New and terrified

Hi all. I'm 40 years old female with the usual busy life... trying to manage two boys aged 4 and 6 and full time job. about 5 weeks ago I woke up with painful and stiff hands and feet slight fever and felt exhausted At first I blamed the decorating the days before. Then my shoulders and arms started to be stiff and waking up in the morning became a nightmare. my trip to Gp and blood showed negative for rfactor and antiCCP. I got a referral to rheumatologist . 14 days I am still waiting, the pain and stiffness is not any better naproxen and codamol doesn't work. I find it exhausting to go to work and mind the boys. I have no clue what is wrong as have no family history of joint pains. does anyone know how long I need to wait for reum appointment? I Feel down, hopeless and utterly terrified :(

33 Replies

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  • Hi Anka,

    I can only imagine how terrified you must be feeling. You should wait no more than 18 weeks from when your GP referred you. This varies within the UK and you can usually see the waiting times on your local hospital website (google waiting times rheumatology and your area)

    If you are really struggling then have a chat with your GP again. It can take a while for naproxen to start having a real effect so in the meantime top up with paracetamol. I would also call or drop an email to the NRAS helpline. They may have other suggestions.

  • Thanks for your kind words. I'm still hoping it's not RA but the waiting is killing.

  • Darling once you get some treatment your symptoms will start to recede,there is life after a diagnosis of ra darling. Do the best you can when you can and let the other things go until you get sorted out. You are not alone darling we will always help you with any advice we can and if we can't NRAS will be able to give you answers. xxxxx

  • Thank you for your reassurance. x

  • It's very rare to have RA without CCP antibodies. What else did your blood show?

  • Hi. not much. it was a standard test done by Gp. all factors within the norm. The gp was puzzled too. but the morning pains and stiffness seems to be getting longer, hours at time.

  • It is evident that you do have an autoimmune reaction going on but it hasn't as of yet broken out in a clear disease. I have noticed that on this forum there are different treatments that rheumies prescribe in these situations. Those who start aggressively even tough clear evidence of RA does not yet exist and those who wait. Both of these strategies in my view raise questions that we as patients should discuss thoroughly with our doctors before deciding on the line of treatment.

    In the first scenario doctors follow studies that in fact have shown that Mtx may work best at this stage that clinical remission is more often achieved. These studies however also show that the mean time for remission is 9m-2years, whereafter no significant difference between the early starters and later starters. So you get results faster but you also start your med journey earlier with all its adverse effects that pay a toll on your body. The meds can also only be used a limited time, they eather lose their effect or the adverse effects make continuing impossible.

    Waiting for more symptoms of RA is deffinately not a very smart strategy. You really need to, at least try to do something in a situation where you are not well and most probably will be diagnosed with a disease in the near future.

    This is what mainstream rheumies have to offer but this does not mean that these are your only options as patients. If you watched the Betrayal series you have seen that there are lots you can do by changeing your diet, taking care of your microbiome, looking for inflammation triggers, getting grips of the whole picture with the help of a functional medicine doctor. Far better alternative than waiting and doing nothing anyways.

  • Thank you so much for the insight. I was considering alternative therapies, diet etc. I just got really freaked out reading some of the comments that rellaying on those and delaying traditional treatment could lead to joints damage. Is there anyway to know when the joint is getting close to have permanent damage?

  • If you do not have any inflammation markers elevated and no CCP antibodies you need not be afraid that your disease would have gotten to the point of joint damage.Take it easy and wait for your doctors appointment:) You can always in the mean time leave gluten, sugar and dairy from your diet. This often calms the symptoms😊 Take care.

  • That is not correct. Damage can continue silently, and in the absence of any RA or inflammatory arthritis markers. And only 60-80% of people (depending on which statistics you prefer) are anti-CCP positive, so its not unusual to have RA and be seronegative (negative for for anti-CCP). Diet changes are always worth a try but they won't stop the disease if it is truly inflammatory arthritis of any severity. A diet based on wholefoods, and removing any foods you have intolerances to will always improve your general health though. And it might help your arthritis, its absolutely worth trying. Just don't pay a fortune for dietary information that is freely available everywhere. There are no secret tricks or dietary changes that work for everyone. You can only do a strict elimination diet and try and find your personal triggers, if any. And you can do that for free. Starting on medication (disease modifying anti-rheumatic drugs) as soon as possible is always the best plan of attack. I hope you get an appointment with a rheumatologist soon.

  • I do agree with lilyak, diets will help to reduce inflammation and the pain in our body but we need medical treatment to put RA into remission. Diets alone will not help us to recover and will not stop the joints damaged. One should not be tempted to go for diets alone.

    Also, though there are a lot of side effects from using DMARDS, but not all users will get the side effects. For example, cancer patients take very much higher dosage of methotrexate than the RA patients hence they tend to develop side effects easily. Therefore we need to be very careful when we read the information online about the pros and cons of the usage of a drug. In addition, we will be monitored closely by our rheumy hence I suggest to work closely with and trust our rheumy instead.

    This is a long term battle, it is very dangerous to do otherwise therefore we should not ignore the treatment and pay to engage a diet program to cure our RA. We can get the many information about diets online for free. We are all individual hence we know what is the best for our bodies, a diet good for someone may not be good for the other.

  • Also you could try a book called No Grain No Pain. my dic had to give me Prednisolone steroid whilst I was waiting 8 weeks for RA Clinic appointment. so far I have had allergic reactions to all of the drugs so I am wooried about whats coming next. I started with RA in Dec 2015 its been one hell of a year.

  • I was attacked aggressively at the onset of RA. My blood test results showed negative RF and CCP, my X-Ray and ultra sound showed normal. However, I was diagnosed with seronegative RA. Refer the link below to have more details of seronegative RA to be in control of the situation.

    rheumatoidarthritis.org/ra/...

    My rheumy gave me 2 steroid injections to start with and mtx, arava and oral steroid were prescribed together. Early treatment will minimize joint damaged therefore we should not delay in our treatment just because of the side effects that may or may not come along.

  • Hiya ! Ok so there's lots of reasons you could have sore joints not just RA. At the moment your bloods aren't showing the inflammation which is good although I bet you've seen sometimes it doesn't .

    It takes a few weeks on average for a referral so in this time see your GP and ask him for better painkillers if they are not helping , rest up in between work and kids as much as possible, keep a " pain diary" time, where it is , how long it lasts, is the area red or nite any swelling. Take photos of swelling. It will help the doc with his diagnosis which may not be RA , he will have to clinically exam you, maybe go X-ray or scans etc.

    It's hard but worrying will make RA worse so if at all possible try to take it as it comes.

    RA is controllable , peeps on here well we talk about things that we are unhappy about but most people get drugs and sorted so not chatting do much on line.

    Patience is a virtue in this game so if you don't get an appointment in the next few weeks go back to GP and ask him to speed things up .

    You never know sometimes these problems just disappear as fast as they come butbif not you have an appointment in the pipeline. And we are all here for you xxxx😘

  • Dear Anka22,

    Sorry to hear that you've been referred and hope that you don't have to wait long to see a rheumatologist. We have lots of information on our website about what to expect from your appointment ( nras.org.uk/3-specialist-re... ) and should it result in an RA diagnosis you will find lots of support both from the community here and from the NRAS team. If you wish to speak the Helpline, the free phone number is 0800 298 7650 or email helpline@nras.org.uk (open 9.30-4.30 Mon-Fri).

    Best of luck and do let us know how you get on.

    Kind regards

    Emma-NRAS

  • Im so sorry you have been put in this position, i hope you get a ngative answer soon x

  • As others have said there are other things that could be causing your symptoms, including things like reactive arthritis that usually goes away again. I slightly disagree with Simba1992 in that it is possible to get damage with 'normal' inflammation markers. I have naturally extremely low levels and recently ended up with some small damage to a toe because new GP refused to believe that my seemingly still 'normal' markers weren't normal for me. But then I've had RA for 6 years now, so this is extremely unlikely for you so really try not to worry that you are at risk right now. And you can certainly feel it, as in my experience the joint pain was different from the usual hot, painful & swollen joints.

    But please don't be terrified. The vast majority of people with RA respond well to treatment and go on to have perfectly normal lives. This and other similar sites aren't really representative as people generally only post when they have problems, and not when all's well. It is only a small percentage of people who have the evil types of inflammatory arthritis that are very resistant to any treatment and which cause nasty damage. I remember being equally terrified at first, but I'm totally fine now!

    Also remember that many of the drugs now used haven't been around that long, so there are many people who were previously treated with far less effective drugs and have sadly paid the price. And these are the often the horror stories you find on google.

  • True that there can be joint damage with very low inflammation but very improbable in the stage where anka22 is at present where RA is yet to be diagnosed and where CCP antibodies are not present. Where immunosupressant meds have not yet been used.

  • Yes, I agree, which is why I said it would be extremely unlikely...

  • Hi. Glad that you've found this site for some support. I'm in a very similar position to you - 40 years old, 2 kids and working, so know just how tough it is to keep going when you feel rubbish. So hard when you have kids as don't want them to worry. I don't have RA, but have a different form of inflammatory arthritis, Ankylosing spondylitis. Mine came out of nowhere and hit me like a freight train last January. It's a really scary thing to have happen to you. Really hope you are seen quickly. I've always found everyone on here to be a great support so feel free to ask ANYTHING. There's no such thing as a silly question.

  • Hi

    Sorry you are not feeling well. I went to my doctor mid August and saw a consultant last week, it may depend where you live. I have fibromyalgia.

  • Thank you all for the valuable information. I was very lucky to come across the site rather then be left to Google horror like stories. I decided to brace myself with a bit of patience waiting for appointment. In the mean time establish some diary, meat and gluten free eating habits -i have nothing to loose except of a few pounds ;)perhaps try some other natural supplements and therapies to help with the pain. I will post back the results of my regime. thank you again for the great support you are all aces!

  • A book you might be interested in that has very good information and I think for someone who just has dropped into the world of AI diseases, a big help. The Autoimmune Fix by Dr.Tom O'Bryan. You can get it through amazon. The best of luck😊

  • Thank you for the recommendation. O ordered the book already as it seems to be a very interesting read.

  • Hi anka22,

    I too am negative for RF and anti CCP. I was diagnosed 4 years ago. Five years ago after a stressful period in my life I could not get out of bed. Many of my joints were stiff and painful. So I understand how you feel.

    Push push push to get it sorted. Perhaps it's because we are not positive for the classic markers that things get delayed, I don't know. To top that when I do get a flare up nothing shows up in my bloods, so you need to be as vocal as you can.

    And perhaps you will be like me, I get joints flaring up but they leave no permanent damage to the joints. It's a HUGE plus but hells bells we still go through the stiffness, pain and fatigue.

    As for diets. I am a food scientist and I would suggest that you do not embark on an elimination diet, gluten free etc etc. Why? Well at the moment your body is under a lot of stress. Don't add to it by messing about with what you eat. Just eat a well balanced diet and keep hydrated.

    Wishing you a speedy diagnosis and hope you don't have RA and you can leave this Club.

    Joy

  • Thank you Joy. can I ask how did you eventually got diagnosed?

  • On the contrary the anti-inflammatory diet stresses your body less than your normal diet most probably. By calming inflammation and the overactive immune system your body is under less stress. The AIP diet is designed as a nutrient dense diet through which your body gets the best possible nourishment while it at the same time eliminates the foods that most often trigger inflammation.

  • Hi Simba1992

    What I meant was that while anka22 is in this 'stressful' period it's not a good idea to diet, just eat a balanced diet and as I say keep hydrated. Many people do not eat a balanced diet or keep themselves hydrated. They either think they do or just convince themselves that they do.

    Once she (mind and body) are in a better place then who am I to say what works for the individual works for the individual.

    I'm not going to get drawn into what diets work and what diets don't.

    If diet A works for subject A and diet B works for subject B then I wish them well.

    I take Omega 3 and that has really helped me with regards to fatigue. And about 8 or 9 months ago I started taking turmeric.

  • Hello joy_1,

    So very true, you need to find what works for you😊

  • Hi anka22,

    It took quite a few months to get a diagnosis.

    Initially my GP (who is a star) thought it was stress because as mentioned I had gone through a couple of highly stressful events just before I seized up. But then after a couple of months she referred me to my local hospital. I was seen by a junior consultant. In hindsight that was a big mistake as she said I did not have RA despite a number of joints showing inflammation on the x-rays. I guess this was down to my results coming up negative for various factors linked to RA in the blood.

    My GP got very annoyed indeed and sent me to a teaching hospital which is outside of my area and I was seen by the head of dept in Rheumatology. Within an hour he said I think I know what you have but I need to run some blood tests and take some x-rays (hands + feet). I left his office after being given a nice big steroid jab and within 48 hours I was back to my old self. This then bought time for him to run all the tests.

    I am negative for just about everything bar a couple of genetic markers. But that does not mean I have been through hell.

    So I would suggest you shout very loud and see the head of dept in Rheumatology. He/she is going to have a lot of experience under his/her belt and if like me you can't be pigeonholed he/she will pick it up regardless. If you get seen by a junior then ......

    Anyway that is my opinion.

    Joy

    PS I had a 3.5 year old son at the time - so once again can relate to how you are feeling

  • Thank you for your reply joy. just one more question, how did you get treated? are you still on medication?

  • Well in my case I was put on oral steroids and given a immunosuppressant to take. The immunosuppressant took a couple of months to start working (that I understand is the norm, guess it depends which one you are put on) so I needed to stay on the steroids at a fairly high dose till then. Once the immunosuppressant starts to do it's job then you can start coming off the steroids.

    All these drugs carry side effects but you can take drugs to counteract the side effects. for example the steroids gave me heart burn so I took heart burn prescription medication.

    If you have RA then it is also about looking after yourself. For the most part I don't take any painkillers at all because I exercise quite a lot. I swim and go to an aqua class 3 times a week. The pool offers your joints support so you can exercise quite hard and for me exercise brings a lot of pain relief.

    Hells bells I exercise more now than before I had RA!

    Try not to worry too much. I know that is perhaps a silly thing to say but it takes a bit of time to get diagnosed. Then time for the drugs to work, then time for them to get the dosage right for you. It's just the process you have to go through. But I always say thank goodness for modern medicine. Many of us would be in a very dark place without the meds. And down the road I am sure treatments will improve.

    Just make sure you get yourself a good Rheumatologist. One you feel happy with. Especially if you end up like me with one of the non standard RAs.

  • Oops sorry I did not fully answer your question. I need to stay on immunosuppressants for life unless for some miraculous reason the autoimmune disease (RA) decides to switch itself off.

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