Is RA what I have ? ( update )

Hi All

I am trying to find out what is wrong with me , I am 43yo female , I started to have aching joints quite a while ago maybe 2 years , from being a teenager I have always had clicking and grating joints hands, wrists, elbows, knees ,feet and jaw but didn't really suffer any pain with them , I have had a bad back since my daughter was born she is 20 now , all I can describe my aching and hurting like is severe toothache in my joints , I have had cortisone in injection's in my elbow for something that was diagnosed as tennis elbow , also diagnosed with plantar fasciitis in my right foot with cortisone injections as treatment , also been told I have hyper mobility of a lot of my joints , the condition Ehlos Danlos syndrome has been mentioned as my father died from an aneurism which is also associated with a type of Ehlos Danlos , the pain in my joints is becoming unbearable I feel so miserable and tired I don't know how long I can keep working like this I am exhausted when I get home from work and just feel like going to bed and crying I am struggling to do my job properly and scared of the consequences if I am unable to work but that is what I feel is coming if I don't get to the problem and get some treatment soon as I am a single lady that wold be impossible situation for me , I have been treated with cocodamol for a couple of years but when that wasn't easing the pain my GP put me on naproxen but only for a couple of months , I felt so much better on that but he is reluctant to put me back on it he says because of the stomach ulcers it can cause , I also have irritable bowel syndrome , I have had the blood tests for rheumatoid factor but nothing ever shows up I believe this can be the case even if you have RA in some cases , the pain I have moves around and affects different joints but not symmetrically one day it can be my right knee and left wrist and thumb the next it could be my right foot and left hip, I have stiffness in the morning in my feet legs and wrists it makes it hard to walk when I get out of bed and also when I have been sat down for a while then there is the constant aching on top of the pain and stiffness , I have been given an appointment for the bloods again im not hopeful that they will show anything and also an xray on my hips and lower back , the pain in my hip wakes me up in the night a gnawing ache that wont go unless I get out of bed which is difficult due to stiffness it takes me twice as long to go downstairs these days , at 43 I don't think this is normal ageing , any suggestions at what I should do are welcome , if I have missed anything please feel free to ask me , am I just not seeing the right GP I really don't know ,I feel like giving up my emotions are getting the better of me at the moment and I just don't feel I have the strength to fight on everything is hard work from getting dressed in the morning to making my self smile and pretend Im ok

Many thanks for reading my story

Leylia x

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26 Replies

  • Hi Leylia, I totally identify with what you're saying and whilst I can't offer much in the way of advice, I can offer empathy in the way you're feeling as a lot of the time I feel the same. At the moment with myself it's working or a social life...even having a life without pain or fatigue would be good!!! Work wins as I wasn't expecting to get a chronic condition at my age and need to work. I'm sure you will get lots of advice and support from others but remember you are not alone but with this condition you are often feel you are as no one can see our pain, you do also have to learn to fight your corner as it's a very misunderstood condition. The NRAS website and helpline are very good and have helped me in the past. Good luck and I hope you feel better soon :) x

  • Hi there. Sorry you feel like this. Basically when I was 21 I started waking up with sore hands and feet, mornings were worse! Went to my GP who referred me to see a Rheumatologist, had blood tests, bone scans, MRI you name it. Unfortunately, it did come back as positive. 10 years on, I'm still seeing my rheumatologist having blood tests etc. Your best bet is to get your GP to refer you to get tests done etc. good luck!

  • Hi Leylia,

    Sorry you are feeling like this.

    I agree you should push for a referral.

    Don't know anything about Ehlers, but some of yr symptoms are very similar to how my RA started. I initially had foot pain, then shoulder probs which was diagnosed as tendonitis. I've had exactly the travelling non symetrical pains you describe. I never had a positive RA factor test either, but was diagnosed after referral when my consultant ordered a special blood test - anti ccp, which came back positive.

    Best of luck for getting it sorted.

  • Hello you certainly sound like you have the symptoms. You need to explain this to your GP and have RA factor and a few other lab test ordered as soon as possible. The quicker the sooner you can get help. You might also may be able to get FMLA for your job if this continues. The pain and fatigue will require you to rest sometimes and fMLA will protect your job.

  • Hi,

    I agree I would push for a Rheumatologist referral and ask to have the anti ccp test. I have never had abnormal bloods and am R Factor negative but my anti ccp was strongly positive and that along with clinical signs meant I was diagnosed early. Good luck. Sx

  • Please see a Rheumatologist, you need to see a specialist

  • Hi there, I agree with what's been said, you need to be referred. I have sero-negative RA which means my bloods are always fine. My consultant treats my symptoms not the test results. I wish you luck & welcome to this forum x

  • Yes I agree with everyone. Only a rheumatologist can determine whether you have RA or another of the inflammatory arthritis diseases not a GP. Please push to be referred ASAP.

  • It sounds like ra but we cannot advise im sero neg and was refrrred anyway but doc thought it wasn't until they realised I had psoriasis then it all fell into place .. im getting there very slowly

    . Push for referral and if poss take someone with u to back up what u say. I have pprobably had this 12 yrs but only diagnosed four months xx

  • So sorry to hear your feeling so poorly , I can identify with you took 6 years of the same symptoms before I was finally given an appointment for rheumy after having neg r factor . The day I saw the consultant was a turning point for me and I was quickly diagnosed with seron neg rheumatoid arthritis , push to be referred I wish I had done it years before .. Let us know how you are getting on and welcome to the site regards Teresa x

  • Hi there, my sympathy with your symptoms which hardly make your present mood surprising. Im not a doctor but it sounds very much like havnt been getting the help you have needed but maybe this round of tests will show more. I certainly agree with other comments about RA factor but an anti ccp test is I believe a more disease specific indicator, however the description of where you are sounds like you are being treated for symptoms rather than the cause of them but in your doctors defense I guess short term treating symtoms is the only answer if he doesnt have a definitive diagnosis. Common sense says you cant carry on like this but again based on your post the way YOU treat whats happening to you doesnt need a label. If it walks like a duck and it quacks like a duck its probably a duck right?, so for the immediate future try finding the best solutions for treating your symptoms with what you can change, look at any diet/weight changes that you think might help, be honest with your self, I found along with many others on here that cutting out or reducing dairy, processed food, caffeine and alcohol certainly improved things, I kidded myself for years that smoking didnt matter, of course it did and finally with the aid of e cigs I gave up far painlessly than I expected and stopped my 20 a day 40 year habit which I might add made a considerable financial difference, end of lecture on that one you may not even smoke anyway. Easy to say in your circumstances but avoid stress at all costs and find a quiet time for yourself even for 10 minutes each day to switch off and take a deep breath. Try and learn some relaxation techniques that suit you, not all things work for everyone.

    As for your strength you have coped better so far than many would, unfortunately until you get a finishing line to aim at and then find out the next event its difficult to keep going but at the end of the day for now you have no choice.


    The very best of luck and keep us posted on your progress. There are kind people and a wealth of knowledge and support to be found on thjs site........and even the top sportsmen perform better with a cheer from the home crowd.

  • I too was diagnosed with sero negative RA. My GP was totally on the ball and as soon as I finished telling him how I felt he suggested it sounded like RA, and put me on Naproxen until I had seen a rheumatologist. He organized the appointment and within 6 weeks I was fully diagnosed and given a steroid shot which was to tide me over until the new medications(DMARDS) could hopefully kick in.

    I too had some non symmetrical pain choosing somewhere new to settle each day it seemed! I also had the terrible fatigue associated with this charming disease, but 3 years on I can honestly say that The kind of pain I suffered at that time has gone and hopefully will never return. I know that you'll probably be thinking," well that will never be me", but that's what I thought, so keep pushing for a referral to a rheumatologist as they are the only ones who can diagnose RA properly and prescribe the correct medications.


  • Just a thought have you had your thyroid checked ? yours are similar symptoms to myself, I thought I had fibromyalgia and several people suggested it too, but then someone said Fibromyalgia, Cronic Fatigue (CF) and ME are actually symptoms of Hypothyrodism. Clever Doctors know this.

    Luckily I had bloods done for my thyroid firstly and once I got to my optimum level of medication all my tiredness and pains, stiffness, getting up out of bed feeling old before time all fell away.

    I too felt I would have to give up my job.

    As well as checking your Thyroid bloods also look into vitamin B12 bloods as they can mimic hypothyroidism and consider vitamin D bloods also Ferritin and follate blood levels.

    We take D3 with added K2. (these vitamins have been a great help for my Husband and myself and when we stopped taking them some of our symptoms of stiffness and cramps have come back with a vengeance.

  • That is very interesting coastwalker, my Dermatologist has just done all of those tests on me because I have all of the symptoms mentioned.

    I like your comment 'Clever Doctors know this'! Fortunately, my Dermatologist doesn't seem to trust my GPs because he organises everything himself. I am waiting to see what the next step is. [I don't have RA, I have Cicatricial Pemphigoid and take the same drugs as you do]

  • Back before blood tests were routinely done, I have read that Fibromyalgia, CF and ME weren't known, Doctors just went on Symptoms only and you were treated accordingly. Your meds were upped until you were at you optimum level and were well again.

    In those days they used Natural Pigs Thyroid and it worked far better than today's synthetic meds, I myself am trying to persuade my Doc to put me on this, (you can ask for it on a named patient basis, so it can be done.)

    Now Docs rely on Thyroid blood tests that often come back from labs as normal even though the patient is far from feeling normal. There are many people out there with untreated thyroid problems due to blood misdiagnosis, of which I am in contact with.

  • I have sero negative inflammatory arthritis. My doctors treated me on pain and amount of heart and swelling and after ultrasound tests. Hope you get the help you need soon x

  • Hello Leylia,

    My advice is to try to see a Rheumatologist as soon as possible in order to get a diagnosis. It sounds as if you definitely have some kind of auto immune reaction going on and the "not "knowing" and worry you are experiencing will make things even more stressful and can contribute to the pain. You definitely need the Anti CCP blood test, which here in the U.S., only Rheumatologists order. You will get a lot of support here. Good luck to you!

  • Hi everybody

    Firstly I would like to say thank you for all your kind words and positive comments , I was beginning to think I was a hypochondriac with the pain moving around or just a major moaner , but it seems many of you have the same symptoms and pain , you all have given me the resolve to get to a diagnosis , I will have my bloods done and if still nothing shows I will ask to be referred so that I may get to the bottom of what is making me feel like this , fortunately im on a good day today , I do have good days but recently the bad have outweighed the good , will keep you posted if anything turns up in x-rays or blood tests ,

    once again thank you all for your quick and kind responses.

    Leylia x

  • Mine started out like yours where the flares lasted a couple days each and migrated to different points around my hands, feet, shoulders, knees 6 mos ago. And seemed to affect tendons and tissues rather than actual joints. The Dr sent for blood work and RA factor was high (151) but she told me I had Palindromic RA (look that one up) which was an interesting read and thought I could live w that if it kept moving and only lasted a few days but it soon developed into full blown RA and has taken away life as I knew it. Most all joints affected now. I've heard from many folks that their RA factor is low but they still have RA symptoms so its confusing to me. Good luck to you. I'm on 3 diff drugs to surpress immune attacks but none have worked yet. Started another tendon tissue flare on the back of my R hand last night and had not had one of those since last august when this took off. Still no rhyme or reason for any of this for me??

  • Hello Leylia, I just wanted to let you know that I can relate to your symptoms and I have both Ehlers-Danlos Syndrome and Rheumatoid Arthritis. Unfortunately it is possible to have both of them. I have sero-negative inflammatory arthritis too and it doesn't show up in my blood. The clicky joints, IBS, plantar fasciatis, hypermobility, fatigue, aching joints are all things that I had when I just had EDS (diagnosed at 15). As part of EDS I also have poor healing skin (tearing and bruising easily) and local anaesthetic does not work ie I need 3 shots of it before I can't feel pain. RA is a separate issue. To get a diagnosis for EDS my GP referred me, my sisters and mother to a geneticist at the hospital who diagnosed us almost straightaway. For the diagnosis of RA as others have said you'd need a referral to a rheumatologist. I hope this helps. There's lots more I could say about EDS, feel free to send me a PM if you want to know more! Fran x

  • Leylia - hope you work it out - you mentioned you also have irritable bowel syndrome - are you sure that's what it is? I have Ulcerative Colitis (similar to Crohns but restricted to the colon) which flares every now and then, and have developed an inflammatory arthritis which operates in a very similar way to rheumatoid, (but it isn't symmetrical, and no rheumatoid factor). The docs explanation is that it is effectively the same disease as my UC, but it's in my joints. Apparently up to 20% of people with UC/Crohn's develop an inflammatory arthritis. Google seronegative arthropathies for more info. Hope you find some relief from your symptoms, I'm around your age and spent much of the past 18 months with severely compromised mobility (luckily have found a med combination that works - now am much better, and mobile). :)

  • Hi Leylia, I have only just joined this group and haven't posted until now. I have read your post and have been so moved I had to respond. I have (had) hyper mobile joints, I have ibs, I am negative for rheumatoid factor and anti-CCP, I have wandering, often non-symmetrical pain, find it more painful to move after sitting down/lying in bed and have felt at the end of my tether. And guess what - I also have RA. The way I was diagnosed was being referred to a rheumy - him looking at my hugely elevated ESR and CRP blood tests and feeling the inflammation in the joints that were affected. I can't agree more with everyone else - the sooner you get to see one hopefully the sooner you will get a diagnosis. A rheumy can diagnose a whole host of joint/body disorders. Please please push for a referral. Let us know how you get on, we are all supporting you. :)

  • Dear All

    I have been to the hospital today how's that for good service I only booked my appointment this morning, I have had blood tests taken , I am being checked for rheumatoid factor , thyroid I know someone mentioned this it was already on my blood form and a few other tests which I don't really know what they are for all abbreviated on my form, I also had xrays of my hips and back so lets see what they turn up I expect to know in around 2 weeks ,

    further to my original post I would like to add I don't feel that my joints are swollen although did have a swollen knee according to dr a few weeks ago I couldn't see it myself though also they all look normal no lumps and bumps, somebody asked did I smoke the answer to that is not any more I kicked the habit with the help of an ecig and am now smoke free also the birth of my grandson six weeks ago keeps me in check with the smoking I wouldn't smoke around him my daughter and he live with me ,I am not particularly over weight I could loose a stone but then I guess most of us could . I will wait to see what the results of my tests are but even if nothing shows I will ask to be referred , as a young at heart 43yo I should not be feeling the way I do ,its only a couple of years ago I was able to go out with girls from work and show them how its done lol I want to get back to the woman I was, as you can probably tell I am feeling a lot more positive today , thank you each and every one who replied you have made me feel a whole load better and now I know I am not just soft , will post again if I find out any more about my tests .

    thinking abut you all

    Leylia x

  • You sound like you definitely need to see a rheumatologist with all that going on, and with the family history of ED.

    There is a lot of what you are talking about that screams ankylosing spondylitis to me, rather than RA, but that can be a whole lot more difficult for GPs to recognise as it is completely seronegative and doesn't usually have the obviously swollen joints that RA has. Things like the age at which it started (typically teenage), the multiple sites of tendonitis or enthesitis including plantar fasciitis (an extremely common place for the enthesitis of spondyloarthritis), the bad back (spondylitis always has spinal involvement), and the bowel symptoms (inflammatory bowel diseases are extremely common alongside spondyloarthritis). Check out the information sheets on the National Ankylosing Spondylitis Society website and if you think that you have "inflammatory back pain" along with all those other symptoms, then please ask to be referred to an ankylosing spondylitis clinic for assessment. Don't let your GP try to tell you its rare in women though - it may be slightly less common, but the ratio is somewhere between 1:2 and 1:3, so that still means a lot of women get it. Also don't let them tell you you can't have it if you have normal inflammatory markers. that also is very common.

  • I hope you find answers & find what will help you.

    Don't give up. Take Care !

  • Hi all

    Have had some results , My bloods didn't show much except that I am anaemic , the results of the xrays showed I have a twisted spine , I have been put back on naproxen today by my GP and he is getting me an appointment with a rheumatologist to do some more investigations so things are finally moving for me , thank you for all your warm and comforting reply's it means a lot that im not the only one who feel she is going through this and I know I am not going through it alone now .

    Leylia x

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