I was so stiff I couldn't roll over in bed, or get out of a chair. I was once helped up by an eighty year old lady!
After traipsing back on forth to GP I finally demanded a referral to rheumatologist. Her response...`we are not at that stage yet!`
Don’t let them question yourself! Talk to your rheumatologist. I suffered for WAY too long and should have pushed more then I did to be diagnosed. Its your body, you know what’s going on, and my answer is “no” - I’ve decided that if you question yourself if this is “real or in my head” then that means it’s not. Anyone that questions themselves is hoping against hope it isn’t true. I hope you feel better soon and put in for a new GP.
Your gp is a moron. I’ve had R.A. for 20 years. I have flares. When it’s under control I have chronic pain fatigue that changes from day to day, but livable. When I flare I have swelling and pain in different joints not always my hands with extreme fatigue, headaches sore throat, and low grade fevers. R.A. can be vastly different from patients. Mine is secondary to adult on set stills disease. Right now I’m taking plaquinil and steroid shots and pain meds. I can no longer take nsaids over the counter or prescribed because of ulcers. My treatment and degree of illness changes a lot. Feel better. Get a new gp.
Please be careful I was told by a orthopaedic consultant it was all in my head as my tests as came back negative . He told me to stop all medication man up and be positive . Within 6 weeks I was wheelchair and housebound . My own doctor had to come out to visit me and was mortified . It took another 8 years to get a full diagnosis of AS and zero negative RA now OA as well and I did a lot of damage to my lumbar spine and pelvis as I didn't realise . Be guided by the consultant they won't give you that medication if they did not know your condition . Please call and speak to the rheumatology team 🤗💐
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Got to get my head round all this
My RA and me.
All in my head?
To all my RA friends. 
I'm new. Think I'm having my first RA flare.How long does a flare last?
