Please can any other RA sufferers advise or offer any explanation as to why my X-Ray's of my hands & feet do not show any signs of RA? I was diagnosed in April this year with RA and am on 25mg Mtx and also on sulfaselazine & gabbapentin which has helped a little with the pain but my feet and hands are always painful and have to take painkillers every day to help me get through the day. I asked my gp if I could have X-rays taken of my hands and feet due to the pain, stiffness and swollen feet I have. The X-Ray results have apparently come back saying no evidence of RA? Although I have not seen the X-rays myself as it was a receptionist who rang to tell me. I am at a loss as to why nothing has shown up and I am now questioning whether I do indeed have RA? But was told by the consultant after having lots of blood tests that I definitely did have RA. I am so confused as my feet seem to be getting worse every day. Do you think I should be asking to see a podiatrist for further input and advice or go back to my RA nursing team to see if they can help? Many thanks for reading my post and appreciate any comments at all.
X-Ray's of hands & feet with RA: Please can any other... - NRAS
X-Ray's of hands & feet with RA
I am 63 years old and was told at age 19 After falling down a lot that I was indeed an RA person. I have endured many surgeries on my bones. My bones break real easy for 6 years. Hopefully that has slowed down. But my feet are messed up bad. To put my feet into shoes is like it is a jail for my feet. So much pain.
Hi dianalm - might you consider Crocs for shoes? The toe boxes are large and comfortable. Just be aware that they can slip and when you turn on a "sticky surface" (like a tarmac) they can stick.
I was the same as you - no evidence of any problems on xray however, consultant sent me for an MRI which showed numerous bone erosion in feet and inflammation.
Sometimes xrays don't pick up what's actually going on. I constantly felt that my feet had been hit with baseball bats and thankfully i have a really good consultant who listens.
Good luck x
It may be that, despite the pain, your meds are doing their job and holding back disease progression in your joints?
I had my diagnosis 5 years ago and have been on salazopyrin and, more recently, mtx. The pain, swelling and stiffness is much better, in fact better than I've ever been but my feet look awful! X-rays are normal though!
Hope you feel better soon from the pain and stiffness. Love, Ally
Hi there- I have RA in my hands and feet and the initial xrays and ultrasounds of them showed little except some inflammation in my fingers. On that basis, two locum rheumatologists told me I didn't have RA. Eventually, after many return visits to my GP and various strong painkillers having no effect, I was seen by a third rheumie and he couldn't understand why I hadn't been diagnosed immediately as my anti-CCP blood test was so high. Anyway I was put on MTX, sulfasalsalazine and hydroxychloroquine and two years later am now officially in remission (yay!). I've stopped the sulfasalazine and am still well after a couple of months off it. I hope, with time, that you will get the same outcome. By the way, I did visit a podiatrist before I was officially diagnosed and the insoles they gave me for my shoes did nothing for me, but I do know they can be very beneficial for some.
As you are fairly recently diagnosed, you should be getting monitored regularly by your rheumie team, so bring up any concerns at your next visit (or phone the rheumie nurse if you aren't due an appointment soon, as they'll be able to give you advice, and maybe get you referred to the podiatrist). My feet are not pretty any more, but I've slowly come to accept that.
All the best!
Hi there and welcome to RA, im 5 years ahead of you and im 56. What they are looking for is specific RA indicators and the fact that they didnt find any is good news for you and i hope it continues that way for as long as possible. Quite simply there is no cure for RA, but it can be slowed, in some cases slowed so much that it MAY not encroach on your life horrendously, some believe it can be stopped but im afraid i havnt seen enough to convince me. The evidence shows that the earlier RA is caught is one major factor, the other is finding a treatment that you respond to. It sounds to me my friend like you have both of those. Pain during a flare can be extreme, i will tell you the truth,im afraid i am brutaly truthful and many dont like me for that, but thats how ive always been, im often regarded as heartless, unsympathetic and rude but not by those who truly know me, so heres the truth i have broken many many bones including multiple fractures of tibia and fibula (6 in one go), i will tell you that a bad RA flares is the single worst extended pain i have ever experienced, it can be like a cross between the agonising cramp you can get in your calf in the middle of the night and putting your hand in almost boiling water and no pain killers will stop it. That pain is due to nerve reaction to the inflamation that is occuring and the pressure on and around joints, it can be so bad in your hands that you cant turn a key in a door or put your hand in a jeans pocket. X rays that dont show anything dont mean nothing has happened because they presumably do not have an x ray of your hands 6 months ago, so they are looking for the specific inflamation indicators and now they have a base line x ray that can be compared with future xrays if needed which may then show a difference. I really hope your experience of RA continues with few symptoms or none and than meds slow it drastically until better solutions are found, it seems that most symptoms are likely to be turned of by nerve blocking in the future as a dutch team have had massive success with implanted electronic neuro blocking technology quite simply turning of the bodies reaction to stimulus, but not removing the disease. Best thing you can do in my humble opinion is to listen to your medical team and make sure you are getting the follow ups you need, for your iwn imput i would look at your diet, i found the biggest difference was by cutting out ALL processed food, a difficult diet if you share your life is shared with others but trust me chicken breasts do not need a mix of flavour enhancers preservatives and solidifiers, they can just be chicken breasts, that is an extreme example but there are "chicken breast shaped pieces" that have more ingredients than a christmas cake. Beyond thst be gentle with yourself but exercise as much as you feel you can AND REST. RA is exausting and you CANNOT ( in my opinion) punch yourself through it aggressively, of course you must be mentally positive and determined but dont physically drag urself through a marathon because you WILL suffer and you wont win like that. I really hope you find RA a breeze and that in 5 years you tell me it was a lot of fuss about nothing, stay as curious and determined as you are and LISTEN both to your own body because no one is a better expert on your RA than you and even listen to idiots like me with an opinion, you can disregard anything you hear, but you cannot disregard anything you dont hear, in the words of DESIDERATA (google it) " listen to the dull and ignorant, they too have their story". Good luck my friend.
Thank you Leon for your time and trouble in replying which I am grateful for. Your comments make sense and I will heed your advice especially with having more rest which I find hard as I am 55 and have led a very active life up until 18 months ago. I work 30 hrs a week tues-fri and come fri tea time I am exhausted, it takes me all weekend to recover! Diet is an interesting thing you mention and I am going to cut out refined sugary foods and anything processed plus I am going to cut down on gluten to see if that helps. I am going to speak to my rheumy nurse and ask them if USS of my hands and feet would be beneficial as I know something is going on that the X-rays do not show as I feel my gp just dismisses the pain I say I have as she says my X-rays show normal hands and feet! It's all very frustrating but we must all plod on and hope the meds are helping slow down this dreadful disease. The implant sounds amazing and I did see that documentary on TV a few weeks ago and a patient with RA felt so much better. Fingers crossed (if your fingers allow!) this technology advances to the uk. Take care and appreciate your input. X
I was invited onto that trial but i was homeless and unable to get credit to check internet or reply and no way to get to the library to check my email for free, so i did not reply in time. I still have my name down along with thousands of others to go on the next trial or the next phase of the trial. Exercise is good, trying to push through pain is not, at 50 i was a workaholic and often worked 100 hours a week, barring physical injury i never had a day off sick in my life, within 4 months of the first signs contracting RA which was a chest infection i was on statutary sick pay of £70 a week and no other benefit , unable to walk, i lost custody of my son aged 14 after 8 years of having him, i lost my home, effectively (although then on sick pay) i lost my job. I lost the ability to drive car or motorbike after 33 years of unblemished driving and i ended up in a tent under a flyover i was unable to get to my doctor or a chemist and in any case had no money for scripts for meds, eventually someone sent the salvation army who picked me up, literally, and got me in a hostel, from there to a bed and breakfast, eventually after twice being declined and going to a tribunal 2 years later with the help of a wonderful social worker i got esa priority group and high level DLA now PIP, on my PIP assessment i scored 41 out of 12 for care. I now have my own purpose built flat in whats called an extra care facility where there is "supported living", i have a power wheelchair and a profile power bed and easy chair both of which are a god send. I have no useful use of my legs and my hands only have a part working thumb on each hand and the side of an adjacent finger for grip, on a good day i can pull the polythene tab of a one litre milk bottle, on a bad day i cant open or pick it up with 2 hands or evrn get to the fridge, on a goid day i get showered up and dressed for 6 hours, on bad weeks i dont get up at all. I take 218 doses of medication a week and heaps of that is morphine but i refuse to be "morphed out of my brain" so i tolerate some pain except twice a day when i dose up so i can sleep for 2 or 3 hours every 12 hours if im lucky. That is how bad or worse RA can get, i am exceptional and very very unlucky, my consultant uses my stats to educate students and gps hoe bad RA can be, he says my bloid results are the worst hes ever seen by far and that the speed and severity of my onset are so fast that he would not believe it if he had not been treating me. That is an example of worst scenario of what RA can do to a 17 stone 6' 3" very fit healthy man in weeks.
Reading your story, I have no word but just feel for you of your situation. I am glad that at least you have a place to live and a wheelchair to move about now.
Living with RA, the pain is already killing us. Having lost the custody of your son and jobless made life even more painful for you. My darling, I can only say that you are a real strong person in life though you have nothing that you can hope for but great pain but you still continue to life on.
Once the pain made me depressed and I was about to commit suicide to end the pain that I had. But when I thought of my son, it gave me the power to move on again.
Do feel free to share your feeling if you need to. We will be here to give you the moral support needed always.
Thank you so much for your kindness and support. I was unlucky to fall through the gaps in the benefit system but it was just unfortunate, i had to send my son back to his mother as i could not look after myself or him, i know spend any time i have and any spare money that i dont need to live on helping a few deserving people where i can, i have a very mobild 82 year old friend who helps me and often they have no idea who has helped them and we like it that way.
Good to know that. Do take good care of yourself. Life is just too short, we should just enjoy what we like to do during our good days.
I am lucky that I am in remission after about 1 1/2 year of RA diagnosis. I hope I can continue to maintain the same. I will take a lot of rest if I can.
Wow. Deep respect, Leon. Relieved to read you have a sanctuary now.
I too had incredible pain of kind described by Leonwp for the first year when RA was diagnosed. I could barely use my hands and wrists at all for pain. I spent one night screaming silently into my pillow for pain in the ulnar part of one wrist - like having a chisel hammered in between my index and pinky finger down into my wrist. But MTX and Hydroxy eventually kicked in but it took 6 months at least.
All X-Ray's over five years and one ultrasound a year ago have shown nothing at all so my rheumy called it non erosive RA and I came off all RA meds. Still suffered terrible fatigue and bad widespread neuropathy / pins and needles and now tinnitus and swallowing problems along with some sicca.
Then a new rheum said not RA although might have been five years ago and called it polyarthritis unspecified. Asked him about non erosive and he said this is increasingly normal as aggressive treatments start early in the disease when most damage likely to occur - said I didn't have a connective tissue disease but wouldn't/ couldn't explain my very high ESR or neuropathy (everywhere including face).
Then went to a third rheum and bingo - antibodies showed up once off RA meds and steroids properly and lip biopsy showed positive for Sjogren's. Apparently this can mimic RA pain and erosion but shows little swelling and is often less dramatically erosive. So the RA is secondary to the Sjogren's but pain just the same.
On the other hand, as others have said here - RA can take a couple of years to show up in X-rays as erosive damage - MRI is more reliable.
Oh bless you, having been through that pain it makes me almost weep to think of someone else suffering with it, i can stand pain far more than i can bare to see others in pain, especially children and animals
I was particularly interested in " it seems that most symptoms are likely to be turned of by nerve blocking in the future as a dutch team have had massive success with implanted electronic neuro blocking technology quite simply turning of the bodies reaction to stimulus, but not removing the disease"
I read an article by Camilla Cavendish in The SundayTimes nearly on 28 December 2014 which described this discovery the previous week. I have a copy of it on my computer but cannot attach it. I do not know how to link it.
I first tried electro acupuncture the following March and it relieved swelling, pain and above all total disability in my hands - the first time after 35 mins which lasted for 3-4 days. The same thing happened the next week. I had a course of it (and also had Chinsese herbal tablets) and both brought immense relief. I was disabled as you describe in your comments.
What I am wondering, and did at the time, was whether this discovery is similar to, or based on, electro acupuncture. I did wonder at one time whether they had copied it. I have wondered how electro acupuncture worked and assumed it dispersed the inflammation.
I did refer to this article on here previously and it was deleted, I think doing a great dis-service to many readers. A couple of regular bloggers seem to take extreme offence to the fact that I mentioned it - demanding that I link it and it was not her job to search for it, but it is the public domain for anybody to read and ought to have helped everyone on here. They also wanted details of trials on Chinese herbal medicine in the treatment of rheumatoid arthritis. These were conducted in Korea (and also the US) and came out very favourably in comparison with methotrexate.
I think the site reaction is down to people oushing things for commercial gain, i suspect you were mis understood, this was a trial in a university teaching hospital dept in Amsterdam, i applied to go on the trial and fitted the criteria but was tooblate to make the list, i have asked to be considered on next phase, they report good response from ALL patients with some showing 100% remission whilst treatment continues although obviously it cannot undo damage done. The way i understand it works is roughly this, but dont expect me to be exact. Their theory is that regardless of the T cell variations that concern the immune system mix ups the physical joint destruction is the most debilitating and disruptive effects of the disease and these are not caused by a mis function they are the correct reaction but a wrongly triggered one, ie the body is reacting to damage or disease or infection that isnt there, this causes incorrect nerve signals to be fed to the endocrine system which kicks of the bodies normal defensive reaction, that directs lymph to local sites causing swelling and inflamation which then becomes a self fullfilling cycle of swelling, reaction, inflamation and so it goes on and cannot improve because there was nothing to trigger the reaction in the first place and the body is constantly recieving signals to fix what isnt and never was there. This cause hyper activity in the immune system and as there is no "positive" result it keeps firing and firing and reacting to these false signals in multiple sites. Sorry my explanation and interpretation of what they said is not very good, i understand it better than im explaining it but that doesnt help you. Basically they are saying a lot of emphasis is placed on stopping this reaction but the reaction is NOT wrong in anyway, its the factors triggering it that are wtong but to try and treat the bodies correct reaction to a false stimulus is pointless and harmful, but yes of course their has to be and must be work to stop the false triggers/signals, but they are addressing blocking the nerve system that conducts that stimulus, so what they did was to insert a pace maker kind of device which is "wired" into the carotic nerve plexus in the upper left quadrant of the chest just below the clavical, and by blocking or interupting this nerve plexus they are stopping the signal from ever reaching the part of the brain that receives the false stimulus and fires up the reaction, therefore although the triggers are still being fired wrongly the perfectly normal but un necessary immune system firing doesnt occur, so no swelling no symptoms of infection or inflamation, no pain, no redness no heat, no exaustion because your body is permanently firing up trying to fight something that isnt there, so no over production of hormones and targeting of lymphatic system constantly throwing your immune system into hopeless overdrive.
I have tried my best to explain my limited understanding of something i dont fully grasp but i hope that helps. Leon.
Yes, I can fully follow your explanation of how it works and how the body reacts. I do, feel, however, that they have copied this remedy from electro acupuncture which seems to work in the same way. Fine pin needles are inserted variously at the point of pain/swelling (seemed to be random to me, though they are supposed to follow meridiens). Wires from an electrode machine are attached to the various pins by tiny clips. Electricity jumps from one pin to another and you can feel it stimulating/jumping. The first and middle finger of my right hand were stiff and almost jammed and after 35 minutes started moving.
What worries me slightly is whether this procedure is going to be patented because I seriously feel that it is a copy. It seems to me that so long as Western medicine discovers the "invention" then it is accepted by the NHS/various healthcare systems as authentic - and we will all end up paying through the nose for something that we could have had years ago in the form of electro acupuncture for very low cost.
The question that arises in my mind about how the body reacts is WHY does the body react this way. Some of my friends (microbiologists/virologists at a very high/university teaching level) are convinced that it is a virus that causes the body to react like this. I tried to raise various causes with two rheumatologists I have seen but they said they just did not have the time to consider these and had to stick to what had been established, though I may well be right.
I am still in a state of shock, having woken up one morning two years ago with my fingers jammed and my right hand virtually paralysed and the left following in quick succession - with other joints being affected in rapid succession, nodules appearing, swelling and just the sheer disability of it all.
No, I think one of the two who objected had a commercial interest as she used to work for a big pharmaceutical company and the other one seems to me to post a load of rubbish regularly.
The point about viruses is that they cannot be detected in the body in any sort of imaging or blood test and they can mutate. At least this will be an effective treatment even if it does not yet address the cause.
I wish you well in getting on the trial. I could try and mention it to my rheumatologist next month, but it seems as if it is light years away from being available as a treatment. I do not get a word in edgeways when I see him and he refers to my written notes as his homework. I intended to ask him before but did not get the chance, though he was very interested in the electro acupuncture and Chinese herbal medicine. There is just no time on the NHS as appts are strictly timed and very brief.
Many thanks for your reply.
It is undoubtedly based on accuouncture and similar therapies and they are not denying it in fact that is exactly what instigated the research but this unit is implanted in the body subcutaneously and run by a miniscule atomic cell similar to a pace maker and the technology is that it picks up the tiniest nerological electrical impulses firing in onr direction only and fires up to scramble that signal before it reaches the receptors buried deep in multiple locations in the brain, that is technology that has been developed from the bionics side of advanced prosthetics research and the availability of tiny electronic components, by chance and lateral thinking they tried putting it to different uses. The cost will of course initially be high to produce the unit and implant it under local anaesthetic but it will be cheaper than early pace makers and compared to drug costs of sum bio therapies at £35,000 per annum and the extra meds and treatments to attempt to control the horrendous side effects and the possible long term prognosis of using these intense chemo therapies a non medicinal neuro blocker would be a win win and win option. Obviously the existing sufferers of advanced disease cannot easily have damage reversed but the possibility of preventing that damage ever occuring in day one patients in the near future is a wonderful possibility. At the same time the advances on the horizon with stem cell therapy where they are aiming to be able to take your own T cells and the citronella group (that i cant remember what they are called) and by "washing" them and putting them back into your own body stop the auto immune firing wrongly is moving forward at a pace for rheumatoid, diabetes, ms and quite a few other conditions. These advances may appear slow but the very fact that they are pretty certain that they now know what to do and are now developing how is very encouraging. The goal of being able to stop these illnesses rather than trying to treat and reduce the symptons and the damage caused with a lifetime of toxic medication that causes its own mess is admirable and exciting. What you say about virus is i think very likely to be proved true, however my own opinion is that it cant be detected because it may well be a reaction to a "ghost" of a virus that has long since gone and that is why it cant be found and nor can the bodies immune system locate or fight it because it isnt there and that in itself causes the overdrive reaction. I can only theorise that this may work in a similar way to a vaccination but with negative results because the measles anti body for example only fires after being dormant if the measles virus appears which then causes the immune reaction and therefore minor or un noticable symptoms appear, but i feel the issue with RA is that the same happens but there is no viral problem to be addressed. Im very far from as clever as these people and dont even have A level biology, but i have always been able to problem solve where others would give up or not attempt the task, i can see that these theories could be right and if the xause is correctly identified i have great belief that a solution will soon follow. I have long had a suspicion if not quite a belief that the expanding prolific cancer occurence which now affects 1 in 3 of the population during their lifetime is going to be found to have s common cause that is in plain sight and has been so since around the beginning of the 20th century, i cant say if it may be a water treatment issue or an airborn problem, a pesticide or maybe even a food process but something that has been in common contact with most people in the last hundred years has caused the problem, if i was to guess i would say something like minute particles of heavy metals, maybe non stick pans or tin cans, who knows. But the fact that the more advanced first world countries have on the whole a greater problem and that it appears to go down in stages through less and less developed countries being much lower in the mediteranean countries and almost non existant in the more primitive tribes in africa etc is surely in itself an indicator that this almost has to be the case. Sure evolution is slow to change in itself but man made changes to genetics change rapidly, the best exampke of this i can think of is my own observation of the spanish population, in the late 70s i spent a lot of time in spain and at 6'3" walking through the local market i had an un interrupted view scross the heads of the locals, without exception they were all on average much smaller because not long before then soain was virtually a 3rd world country, however now, due i assume to 2 generations of better nutrition and health care in modern spain the teenagers indeed even the girls are much much talker and i no longer stand out. I had not noticed this change much until 6 years ago when in madrid when i saw 3 coach loads of spanish pensioners disembark, not a single one over 5' 6" and that was exceptional, many many of them were below 5'. Now if those are 2 generations of fast enforced noticable changes in one country, changes that happened in the rest of europe more slowly over 100 years what un noticed changes have gone on. We must surely be changing faster than any other animal has at anytime in evolution and changing un naturalky fast by our own hands. So is it any wonder that there are un noticed changes as well? or that our endicrine or lymphatic systems which developed over tens of thousands of years have failed to keep up with or adapt to some of the changes. There you go my rambling theoretical thoughts most of which are probably way off the mark, but all of them completely wrong?, i doubt it. Damn dont i go on, apologies one and all.
You might think you 'go on a bit' but I would rather read your musings than three quarters of the inane rubbish printed in the Newspapers today.
I am wide awake in the middle of the night, ( luckily jet lag from work, not RA pain thank heavens)
And I have found this thread and your story, thoughts and take on life both fascinating, touching and inciteful.
I think your first response to the original poster Caz3333 who is suffering with something we can all relate to in the journey of coming to terms with our disease - it's onset, effects and treatment will help countless others who come to this site.
Thank you for your time, I sincerely send you every best wish in these wee dark hours and everyday.
Thank you. Your explanation of this new treatment is very interesting and I do hope you will be able to keep us all posted.
I think there might be a bug somewhere as the cause of RA simply because it is classed as "auto immune" and, according to many I know who have studied these subjects, there is no such thing.
I wonder how long it will be before we all get to try this new treatment. I'm afraid I think a lot of the problem is the appalling unwillingness of the medical system to act quickly enough. It really can't be that hard to diagnose RA (and other conditions) and I do feel the medical services are dragging their feet on cost grounds. I feel they cannot be relied on and people really need to work out other remedies for themselves. I could not work (or do much else) for nine months and if I had sat at home waiting for the medical services, I would be incapacitated by now and probably homeless. It is not much thanks to them that I managed to recover - including waiting 6 months for an initial rheumatology appt, which I think is inexcusable and at the heart of many people's difficulties as conventional drugs usually only work in the initial stages (3 months).
I have just read your blog/reply concerning the outcome of Xrays on feet and hands, basically the evidence or lack of evidence of rheumatoid in joints etc. This reply of Yours is 2 years old, but is just as relevant and comforting to read today, October 2018.
I was diagnosed in 2010 in this very same way. I went through all the list of different drugs to try, like everyone else, and was doing very well on Etanacept when I moved out of England into Wales, with no records following me !!
( I have since discovered that it is the patient who has to ask for records to be transferred ),
At my new RA Clinic, I am going through the frustrating process of confirmation hat I do have Rheumatoid Arthritis ! Outcome of scan on my hands, just one middle finger joint showing signs of Synovitis !!
In truth, and in evidence, my feet bare the signs of change and destruction due to RA. Through years of sleepless nights of excruciating pain in my feet and ankles, particularly. Years of not being able to walk properly, not being able to walk to my nearest shops and back. etc etc.
No scan, no X-ray or examination of my feet, is as though it is proclaimed that feet are not affected by RA !!!!!
But, to be told that I probably have Osteoarthritis in my feet which is common because they are weight baring,
is like adding insult to injury.
But, your words, your down to earth evaluation of how we cope and live our lives with this most debilitating condition called Rheumatoid Arthritis, has lifted my spirits.
So thank you Leonwp, and I hope you are doing OK. xx
you need to have a ultra sound not x ray.
Thank you everyone for your time and appreciate all of your comments. It sounds like other RA sufferers have had similar experiences then regarding X-rays showing that hands and feet look normal when quite obviously they are not normal! I am a bit annoyed the gp did not suggest ultrasound instead and I am going to ask for that doing if at all possible. In the meantime will keep taking the meds and see if a podiatrist could offer any help and advice as my feet are very painful when walking even in sketchers which I have just invested in buying!
I see you have just invested in some sketchers. I have wasted so much time and money on various shoes and have found these a life saver for my horrendous feet. If you haven't already tried these, I can totally recommend their Go Walk 3 with go-ga mat insoles. They are such a relief I even wear them instead of slippers now! Check the Internet for the cheapest offers in your size as they can be pricey in the shops.
Best wishes (your foot experiences sound just like mine!)
I agree with nana. X-ray showed nothing wrong with my feet. Ultrasound showed that I actually had Mortons neuromas in both feet and that my foot pain had nothing to do with RA at all (confirmed by rheumie and foot surgeon). It took 18 months to push them to give me ultrasound though, and identify that ....
Unfortunately GPS- especially younger ones- have very little training in RDs......when I asked one of the GPs in my practice a question about Leflunomide he had never heard of it,didn't even look it up as one would expect, & told me to ask my rheumatologist!
As replies here suggest rest is a life saver....it's very difficult to just stop & relax, but over the years I have found flares subside much quicker if you don't just soldier on & try to ignore the pain.
I've had RA since 1999 & have had regular MRIs & they show very little joint damage....whether that is due to luck or Dmards I'll never know. But I do know you have to keep on top of things as GP's don't only lack knowledge of it, but are not interested either.
I hope things get better for you.
Following continual foot pain and xrays showing no problems I managed to persuade my doctor to get me an MRI scan on my foot. My Rheumatologist had insisted that because my bloods showed no active RA that I had no active RA. The result of the MRI very clearly showed active RA in the foot and a lot of damaged to one of the joints which I had been complaining about for months. They have now admitted that the bloods are not to be believed as I quite obviously have active RA and they are now treating me accordingly. Don t trust X rays.
Hi caz, I have had problems with my feet for a few years and just put up with it until it was so painful to walk as the soles of my feet hurt so much and I had a couple of fall's. Gp refered me to a podiatrist who straight away told me that I have rheumatoid feet ! She then refered me to a orthotist who I saw within day's. He explained that the soles of your feet have a fatty cushion to protect your bones but the RA as gradually pushed this under my toes so the pain comes from the fact that you are walking on your skeleton. Because the cushion pushes under the toes this also causes your toes to be pushed underneath each other ( my little toes both now sit under the toe next to it ) it can also push out from side of your feet causing bunions. I did have xrays which showed up nothing as well.
Hope that all made sense, it did when he explained it to me. I have now had insoles and support,s made specifically for my feet which replaces the cushioning. Linda x
Xrays will only show when damage has already occurred which of course is what is to be avoided by early intervention. An Ultrasound is a far better option as this shows "inflammation" ...I would suggest you speak with your rheumatology team and ask if an ultrasound would be possible but as you have been diagnosed with RA the Disease Activity Score will show how effective (or not) your current meds are. Ask what your DAS score is ( for more information about this visit nras.org.uk/the-das28-score
I agree with other comments and have had similar experience. Rheumatologists says great we have started methotrexate before irreversible damage has been done.
I'm just happy it was diagnosed before my feet ended up in a worse state as it goes my hands are already pretty much screwed up still 6 months into treatment :o( M x
If you haven't long been diagnosed with, I assume, blood tests. The x rays would show damage done to the joints. Be thankful that there is no evidence in the x rays., it means that at the moment there is no damage done. Remember to protect your joints, by not putting undue stress in them when they are inflamed. That means don't struggle to open jars, if you need to carry a bag, carry it on your arm rather than your hand. You are lucky that there is no visible damage, believe me when the damage is there it's not pretty. My fingers are bent, I've had one joint fused, and had 2 replacements. And that's just my hands 😏
Relax, enjoy your life and don't concentrate on the things that cause you pain right now.
When my disease was very active and I was having constant flare ups I modified my diet. I cut out citrus, apples and milk, which includes milk based products. It helped me at the time, but when I got pregnant I decided that my baby needed a full diet so went back on everything again. This caused no problem as the baby hormones were doing their job by then and suppressed my RA.
But maybe try modifying your diet, cut something out of your diet for a couple of weeks and then reintroduce it, see what happens. You never know 😊
Hope this helps you, I do wander a bit answering questions 😄
I also had ultra sound doneon my wrists which they said my RA wasn't active. I am in a lot of pain and cannot lift things.
Do you have wrist splints ? I find that when my wrists are sore resting them in splints for a few days really helps. If you don't, next time at your appt ask if you can have some, they need fitting properly so don't buy some off ebay !
I am no expert but my understanding of RA is an overactive immune system that attacks various and extensive joints throughout the body causing pain in varying degrees. These constant attacks eventually cause erosion and damage, the medication is to try and calm the immune system down, resulting in less aggressive attacks? I have had RA for 8 years and on mtx weekly injections and Hydroxychloroquine which have lessened the attacks, doesn't eliminate them but def less than before. Most X-rays I have had show little erosion which in my view is a good thing, the attacks haven't damaged my joints too badly yet. My shoulders are suffering calcification tendinitis which is linked to me RA apparently and I have suffered severe pain in hands and feet in the past but fingers crossed they aren't the focus of immune system attacks/ flares at the moment, mine travels around my body favouring different areas at different times. I wonder if you're having a type of related illness to RA in your feet and hands? I have had gout in feet and bursitis in my hips, both treated by my Rheumotoligy team at the hospital, maybe ask your team to explore if some thing related to RA rather than actual RA is causing the pain and if it can be treated? I have had steroid injections into affected joints and this has helped a lot. Good luck xxxx
My X-Ray too showed that my joints were okay. My rheumy told me that my joints were still okay. However, she said that even though my X-Ray was okay, my RF and CCP were negative, that did not mean I had no RA because I had all the symptoms of RA.
I was diagnosed in Jun 2014 and was treated in Jul. Early treatment would give me a good chance to go into remission earlier. Also she said that when RF and CCP were negative, that meant I would have a very good chance to go into remission and would maintain remission for long and less chance to have a flare up.
Below 2 very good videos that answered most of my concern. I hope them help you too.
Hi I ended up having MRI,and radioisotope (nuclear medicine ) on my body which then showed active inflammatory arthritis in all major joints, sever degeneration in my feet joints. the x rays showed very little if anything re this. Please get referred to the podiatrist as they can and do help. warmest craig
Having R.A does not always show damage or erosion to certain parts of the body .
You may have low inflammation in these areas.
Thank you everyone for your comments and links which I am going to look at further this evening. It does help to hear other people's experiences so you can explore other avenues and ask further questions with the gp and rheumy nurse. It just doesn't seem right in my opinion to just carry on taking all the RA meds and painkillers every day including ibroprofen without getting to the cause of the pain in my feet and hands and why I can't bend some of my fingers and toes. I guess it's something I will have to try and live with if its just the active RA but very frustrating especially having to carry on working almost full time with little chance of retiring any time soon! I am trying a gluten free diet for a month to see if this has any effect and also cutting down on sugar.
caz3333 I had the same problems regarding my feet. My rheumy just said osteo as I had no swelling. I deteriorated so badly The inflammation was shown by ultra sound and over a year that I was forced to go knocking on doors basically for help. My GP was fabulous and so supportive (Yours doesn;t seem to be so try another GP) I do have osteo in ankle 2 places a thickened posterior tibial tendon, and another 3 places in My long bone joining big toe osteo. I had an MRI and it showed up all damage. You could ask to be referred to MSK services through your GP.
I have not read through all the posts so hope I am not repeating them.
First, blood tests alone cannot diagnose or rule out RA: they are merely an indicator. It may be that your rheumatologist is right but as a patient I would feel happier with definite evidence rather than an opinion. One rheumatologist I saw diagnosed gout on the basis of blood tests, without any imaging, and he was wrong.
I think it very poor that your report said "no evidence of RA". It is not the job of a radiologist to make a diagnosis. It is their job to report what they find, not say there is no evidence of a specific condition. An x-ray will only show up evidence of RA in the form of damaged joints - and RA has to be pretty long-standing and severe to damage the joints to the extent it would show on an x-ray. An x-ray would show up osteoarthritis very clearly.
You would be well advised to ask for further imaging tests. A GP can certainly arrange ultrasound but some are not allowed to order MRIs which are expensive. I had an ultrasound on my hands (and shoulder, feet, knees). The sonographers reported synovial thickening in certain hand joints (knuckes, thumb base, wrist) along increased vascularity plus liquid effusions in main part of hands and wrists, plus severely swollen tendons which had popped out of the sheath to form nodules. The consultant radiologist found inflammation in the suprasinatus tendon and bursitis. None of them attempted to rule out or confirm any condition even though these are clear evidence of RA.
As regards the meds not working, I found that conventional medicine only worked on the large joints like the shoulder, knees, elbows. It had little effect on the hands. I don't know if others have found this but, on reading their posts, when they praise these meds, they all seem to refer to their knees but not their hands, wrists and fingers. I have also used Chinese medicine and found this particularly effective on the hands. My hands have seized up a number of times now and the Chinese herbal tablets I take have drastically reduced swelling and stiffness and pain the next day. Electro acupuncture has released my fingers immediately. An interesting point has been made by Leonwp regarding electrodes implanted under the skin - rather than repeat, I am replying to him direct.
As far as I know x-rays don't show RA. Only damaged areas, I think an ultrasound is the only way of showing RA. Hope this helps
I've gone through the same thing. My toes are clawed and are showing the "daylight" sign. My feet and toes are swollen too. My frist set of xrays said slight erosion on one of my toes. My 2nd set of xrays 1 year later said feet are normal.....
How can my feet be normal? My 2nd & 3rd toes are doing the Vulcan greeting sign of "live long and prosper" and they are clawed with bunions....these are not my normal feet!!!....so frusterating